BRCA Testing |
Post Reply 
|
Page <1 345 |
| Author | |
vickyann 
Senior Member 
Joined: Sep 25 2008 Location: Texas USA Status: Offline Points: 127 |
 Post Options
 Thanks(0)
 Quote Reply
 Posted: Apr 25 2009 at 6:18pm |
|
Nancy,
I do have a relative who tested positive for BRCA2. My insurance agreed to the brca test. I never dreamed I would not be tested for both. I wonder if they have a sample and if i could call. I wish the ppl who made these calls realized it is comforting to know where you stand and learning the BRACA results still feels unresolved without the results from both.
I had the test for myself and for my two daughters.
You try to stay on top of things with triple negative, to prevent recurrance and save your own life, take charge and fight this and when something like this happens it is frustration.....
I do not have the contact information yet the oncologists office called with the results and they are mailing it to me, at which time I will call... I think it is to late with the blood results...
I am grateful, happy, and hopeful with the braca2 results... I feel my plate is still full. Thanks for listening ya'll:-) (Ya'll meaning all of you):-)
I wish I could whisper in the ear of the ppl who make the judgement calls for insurance the fear we all know so well...
Till that day I am blessed to have each of you here to listen to my out cry. I know you understand in a way no one else could. Thank you with all my heart I appreciate you.
|
|
|
Vickyann
Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
|
 |
|
|
SagePatientAdvocates
Senior Advisor 
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 25 2009 at 6:47pm |
|
Dear Vickyann,
Don't mean to get you further upset..You are rightly concerned to try and make sure what is going on...for yourself and especially for your children if your relative was your sister...maybe...but just maybe in my view....but if not I would demand a full panel testing... I don't think you have been properly advised...just my opinion. I have a dear friend on the FORCE board who is BRCA1+ and BRCA2+...it is rare but it happens.....Being triple negative is a clear hallmark that calls for BRCA1 testing in my view..I would fight for additional testing.. good luck to you!!!! all the best, Steve |
|
|
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
|
|
|
|
|
Nancy
Senior Member
Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 25 2009 at 7:49pm |
|
Vickyann,
Do not be upset sweetie. I would think that someone can make a call and inquire just why they did not test for both. I wonder if it was the onc who ordered the test. Who did order the test?
I don't just want to whisper in the ears Vicky..I want to scream it from the roof tops. Those people siiting in the cubicles who make desisions which impact all our lives, need a rude awakening. Steve said it well in another post about Taxol. You need a magnifying glass to read even the warnings as to the drugs. Done purposefully...you betcha!!
If we actually had someone explain in laymen's terms what the warnings mean, I doubt anyone would be taking these drugs. We have had several women report serious side effects as to Taxol and Taxotere. English Jan was one. She thought she was going to die.
It may not be too late Vicky.
Many hugs,
Nancy
|
|
|
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 |
|
|
|
|
vickyann
Senior Member
Joined: Sep 25 2008 Location: Texas USA Status: Offline Points: 127 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 26 2009 at 3:03pm |
|
Nancy, I went for genetic testing at my onco ofc. I took the BRCA test results on family member so my insurance would pay. When they called me with results (and to tell me they would also mail the results but wanted to give me the good news). She said they did not test you for BRCA one, her words were I trust their judgement and they (BRAC test center) did not see the need....... My emotions at that moment was I should be so happy, then I thought why..what ..ok...great news..thank you...yes i am happy..I hung up and my husband said was it good news and I said yes..he said you don't sound excited and you have been praying for this..he seems displeased with my lack of joy.... I do not think he understands it is comforting to close a book on any part of this journey. Because the BRCA one was not tested the book is open...When I get the paper results I will call and ask.... I agree with everyone else about the toxins in chemo, I was very sick and had to go get things in my port for nausea. I wanted to live and did not have a choice.
Nancy, I went to Houston for the test for polyphenon E study. I did not qualify because evista for bones could be a benefit. I had to stop the drug and return to Houston May5th to try again. I hope this is a good choice.
I am hoping to build up immunity. There is a chance i could get the placebo. The good part is they give me a complete work up, mamogram, biopsy of my healthy breast, blood test etc.
i see the onco also. I feel someone will be watching me for the next six to nine months . That will get me to almost Christmas and that will get me to the 2 year mark. Then I will work on getting to year 3.... Nancy, God Bless you for caring about us..
|
|
|
Vickyann
Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
|
|
|
|
Nancy
Senior Member
Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 26 2009 at 5:04pm |
|
Vicky,
There are things that you can do to help your immune system and one is Vitamin D3. Such a simple but very effective little vitamin to take. If you haven't had your D levels done please do so. They are to be around 80 for someone dx with cancer. That would probably be way after you have taken it for a while. Lori takes 5000 iu's a day, and has been doing so for a very long time now.
Do not let any Dr. tell you differently. They simply do not know, as they probably had only one hour of training on this in med school. The pharmaceutical companies write the medical books, so what can you expect. And...the doctors are bribed.
Lori contributes the muscle and joint pain she had before dx to low D levels. The pain during chemo to the drugs and the fact that they were telling her not to take any vitamins, the pain after chemo, until she got her D levels up was also bad. She just ran 2 miles the other day and said that was the fastest she has ever run 2 miles.
Lori has never gotten on any bc site, but now...all of a sudden...she is researching everything that she can. The lymphocytes, the immune system, the thymus, all the ways she can fight this damned beast so it will not come back. Not with drugs Vicky, with all the things that have been around for thousands of years. She is also going to do the biodentical hormones. If you can, take Selenium also...and I know you have to check with the onc before doing so.
She too will be at the 2 year mark in June when she was dx. She is worried that due to the fact she had rads...did that damage the thymus to the point where it will not function properly? They don't tell you that when they say you have to have rads. Lori is a nurse also, so all of a sudden the nurse in her is waking up and remembering all that she was taught about the human anatomy.
Ronda does not get on the site much anymore, but she was telling us about the D when I frist joined in July of 2007. No one is listening, and yet it was on the news for a while, and is now gone bye bye. The pharmaceuticals cannot market the D, so the media just is told not to hype it. Heaven forbid that there wuld be such a simple solution to so many diseases. I'm sure some one would be out there screaming that the D will damage your body.
There are very few cancer clinics here in the states which prescribe complimentary medicines/vitamins when you have chemo. That is so very very wrong. I don't care what anyone says!! Who do you think tells them not to prescribe it? The pharmaceuticals!! They say they will interfere with the chemo, and yet there are no studies proving that they do.
All of you women are going to have to start researching what you can do to heal your bodies after this chemo. Do not allow your doctors to tell you that this is "the new normal". That is total BS!! They only want to prescribe another damn drug and then the drug has a recall or there are lawsuits because many are dying from taking it.
I had a woman say to me the other day that she thought since all the products coming from China were somehow/some way tainted, that China was trying to kill us all off. I said that we don't need them to do it, our government is doing a great job!
Are you saying that you were taking Evista? That is like Fosamax, right? I refuse to take the Fosamax anymore. I stopped a month ago, and guess what? I can now swallow without difficulty. Gee....do ya think it might have been the fosamax? It has a warning form the FDA. Of course that is buried in the news!
Sweetie I know that you want to live, and so does Lori and every person ever dx with cancer. It is just a damn shame that you have to destroy your body by taking the drugs they say will kill the cells. Oh but the drug comapanies do not give a rats a$$ if you are never the same. Ronald Regan went out of the states for treatments. What does that tell you?
Bev...Yankeespie and I email or talk on Paltalk or on the phone almost every day. She had a bilateral, and that's all she will have done. And even though she always had a pretty healthy diet, she had added more things and will do everything she can do.....naturally to fight this beast and to make her body healthy.
Your onc was wrong for not insisting that they test you for both gene mutations. Dead wrong!! You need peace of mind!
WOW! I just wrote a novel...felt good...now take care sweetie.
 Hugs,
Nancy Edited by Nancy - Apr 26 2009 at 8:22pm |
|
|
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 |
|
|
|
|
vickyann
Senior Member
Joined: Sep 25 2008 Location: Texas USA Status: Offline Points: 127 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 26 2009 at 6:50pm |
|
Nancy,
You may not understand how your letter spoke to me, I have had a so much pain in my legs. When i get out of bed I feel 100 years old. It gets better in a few minutes but it hurts all the time. I do not take anything for the pain. I make myself go walk and it gets much better. I walk jog for about an hour. Lately my back and shoulder feel stressed. I think your letter and mention of Vit d3 is a great suggestion. I know your letters touch so many ppl and certianly have help me.
I feel from all who write, the main fear is recurrance. Once you have gone thru chemo you think you can do anything....but chemo again. So many brave women here have done it. I admire all of the people here on this site. For I know for sure if you come here you have hope and you are a fighter....
Thank you for the interesting letter. Very informative.
|
|
|
Vickyann
Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
|
|
|
|
Nancy
Senior Member
Joined: Jul 23 2007 Location: Altoona, PA Status: Offline Points: 3814 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 26 2009 at 7:52pm |
|
Vickyann,
One other thing you may want to get is Turmeric. Organic ground turmeric. You mix about 1/2 teaspoon with a little olive oil and a pinch of black pepper. Put it on everthing,. Eggs and in soups and meats, and on vegetables. It is great for the joints, and has been around for thousands of years, and is a cancer fighter!!
You can get the capsules, but it is not nearly as potent. Get the book...Anti Cancer, A new Way of Life by David Servan-Schreiber. Many great suggestions on fighting cancer. He has had brain cancer 2 times and beat it.
Eliminate all sugar and white flour from you diet. Cancer cells feed on sugar. Get that D3...at Walmart, Twin pack, 100 tablets each and 1000 iu's each tablet for $6.00. It has to be cholecalciferol. I did post an article on D3 in the news forum a while back and it is on the first page. I also have updated articles on D that I will send to you. BTW...I am not working for a vitamin supplier!!
 Bev...Yankeespie, is taking 10,000 iu's of D a day. Ronda told her to take that. You also should take magnesium, as that goes hand in hand with the D3.
My husband has had psoriasis since 1966, covering his entire body, with the exception of his face. He and I started taking D3 June of last year. He was taking 1000 iu's and then in the winter has been taking 2000. He does not have one place on his body where there is any psoriasis. It is the immune system. He has done nothing differently other than the D.
Do not rely on your doctor to get your body well, they will only prescribe more drugs, and you body does not need any more drugs. Take matters into your own hands...your body...your life.
Many hugs,
Nancy
|
|
|
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 |
|
|
|
|
sibu
Senior Member
Joined: Jun 27 2008 Location: FL Status: Offline Points: 660 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 26 2009 at 8:11pm |
|
Random comments--
Turmeric is a wonder!!! I just buy plain capsules, not Nancy's organic mix-it with oil type, but it has helped tremendously with the muscle/joint pains. It's also a natural immune boost. Nancy, you'll be glad to know that the vitamin D connection was covered in the tnbc teleconference the other day. As far as after-chemo treatment, I'll keep shouting from the mountain tops that bioidentical hormone replacement therapy has saved me. Joint and muscle pains are often directly related to a loss in progesterone and bhrt is more effective than Fosomax for bone health, without the side effects. |
|
|
Donna, age 42
Dx IDC 12/06, 5/18 Nodes + BRCA1+ Double mast. 1/07 Chemo 6 X TAC 6/07, rads 10/07 Hyst./Recon. 12/07 |
|
|
|
|
vickyann
Senior Member
Joined: Sep 25 2008 Location: Texas USA Status: Offline Points: 127 |
Post Options
Thanks(0)
Quote Reply
Posted: Apr 27 2009 at 7:05am |
|
Donna,
Great information.
I was wondering if our hormone receptors do not work and we take bio hormones do we run a risk of getting positive cancer. Do you know if we have any danger in this area? When you went to doctor to get on bio did they have mention anything to be cconcerned about?
Does anyone have an opinion about the green tea study (polypheon E study)
Thank you all for helping on my self help program..:-)
|
|
|
Vickyann
Dx Christmas/07 Stage2 Grade 3 no nodule braca neg lung nodule no growth TAC x 6 no rad finished chemo June 08 reconstruction 12/09 |
|
|
|
|
Jennine
Newbie 
Joined: Mar 27 2009 Location: Long Island, New York Status: Offline Points: 21 |
Post Options
Thanks(0)
Quote Reply
Posted: May 03 2009 at 11:22am |
|
Whooo Hoooo Nancy, you go girl!!!
I've been talking about these types of supplements too! Tumeric is awesome, it helps me with mild arthritis. Vit D3, I take it in liquid form, it's great. 2 tsps have 1000 iu and I take it 3 times a day. I take green tea, I eat lots of ground organic flax seeds. I also take flax oil...hmmm lets see.
I take lots of Vit C...I don't care what they say, it helped me heal up nicely from my surgery, I know it did! I take B-100 complex, great for folks on chemo..(but of course talk to the onc first, always) and...resveratrol. I eat as much organic fruits and veggies as I can.
Also eat lots of alkalining foods. Almond milk is great, did you know, parsly is a super food?? Who knew...eat it like you eat celery, put it in your salad, lots of it. Cancer simply cannot live in an alkaline enviriornment. Read, The Acid-Alkaline diet for optimum health..by Christopher Vasey, N.D. Also, Immune for life by Arnold Fox, M.D.
I also test my PH during the night (saliva or urine) you can buy the ph strips in the health food stores.
A great hot healthy cereal is Bob Red Mills, Hot and Tasty Cereal, it's excellent, gluten free and sooo darn good for you.
Point, there are so many good things we can do, natrually, without drugs to help our poor immune system. Especially after it has been so compromised by cancer and chemo..oh that "c" word, speaking of it,
I start on May 11th..bahhhh hummmm you know!!!
 Hugs to all,
Jen Edited by Jennine - May 03 2009 at 11:27am |
|
|
Age 44; DX 3/25/09 IDC TNBC
Lumpectomy 4/10/09 1.8 cm Grade 3 Stage 1 Node Negative/Clear Margins No vascular invasion Rt breast |
|
|
|
|
outnumbered
Senior Member
Joined: Feb 02 2009 Location: New Jersey Status: Offline Points: 525 |
Post Options
Thanks(0)
Quote Reply
Posted: May 03 2009 at 12:23pm |
|
Ok this has been worrying me, so I have to just say it. Please do not misunderstand, I am not knocking natural immunity boosting, but please tell your doctor everything you are taking. Some natural herbs and such can negatively interact with chemo and possibly cause the chemo to be ineffective. Although we think of chemo as drug made up of toxic poisons that are a necessary evil, many are also derived from natural sources like fungi (taxol) and other herbs. Even natural remedies can have adverse reactions. Just please be safe and keep your oncologist in the loop.
Hugs!!!!
Edited by outnumbered - May 03 2009 at 12:30pm |
|
|
~Sara
DX @ age 40 6/24/08 Stage 1 Grade 3 BRCA1+ 187delAG BMX (nipple-areola-sparing) 8/5/08 Redo BMX (remove nipple and areola) w/ Lat Flap 7/6/09 BSO 9/3/09 NED since 08/05/2008 |
|
|
|
|
CarynRose
Senior Member
Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
Post Options
Thanks(0)
Quote Reply
Posted: May 03 2009 at 1:22pm |
|
Sara,
You are so right. I would not start taking any supplement that is not run past my naturopath. That is why I love CTCA so much because my doctors, naturopaths, and mind/body professionals are all under one roof.
Recent example: I am currently on Xeloda. I'm also recovering from treatment for leptomenigeal mets that has caused anemia for which I need B Vitamins and Iron. We were going to go out and buy an iron supplement and a B-complex. Turns out that there is Folic Acid in both. If I hadn't spoken to my naturopath, I would not have known that when taking Xeloda, I can't take any more than 400 micrograms (mcg) of Folic Acid per day. What I would have ended up with if I'd bought both products is innards that would be pretty messed up.
Sara is right -- always check with your doctor.
Many hugs,
Caryn
|
|
|
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 |
|
|
|
|
Jennine
Newbie
Joined: Mar 27 2009 Location: Long Island, New York Status: Offline Points: 21 |
Post Options
Thanks(0)
Quote Reply
Posted: May 03 2009 at 2:42pm |
|
Hey Ladies,
I am not doing chemo yet. When I do, I won't take anything unless I check with them. I did mention to my onc about some things I am taking and he wrote them down and eliminated most, especially all antioxidants. I am only doing mild things (for the moment) to help with my mild arthritis. I am not on any prescription medication. I mentioned in my post, check with your onc, always. When you are in treatment, or on prescription drugs or have ANY medical condition, it's a different story. I agree with you ladies totally, believe me. When I am finished with treatment, to keep my cancer at bay is a different story. It's a life long commitment, I want to do everything in my power to help my body in the long term. Eating well, and exercising of course is a must. I slacked off for a year, not good. lol But I will get back.
Everyone take care..
Eat well,
Hugs, Jen
|
|
|
Age 44; DX 3/25/09 IDC TNBC
Lumpectomy 4/10/09 1.8 cm Grade 3 Stage 1 Node Negative/Clear Margins No vascular invasion Rt breast |
|
|
|
|
trip2
Senior Member
Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
Post Options
Thanks(0)
Quote Reply
Posted: May 03 2009 at 3:14pm |
|
During my last stint at the hospital the news of my being anemic was told to me by my doc. He gave me a prescription for Folic Acid.
|
|
|
Stage 2 2003
Stage 1 2007 BRCA 1+ |
|
|
|
|
SagePatientAdvocates
Senior Advisor
Joined: Apr 15 2009 Status: Offline Points: 4748 |
Post Options
Thanks(0)
Quote Reply
Posted: May 03 2009 at 3:37pm |
|
Dear Pam,
folic acid is nice but chocolate is better... 
http://www.goodhousekeeping.com/health/nutrition/need-know-chocolate-1001 "Despite its name, a typical "milk" chocolate bar provides less than 10 percent of the daily recommended amount of calcium. But, surprisingly, a government survey shows that chocolate and products containing chocolate make substantial contributions to our daily intake of copper, an essential mineral in the prevention of anemia and, possibly, heart disease and cancer. Chocolate also provides significant amounts of magnesium, which plays a role in regulating blood pressure and building bones." but the trick is that the chocolate therapy must be taken over a 30 year period to prove to be totally efficacious....so my dear, you must promise to report on your anemia in 2039 and then we will discuss all of this again. But then again, who would argue with "Good Houskeeping"? I think this must be the real deal.. all the best, Steve |
|
|
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
|
|
|
|
|
trip2
Senior Member
Joined: Jun 03 2007 Location: Under Palm Tree Status: Offline Points: 8549 |
Post Options
Thanks(0)
Quote Reply
Posted: May 03 2009 at 7:21pm |
|
Hmmm 2039? I better get busy with that chocolate, happen to know where some is sitting very close by! I imagine I'll be beyond the pearly gates by 2039 but maybe if I kick up my chocolate involvememt I might make it! Now that would be cool.
Thanks for the tip.
 |
|
|
Stage 2 2003
Stage 1 2007 BRCA 1+ |
|
|
|
|
CarynRose
Senior Member
Joined: Aug 04 2007 Location: Robbinsville, NJ, USA Status: Offline Points: 960 |
Post Options
Thanks(0)
Quote Reply
Posted: May 04 2009 at 12:05pm |
|
I"m between a rock and a hard place. Folic Acid would help with my iron levels, but it would screw up the Xeloda I'm on. I'm not allowed to have more than 400 mcg. of Folic Acid per day.
I really want to have more energy.
Caryn
|
|
|
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 |
|
|
|
Topic Options|
Post Reply
|
Page <1 345 |
Tweet
|
| Forum Jump | Forum Permissions You cannot post new topics in this forum You cannot reply to topics in this forum You cannot delete your posts in this forum You cannot edit your posts in this forum You cannot create polls in this forum You cannot vote in polls in this forum |