Breast recurrance on Herceptin

[michelemd]

Hello

I have Stage IV BC; went through Taxol/Carbo for 5 months, with Herceptin. The scans were CLEAR -- then, cancer came roaring back in neck, breast and now brain mets. Breast cancer does not seem to respond much to Taxotere or Gemzar -- I am waiting for date soon on CyberKnife for brain mets. (Whole brain has a lot of potential side effects -- read up on this!)

Neck mets seem to have responded to new chemo but the breast is getting horrible - my right breast is a scab and it spread to the left breast and starting to show on the skin.

Am not a candidate for surgery - the top breast surgeon in area says they'd have to take me off chemo for 30 days and do major reconstruction because of lack of skin as I am not fat.

I have a wonderful oncologist, but I think she is a bit too optimistic about my breast issue.

I THINK the Herceptin and Zometa are keepin it at bay in my bones, liver and most nodes -- but I think there must be different receptors in my breasts/neck.

I just read "Racing for a Cure" by Neil Ruzic -- he cured himself of mantle cell lymphoma with Celebrex, Ritucsan and a special custom vaccine.

I was told I dont qualify for any clinical trials.

I really need to do something SOON about the breasts -- I am concerned about too much toxic chemo in the long run.

Any suggestions?? I am taking all the dietary supplements I can think of.

This is a great board!!!

Michele

[Lyn]

That is scary, did they put you on Tamoxefin or anyother drug? Were you still on maintenance Herceptin, I ask this because I have just completed 26 weekly doses of the same comb and also NED. I am on double Herceptin every 2 weeks and take Aromasin. Did your tests include a MRI on the brain or just normal CT's, just proves this monster can't be trusted and we have to stay vigilent. My prayers are with you, and although NED for now I am still researching for the what ifs'.

Love & Hugs Lyn

[Lyn]

P.S. chemo brain, or hormones, of course you are still on Herceptin/Zometa you said so. E.O.M.

Hugs Lyn

[Lisa]

Michelle,
I'm sorry about your recurrence. Sounds like you've got a lot to consider. Although I can't help with most, I'd like to make an observation about whole brain radiation. My BC has recurred to liver, bones, brain and lymph nodes in the past year. I, too, wanted Cyberknife, but really had too many tumors for that. The doc, Cyberknife's creator, was concerned that since I had several small tumors, there were probably others smaller that would be missed by Cyberknife. His concern was that one would go down my spine. (This happened to our friend, Mary, and she is currently paralyzed from the waist down.) So, side effects and all, and yes there are some, I chose WBR, as have several women on this site including its founder. So far, so good. I'll be having another scan soon and I know Cyberknife is always a possibility.

I hope you'll consider another opinion about your breast. Waiting is hell.

Love and light,

Lisa

[Sandy H.]

Just a note on the breast. I don't understand the reconstuction part. I had a radical on the right with a graft to the chest wall and then a profalactic simple mastectomy on the left. The surgeon was able to use the skin on the left breast for the graft. One piece the size of a credit card she took from below the left near the breast bone. Breast reconstruction was not an option for me with IBC and no clear margins. I had to stay in the hospital for 5 days so not to get infection. I had very little pain in fact my morfin pump line fell out right after surgery and I went on oral pain medication only to find out by the third day that it was nausea medication!! Maybe, you should consider another opinion. Best wishes to you. Hugs, Sandy

[Lolly]

Hi Michele, you sound very strong and focused and that's very good as that attitude will help keep your immune system strong. You say you're taking a lot of supplements, so I hope you've discussed what you're taking in conjunction with chemo with your onc. There are some antioxidants that are considered to be counterproductive to chemo, you've probably heard this but it's worth consideration. Here's a link to an interesting article on this subject; I haven't read the whole thing, but found it thought provoking.

http://www.lef.org/protocols/prtcls-txt/t-prtcl-024.html


So sorry you're having such a rough time getting the breast tissue to respond; I do agree a second opinion may be warranted. But remember, the breast tissue concerns are not as dangerous as the brain mets, that has to be brought under control and then you can deal with the rest. Maybe bi-lateral mastectomy, reconstruction at a later date after you've reached NED, which we hope and pray for.

Love, Lolly

[*_Annemarie_*]

I have had brain mets three times (primary bc in 2000). The first met was large back in 2001 and I had a craniotomy. The second two were tiny 7mm in 2002 and 5mm in 2004. The tiny one's I did have gamma knife but I also had radiation to the brain. I have minimal side effects from the radiation. this is your life. We are only given one life so you have to consider the most aggressive therapies available. I also took Temodar for a year after surgery and radiation to the brain. I am on one other message board and I know most all of the top institutes in the nation recommend WBR including John Hopkins, Sloan, Columbia Presb just to name a few. This the protocol. Really think this through because you can have a stroke, a seizure or as the message above said it can go to the spine. I get a brain MRI every three months and if your hair is of concern all mine did come back. I stuggles with this decision so I know it is a difficult one but I am not an oncologist. Christine and Joe are almost oncologist and I know Christine had WBR. Something to think about.

[michelemd]

HI guys

Thanks so much for your posts!!! I dont feel alone anymore!!

I know WBR is not bad for everyone -- I guess I saw too many horror stories. But U of Pittsburgh is having really good results from studies using gamma knife only and complimentary drugs.

Thanks for the opinions. I have a small publishing business and I really need to be in control of my brain for at least the next year, as I am trying to sell it. I hope to write a play about all this.

Will ask my dr about any of the supplements working against the chemo -- was tyring to help it along -- shed cells.

I plan on going back to G Town to manage brain issues, they seem to work best as a team. They will watch very carefully. WBR is kind of last resort for me. Need to figure out breast thing.

I wish you all the best!!!! I want to be helpful to others if I can.
Will start on Navelbine end of this week.

Cheers
Michele

[Lolly]

Michele, I have had Navelbine/Herceptin for both recurrences, first recurrence included skin mets to mastectomy scar, and both recurrences were wiped out. I think you'll find Navelbine very tolerable, the main issues for me were acid stomach and some nausea, and low blood counts. Keep us posted on how you do with it, any questions will be answered promptly as many of us have been on Navelbine. Good Luck!

Love, Lolly

[jessica]

I'm so sorry you're going through this! Keep the faith, there IS something out there for you.
Since you did have some response from Taxol, but not Taxotere, maybe Abraxane would be an option? This is the new formulation of taxane, but in a different delivery suspension.The new formulation allows more of the drug to penetrate the cells, at a higher potency & more selective to cancer cells, all with less toxicity. It almost sounds too good to me true, but it is. Ron posted the link on this board.
It's not approved quite yet, but it is available for "Compassionate Use".Your onc would have to petition for it on your behalf.
I hope this info is helpful...there are still many options for you!
Take good care.