Say NO to Chemo?
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Topic: Say NO to Chemo?
Posted By: Karen W.
Subject: Say NO to Chemo?
Date Posted: Dec 29 2009 at 12:32pm
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In 2007 I was diagnosed with Breast Cancer and followed the normal guidelines. Surgery, Chemo, Radiation. In September 2009, my breast cancer had returned as Triple Negative metatasized in the supraclavical lymph nodes.
They started with Radiation to shrink the mass, which was visable to the eye. I am now healing from radiation and waiting to find the next step.
My first instinct is to say no to having chemo again. Tens of thousands of cancer patients have survived without Chemo and radiation. The methods they used made their bodies stronger without damaging the body. Doesn't make sense that God would have plants on this earth to heal us of disease. I don't want to kill my body and make my defenses weaker and more vulnerable.
I want my body to be able to fight this disease. I have switched to an 80/20 diet. 80% vegetables and fruits. I have given up red meat and eat only salmon or chicken once or twice a week.
I am taking supplements to rebuild my immune system. I am also using the Chi Machine and Infra-red treatments (dome and pad).
I have read the book by Dr. Alan Chips, "Killing Cancer without killing yourself"! With help from several therapeutic sources and God, he has cured himself of Cancer. There are many stories like this. Dr. Susan Day also cured herself with different directives. Both are definitely worth reading/viewing.
I wish I had taken these steps after treatment in 2007!
Has anyone else used any non-chemical methods?
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Replies:
Posted By: unklez
Date Posted: Dec 29 2009 at 2:11pm
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Dear Karen, I am sure there are some here who have used alternative therapies and cured themselves. There is no real data on whether the alternative path works but intuitively it makes sense to trust God and believe that he would have created natural defenses against cancer. Should you choose to go the purely alternative route, do know that the path could be hard with a lot of people telling you "I told you so" should you suffer a recurrence. DO share with us your knowledge and choices as you about this difficult choice and treatment. ------------- Wife Dx: Jul/09. Age: 37. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. E5103. DD ACB-> DD Abraxane (Taxol reaction). Zometa (S0307). Canadian Fraction Rads. |
Posted By: bratlee
Date Posted: Dec 29 2009 at 11:07pm
Karen W. I had ER PR+ BC in 2002 and like you had surgery, chemo and radiation. In Aug of 2009 was diagnosed with TNBC. There is only approx. a 4% chance of this happening you know. This is a new primary not reoccurance. I was given 1 round of Chemo, but stopped due to Allergic reactions and side effects. I could have tried Abraxane, but choose to fight with a low fat diet, and supplements instead. My Onc. said the chances are as good as Chemo. He admitted that he is paid to push Chemo and not a diet, he is a very honest and upfront guy. The diet is especially successful with TNBC over ER, PR+ Breast Cancers. I put my faith in God and the information I've been given. What will be will be. Best of luck to you in whatever you choose to do. 
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Posted By: Karen W.
Date Posted: Dec 30 2009 at 1:20pm
Thank you for sharing. I too am taking immune builders (Doterra & Univera products), supplements and essential oils. Frankincense is a healing oil for Breast Cancer!! I also use the Chi Machine and FIR Infrared dome and pad. Cancer hates heat, oxygen and an alkaline body. Try to get alkaline with your diet. You can google diet suggestions. I have given up most meat and especially Pork. Pork cells under a microscope look very similar to Cancer cells. I am also trying to eat only Organic so I don't add any additional free radicals to my body from processed food with perservatives. A great book to read is "Killing Your Cancer without killing Yourself" by Dr. Alan Chips.
I hope you have a great support team around you and of course, pray is the most important. I will keep you in my prayers. Keep me posted and I will do the same.
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Posted By: tammyj44
Date Posted: Dec 30 2009 at 11:06pm
| I had chemo, surgery and radiation after my diagnosis in May 2008. I started reading about nutrition and alternative therapies during my treatment. I sat by a woman on a plane flight during my chemo treatments who told me about her husband curing himself naturally from prostate cancer. She and her husband had both become vegetarians after his diagnosis and reading the "China Study". I started searching the internet and reading as much as possible! I believe cancer can be cured naturally but it takes a strong commitment to stick with a rigid diet and lifestyle! I am really struggling with raising teenagers and especially the holidays with all the delicious food! I've got to get back on track because I'm determined to beat cancer and not have a recurrance! I'm reading Suzanne Somers new book "Knock-Out". Very informative! I'm juicing vegetables and taking supplements and flax seed oil. Trying to walk whenever possible, which is hard this time of year! I do believe that there are better ways than chemo and have decided that if I ever have a recurrance I'll go the alternative route. Hopefully with what I'm learning I can prevent a recurrance from ever happening! |
Posted By: Karen W.
Date Posted: Dec 31 2009 at 1:40pm
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Tammy,
That is awesome. I wish I had made the changes in 2007 after my first diagnosis, and I truly believe those "microscopic" cells that remained could have been wiped out by my own healthy body. I am about to start reading the "China Study". I have a new juicer, but I can't drink 'green' vegetables. I too am raising a teenager, and she is quite challenging. It can be a bit overwhelming, and then I cry and start over.
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Posted By: Kellyless
Date Posted: Dec 31 2009 at 1:50pm
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So Karen, your first breast cancer was hormone positive, and your second was triple neg? I'm curious as well if they considered this a recurrance of your original breast cancer and not a new and seperate primary cancer? From all I've read and what my onc said, one can not lead to the other, and vice versa? I'm always looking for new information that I was unaware of or misinformed about, so I'd love to hear more. Chemo totally shriveled up my ovary's and I'm in full blown menapause - so I thought my chances of getting a new hormone positve cancer would be very slight, if at all. What my doc said actually was that my chances were the same as the general population that has never had cancer, for getting a new hormone positve cancer? ------------- IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED! |
Posted By: bratlee
Date Posted: Dec 31 2009 at 2:42pm
| Hi thought I would put my two cents in if that's okay. I had ER, PR+ in 2002 and Triple Neg in 2009. My Drs told me there is only a 4% chance of that happening and it is definitely not a recurrance, but a New primary cancer. After the first time I went into full blown menopause as well, but was told that you can get ER, PR+ again. I am not doing Chemo this time around due to complications, but am fighting with diet and supplements. Best of luck to you! |
Posted By: 123Donna
Date Posted: Dec 31 2009 at 2:44pm
Can you tell us the size of your tumors with each occurence? ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
bratlee wrote:Posted By: bratlee
Date Posted: Dec 31 2009 at 2:54pm
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Sure here you are:
DX ER. RP+ 2002, age 45, Stage IIb 2.5cm Grade 3, 0/3 nodes. Lumpectomy, Chemo A/C x 4,
35 Radiation. Triple Neg 2009, age 52, Stage 1, 1cm, Grade 3, 0/6 nodes. Bilateral Mastectomy / Tram Flap reconstruction, 1 round Chemo C/T
Currently Low Fat diet, flaxseed oil suppliment, Tumeric suppliment, Meta I C 3 suppliment
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Posted By: tammyj44
Date Posted: Dec 31 2009 at 5:18pm
| I have had a lot of breakdowns and crying! Sometimes I feel like I'm all alone in this battle! My husband is a smoker and lives off Mt. Dew! He eats mostly red meat and potatoes! Rarely a green vegetable. He's also 10 years older than me! My two teenage daughters would live off of McDonalds and Burger King if I let them! It's really hard to eat healthy everyday when the rest of my family wants junk and do not support me! I only wish I had known before my children were born what I know now about nutrition! I myself love the taste of most junkfood but I've made the decision to change my diet because I believe my life depends on it! I've had to start over several times because I caved in and ate something just for the taste I missed! I can honestly say I don't crave carrott juice or eating brocolli! It would be soooo much easier if someone in my household would support me and start eating what I'm eating! I fear for my daughters and their future! Of course at there age cancer and death is something that only happens to "old" people! I remember feeling invincible as a teen even well in to my twenties! I guess I can only be an example to my daughters and hope as they mature they will make healthier choices. I can control what they eat here at home but not at school and ball games. I wish I could be as committed as Dr. Loraine Day was. I watched her video and have studied her book. She never mentions a husband or children. She gave up her career, going out with friends, eating in restaurants, etc...but she survived and is cancer free! I just pray a lot and ask God to forgive me when I screw up and ask Him to help me start over again! Have you read Bill Henderson's "Cancer-Free"? I'm using a lot of the remedies in his book. He has a news letter that's always being updated on the website. Can't think of the website off the top of my head but if you Google Bill Henderson Cancer-Free I'm sure it will lead you there. Best wishes to you in the New Year and may we both be healthy and cancer free!!! |
Posted By: Karen W.
Date Posted: Jan 01 2010 at 4:07pm
| I was told my cancer is a metatasized recurrance. My tumor in 2007 was stage one. I had four sessions of chemo, three weeks apart. I was para-menapausal before chemo and 99% thru menapause after chemo. My tumor was high on the chest wall. They removed and checked three lymph nodes under my arm. No cancer was detected. I actually had three surgeries. The first surgeon operated in the wrong place and did not remove the tumor but did remove the lymph nodes. The second surgeon did remove the tumor and went in a third time to get clean margins. i believe somewhere cells were left behind. My second cancer metatasized in my lymph nodes in my neck. I woke up one day and my neck looked as if it had golf balls under the skin. They were painful. My oncologist said if it was cancer it wouldn't be painful but obviously she was wrong. I changed Oncologist and realize now they just perform routine solutions. I am going to see a specialist in a couple of weeks who's passion is TNBC. I would be happy to ask him any questions for anyone. I have been told TNBC is almost impossible to totally kill. I new treatment I read about talked of using an enzyme destroying drug so the body would be more receptive to chemo. We need our enzymes and it doesn't make sense to me to destroy more of my body to make another killing chemical more useful. I am taking immune building supplements instead so my own body cells can fight the cancerous cells that have probably traveled elsewhere in my body. That is also why I have been eatting a low sugar, no starch, low fat diet. |
Posted By: trip2
Date Posted: Jan 01 2010 at 4:15pm
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Tammy,
I agree it is hard to want to make some diet changes and you are feeding other family members that roll their eyes. Keep trying.
Big hug, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Karen W.
Date Posted: Jan 01 2010 at 4:50pm
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I saw two of Day's video's. I think the web-site is cancertutor (Henderson). I plan to go back and read more of it. Was the book helpful and did it offer more than Day recommends?
I am sorry your family is not more supportive. My husband and daughter argue all the time and it drives me nuts. That is when I have the most breakdowns. My Mom and Dad, Sisters and friends provide me with a lot of support. I don't think it would all be worth it without them.
I don't know though that living like 'Day' is really living. Maybe we could move in with her and she could take care of us until we are well. lol. Her mom was in one video. She was sick so she took her in and forced her to drink greens and carrots and saved her life. Colonel Day. ha
I laughingly call myself 'the bag lady'. I carry a bag of organic food with me (blueberries, raisins, pumpkin seeds) to help stay on the program. I have found that if I have the right foods available when I am hungry I do better. I try to eat 1-2 organic spinach salads a day. No dressing. I still go out to eat with my husband and will only order green items from the menu. It takes so much time to prepare all the healthy food that it is a bigger challenge. I do cheat also. I try not to, but am not always successful. When I do, I just try to keep it to a bite or two.
I pray and meditate during my home treatments. I am going to meet with a lady tomorrow from Chicago that cured her own cancer using these same treatments. I am really excited about it. I use the treatments but am not sure how long a day I should do these. I will keep you posted.
Let us join together and pray for all the ladies on this site as well. I believe with all my heart that God loves us and wants us to succeed. He knows we are weak and will falter, and wants us to turn to him for comfort when we do.
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Posted By: bratlee
Date Posted: Jan 01 2010 at 5:12pm
| Karen, Do not beat yourself up about the occasional cheat on the diet. My dietician (specializes in Oncology) says you can certainly have a special treat now and then and it will not "feed" the cancer cells. You need to also enjoy your quality of life. I was a total red meat and sweets junky, but am finding this new way of eating not so bad once you get used to it. Alot of the cravings have disappeared. A helpful read is "The Spectrum" by Dr. Ornish. The diet is not as strict as his first book, but with still great outcomes. His diet betters your chances by 42% for TNBC and 15% for ER, PR+. Interestingly enough, I have 3 sisters all older who have always drank at least 3 glasses of green or white tea a day and I was the only one who drank none. None of them have had BC. I now drink at least 3 glasses per day! Who says you can't teach an old dog new tricks. My best help has been having a sense of humor, it really does help and puts others at ease therefore making them be more supportive. Best of luck! |
Posted By: tammyj44
Date Posted: Jan 01 2010 at 5:54pm
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Bill Hendersons book gives so much information and choices! There are so many references and websites he gives in the book for further information. He has done research on almost every alternative therapy available. He lists all the different therapies, success stories and links to doctors, products, supplements, etc.
Please give me an update when you meet the lady from Chicago! I'm anxious as well to hear what she has to tell you!
I was declared cancer free last November after chemo and surgery. I had clear margins. I still had 33 rounds of rads ending in mid January 09. All I was told when I questioned the need for radiation was about statistics! I get so sick of "statistics"! None of my doctors like me questioning anything!
I know from everything I've read and learned about TNBC it has a high rate of recurrence! I see my surgeon and onc in Jan and Feb for follow ups. I'm afraid what a PET scan might show! Every ache and pain I have scares me! I keep telling myself any breast pain or discomfort in my chest is from the effects of surgery and radiation. I've not been faithful with my eating healthy. I had a false sense of security after being told I was cancer free! My onc said, " I don't expect to see any trouble out of you!" Knowing I'm TNBC how can he make that statement?
Today being the New Year I'm starting back on juicing my vegetables and taking all my supplements. The left over brownies my family had from last night were tough this morning! I've got to keep that stuff out of my house! LOL!
My identical twin sister had a routine mammogram right before Christmas. She got a phone call just before New Years telling her there is a mass in her right breast! She is scheduled this Monday for a diagnostic mammo and ultrasound. We are praying it's not cancer but with my recent cancer diagnosis and the fact we're identical twins the odds are not good. Needless to say I've not been sleeping well and am deeply concerned about the results next week! She is single, just got a promotion at work and just bought her own home 2 days before Thanksgiving! Her words were "This can't happen! My life is just starting to look up!" She struggled as a single mom raising her now adult daughter after an abusive relationship. I'm hoping I can get her to start eating healthy and juicing. She's always been the type to take the easiest route so I'm sure she'll do whatever the doctors tell her without questioning. I keep reminding everyone that I changed my diet and took flax seed oil everyday along with supplements during my treatment. My onc seemed surprised himself when my tumor disappeared! They say I had an amazing response to chemo! I believe everything else I was doing contributed to it!
Please keep me posted in what you learn and I will as well. Pray for my sister, PLEASE!!!
Just curious, what is your age? My sister and I just turned 46 this past November.
Tammy
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Posted By: tammyj44
Date Posted: Jan 01 2010 at 6:05pm
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Karen! I just realized under your name your location! You're in Evansville, IN! I live just south of Mt. Vernon in IL! Evansville is only about an hour and a half away! I would love to meet some time! Maybe we can meet half way somewhere. I don't mind driving to Evansville either. I was just over that way before Christmas looking at a horse!
Tammy
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Posted By: bratlee
Date Posted: Jan 01 2010 at 6:35pm
| Tammy, May I ask why, the juicing? Is there some special benefit to that? Thanks, and your sister is certainly in my prayers as are you! Thanks, Kim (Bratlee) |
Posted By: Carol (Tenn)
Date Posted: Jan 02 2010 at 12:09pm
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Good Morning to all of the new members....I just thought I'd invite you to visit our Spiritual Support group...just jump to Support Groups then Spiritual Support. You can read our daily devotional and also respond or request...
Love and Prayers,
Carol ------------- St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |
Posted By: Carol (Tenn)
Date Posted: Jan 02 2010 at 12:11pm
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Pam,
I just want to say here in this new year how much I appreciate you! You are always available with wonderful advice and direction. What you have is a God given talent for research and sharing. LOVE YOU, GIRLFRIEND! ------------- St 2 Gr 3, A/C/T, DD Radiation x35 Rec chest wall 07/09 Radiation x28 NED 10/24/11 NED 10/5/12 NED 03/15/13 |
Posted By: tammyj44
Date Posted: Jan 02 2010 at 2:33pm
| Juicing vegetables extracts all the nutrients from the fiber. So when drinking fresh vegetable juice the nutrients go straight in to your system without the body having to use energy to break down and seperate the nutrients from the fiber during digestion. For example an 8 oz glass of carrott juice equals approx. 5 lbs of carrotts. You're getting the nutrients in the 8 oz glass without having to sit and eat 5lbs! Of course our bodies still have to have fiber so you're suppose to eat fresh organic raw vegetables for meals but throughout the day juice as well. I never thought I'd like carrott juice but now I love the stuff! You can mix any greens with it and it still tastes like carrott juice. That's the only way I can juice greens is to do about 50% carrott with it! You have to get organic juicing carrotts to have the sweet flavor. Carrotts you by at the local grocery are bitter! I use to drive to St. Louis to Whole Foods Market to get them and then I came across a Mennonite man that runs an organic grocery locally and he orders them for me. God keeps putting the right people in my path. The Mennonite man is a nutritional practitioner and a wealth of information! Tammy |
Posted By: bratlee
Date Posted: Jan 02 2010 at 2:49pm
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Tammy, Thanks so much for the info.
Kim
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Posted By: keepthefaith
Date Posted: Jan 03 2010 at 1:40am
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Hi all,
I thought I might join in on this discussion. To update....I was diagnosed with TNBC tumor 3cm, 0 nodes in Nov. 06. Bilat Mastectomy with reconstruction. Did 4AC/4 Taxol. Fine until Nov. 08 when recurrance was found in upper mediastinal area, supraclavical nodes and lower neck. Abraxane/Avastin X 18, 35 Rads. Clear scans til Nov. 09. Recurrance in lower mediastinal and hilar region. Ixempra/Avastin started. I recieved one dose, got a wonderful (NOT) abcess in a bad area. Had to stop chemo for 6 weeks due to surgical procedure to take care of the abcess. So, now I had to wait with no chemo. What to do? Well, I read a lot and decided to do the "Budwig" protocol. Flaxseed oil mixed with cottage cheese daily. I juice carrots, celery and a green apple every day. I eat no sugars, no white fours, no meat. I only have fruits, veggies, legumes, some fish. I went to my Dr. for a check-in Thursday. He was surprised I had lost 16 pounds since Nov 18 (that is what eating right will do!). I FEEL wonderful! More energy than I have had in a while. We scheduled chemo to start again on Jan. 20, Ixempra/Avastin every three weeks. But, he wants to do a CT scan on Jan. 18th to see what has happened with 6 weeks off treatment. Wouldn't it be just wonderful to see nothing!!??!! I can hope and surely am praying for that. My last two bouts have been found with NO SYMPTOMS....just a routine PET. I was to have them once a year. So I have been blessed you might say by finding it early before symptoms appear. I will update for sure how the scans come out and how my health is different by staying on this "lifestyle change" during chemo.
Christine
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Posted By: 123Donna
Date Posted: Jan 03 2010 at 6:00am
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Christine, I'm so sorry to hear about your recurrence. Please keep us posted on your progress and how your scans go. It sounds like juicing is really helping you and giving you the energy you need. Donna ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
Posted By: mrsmurphy
Date Posted: Jan 13 2010 at 10:50am
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Wow Christine I am so impressed with you! My husband got me a juicer for Christmas, its still in the box! I need some motivation to get juicing....think I'll go to Costco after radiation today!
Mrs. Murphy ------------- 33yo mom to 6 dd, diag 6/09, while preg w twins! Grade 3, stage 2 tumor (4cm), 2 pos lymph, triple neg, dble mast 7/09, chemo done Nov 09, radiation done Feb 10! BRCA -, new boobs sched for July! |
Posted By: Karen W.
Date Posted: Jan 17 2010 at 12:18am
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Hi Tammy. I am in Brown County IN and shopped at Bloomingfoods. All Organic Grocery and I found the carrots with the greens still attached. Can't wait to get home and juice them.
I met with Dr. George Sledge yesterday- He is considered "THE" TNBC- Internationallhy renowned specialist. He is awesome and I think every woman with this disease should see him. He is so knowledgeable about the disease and different studies that have happened. He truly seems to understand this disease and best how it should be handled. ------------- DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case) |
Posted By: Karen W.
Date Posted: Jan 17 2010 at 12:21am
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I have heard about the flax seed oil and cottage cheese but I don't know what it is for... Does anybody know? ------------- DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case) |
Posted By: bratlee
Date Posted: Jan 17 2010 at 8:48am
| http://home.online.no/~dusan/diseases/cancer/cancer_dr_budwig.html - http://home.online.no/~dusan/diseases/cancer/cancer_dr_budwig.html Here is a link to explain the flax/cottage cheese. Not sure what I think about this yet myself??? Good luck! |
Posted By: mrsmurphy
Date Posted: Jan 17 2010 at 11:34am
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Karen, thats so awesome that you found that Dr., I am looking forward to hearing what all he advises for you! we are military, and so even though I have been dealing with this only since June, I am on my 5th oncologist. Its really sad when you have to explain to the dr what you have. REALLY sad. But, it is what it is and I am in God's hands. Have a great Sunday! Mrs. Murphy ------------- 33yo mom to 6 dd, diag 6/09, while preg w twins! Grade 3, stage 2 tumor (4cm), 2 pos lymph, triple neg, dble mast 7/09, chemo done Nov 09, radiation done Feb 10! BRCA -, new boobs sched for July! |
Posted By: mrsmurphy
Date Posted: Jan 17 2010 at 11:51am
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Tammy, just rereading posts, wanted to let you know I am praying for you and your sister, identical twins are close to my heart, mine are nearly 7 months old! Actually, I am praying for all of you! Always, every day. Is there any dr who doesnt say, I think you will be fine?? I think they have to say that. Yesterday I had a new idea, that we dont really have any cancer, and have been randomly picked to be test subjects for all these drugs and treatments. What are the physical symptoms of cancer? Ive had lumps and bumps and things that were "totally normal", and then this one lump is "fatal in months if not treated aggressively". sigh, its just my imagination, right? If I just ignore it maybe it will go away? LOL!!! trying not to be cynical, Mrs. Murphy ------------- 33yo mom to 6 dd, diag 6/09, while preg w twins! Grade 3, stage 2 tumor (4cm), 2 pos lymph, triple neg, dble mast 7/09, chemo done Nov 09, radiation done Feb 10! BRCA -, new boobs sched for July! |
Posted By: bratlee
Date Posted: Jan 17 2010 at 12:36pm
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Mrs. Murphy, Interesting concept, test subjects, LOL. You never know. Best of luck to you!
Kim ------------- DX 06/02,ER,PR+,StageIIb Grade3 0/nodes Lumpectomy, Chemo A/C 4x, Rads 35 - DX New Primary, 08/09 TNBC Stage1, Grade3, 0/nodes, Bilateral Mastectomy,Tram Flap, Chemo C/T 1x,(allergic reactions)No Rad |
Posted By: tammyj44
Date Posted: Jan 18 2010 at 11:39pm
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Mrs. Murphy,
Thanks for praying for my sister and I. She hasn't found out anything yet. She has an appt. in February. She didn't want it moved up because she just took out a health insurance policy at work that went in force Jan 1rst. She can't be diagnosed with anything in the first 30 days or the insurance won't cover it! Sucks that our lives lie in the hands of insurance companies! Or in my case praying that the "good" doctors will see me because I'm self employed and have no health insurance! Anyway, we're praying that her lump isn't cancer!
You are in my prayers as well as the other women on here! Wow! Cancer is such a devastating diagnosis, but to be pregnant with twins and find out on your birthday!!???
I also have some of the same thoughts as you that we're all ok and just guinea pigs for drug companies! My results from my biopsy were so messed up that I have thoughts sometimes that maybe I didn't really have cancer! Or even that mine could have been mixed up with someone elses! I guess we all have some of those thoughts!
I'm glad there's a place like this to chat with other women with the same feelings going through the same thing!
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Posted By: trip2
Date Posted: Jan 20 2010 at 3:51pm
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Tammy,
I sure hope your sister's lump is nothing. The waiting sometimes is the worst and we do alot of that.
I have been given another woman's mammo report once. Always good to read everything, it even had my name but I knew when it said one breast had been removed there was trouble in the pot since then I had both! We have to stay on top of everything along with all that we go thru, it's horrible we have to deal with the extra double checking of everything and yes, insurance is another mess.
Let us know about your sister, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: dawnmarie
Date Posted: Jan 29 2010 at 3:29pm
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Today I went to see oncologist for first time. As noted below I had a bilat. Mastectomy in Dec. 09 with 26 neg. lymph nods. My right breast was not infected with any cancer whatsoever but removed as a precautionary measure (Did feel a lump in right breast - but it was negative) No history of breast cancer in family.
My general surgeon who I really like and trust tells me I am cancer free at this point with no further treatment needed, my oncologist recommends 4 chemo treatments to lower my risks.....is it worth it? I am already fatigued and I hate being sick. Most treatments start within 6 weeks of surgery and I am already 8 weeks past surgery. I am single and live alone......
Any suggestions??? ------------- 10/09 lumpectomy - L. breast. 12/04/09 Bilat. Mastectomy w/tissue expanders. Stage 1, Grade 3 - 26 lymph nodes neg. E/T/HER2 - All Neg. Jan. 10 refused chemo,5/10 Recur. Now 4XAC:( |
Posted By: mrsmurphy
Date Posted: Jan 29 2010 at 3:40pm
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Dawnmarie, I have to say I am pro-doing anything and everything to keep on living. 4 Chemo treatments is not so bad, and it is TEMPORARY. They have amazing nausea drugs, immunity boosters, great advice on this forum on nutrition...there is so much available. Because you live alone does not mean there should be no support system available to you. Check with your oncology team to see what kind of social services are available. If you work, talk to the people you work with and let them know you need help. Go to your church, let them know you need help. Let your family know, maybe someone can come stay with you. I have found when people know help is needed, it comes flooding in. Let them help you. Dont deny yourself the best treatments to keep you alive and cancer free just because you feel you dont want to impose on anyone, people like to help. God bless you and I pray you take time and make the right decision in your heart, Mrs. Murphy ------------- 33yo mom to 6 dd, diag 6/09, while preg w twins! Grade 3, stage 2 tumor (4cm), 2 pos lymph, triple neg, dble mast 7/09, chemo done Nov 09, radiation done Feb 10! BRCA -, new boobs sched for July! |
Posted By: Karen W.
Date Posted: Jan 29 2010 at 5:55pm
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Dawn Marie,
Good for you for asking the question. There is a cure for cancer that does not involve Chemo. Check out Allen Chips book; PHD; Dr. Susan Day; Bill Hendrickson... to name a few. These people actually cured their cancers without any traditional medicine. If you are so inclined, you can do it.
I met with Dr. George Sledge (Indianapolis) and he is considered one of the best for TNBC in this country. I live in a medium size city, but their thinking is still conventional. My biggest concern for you is if you are getting good information. Your surgery seems pretty radical, especially since the one breast was healthy. Did they take out the 29 lymph nodes to test? That is very extreme as well and all the surgery depletes your immune system. You need a strong immune system to fight the free radicals that are in our body.
Sledge said the most important 3 things to do now is go on a low-fat diet (under 30 grams of fat per day), excersize 3 hours per week (suggested 1/2 hour per day for 5 days) and not to drink alcohol. This is something you will need to maintain for 5-10 years. He said there have been studies to show this is effective treatment.
He said there is tremendous research being done and if the cancer does come back then they will be better suited to treat it with something more effective. Taking chemo now could hurt your chances later. If you are from a relatively small town, then you should definitely have a Doctor with more knowledge to discuss options with.
He recommended for me to NOT take Chemo at this time. I too am currently Cancer free.
Oncologist are only trained to know Chemo. So that is the answer they give; but I wouldn't necessarily trust the surgeon to know the best answer either because that is not his field.
what I have come to learn... Surgery really upsets your immune system. Think about what you can afford to do to help re-build your immune system. Read what some of the other women are doing on this site. Juicing carrots and greens daily. Think in terms of not adding any more toxins or carcinogins to your body. Chemo can actually cause you to get cancer again later. And it often is not effective in killing cancer, which is why so many women have it return. If they killed it completely, it would not be returning. When it returns it is often much worse. I did take Chemo 2 years ago and my cancer returned one and a half years later. I had help and it was still an awful, awful thing.
There are choices on this earth to help you. God has provided us with healthy options, but the medical world has not studied them because pharmaceutical companies pay for the studies.
Off the shelf meds are not very effective. My supplements are in vegetarian capsules and the body can better absorb them. I am also taking enzymes & minerals. there is information on this site about Vitamin D, and I plan to check those levels on my supplements next. If you think in terms of creating the healthiest body you can, you will be amazed. Look at definitions of an Alkaline diet. That is what I try to follow. so many people are getting sick because of the food currently available to us. It is sprayed with insecticide and then we eat it. Animals are injected with hormones and they eat sprayed food. I try to stay away from anything white, except cauliflower. I buy all Organic and since I am not buying pre-packaged foods, the cost is affordable. Stay away from anything with preservatives in it. Send me a note if you want more information and i will be happy to share. Since I have changed my diet people are constantly commenting on how much better my complexion looks. They say I am vibrant now and have great color.
Also, radiation ruins your skin. If you want to have reconstructive surgery later, you are better off without radiation.
Lastly, when I prayed with my "whole heart" to the Lord is when I started doing my best. Please let me know what you decide is best for you. One thing for sure, this is a great couragous group of women.
Love to You!
------------- DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case) |
Posted By: 123Donna
Date Posted: Jan 29 2010 at 8:00pm
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Dawnmarie, I'd suggest getting a second opinion with an onc associated with a teaching hospital. I believe you're from Southern California. Are there any such facilities close to you? How large was your tumor? Your signature says T2. Did they get clear margins during the surgery? How close to your chest wall? Best wishes in making your decision. ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
Posted By: trip2
Date Posted: Jan 29 2010 at 9:04pm
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Dawnmarie hello,
I agree with Donna, a second opinion would be an excellent idea.
I have some info for you regarding why chemotherapy is best for TNBC. It is the only thing we have in our arsenal besides surgery and radation which it appears you may not need.
I too am confused on your tumor size although that doesn't really factor either because even small tumors can be deadly. Was you cancer invasive? I have read recently that they think TNBC may travel more thru the blood system as opposed to er+ women.
http://www.tnbcfoundation.org/LBBCtriplenegative08.pdf - http://www.tnbcfoundation.org/LBBCtriplenegative08.pdf
http://clincancerres.aacrjournals.org/content/13/15/4429.full - http://clincancerres.aacrjournals.org/content/13/15/4429.full
http://www.sciencedaily.com/releases/2009/06/090617201804.htm - http://www.sciencedaily.com/releases/2009/06/090617201804.htm
http://www.sciencedaily.com/releases/2009/06/090617201804.htm - http://www.sciencedaily.com/releases/2009/06/090617201804.htm
Best of luck with your decisions and we hope you will keep us updated on your progress.
Surgeons have their field but an Oncologist would be best in advising you on any treatments unless they are working as a team in a large treatment center. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Jan 29 2010 at 9:37pm
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I cannot post in polls, website quirk but for me surgery, chemo, rads, anything they want to throw my way is my way of fighting to rid my body of this disease best I can. Then I can look back and know I've done all that I could at the time. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Karen W.
Date Posted: Jan 30 2010 at 2:42pm
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Hi Donna,
Why do you ask about the closeness to the chest wall? Mine was on my chest wall above my breast. ------------- DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case) |
Posted By: bratlee
Date Posted: Jan 31 2010 at 9:22pm
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Dawn Marie, I have to agree with Karen. I too had Chemo and got cancer again 7 yrs later. I had one Chemo treatment and the reactions were so bad my Oncologist said no more Chemo. He admitted there are other options with as good or better outcomes than Chemo. Diet and exercise play a HUGE role. My prayers are with you and you will hopefully get all the support you need no matter what you decide to do. Best of luck! P.S. Stay away form scary articles and blogs. Many people quote statistics that are very case specific or just plan not true. ------------- DX 06/02,ER,PR+,StageIIb Grade3 0/nodes Lumpectomy, Chemo A/C 4x, Rads 35 - DX New Primary, 08/09 TNBC Stage1, Grade3, 0/nodes, Bilateral Mastectomy,Tram Flap, Chemo C/T 1x,(allergic reactions)No Rad |
Posted By: Sethsnana
Date Posted: Feb 13 2010 at 3:21pm
Pam... am I the only one, or do others worry that chemo will CAUSE cancer to come back, possibly in other areas or other types, like leukemia? I am currently reading Suzanne Somers' book "Knockout", after picking it up from the library. I am due to have my 4th AC treatment on Tuesday, followed by 12 weekly taxol treatments. If others have read it, what are your opinions? If not, you should.. It is very eye-opening.. They got all of my cancer thru my lumpectomy and mammosite radiation. It's nowhere else from the scans I've undergone. I've been told the chemo I am undergoing is "preventative". I am normally not a big believer of alternative medicine or treatments, but I am having 2nd thoughts about continuing chemo. Another thing that has bothered me for some time is that I was first diagnosed with DCIS in October after undergoing a mammogram, ultrasound, breast MRI and biopsy. It wasn't until my lumpectomy on November 11th that I was upgraded to Stage 1 TNBC. How did all of the previous tests fail to diagnose that I was Stage 1? Another question I ask myself is whether or not the biopsy I had performed on October 28th caused my cancer to spread?
I apologize if I should have started another thread to discuss this, but this has been bothering me for sometime..
Thanks all!!
Renee ------------- dx 11/09 1.6 cm IDS (nodes clear), lumpectomy and mammosite radiation. ACx4 + 12 weekly treatments of Taxol, started on 1/5/10. Completed Taxtol 5/19/10. CT scans lungs,liver clear 6/7/10. |
Posted By: tammyj44
Date Posted: Feb 14 2010 at 3:14am
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Renee,
I am almost finished reading Suzanne Somers book "Knockout" and I feel the same as you do. You should also read Bill Henderson's "Cancer-Free". I am concerned about the fact that my onc told me I have a 1 in 3000 chance of leikemia for the rest of my life after receiving chemo treatments! That along with the risks of other types of cancer from chemo and radiation concern me! I can't undo what has been done but can only educate myself now about how to stay healthy. I'm doing what I can to boost my immune system and by changing my diet, exercising and eating habits, hopefully will give me a better chance at fighting off anything that I might develop if I was otherwise neglecting my self. I think we all have to do our own research and learn as much as we can! I have lost faith in our medical profession! Every time I ask a question all I get are quotes about statistics. I never get any answers! Doctors are licensed drug dealers. I panicked when I was diagnosed and all I wanted was to do something immediately! I was about half-way through my chemo treatments when I started searching the internet for books on alternative therapies. What struck my interest was remembering a program I watched on PBS about 15 years ago! A doctor whom I can't remember by name was talking about alternative medicine and the future of treating cancer. I remember him saying that in the future we would look back and say "my God, what did we do to all these people!" He was refering to cancer patients being treated with chemo and radiation. I had also read an article that stayed in my mind a couple of years ago. It was an article in a womans magazine that told about how sugar feeds cancer! My first appt with my oncologist his nurse said to me, "don't believe what you may hear about eating sugar! You can eat anything you want, sugar doesn't feed cancer" and then she laughed! I had not said a word to her about eating anything! Her smartass attitude made me want to learn about cancer and sugar!!! If I had known at the time of my diagnosis what I know now I probably would have seeked alternative treatment. I am searching now for an alternative doctor to start going to for bloodwork and follow ups. I live in Southern Illinois so we don't have anyone close. There are a couple in Chicago (about 5 hours away) and in Nashville, TN (about 4 hours away). I've been making excuses that they're too far when I realized the other day that I have driven further to look at a horse that I was interested in buying! LOL! Funny where my priorities are! I look forward to looking at horses no matter how far but don't look forward to going to any doctors anywhere! Good luck to you in what ever decisions you make and know that you are not alone!
Tammy
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Posted By: Karen W.
Date Posted: Feb 14 2010 at 4:57pm
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Hi Renee,
I agree totally with Tammy. I have also done quite a bit of research. It is crazy what the doctors will tell you and even more crazy that they truly do not know. Research is funded by pharmaceutical companies and that is all they know. I saw the best TNBC doctor and he did NOT recommend chemo as a preventative treatment. I also saw an Irisologist and he gave me herbs to use. I can tell a difference in my body after just one month. It is all about rebuilding our immune systems on a very cellular level. I feel this is helping me counter the effects of recent radiation and also chemo from two years ago. I also juice carrots with the greens each day. Dr. George Sledge (TNBC Doc) did recommend a very healthy diet with fresh vegetables and to keep fat intake to less than 30 grams per day. Plus excerise!! I have also read about Increasing your Vitamin D -3 intake. I want to get a baseline on mine and see how much I can increase it. Dr. Alan Chips also writes about healing his own cancer and using herbs and an alkaline diet in a book titled, "healing your cancer without killing yourself".
Karen ------------- DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case) |
Posted By: trip2
Date Posted: Feb 14 2010 at 5:16pm
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Hi Renee,
I imagine most of us worry about cancer coming back. Having chemo and radiation can be worrisome but at this time it is, according to studies, the best we can do for TNBC.
We each have to decide for ourselves how we want to handle a diagnosis. Researching is a great thing to do in my opinion so that we can make a more informed decision.
Not being a medical specialist I can only guess as to why your cancer was upgraded and didn't show previously on your scans. For one thing TNBC can grow fast, I have heard of women having a lump appear over night so in a way it isn't surprising. And scans are not always the miracle workers we would prefer either.
I have heard of surgery causing cancer to spread but have also read that is a myth. One of the reasons they put you on chemo is to get any teeny cells that might be lurking. Even though they got it all at surgery, cancer can spread thru lymph nodes and I recently posted a study that said TNBC may tend to spread thru our blood more so than other cancers.
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Sethsnana
Date Posted: Feb 14 2010 at 7:54pm
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Thanks everyone for all of your responses.. It really gives you something to think about!
Trip, I knew that TNBC is a fast-growing cancer, but I had no idea it could develop THAT fast! WOW! My oncologist said that the chemo I am undergoing is "preventative". The thing is, how do we know it has worked? There are no tests to tell you... We simply have to sit, wait and pray that it doesn't develop elsewhere sometime down the road... This is what scares me.. Especially after putting up with the sometimes horrible side-effects of chemo..
I've been doing some research on this website regarding Taxol, which is the next treatment regimen I will be undergoing... It seems that a lot of us develop horrible bone pain. I may be one of the fortunate ones (hopefully) that don't experience this side-effect, but I have arthritis in my knees and ankles, so I am very concerned.. I live by myself, so if I become debilitated from it, I don't know how I will cope..
Sorry, everyone.. I am just having a pretty rough day emotionally, and am not looking forward to my 4th (and last) AC treatment on Tuesday.. I was down for most of 5 days immediately following treatment last time..
xoxo
Renee ------------- dx 11/09 1.6 cm IDS (nodes clear), lumpectomy and mammosite radiation. ACx4 + 12 weekly treatments of Taxol, started on 1/5/10. Completed Taxtol 5/19/10. CT scans lungs,liver clear 6/7/10. |
Posted By: trip2
Date Posted: Feb 16 2010 at 11:10am
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Renee,
Please do not ever say you are sorry, there is no need around here. We all have our ups and downs and everyone needs a place where they can let go with their feelings. We all are here to support you thru the good and bad so no more I'm sorry.
You are right, the Taxol may not give you bone pain. My daughter had the Taxol and she got along very well compared to some, we are just all so different in our responses to treatment.
Do you have any family, friends, neighbors that could look in on you? Maybe run some of your errands when you are feeling bad or bring by a casserole for supper? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Sethsnana
Date Posted: Feb 16 2010 at 1:00pm
Okay, Pam... No more "I'm sorries"! LOL!
I talked to my Dr. today before treatment about my upcoming Taxol treatment and how concerned I am about potential bone pain.. He said "Renee, the only people you read about on the internet that are having bone pain are those that ARE having bone pain"... You may not experience any, and told me not to get too worked up... So, I am going to try to remain positive that I won't be one of them..
No, Pam.. I really don't have anyone to look in on me... I have 2 sisters, but one of them lives on the other side of town, and the other one is so busy with her job and catering to an very aged Aunt, that I don't like to ask her unless I get desperate... She has offered, but today is an example.. I asked if she could take me for treatment.. She said she would, but had a new employee starting.. She offered up her son or her husband... I didn't feel comfortable with either one of them going, so I said "no, thanks".. I drove myself there and back with no problem..
As far as food, I never know from one second to the next what I want, and the sister that lives closest doesn't cook... I'm doing pretty okay in that department (OBVIOUSLY, since I think I've put on about 7 pounds in the past 2 weeks!!) :-{
How are YOU doing, Pam?? I know you've been going thru something terrible... I worry about YOU!
xoxo
Renee ------------- dx 11/09 1.6 cm IDS (nodes clear), lumpectomy and mammosite radiation. ACx4 + 12 weekly treatments of Taxol, started on 1/5/10. Completed Taxtol 5/19/10. CT scans lungs,liver clear 6/7/10. |
Posted By: trip2
Date Posted: Feb 17 2010 at 10:49am
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Hi Renee,
I'm doing much better, thank you.
Well sorry to see you don't have much help. Maybe the sister who lives closest could stop by a restaurant and pick up something for you. You are right, we don't always know what we want but I know there were days when something sounded so good and other days, ick.
First time I had cancer I ate oranges and popcorn.
Keep us posted on how you are doing, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: bratlee
Date Posted: Feb 17 2010 at 11:33am
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Renee, FYI TNBC is not always fast growing. My Dr. feels mine had been growing for approx. 5 - 7 yrs and it was only 8mm in size. The first time I had cancer it was ER, PR+ and had grown to 2.5 cm in less than 8 months. Everyone is different. Also if you look at the percentages that I was quoted by my Oncologist, the strict low fat diet has a better outcome than Chemo, that said I don't feel Chemo is necessarily the "best" treatment out there for TNBC. (see also what Karen's dr. told her) This article is very enlightening: http://www.naturalnews.com/026284_chemotherapy_cancer_medicine.html - http://www.naturalnews.com/026284_chemotherapy_cancer_medicine.html
Best of luck to you all on this board, you have been most helpful to me during my recovery.  ------------- DX 06/02,ER,PR+,StageIIb Grade3 0/nodes Lumpectomy, Chemo A/C 4x, Rads 35 - DX New Primary, 08/09 TNBC Stage1, Grade3, 0/nodes, Bilateral Mastectomy,Tram Flap, Chemo C/T 1x,(allergic reactions)No Rad |
Posted By: staystrong
Date Posted: Feb 18 2010 at 5:18pm
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Hello Karen,
I'm a newbie to the site, researching others' choices of treatments for TNBC. I was diagnosed in Dec '09 at 35 years old with a TN tumor in my right breast, 1.5cm. Due to my family history, I was a candidate for the BRCA1/2 gene testing. The result....."unknown mutation". By choise, on Feb 4th '10, I underwent a bilateral mastectomy with reconstructive surgery. I also had an axillary dissection since a lymph node biopsy was positive. 34 lymph nodes were removed, 6 of which were positive. Other than the tumor in the right breast, no other cancer was found in either breast.
My surgeon is recommending chemo and radiation and has scheduled an appointment with an oncologist to discuss my options. I definitely am leaning towards the alternative route. That's what I'd like to do, although, feel it's appropriate to speak with the oncologist.
Reading your post, the responses and other success stories is enlightening. I'm trying to gather and retain as much info as possible prior to my appointment with the oncologist on March 15th.
I, with the help of my family, have done lots of research on alternative healing for cancer and the pros/cons of traditional treatments and medicine. When I was first diagnosed, I changed my diet to all organic and 90% veggie. I also incorporate whole grains, nuts, lentils and occasionally fish and poultry. I juice everyday and am taking various supplements and herbs. I'm a huge fan of fresh wheat grass, ground flax, green & essiac tea. The list goes on & on..... As for my current recovery status, I've bounced right back! :) I feel great and am pretty much back to my regular routine. I started exercising this week, alternating days with yoga and pilates, along with brisk walking outdoors. I'm limited in some of my exercising since I'm still going through the reconstructive process with tissue expanders.
I'm hoping to hear from others who have had success with alternative and even traditional treatments with a similar diagnosis. Again, thank you for sharing your story!
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Posted By: dmwolf
Date Posted: Feb 18 2010 at 5:45pm
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Staystrong, You are young and have your whole life ahead of you. The fact that you had 6 positive nodes means that there is almost certainly still micro-metastatic cancer in your body not yet visible on a scan. This means that you need to do chemo to try and save your life. Your odds of a metastatic recurrence without chemo are extremely high, at least 60-70%. With chemo, your odds of a metastatic recurrence drop to about 35-40%. That is a BIG difference. It is only about 6 months of being kind of miserable. Short in the grand scheme of things. I'm sorry if this is harsh, but you need to know your odds so you can make an informed decision. -Denise ------------- DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10. |
Posted By: Karen W.
Date Posted: Feb 18 2010 at 6:07pm
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Dear Stay Strong,
You have taken courageous and life changing steps. Your body will thank you by becoming healthier and healthier every day. You sound like the poster girl for healthy eating
It is great that you have a strong support group around you. I found talking to the oncologist and radiologist was frightening due to the 'scare' tactics used, but also realize it is all that they know and what they were taught. They will more than likely tell you chemo and radiation is needed to fight against any microscopic cells that may have been missed. That is what can make the decision so difficult. However, when your body is healthy it can heal itself.
I did take chemo and radiation in 2007 but the treatment did not prevent the cancer from coming back. I have been told that chemo can cause the cancer to morph into something even worse, which is what mine did.
If you plan to have breast reconstruction you should know that radiation will destroy your tissues. It is very harmful to tissue and does not merely go in and out of your body. I would suggest you also meet with an experienced reconstructive surgeon before you take radiation. I was told the radiation causes a lot of 'hard' scar tissue within the breast and the soft inserts will be surrounded by hard tissue.
I am glad I made the choices that i have. Thanks for sharing your story and good luck to you. Let me know what you decide.
Karen ------------- DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case) |
Posted By: 123Donna
Date Posted: Feb 18 2010 at 8:52pm
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Staystrong, As you can see from my signature that our tumor size was similar. I also chose a bi-mx with reconstruction. I was hoping to avoid chemo but after meeting with my onc, she told me how aggressive tn can be. I chose chemo and while it wasn't fun, I'm glad I did everything that my onc advised. I believe alternative therapy, in the form of eating better, exercising, etc. will only help your body become stronger and healthier. There's a great book you might want to read, Anticancer by Dr. Schreiber. Please keep us posted on how you're doing. Donna ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
Posted By: alexzack
Date Posted: Feb 20 2010 at 1:46am
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after being diagnosed with mets this dec. i decided to to go the natural route right now. I juice approx 8 times a day, take all the supplements in the Bill henderson protocol, do 2 to 3 Flax Oil Cottage Cheese mixtures per day, do EWOT daily, do infra-red sauna daily, work out with a trainer on Tues/Thurs.,, eat a vegetarian diet, and all organic. After 6 weeks, none of the tumors grew and one shrunk from 1.9cm to 1.3 cm. i'll keep you guys posted on progress. I am going to get a checkup with a natural dentist this week. ------------- diag. 6/06, Stage 1, Mastectomy, Chemo. Loc. Rec. 2/08 and 12/08, Mets to Bones, Liver, Mediastinal, Lungs and Pleural Effusion to Left Lung 12/09. BRCA1 pos. |
Posted By: Galina2
Date Posted: Feb 22 2010 at 1:47am
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Hello, just a word of cation, pls. check with your OC about the flax seeds and Meta I C 3 supplement. Both contain estrogens. Estrogens are not recommended supplements for BC survivors. (This includes soy products as well. Some sources even go so far to limit or eliminate cruciferous (estrogen source)veggies).
Just check and make a decision for yourself. (I personally have a little soy milk when I have hot flashes). ------------- Believing is 50%!Dx 7/10/07, Lumpectomy 8/24/07, double mast/no recont. 10/01/07, IDC, 3 cm, Grade 3, 0/4 nodes, Stage IIA, ER-/PR- HER2- Age 48, chemo 11/23/07 lung spots 3/08 |
Posted By: bratlee
Date Posted: Feb 22 2010 at 7:51am
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These came from an article in the National Institutes of Health:
Anticancer Action of Flaxseeds
Several studies have been done to determine how the phytoestrogens in flaxseeds may help cancer. One theory compares the estrogen-receptor blocking ability of flaxseeds with http://breastcancer.about.com/od/hormonetherapydrugs/f/serm_hub.htm - estrogen-receptor modulation drugs . The weak plant-based estrogens block the estrogen receptors on cells within breast tissue, starving them of full-strength female estrogen, possibly stopping tumor growth and preventing cell damage. Breaking Down the Bounty from Flaxseeds My Oncologist put me on this diet, and I was given the Meta IC3 by a doctor. There is tons of research showing the benefit of flax seed for breast cancer as well as cruciferous veggies! (This has nothing to do with hot flashes.) Not all estrogens are the same. ------------- DX 06/02,ER,PR+,StageIIb Grade3 0/nodes Lumpectomy, Chemo A/C 4x, Rads 35 - DX New Primary, 08/09 TNBC Stage1, Grade3, 0/nodes, Bilateral Mastectomy,Tram Flap, Chemo C/T 1x,(allergic reactions)No Rad |
Posted By: bratlee
Date Posted: Feb 22 2010 at 11:50am
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Here is another article that I just got today in my e-mail which talks about the Breast Cancer Benefits of eating Cruciferous veggies and flaxseed.
http://www.qualityhealth.com/featured-article-segment?fa=102054&rf=43406&mc=MTIxNjczMjI.&ct=36922 - http://www.qualityhealth.com/featured-article-segment?fa=102054&rf=43406&mc=MTIxNjczMjI.&ct=36922 ------------- DX 06/02,ER,PR+,StageIIb Grade3 0/nodes Lumpectomy, Chemo A/C 4x, Rads 35 - DX New Primary, 08/09 TNBC Stage1, Grade3, 0/nodes, Bilateral Mastectomy,Tram Flap, Chemo C/T 1x,(allergic reactions)No Rad |
Posted By: Karen W.
Date Posted: Feb 27 2010 at 11:49am
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Thanks for the article. I am trying to follow that program. I take a flax seed supplement, but do not consume otherwise and not really sure how to use it. Any idea's? ------------- DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case) |
Posted By: bratlee
Date Posted: Feb 27 2010 at 3:27pm
Karen, I grind it in a coffee grinder fresh every morning and put it in my oatmeal or yogurt. You can just sprinkle it on any cereal. It can be used in baking, but I don't do any of that anymore.  I also mix it in salmon patties. (made with 100% whole wheat bread crumbs and egg whites so not bad) Not much taste so pretty versatile. Hope you are well!
Kim ------------- DX 06/02,ER,PR+,StageIIb Grade3 0/nodes Lumpectomy, Chemo A/C 4x, Rads 35 - DX New Primary, 08/09 TNBC Stage1, Grade3, 0/nodes, Bilateral Mastectomy,Tram Flap, Chemo C/T 1x,(allergic reactions)No Rad |
Posted By: Karen W.
Date Posted: Feb 27 2010 at 4:46pm
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Hi Kim,
I liked that article you posted from Quality Health. Very good and a nice refresher of why we do what we do. I just made some salmon salad so I sprinkled flax seed on it. It was good. I will work that back into my routine. Thanks. I am doing well and hope you are too!
Karen ------------- DX July 07; lumpectomy,Chemo 4 sesions,36Rad; DX Oct 09;36 Rad;Metastatic Clavical lymph nodes in neck; chemo pending****CHEMO NO LONGER PENDING. DR SLEDGE SAYS NO CHEMO SHOULD BE USED (4 my case) |
Posted By: Galina2
Date Posted: Feb 27 2010 at 11:32pm
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Hello, Donna,
that's great to keep the spirits up!
Can you tell us what is this Clodronate when you started taking it and what it is for? Tx  ------------- Believing is 50%!Dx 7/10/07, Lumpectomy 8/24/07, double mast/no recont. 10/01/07, IDC, 3 cm, Grade 3, 0/4 nodes, Stage IIA, ER-/PR- HER2- Age 48, chemo 11/23/07 lung spots 3/08 |
Posted By: 123Donna
Date Posted: Feb 28 2010 at 10:05am
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Galina2, Clodronate is a pill form of a class of drugs called bisphosphonates. Other drugs you may have heard of are Boniva and Zometa. I'm in a clinical trial and started taking it the end of November 09. I take 2 pills a day. The study is for 3 years and there is some thought it can help prevent recurrence. You may want to ask your onc about this class of drugs. Here's a thread on the subject. http://forum.tnbcfoundation.org/bisphosphonates-clinical-trial-any-info_topic4591.html?KW=bisphosphonates - http://forum.tnbcfoundation.org/bisphosphonates-clinical-trial-any-info_topic4591.html?KW=bisphosphonates ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
Posted By: MsBliss
Date Posted: Aug 27 2010 at 6:52pm
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I lost 7 posts to this thread last night...will try again today. Just wanted to add my voice to this. I was dx in Mar 09. I did not do chemo or rads. I had stage 1, grade 3. One primary lumpectomy, one re excision for DCIS in the margin. I had a high life time of exposure to medical radiation, and many repeat scans during the diagnostic stage of my tnbc. For now, I am refusing all scans or x rays except for thermography and ultrasound. I may change this approach as more time passes. So far, all is quiet. I cobbled together a protocol from books, doctors, naturopaths, and Edge's CAM at No Surrender. For the first year I was very good.....I did my supplements and life style changes, but I did slack off in the last few months. My oncologist has told me that there are few patients that do zero chemo for TNBC and that I am her first one. Are there any of you out there that have never done chemo for either positive or tnbc? This thread has been a good reminder for me to get back to work! All my best, Bliss |
Posted By: trip2
Date Posted: Aug 27 2010 at 7:46pm
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Take care Bliss.... ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: 123Donna
Date Posted: Aug 27 2010 at 10:31pm
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Bliss, My df that I've posted about was Stage 0 (DCIS) TNBC and didn't do chemo. We thought her mets to the liver were TNBC, but it turned out to be another type of cancer. She was dx with TNBC 2 1/2 yrs ago. Donna ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
Posted By: briestarr
Date Posted: Aug 27 2010 at 11:00pm
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My docs have told me nothing about diet.. or supplements... what should I be on?
All she told me was to get exercise .... that is it. I met with a dietian once and all he did was give me a book with recipes in it. So, what should I be eating...
Brie ------------- DX TNBC Feb 2010 age 48 Lumpectomy 2cm 6 nodes removed, all clear Chemo A/C and Taxol 8 sessions Radiation 33x BRCA 1 and 2 negative |
Posted By: 123Donna
Date Posted: Aug 27 2010 at 11:08pm
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Brie, There's been another thread on the EDGE-CAM where we've talked a lot about it. Please read through the posts and I think you'll find a lot of interesting information. http://forum.tnbcfoundation.org/edgescam_topic6149_page1.html?KW=CAMPN%3D10 - http://forum.tnbcfoundation.org/edgescam_topic6149_page1.html?KW=CAMPN%3D10 http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4807927&trail=20#1 - http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4807927&trail=20#1 ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
Posted By: MsBliss
Date Posted: Aug 28 2010 at 4:45am
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Dear Donna, I am so sorry for your df and her new battle. It is a very serious fight she is in. Do you think there is any connection to the DCIS she had? It sounds as if this is a new primary with different pathology and receptors but I can't help but wonder. One of my doctors would say the same conditions that led to the DCIS could lead to other pathologies unless we take steps to intervene. Did your df ever get her vitamin D levels checked? I don't think that chemo is usually recommended for stage 0, even if it is triple negative. Do you think she would be open to nutrition and life style changes at this point? All my best, Bliss |
Posted By: MsBliss
Date Posted: Aug 28 2010 at 5:07am
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Brie, Don't expect your doctors to advise you on these matters. They don't live there. A good place to start is with the Edge CAM. He backs up his recommendations with some very seriously vetted research, and he knows how to see through studies that are otherwise invalid. Edge's name is Constantine and he is the resident researcher at no surrender to breast cancer. This is an excellent website to go and learn. Many of us visit this forum and Edge is a genius. Gina is the founder and she is a perfect gem with an incredible way of putting a funny twist in her posts. http://www.nosurrenderbreastcancersurvivorforum.org/post?id=4807927&trail=20#1 Edge is really brilliant. I love him. Even my doctors who weren't convinced of the value of nutrition and life style changes are impressed with his treatises. Anyway, as I said, it is a starting point. |
Posted By: trip2
Date Posted: Aug 28 2010 at 9:07am
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Also another great place to begin is right here in this forum. We have some great threads on Vitamin D plus links in the News/Resource section.
If you use the search box near the right top of your page, type in Vitamin D and you should pull up alot of info. You can google/bing Vitamin D and breast cancer.
It is important to have this very simple blood test, even your Pcp can do it for you.
I was never given this test either, had to ask my pcp to do it, my number was a good one. Good luck.. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: CiGi
Date Posted: Aug 28 2010 at 9:30am
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Ms Bliss – I wonder why don't our onc's promote thermography? I read a lot about it and it's a non-radiation way to detect very early development of cancer. Has anyone else had one? My lifestyle has always been very healthy, low-fat non-processed diet, active and exercise, and cautious of my surroundings. I was born with hypertriglyceridemia (high blood fats). I had immunities you could not believe. My son had strep at least 10 times, I would get a slight sore throat and we'd both get tested and he'd be positive and I would not. I've never had the flu and I'd be around all kinds of germs. My husband used to get jealous how I never got sick. I haven't had any colds since I was a teen. I absolutely believe that immunities fight everything including cancer. Because of my triglyceride issue I fell deathly ill 2 years ago and it caused pancreatitis and furthermore ARDS (lung failure), I had pneumonia caused from the breathing tubes (hospitalized for 50 days). I almost did not make it. I think that traumatic occurrence in my life caused my super immunities to drop to nil and allowed TNBC monster to creep in. On top of the illness, all of the radiation involved tests (CT scans, x-rays...) guided the cancer to my breast. I chose chemo to hopefully kill any cancer cells that may be too strong for my immunities to fight since they are still weak. I think if my BC was any other cancer than TN, I would not have considered chemo at all. Hopefully afterwards I can rebuild my immunities back to the way they were and it’ll never return. I don’t want to do radiation. I believe radiation was part of the cause so I’m really afraid of it. I don’t know how long it takes to rebuild our immunities after chemo… Also when I was in the hospital with my lung issue I was given a blood transfusion. I’ve researched that you can’t get cancer from it, BUT it’s not conclusive. My son is extremely smart scientifically and he believes if there were cancer cells in the blood your body would kill it because it’s foreign, but it would need your immunities to do that, well, if my immunities were gone isn’t it possible? If they can’t determine if I still have cancer from blood tests, then how do we absolutely know if this same cancer isn’t in our blood banks? ------------- Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010. |
Posted By: trip2
Date Posted: Aug 28 2010 at 10:12am
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There is a study in the Resource section stating they believe TN is more susceptible to running thru the blood system instead of or along with lymph glands. I was told we cannot give blood once we have cancer.
My sister has Leukemia. If the day comes, heaven forbid, she needs a transfusion I cannot help her but stand helplessy by although I am the best choice being her sister, no parents, because I have had cancer.
I honestly do not feel my immune system has been right since my second round of chemotherapy in 2007. I pick up all kinds of goodies plus I feel I have never recovered like I did after chemo in 2003. Just smacked the crap out of me in 07 and I feel I'll always have to deal with a scewered up body because of it. Or maybe because of having treatments more than once, who knows. Or just maybe I have "that" kind of body, more receptive to cancer, less compatible to chemo, breaks me down for good.
My cancer most likely is genetic, still think alot of cancer is genetic, my opinion here, not a doc or medical researcher from some big hospital. Our bodies are what they are whether we ride bikes all day long, eat only green things, or drink beer and smoke, we are what we are. They can't even figure this TNBC business out yet, how can we sit and look at our past behavior when there are no facts yet? These are my thoughts, again I respect the comments/feelings of others.
We do have to consider our personal feelings, make big decisions and I respect others in how they feel. I just don't think there is anything we did or could have done to prevent this disease. I refuse to blame myself, my behavior, how I ate or whether I was a marathon runner, in the sun enough, had some scans, or blame other women because they have been diagnosed. Not our fault, imho.
But, I wouldn't change having chemo/rads as that is why I am probably here to write and gripe about it's side effects, I'll take the trade off. Scans help save lives and catch c earlier in many circumstances, I'll take my chances. Something will get me eventually, probably nothing to do with cancer but who knows, that is what I am saying or asking?? Too many maybes, guessing....
I won't get into the radiation thing, everyone's experience and feelings matter, steer their lives and decisions. I personally have had enough scans to light up the nearest town, just since diagnosis in 2002 but still feel the dosages won't bother me, it's a choice, I don't want cancer again, but again maybe all the scans/rads will get me. If it gets me because of radiation so be it, I made my decision to be proactive and on top of things best I can. I want to live.
Off my soapbox now, love ya all ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: 123Donna
Date Posted: Aug 28 2010 at 10:17am
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Cigi, I know if you've had cancer, you can't be an organ donor. As far as cancer and giving blood, I don't know if they'd let you or if there is a time period like 5 years of disease free before they'd allow you to give blood. Now I don't know how they screen for it because if someone is giving blood and doesn't tell them, there's no screening. Have you read Dr. Schreiber's AntiCancer A New Way of Life? It's an excellent book and I'd suggest reading it. In the book he talks about 2 people that received organs from a person that had died. Both got cancer quickly and the first died, the second they figured the connection out to the donor and removed the organ. What they found is that even if someone had cancer 20 years ago, there could still be circulating tumor cells in the body. Our natural immune system will keep them at bay and not allow them to grow. When a person receives an organ transplant they get immuno suppression drugs that prevent our bodies from fighting these cells. This is what allowed the cancer cells to grow out of control with these organ recipient patients. Dr. Scheiber explains this in more detail in his book. I always wanted to be an organ donor and it saddens me that I won't be able to since I've had bc. Here's a link to his website: http://www.anticancerways.com/ - http://www.anticancerways.com/ ------------- DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09) 11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15 |
Posted By: CiGi
Date Posted: Aug 28 2010 at 11:11am
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Thanks again Donna, I have not read the book, but will. I am a read-a-holic with nutrition and health, always have been. I'm still new to all the breast cancer info and read everyday. I think it's pretty unlikely I got it from blood, but I don't totally dismiss the possibility. I try to stay positive and look at this way, if I did not get the treatment I did 2 years ago, I would not be here today. When I was in the hospital, I did not know how serious ARDS was. By day 3 in the hospital, my organs were becoming pale, which is the start of them shutting down. My doctors pumped me up with fluids trying to get oxygen to my organs since my lungs were not, and it worked. Mind you I went from 130 pounds to 185lbs, 55 lbs water weight in one week! Talk about water retention. I swelled so fast that my skin blistered open (3 inch dia) on my thigh because it would not stretch anymore. I would not have changed a thing. It brought me back and saved me. My doctor - Dr. Edwin Bernardo saved my life. I'll credit him always. It was very sad, he passed away just before my one year anniversary from an aneurism, and he was 51 with small children. I’m so grateful to still be here and I just have another hurdle. I’m also so grateful to have a family like my TNBC family to help though it. ------------- Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010. |
Posted By: tailormade
Date Posted: Aug 28 2010 at 12:25pm
| I think that having chemotherapy and/or radiation permanently disqualifies a person from giving blood. I don't know about cancer in the blood supply. I think the problem with cancer for the person who has it is that the body does not recognize it as foreign because it isn't. However, I think if one person's cancer was in another person's body it would be recognized as foreign by the immune system. In the book I recently read about the history of breast cancer, there were physicians who tested whether or not breast cancer was contagious by injecting themselves with breast cancer. One physician made all his students inject themselves with breast cancer (even though apparently they didn't want to do this). Several had an immune response, including swollen lymph nodes, but they all recovered and did not go on to develop cancer. This was quite a while ago, but it would be interesting to have known whether they developed any cancer immunity from injecting themselves. |
Posted By: trip2
Date Posted: Aug 28 2010 at 12:57pm
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Oh my does this really go on?? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: tailormade
Date Posted: Aug 28 2010 at 2:08pm
| Injecting oneself with breast cancer? It was a long time ago. I can't recall right now which century the author was talking about when writing about physicians injecting themselves, but it was not recent history. |
Posted By: MsBliss
Date Posted: Aug 28 2010 at 4:37pm
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Yes Pam, I forgot about our own threads here on TNBC on alternative and integrative info! I was trying to think of a comprehensive list for Brie to refer to, and Edge's CAM is the first one that always comes to mind because of the citations he uses; doctors are more comfortable seeing those references. But a very important part of the puzzle is right here and thank you for reminding me too! I also learned so much from all the links you and Nancy post. Made all the difference in the world. Truly. Ten thousand thank you's! Bliss |
Posted By: CiGi
Date Posted: Aug 31 2010 at 1:10am
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When I was in the hospital with ARDS, I was on high doses of an immunosuppressive drug, so maybe my thoughts of the blood received was not so far off. If those organ doners recieved organs from people who had cancer even 20 years prior and still got cancer.... I wonder if I would be in a similar risk group as them if I received blood possibly with cancer cells and on high doses of immunosupressive meds. Proabably not likely, but who knows, maybe? Always wondering and will never know. ------------- Age 40, 4/28/10 lumpectomy (3 cm) TNBC Grade 3 Stage 2 0/3 nodes, TAC 6x 3 week cycles start 6/15 finish 9/27, 33 rounds rads 11/22. BRCA1 & 2 neg. Lymphedema rt hand 8/14. Joint pain Dec 2010. |
Posted By: trip2
Date Posted: Aug 31 2010 at 1:15pm
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MsBliss, I have to say that any of our links/resources/studies posted in our TNBC News/Resource Section always have the necessary connections for references to the best of my knowledge.
Myself and others have worked very hard to provide reliable information.
As may be the case with CAM (not sure what/who this is) our information is also highly regarded. The links are from very reliable websites, sources, studies, trials and references given. I see no reason why docs wouldn't hold our info in the highest regard. I know they do. We are not medical professionals here but we can back up what we say with our Resources.
I am not posting to get that situation back into the forum as has been in the past, just take it a little personal when I read your post that our Resources may be lacking for doc's eyes as opposed to "Cam's info. This isn't a competition, we must all share together and if proven reliable then all info is welcome.
Or possibly I misunderstood..
------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: MsBliss
Date Posted: Sep 01 2010 at 10:30pm
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Dear Pam, I think you may have misunderstood what I wrote, majorly I might add....at least I hope that is what happened...! We are talking about saying no to chemo or finding nutritional approaches to support chemo on this thread and a request was made for a place to start; this calls for a comprehensive and understandable protocol. If there is one already here on TNBC which has the medical citations for dosage and usage per, I would love to make use of it as well. I don't think the poster had the time to start with peer review paper number number one and read through the hundreds of pages of research available here to put a plan together in expedited fashion. Edge's CAM is a menu of recommendations regarding supplements, specific foods and nutriceuticals to include as a supportive back drop for before, during and after chemo . It is an actual protocol with precise dosages and usage instructions for breast cancer patients, including most of the subtypes. It is about ingestion and life style. We do not have such a treatise at TNBC. What I think you are referring to is the archive of articles which are linked from medical journals and peer review research. These are incredible articles and references regarding the science and state of the art with regard to tnbc and bc, but this is not a comprehensive complementary alternative medicine (CAM) protocol recommendation that is already in a usable format. As I said in my previous note, I learned a tremendous amount from the citations and links you and Nancy have posted over the years. The information is priceless and of course, sourced from peer review journals with all the incumbent references. I NEVER said or intimated otherwise. These articles are vast, including research, trials coming up, articles on foods, supplements, and lifestyle that we can use to move through this journey. Some of this info is part of the Edge CAM I am sure, but how does one use this info to put together a plan? This is what the Edge CAM is. My statement that my doctors and medical connections have been impressed with Edge's CAM has to do with the fact that his specific recommendations are backed by citations, some from the very same articles that have been linked here. It is simply good to see in writing the recommendations for say, Boswellia, backed by the research cite so that when I printed the menu out and showed it to the head of Integrative Medicine at UCLA that they gave it their blessing for me to proceed upon it. I didn't have a supplement menu with citations to present from the tnbc forum. I hope you can appreciate that I was talking about something entirely different than the peer review articles that have been available here. Bliss |
Posted By: trip2
Date Posted: Sep 02 2010 at 2:51pm
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Yes, I can see you were referring to something else, appreciate your explanation as it will benefit us all..every bit of good info helps. ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: dawnmarie
Date Posted: Sep 02 2010 at 6:07pm
I was diagnosed with TNBC in Oct 2009 and had bilat. masectomy in December 2009. I declined chemotherapy in January as my margins were clear and all 26 lymph nodes removed were negative. I started taking MCP (Modified Citrus Pectin) but obviously too low of a dose cause in May 2010 my cancer returned in the exact same location. I will finish up my 4th AC treatment tomorrow and hope not to have to follow with anything else such as Taxotere. I am single and work full time and can't afford to develop neuropathy and lose my job and insurance because of side effects that might occur. I want to move on to finish my reconstruction process which was halted in May and I will continue with the MCP at the higher dose recommended and hopefully this will work  ------------- 10/09 lumpectomy - L. breast. 12/04/09 Bilat. Mastectomy w/tissue expanders. Stage 1, Grade 3 - 26 lymph nodes neg. E/T/HER2 - All Neg. Jan. 10 refused chemo,5/10 Recur. Now 4XAC:( |
Posted By: MsBliss
Date Posted: Sep 02 2010 at 7:46pm
| Dawnmarie, I am still learning of course, but I wanted to share some info with you. I endorse your use of MCP, but that is not enough. During chemo, you should avoid supplements for the 72 hour window before and after, except for D3. Remember, Vitamin D3 has been shown to be a critical co factor so don't forget to get your levels checked and supplement until your levels are at least 60. D3 also helps chemo work better by assisting in the differentiation between normal and cancer cells. Curcumin and fish or krill oil are also important, along with green tea and ample amounts of whole blueberries. Try and put together a full protocol that includes a good supplement menu and life style changes. There is no "cure all" and that includes MCP; plus MCP is only a critical supplement for the 6 months surrounding surgery, after that, MCP has more or less done it's job, although you can continue on it if you choose to do so as it won't hurt you. |
Posted By: bratlee
Date Posted: Sep 02 2010 at 9:29pm
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MsBliss, I am 1yr out of my Cancer and was thinking about starting the MCP since I just heard about it recently. Are you saying that it wouldn't do anything at this point? Thanks. ------------- DX 06/02,ER,PR+,StageIIb Grade3 0/nodes Lumpectomy, Chemo A/C 4x, Rads 35 - DX New Primary, 08/09 TNBC Stage1, Grade3, 0/nodes, Bilateral Mastectomy,Tram Flap, Chemo C/T 1x,(allergic reactions)No Rad |
Posted By: Belle_Laide
Date Posted: Sep 02 2010 at 10:05pm
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FWIW, I was a vegetarian (for 22 years at time of diagnosis), meditating, Yoga-practicing and teaching, right-weight for my height all my life, masage every two weeks, former runner/physical being at time of diagnosis---still am all those things (except for the massage, alas at least for now). I think it is great that you want to be the healthiest you can be. But I want to say very strongly that there are NO guarantees. I did everything right and got screwed anyway, lol. When I was diagnosed,the first thing many people did was try to tell me what I did wrong to cause my own cancer---like being only a vegetarian as opposed to being a vegan, for example. Or eating dark chocolate. Or having pedicures. Like I really needed to hear that. Also, I have no family history of BC. People hate to hear my story because it scares them...everybody thinks that if they do this and this and this, that they will be immune from suffering.
Maybe some will. It's a crap shoot. Remember, victors write the history. There are no guarentees. If there were, I would not have gotten this creepy disease to begin with, according to all the "experts" around. But I did. And I refuse to feel guilty and beat myself up because according the experts, I failed in some way, when I was the best I could be consciously and deliberately. Do the best you can with your choices. It's a crap shoot. Be healthy, be the healthiest you can be for its own sake. Good luck to you. BTW, please keep in mind that our chemically laden environment is becoming more and more suspect of causing cancers than the MSM and our chemically dependent economic culture want us to believe. YMMV. 
PS: I refused radiation, evern though my onc and surgeon were for it 100%, my radiation oncologist was not recommending it based on the guidelines and her experience with this totally creepy disease. She left the final decision up to me and I said no. It would not have increased my lifespan by any great percentage and I did want to do any more harm to my body after the AC and taxol. Am I glad I refused? You BETCHA! Did I take crap from others for refusing it--righty-o. If this creepy disease comes back, will folk blame me for causing my own demise---YES. Do I give a sh*t? No. Sometimes I believe toxic people cause cancer, and I have been "blessed" to know a million of them. Be careful as to whom you share your choices with, as---ahem---"well-meaning" folk will just bring you down---all in the name of "saving" you and "fixing" you, of course. ------------- Did everything right; got screwed anyway. BRCA Negative. |
Posted By: Ashlyn
Date Posted: Sep 03 2010 at 11:24am
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Belle Laide Your post made me laugh. And I agree with you 100%! I have never smoked in my life, never drank at all until maybe 5 years ago (and only a glass of wine at Xmas or on my birthday), exercise vigorously 5 days a week, red meat (and not pork) about twice a month, and still got cancer. Also no history of it in my family.
Has anyone heard of the supposed aloe vera cancer cure, and/or have tried it? I tried it shortly after my first dose of chemo and I have a strong feeling that it helped in blitzing my tumour. I wanted to refuse chemo but was not brave enough. My chemo subsequently got reduced from 8 cycles to 5.
All the best to everyone on their journey. ------------- 32y-o, married, one 5y-o girl. Dx 13/5/10. TNBC, stage 2A, sentinel node biopsy 2 nodes+. Neoadjuvant chemo 5 x EC. Bilat mast & axil dissec on left, Oct 10. 0/13 nodes. No evidence of disease. |
Posted By: CTB
Date Posted: Sep 03 2010 at 5:06pm
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Belle Laide: Loved your post. I think you would enjoy the posting by Noni on the 6 Year Survivor Thread. She is bsically saying the same as you but is speaking as a 24 year survivor of TNBC. Take a look at it if you have not already, I think it will make you feel good to read it. Chris ------------- Dx: 12/10/09; Lumpectomy and SNB 12/28/09 2.0 cm tumor 0/5 nodes; clear margins; TC x4 ended 4/10; 33 rads ended 7/6/10 |
Posted By: trip2
Date Posted: Sep 03 2010 at 6:32pm
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Belle-Laide,
Great post, toxic people, think I know a couple of them.  ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Lorene
Date Posted: Sep 03 2010 at 11:07pm
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CTB,
I had been reading the 6-year survivor posts and now can't find it anywhere. Could you, or someone, help me locate it? Thanks a lot.
Lorene ------------- dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018 |
Posted By: MsBliss
Date Posted: Sep 04 2010 at 5:03am
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bratlee, I can't really answer that for you as I am still learning about it's applications, but I understand that MCP is most important before and after surgery when there is a risk of cutting into cancer cells and dispersing them. I used it for a full year and would consider starting it again simply because I like the theory behind it; so I guess, yes, personally, I think it might be worth using it at any point. You can read up on the studies--there is even one on MD Anderson's web site. Bliss |
Posted By: trip2
Date Posted: Sep 04 2010 at 10:03am
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Hi Bliss,
Can you provide a tip, hint, better yet a link in regard to the MDAnderson information? What kind of cancer is it under, breast? or? ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: trip2
Date Posted: Sep 04 2010 at 10:04am
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Lorene,
http://forum.tnbcfoundation.org/6-year-survivor_topic7017_page1.html - http://forum.tnbcfoundation.org/6-year-survivor_topic7017_page1.html
It is in the Talk section so titled, ------------- Stage 2 2003 Stage 1 2007 BRCA 1+ |
Posted By: Lorene
Date Posted: Sep 05 2010 at 12:24am
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Ashlyn,
I've been reading about your aloe vera cancer cure & alternative treatments others are using. I've debated if I'm faced with the chemo decision again, what would I do? I feel like so many of you, attempt to build health in my body & mentally resist the chemo. However, I've done very well on the chemo regimen I had, which was the same as yours, I noticed---epirubicin. It will be 9 yrs in Oct. for me with no recurrence.
I pray you will do as well.
Lorene
------------- dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018 |
Posted By: Ashlyn
Date Posted: Sep 05 2010 at 2:47pm
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Dear staystrong I agree with what Karen has said. When our biological system is healthy the body heals itself. So even if there are tiny cancer cells remaining I believe it is possible that it can be healed naturally, with a little help from diet, exercise, a strong mental attitude, a child-like faith in God, etc. I would advise you to go with your gut feeling and not with any scare tactic from no Doctor or anyone else. A lot of people have taken chemo, rads, the whole works and have still had recurrence, others have not. This just goes to show that some things will work for some people but not for others. I have read about people who have healed cancer naturally, as well as others who have died following alternative treatments and having refused conventional treatment. Nothing is 100% guaranteed and whether or not you choose chemo and rads, only time can truly tell if you will get a recurrence. I think the ultimate decision is yours. Hi Lorene I too have done very well on my chemo (thanks be to God), which subsequently resulted in the reduction from 8 cycles to 5. I have continued to exercise rigorously 3 – 5 days per week (just taking 2 or 3 days rest after chemo). I have had very few “down” days, and have managed to keep a strong, positive, mental attitude, which I think have helped “me”. God has been good to me and has fulfilled all my desires. I never wanted to have so many cycles of chemo (8) and was planning to stop at 4. So when it got reduced to five I was over the moon and thought, okay then. Another thing I'm leaning towards is to not have lymph node surgery and just have the bilateral. Whilst I know that there are many women who have not had a problem with lymphoedema (which is my main concern), I just have a strong feeling that this surgery might not be necessary for me. Yes, some of you are thinking I am mental, given the two positive nodes! I do not make these decisions lightly. But I know that God has a plan for all of us, regardless of the decisions we make for ourselves. If my fate is to die of cancer then lymph node surgery and all the chemo and or rads won't prevent that. I do not believe I will die of cancer but only God knows my fate. I spoke to my surgeon about this decision and he said that it's up to me if I choose not to have lymph node dissection, but that I would be accepting that there is a risk of the cancer coming back in the lymph nodes. He said at the present time there are no statistics on this. And that there is research currently being carried out on other means of detecting whether there is cancer in the nodes, without having to do this surgery. He said scans are not always accurate and until they do the surgery they cannot tell if they have got all the cancer or not. They can no longer feel the lump at all and have said that I am in complete remission. I just have a feeling that if I agree to this surgery they will find no cancer and I will have done all that for nothing. My mind is not fully made up yet but I am praying and asking God for guidance and I know he will answer me and tell me whether I should do it or not. I will listen for His voice and go with whatever He guides me to. I know a lot of people on here are very pro-medics but God is the ultimate healer, the great Physician and it is only His report that I will truly believe. Through him ALL things are possible! I love this site! I have learnt so much in such a short time. I pray that everyone will do well throughout this journey. Ashlyn ------------- 32y-o, married, one 5y-o girl. Dx 13/5/10. TNBC, stage 2A, sentinel node biopsy 2 nodes+. Neoadjuvant chemo 5 x EC. Bilat mast & axil dissec on left, Oct 10. 0/13 nodes. No evidence of disease. |
Posted By: Ashlyn
Date Posted: Sep 05 2010 at 2:56pm
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Another thing I will add about the aloe vera, I did the 10 day treatment shortly after my first cycle of chemo. After that, I've just continued to drink the aloe vera juice on its own (which is perfectly natural and healthy). I buy the natural plant and peel half of it each morning and blend it on its own like a smoothie and drink it. A lot of people in Jamaica (where I'm from originally) eat it like that from time to time to cleanse the body, or put it in punches or smoothies. Some people hold the notion that aloe vera is just good externally but it is very versatile and is very good for the immune system. I have always known this as my parents used to force us to drink it as a child, which I used to refuse as it is very bitter. You actually feel it running through your whole body when you drink it so that can only be a good thing. ------------- 32y-o, married, one 5y-o girl. Dx 13/5/10. TNBC, stage 2A, sentinel node biopsy 2 nodes+. Neoadjuvant chemo 5 x EC. Bilat mast & axil dissec on left, Oct 10. 0/13 nodes. No evidence of disease. |
Posted By: Lorene
Date Posted: Sep 06 2010 at 10:04am
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Morning Ashlyn,
Do you buy the aloe vera plant in the grocery store and use it as an additional immune support to your routine diet & supplements? Also, where can the plan of the 10-day program be found? I take a lot of herbal & nutritional supplements with a good diet, but could still use additional immune support. My white blood count is still too low, ranging in the lower 4's to never over 5. You are so knowledeable. I had the axillary node dissection, where they found 1+ node, and the Sentinel had 2+. I've had no problem as a result of the surgery. I will pray for your decision on the surgery. You have a strong faith and I know you will do well.
James 1:5 If any of you lack wisdom, let him ask of God, who gives to all liberally and without
reproach, and it will be given to him.
God be with you,
Lorene ------------- dx10/01@age59,IDC TNBC, St.IIB,Gr3,2.5cm,3+nodes, epirubicin,5FU,cytoxan,33Rads,No recurrence, 2018 |
Posted By: hdeall
Date Posted: Sep 06 2010 at 10:09am
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maybe too late to weigh in- but i did the bilateral in january 2009 and then chemo and when my cancer came back it was in the lymph nodes and was causing alot of trouble. my opinion is that most of us tn's should have the lymph node surgery- it's just too dangerous not to.
in hindsight i wish they would've gotten to them earlier - even though they say it wouldn't effect my life expectency...whatever that means.
but what do i know but my history and issues.
be well whichever route you take. ------------- 54 yrs, TN, Brca+, Stage 1-right side only in Nov 08, BiLateral mast. immediate reconstruction Jan 09, Chemo, Oopherectomy Dec 09, Now bi-lat lymph nodes-Mar 10,Stage IV. BiLat lymph surgery Apr10. |
Posted By: Ashlyn
Date Posted: Sep 06 2010 at 10:47am
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Hi Lorene
I found the aloe remedy here:
http://www.healingcancernaturally.com/aloe-vera-honey-rum-treatment.html - http://www.healingcancernaturally.com/aloe-vera-honey-rum-treatment.html
I will add that I used 100% raw organic honey, as the heat treated ones lose a lot of their substance and enzymes in the process. I also used about 300 grams instead of 500 but it's up to you how you follow the recipe, though they always say the closer to the recipe the better.
Yes, I use the aloe in addition to my diet and supplements. I am in London and there are a lot of Caribbean and African imports here so it's not difficult finding the natural aloe plant. You would not find it in the supermarkets though, usually those African or Asian food markets/stalls. My mum lives in NY and she says they are plentiful and cheap there. I hope you don't have a problem finding them. My blood counts have always been great in time for my next chemo. I also use the lenograstin injections on days 8 and 12 after chemo to boost blood count.
When did you have your axillary node dissection? My sentinel also had 2+ nodes.
Hi Hdeall
I don't think it's ever too late to weigh in here so thanks for your input. I think one of the pros of neo-adjuvant chemo is that you can tell straight away if chemo is working for you. I noticed you had your chemo after surgery and that way one never knows for sure whether it has worked or not. I am no expert and a lot of what I know now (or what I think I know) I've learnt from this site.
Hindsight is such a wonderful thing but I am a person who usually accepts the consequences of my actions without much regret or anger. I very rarely go back and dwell on what could have been. I agree that it can be dangerous not to have the surgery. I also know eventually I will make the right decision for me as I am not 100% fixed on any decision at the moment. I can be strong -headed but I am also sensible (most of the time :-)). I will get more answers and do more research before I make my final decision. Thanks again for answering. It is much appreciated.
All the best to you too.
PS. What sorts of problems did it cause for you, if you don't mind sharing? ------------- 32y-o, married, one 5y-o girl. Dx 13/5/10. TNBC, stage 2A, sentinel node biopsy 2 nodes+. Neoadjuvant chemo 5 x EC. Bilat mast & axil dissec on left, Oct 10. 0/13 nodes. No evidence of disease. |