Herceptin not working...

[Dace]

I was diagnosed on 1/31/2005 with invasive ductctal carcinoma er/pr- and her2+. I had a lumpectomy, 10 of 17 nodes were positive, followed by 4 ac and 4 taxol. Then at my 6 month post surgery mammo, they saw calcifications, so i had another biopsy which did show cancer, so I had another lumpectomy on 10/11/05 (3 days after my 34th birthday), no clear margins. Had another lumpectomy on 10/31/05 and then started radiation 12/5/05. Finished rads on January 06. In April I started herceptin. Also in April, I found a red spot on the lumpecotmy breast, which after 11 days of antibiotics and no response, turned out to be Inflammatory Breast Cancer. Had a mastectomy on May 18, 2006. two weeks after my surgery I saw a spot just above the scar that did not get better after a week, so I went back to see my Dr. and guess What? still have IBC! Still doing herceptin although it does not seem to be working. My current onc does not seem to agree. And I was told that I do not qualify for the tykerb clinical trial. I finally got a referral to City of Hope (here in Southern California) and the onc there wants to start Gemzar/Carboplatin to see if we can get it to respond to something and then maybe eventually a clinical trial for DD chemo followed by a stem cell transplant. I am beyond frustrated and scared. I am 34, my children are 6 and 8 and I want to see them grow up, so i am willing to do anything to make that happen, I just need hope that this could still be ok.
Thanks...

[Cathya]

Dace;

I can imagine you are scared and frustrated! Jean, although in a different situation, was equally frustrated and finally...somehow, was able to make a trip out west to see Dr. Dennis Slamon (Seattle I believe). I think, given the complications of your situation I would email Jean (you can search her out on this site) and ask her about her experience and the cost, etc. You need the absolute best oncologist and the one with the most experience and knowledge and in my view he is the one. Jean is the only one I know of on this site who has seen him so I would start there. Don't give up hope....keep us informed. Other will have ideas and experience in this area. God bless.

Cathy

[Esther]

I didn't know Dr. Slaman was seeing patients. But he and Dr. Mark Pegram are at UCLA in southern CA. You can arrange for a second opinion there.

I did it and am very glad I did.

[fourboysmom]

Oh Dace, Your post touched me- I am sorry you are going through all this. You are young, with little ones. I will certainly keep you in my prayers and positive thoughts! This disease stinks, it really does. Hang in there. With love from the other side of the country, Janet in CT

[lu ann]

Dear Dace, There is a lady on this board named Sandy who was dx. with IBC. She has been around this site since the beginning and would be help to you with your questions and fears. I know how sad I felt when I was dx. 15 years ago and had 3 little ones, 7, 4, and 8 mos. I was dx. with recurrance Feb 04 and it is no better when they are 20, 17, and 13. The thought of leaving your kids behind is a horrible feeling. Just take one step at a time. Blessings, Lu Ann.

[Joy]

Hi Dace, I'm sorry for all of this nonsense (I also have 2 young children and stage IV BC). I was just at my oncologist's office discussing my next path and she had hoped to look at Avastin, but said that the studies that came out of ASCO showed more benefit to IBC gals. Don't know if that helps and I haven't looked this up specifically myself, but it is easy to look up the ASCO data.

Best, Best wishes to you!
Joy

[R.B.]

Has diet figured in your thoughts as another factor in your armoury.

You might like to look at the Greek Diet thread and Rhonda's breast cancer diet.

http://www.her2support.org/vbulletin...ad.php?t=24410

http://www.prevention.com/article/0,...-270-1,00.html

Diet and particularly the balance and intake of fats has a much bigger impact that many realise and works at very fundamaental levels in the body.


http://www.her2support.org/vbulletin...ad.php?t=24621

The articles posted in this link particularly "Fatty Acids and Cancer" give an idea as to the influence of fats and particularly omega three and six in the diet.

http://jn.nutrition.org/cgi/reprint/...urcetype=HWCIT

Balancing the omega threes and sixes is particularly important. A number of sites and trials might suggest about 2 grams a day of DHA from fish oil and some flax seed or oil for ALA. (search flax seed and flaxseed for the deabate on flaxseed or flax oil for Those with BC)

This one would be useful to take along to any discussion with your medical advisors.

I am not suggesting miracles here just a risk reduction factor that may help a lot or a little. Prior to BC a trial has shown that higher DHA and EPA in breast tissue may reduce risk by 69 % for the women in the top third for DHA and EPA in breast tissue fats

Fats are powerful and diet changes generally should be discussed with advisors.

RB

[Jean]

Dace,
Please know that you can contact me and I will help in anyway that I can.


Jean

[madubois63]

Dace - I have been dealing with Inflammatory BC for 6 1/2 years and am still going strong! I was 36 at diagnosis and my kids were 8 and 10. I did the AC and then Taxol, modified radical mastectomy, Tamoxifen (4 1/2 years) and then 32 radiation treatments. I had 4 1/2 years of remission. A year and a half ago, I had a relapse and this time my onc hit it from all angles. I did weekly immunotherapy (Herceptin), chemo (Carboplaten and Taxotere) three weeks on and one week off and daily anti-hormonal (Femara). I had a great response in 3 months and achieved remission after 3 more months. The IBC has again been in remission for a year and 3 months. I have since gotten leukemia, but that is another story. You say the Herceptin is not working - Tykerb would be my suggestion. You said you did not qualify for the trials, but thanks to Joe, Christine and all the other hard workers on this site, Tykerb is available for compassionate use. If your onc is willing to work for you, you should not have a problem getting it. Sounds like you may need a new onc??? P. S. If you haven't already done so, file for social security disability now. You should not have a problem getting benefits for you and your children. Inflammatory BC is one of those diseases listed that get immediate approval, and I have heard of some people getting expedited benefits (it usually takes six months). This way you can concentrate on your health and not worry about sick time and a pay check. Your new job should be your health. You can start the application process on line. If you have specific questions that I might be able to help with, please e-mail me anytime. madubois63@aol.com Maryann

[Karen t]

I did see Dr. Dennis Slamon at UCLA in February 2006; he has started taking patients again on a limited basis. You can google his name and obtain the contact information.

[Dace]

I can't begin to thank you. Your post has given me hope that I can actually beat this! I will be starting Gemzar/Carboplatin next week. I will ask her about the tykerb. I am going to look into the disibility. It's just that working is what takes my mind off of all of this and keeps my life somewhat normal. I am actually switching onc as of this week. I am going to the City of Hope a cancer research center here and I feel good about that. I would like to hear more about your story. I will email you this week. They put my port in yesterday, so moving my neck. Did you have pain with your IBC? I would be doing better without the constant reminder. oh well, I look forward to seeing results.

[madubois63]

I can't begin to thank you.
You are so welcome...
Your post has given me hope that I can actually beat this!
Of course you can beat this. Don't let anyone tell you otherwise!! They keep trying to tell me I'm on my way out, and I just keep laughing in their faces!!! Attitude is half the battle. It gets hard, but you have to hold on to what is important and only allow yourself a little self pity at a time.
I will be starting Gemzar/Carboplatin next week. I will ask her about the tykerb.
I know carboplaten, but haven't had the others. I've had some pretty nasty stuff and have made it through. You can too.
I am going to look into the disibility. It's just that working is what takes my mind off of all of this and keeps my life somewhat normal.
Apply for the disability. it is good to have the back up. I am single and don't have another salary to fall back on. I worked through my first round of chemo (6 years ago) and only missed a few days of work - helped my sanity like you say. But when I had the surgery, I left work then did the month of radiation. When I was all done, I continued to collect the disability and was able to return to school and change careers (finally doing what I really wanted to do). Because of the cancer, the state paid for my school. Four years later when I had the relapse, it was REALLY serious and I didn't have the strength to work, my disability was already opened. It may not be the right thing for you, but think about it. It really saved me.
I am actually switching onc as of this week. I am going to the City of Hope a cancer research center here and I feel good about that.
You have to trust your onc. If you have a bad feeling - move on!
I would like to hear more about your story. I will email you this week.
http://hometown.aol.com/madubois63/m...e/profile.html
This is my story up until April of last year. A lot has happened since then - leukemia. I need to update.
They put my port in yesterday, so moving my neck.
You will get use to the port and it is such a good thing. My veins are so shot from all the chemo.
Did you have pain with your IBC?
When it first started, I had shooting pains that didn't last long at all. The surgeries hurt like any other surgery, but there was no long lasting pain that I could attach to the IBC.
I would be doing better without the constant reminder.
I'm not sure what reminder, but just look slightly above it. Try to keep the cancer just below your conscienceness/eye sight. It will always be there, but it is NOT who you are and it is NOT your whole life. Don't let it consume you.
oh well, I look forward to seeing results.
So do I!
..·´¨¨)) -:¦:-
¸.·´ .·´¨¨)) -:¦:-
((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´

[mamacze]

Dear Dace,

You don't have a better role model for IBC than Mary Ann (and Sandy...you should check out her posts).
This is a scarey time for you and it is very hard to concentrate on work and kids while you deal with this disease.
I have stage 4 (mets to the lungs) and 4 kids (who were 15, 13,12 and 5) when I was first diagnosed in 2001. I found if I was to beat this disease and watch my angels grow that I had to make fighting this disease my number 1 priority. so I quit my job and went to work researching every bit of information I could find. This site is a God-send. Getting second opinions from "the best" is a priority. Tending to your own mental health is an absolute requirement so you can put your primary focus where it belongs; being a loving mom to your 2 angel babies and staying with them for as long as you can.
Stay with us and let us know how you are making out.
love Kim from CT