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MsBliss 
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Joined: Apr 25 2009 Location: Lost Angeles Status: Offline Points: 722 |
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 Posted: Sep 08 2009 at 3:05pm |
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CAM is complimentary alternative medicine. It is always intended to interface with your medical intervention or chemo. Except for a few items, usually after chemo is completed.
I could not do chemo, so I am using a version that is tweaked for my situation. There are many sources for CAM protocols. One of the best is at this website, and this is the actual latest protocol from Constantine: http://nosurrenderbreastcancer.websitetoolbox.com/post?id=3654841 There are many protocols, most overlap on the critical elements listed on this one. I have added a few other items that to which my research led me. But my protocol is pretty much as stated here. |
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CarynRose
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Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
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Posted: Sep 08 2009 at 3:19pm |
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MsBliss,
I didn't know you were on No Surrender. I love Constantine/Edge and sent Autumn a copy of his latest on TNBC.
He helped me so much when I had the lepto mets and I'll always be grateful. At first, my doctor and Nurse practitioner sort of poo-poo'd what he was saying because they couldn't find evidence based proof that what he suggested was true, but literally a month later, they were suggesting the same protocal.
What is your S/N there?
Caryn
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Orig dx 6/03 - St.2a, IDC
gr.3,0 nodes, TNBC/BRCA1+ 7/07 St 4 mets to nodes/lungs. PACA/Rads NED 11/07-10/08 Lepto mets 10/08 Rads for 4 brain tumors 4/10. Leptomets return 6/10 |
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Nancy
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Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
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Posted: Sep 08 2009 at 3:56pm |
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MsBliss,
Ahhh! Yet another link made hot for you
Nancy
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Nancy
DD Lori dx TNBC June 13,2007 Lumpectomy due to incorrect dx of a cyst mastectomy July 6 2007 chemo ACT all 3 every 3 weeks 6 tx Aug-Nov 28 rads ended Jan 2008 |
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SagePatientAdvocates
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Joined: Apr 15 2009 Status: Offline Points: 4748 |
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Posted: Sep 08 2009 at 4:12pm |
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Dear Autumn,
you have been, are and will be in my prayers.... I hope your scans go well tomorrow... we are all rooting for you...so you will not be alone in the room... you can count on us.. in your corner, Steve |
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I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Laura123
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Joined: Sep 04 2009 Location: Michigan Status: Offline Points: 3 |
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Posted: Sep 08 2009 at 4:28pm |
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Autumn.
I was just diagnosed with BC a month ago and so far no one has said the words TNBC to me. I am 48 years old, no children and live alone. I am ER-/PR-/HER(2)-/BRCA1-/BRCA2-. I have a great support system but being an only child and having my parents living 800 miles away....I know the feeling of alone. One thing I rely on is my faith in God. I am afraid of what lies ahead for me. You are not and never will be alone because we are all in this TOGETHER!
Hugs from Michigan!
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Autumn10182001
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Joined: Aug 18 2009 Location: Highland, NY Status: Offline Points: 557 |
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Posted: Sep 08 2009 at 4:35pm |
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All, I am doing a little better tonight. I sat with a friend today, one of only two that I would trust to assist me with the task of laying out the facts, the advantages (for me) and disadvantages (for me). My cousin MaryAnn and I spoke last night, she used to be a pharmaceutical rep. She checked some web sites, and found out that the NCI rates Sloan as number 2 in the USA, (MD Anderson is # 1, but that is Houston.). MD scored 100% and Sloan 94.something%. The next one is down in Baltimore and was scored I think in the 62% area. My cousin lives in Maryland. Dana Farber is number 5 on the list I think. Anyway, no chemo today... PET and CT at 9AM tomorrow. my friend Lori is taking me. She left work today after I called her and she was here in 40 minutes. and is taking off tomorrow morning. We did alot of searching on the internet, and we made lots of lists of things. I have made some decisions. First and foremost, I must wait for the results of the complete pathalogy and the PET/CT scans. There is a possiblility that the nodules are not cancer, and I am praying that the full report will show that. I talked today with the onc, they talked to a shrink which ordered a new med, and said I do not need to see him, since I am seeing a therapist, it would be stupid for me to dump everything on him as well. I wrote down what it is, but I haven't researched that yet.. so I have to check out what it is, before I decide, if it is a sleep thing, as he wants me to take it at night, to get more rest. that is not what I want. So that is work for later tonight or tomorrow. I have decided to go to Sloan for my second opinion. After the results come in, my onc will send everything down to them and set up an appointment. My onc said that they believe they know how to treat TNBC, although CTCA will do other things outside the protocols, but that I will not feel comfortable with my decision unless I get a 2nd opinion, so they want me to get one. It was my choice by working with my cousin and my friend Lori today, to go to Sloan . One thing we determined today, is that I do trust my team. My onc, who has been on vacation since last Thursday, and is not back until Monday, has all the current info, and called Sloan to talk to them about ME specifically, last Friday. While on vacation. They explained today, that if I do NOT have mets, why they would like to hold the other chemos in their back pocket, so that if I do get mets, we have more options to use. However, if there are mets, it will be (probably) taxotere and carboplatinum at this time. He may hold the Avastin in his back pocket. Remember, If Sloan thinks differently, my Drs will work with Sloans recommendations. I am sure that CTCA is very good... and I don't want anyone to take any of this wrong.. but I had to lay out the facts as they pertain to me, and my mental health. They of course are always an option, but I will say that I have rec'd both good and bad reports about CTCA. They also do not fall into the top 200 cancer centers in the usa. So please keep an open mind to my reasoning.
If I chose CTCA, I have to for the most part, sign up for all my treatments there, which means travelling by train, alone except for the first time, from here to NYC - 1 hr 45 minutes by train, and then take a train from NYC to Phili. I can't see me on chemo, navigating the trains and all the walking that would be needed to do this, as well as the train rides. I would also be away from the reasons I want to live, and sit in a hotel room, alone most of the time, which is absolutely no good for me. my home, gardens, my patio, i built with a fire pit, my lawn, wife, granddaughter and my dog.
CTCA talked about your team being under one roof, well my therapist has known me 28 years, my oncologist team 10 years, my maseusse, 9 years, although I received an oncology magazine today, out of nowhere, never heard of it, that says massage is not good to have during treatments or while you have cancer, that studies have shown that it can help cancer spread thru the body, as well as help the cancer grow. So for now I cancelled my massage.
I have a nutritioinist and a surgeon on my team, btw the surgeon made it possible for me to have a nutritionist at no charge. My pastor has been my pastor for 9 years. These folks are my support system, as well as my friends , both near and far, and you all here.
When I bring things to the oncologist office, (granted on two occassions he ticked me off, he didn't have time to talk other patients), but working with the PA , everything I have brought to them, they have been able to talk to , or they have called sloan. Also, the onc I saw on Friday, he is right, I am incurable, not that it can't be put in remission, but he is into
diet, supplements, some holistic stuff, in addition to chemo, and after chemo. So I am going to see him for now, every month, to go over some of the things that I have found and that you have brought forward, vit D3, and getting other tests done on my tumor, which the PA told me today , they will be doing some more if I have mets.. or if these nodules are cancer.
So with all that said, I am comfortable with my team... and they are close to home. and CTCA is always an option, just has dana farber would be, etc.
We also made a list of some things I need to do.. work on my diet, exercise, gratitude list, living in the now, and I have this thing about not leaving a legacy, but Lori talked with me today, and although my legacy will not be with children, I have one, and I want to write some of that down for me... so I remember.
So while I wait for the test results and am still fearful of mets.. etc. I now have a plan, even if it is just my own plan, at the moment, as to how I plan on moving forward.
So feel free to point out where you think I don't make sense, and maybe where I do... and keep praying and holding me up... i will probably not get results until next tuesday when my onc gets back... so I have a wait on my hands. My love to each and everyone of you... and thank you again. Autumn
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DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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LRM216
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Joined: Mar 18 2009 Location: Marietta, GA Status: Offline Points: 1196 |
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Posted: Sep 08 2009 at 4:48pm |
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Autumn - Wow! You sure have put your mojo into motion! You have accomplished so much and I am very proud of you, as you must be of yourself. That took a lot of emotional and physical energy. I think your plan sounds fantastic, and I think the most important thing is that it sounds compatible with how your feel and think at this time. I am so glad your Maryann and Lori are there to help you along this journey.
No one but you needs to feel comfortable with what you have decided, although I am sure every poster on this thread will be happy for you. The alternatives can always be gone back to at a later date should you desire.
I am wishing you the very best of news and luck and sending you much love. Please post everything you can to us so we too can be there every step of the way with you.
Now, do take that deep breath - you have done much!
Love,
Linda
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Linda - diagnosed at age 62
Diag 2/23/09 IDC 1.2 cent. IDC right breast,Stage 1, Grade 3,0/1 nodes - Triple Neg 4 DD AC every two weeks, 1 Dd Taxol, then 3 Taxotere every three weeks - rads x 33 |
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unklez
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Joined: Sep 05 2009 Location: New Jersey Status: Offline Points: 1000 |
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Posted: Sep 08 2009 at 5:05pm |
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Great plan Autumn. It is very important to have YOUR OWN plan and you have done it!
You can not go wrong with Sloan. Have you picked an oncologist there? If not, I can send you some names from my research although we don't have direct experience with their oncologists yet. When you call Sloan, if you don't ask for the specific oncologist by name, they will send you to one whose calendar is free and we all know what that means! Also, just so you have another option, in NYC also is Weill Cornell Research Hospital. Dr. Linda Vahdat is well known and does only breast oncology. She has been in Cast Connolly list every year since 2001. |
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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.
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Autumn10182001
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Joined: Aug 18 2009 Location: Highland, NY Status: Offline Points: 557 |
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Posted: Sep 08 2009 at 5:14pm |
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Please send me the dr's names you have research.. and thank you so much..
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DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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dmwolf
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Joined: Jan 22 2009 Location: Berkeley, CA Status: Offline Points: 3619 |
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Posted: Sep 08 2009 at 5:50pm |
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Look at you, Autumn, unleashing your inner lioness! I am thrilled for you, thrilled that you have noticed all that inner strength, the steely core within that you can count on to see you through.
Love, Denise |
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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.
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MsBliss
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Joined: Apr 25 2009 Location: Lost Angeles Status: Offline Points: 722 |
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Posted: Sep 08 2009 at 7:34pm |
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Thank you Nancy!
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MsBliss
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Joined: Apr 25 2009 Location: Lost Angeles Status: Offline Points: 722 |
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Posted: Sep 08 2009 at 7:41pm |
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Oh yes. I love that site, and I love G, her humor and her wonderful energy.
You are right about Edge's recommendations being validated; at least that has been my experience. My doctors have been very impressed with his research and treatises. They have trouble keeping up with the data in real time and Edge is on it. I also have proposed to Edge, but there is a long line as I have learned! And my husband wasn't all to happy about that either! I use the same name there, MsBliss. |
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unklez
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Joined: Sep 05 2009 Location: New Jersey Status: Offline Points: 1000 |
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Posted: Sep 08 2009 at 7:55pm |
Dear Autumn, Here are my top medical oncologists that provide Breast Service at Sloan: Dr. Hudis, Dr. Dang, Dr. Norton, Dr. Gilewsky Call 646-497-9064 and ask for them by name. Let us know how it goes please. Regards, Unkle |
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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.
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trip2
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Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
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Posted: Sep 08 2009 at 8:51pm |
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Autumn,
Just wrote you a long post which didn't go thru.
I wanted to remind you to request a copy of every scan, bloodwork, anything you have done either to be mailed to you or get a copy from your doc.
Start your own file and be sure and read these reports. Sometimes the docs don't always tell us things on there that we might want to know but it may not pertain to what they are doing.
You are never alone, there are over 2,000 people here to help you get thru these dark times. Sounds like you have a plan of action so that is a good sign.
Good luck with your scans, hope it all goes well for you. Let us know.
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Stage 2 2003
Stage 1 2007 BRCA 1+ |
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Wendy2
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Joined: Apr 10 2008 Location: United States Status: Offline Points: 213 |
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Posted: Sep 09 2009 at 3:20am |
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I can't take the throwing in the towel thing. PLEASE. I took Avastin and Abraxane which isTaxol without cremphor (recommend) - I'm still here. On Xeloda now - mets diag. 3/08. Don't give up. That is the one thing we cannot do. Keep fighting. The Avastin/Abraxane worked and was not bad on me at all. Xeloda is worse for me but I'm taking it. Please don't give up hope - antidepressant might help - this is depressing, but life is still worth living. Every chemo is different for everybody, at least try!
Prayers and Hope
Wendy
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dx 3/06 TN, taxotere/cytoxin x4; radiation x 40; mets. to lungs, lymph nodes 3/08 - to begin chemo 4/29/08 Abx/Avas., 9/08 Avastin maintenance, 1/09 - off meds to see if Avastin causing headaches
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MsBliss
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Joined: Apr 25 2009 Location: Lost Angeles Status: Offline Points: 722 |
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Posted: Sep 09 2009 at 12:06pm |
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Wendy, I was prescribed CT x4 too. Were you originally stage 1?
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Autumn10182001
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Joined: Aug 18 2009 Location: Highland, NY Status: Offline Points: 557 |
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Posted: Sep 09 2009 at 12:53pm |
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Hi all, well I had my PET scan, and the CT scan... so now it is wait and see. still waiting on the final path report of the nodule biopsy.. they said my Drs office will have the results Friday, but I don't think I will get them until Tuesday when I go in for my normal chemo appt, my onc is on vacation until Monday.. although they have been in contact with him numerous times last week and this week about my case. so who knows.. then I say, should I just not try to get results until next week.. and try to enjoy the weekend.. have to wait and see what happens. Today was an ok day all things considered.. i went to the store and bought lots of new spices, since salt is on the list of things that help cancer grow...
So i am learning to eat fish and chicken and veggies with lots of pepper and other type spices... going to try Tuna steak tonight... hard to eat things without sugar, salt and butter... but I guess I will learn... Update you all as soon as I know anything.. or if I start to lose it again... Thank you all for your support..
BTW, i do have copies of all reports that I have received so far, someone brought that up earlier, Thanks again
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DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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Carol (Tenn)
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Joined: Aug 06 2009 Location: Paris,Tennessee Status: Offline Points: 2707 |
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Posted: Sep 09 2009 at 6:55pm |
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Hello Autumn.
Your story is so much like mine...I found a lump right below the incision just four months after I finished my chemo and rads.
I had the lump removed and it was cancer. It was a recurrence of the primary cancer. Not a new one, which is good news.
My onc said that chemo didn't do it the first time around so no point in doing that again. Now if its mets, then chemo would be back.
So now for the obvious....and repetition....Don't give up...you have too much to live for. I also said that if it came back no more chemo for me...but when the time came I would have done it in a New York minute.
Please just try to live every day the Lord allows you to have to fullest. Enjoy your family and friends and put the negative thoughts away.
If you are not currently taking an anti-depressant, I would advise you to. It sure helps me deal with all this. I take Zoloft and am glad I do.
I am a grandmother too. I want to see my grands grow up...my olderst is in her 2nd year of college and plans to be a doctor. I want to see her do that.
The next one is a senior in High School and is a star football player and I want to see him play in the state tournament. They missed it last year by one game.
Third is my 8th grader and soooo smart...high IQ..I want to be here to see what he does with his life.
Fourth and last is a 5 grader and is quite the little beauty....it will fun seeing her mature...now she's 11 going on 20...
So Autumn, list your dreams just like I did...and you will see...LIFE IS DEFINATELY WORTH LIVING!
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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 |
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MsBliss
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Joined: Apr 25 2009 Location: Lost Angeles Status: Offline Points: 722 |
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Posted: Sep 09 2009 at 9:15pm |
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Autumn, regarding the reports, the reason it was brought up was because you said you couldn't deal with getting your reports together for the second opinion...
Edited by MsBliss - Sep 09 2009 at 9:16pm |
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Autumn10182001
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Joined: Aug 18 2009 Location: Highland, NY Status: Offline Points: 557 |
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Posted: Sep 10 2009 at 4:16am |
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Ahhhh.. i meant things like how much quanttiy wise I have ad of each med, and how many rads... type stuff.. thank you
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DX2/99 Stg I,ER+PR+ Chemo lumpectomy - Neg nodes,rads, tamox,femara. DX4/09, Stg IIB /III, TNBC IDC, Grade III, 2.5CM, mastectomy. 4AC DD,12 wkly taxol,BRAC1&2Neg, Right Mast 11/25/09
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