Back on chemo, Taxotere/Herceptin?, Gemzar, Navelb

[Susan M]

Hi all, I hope some are having a much better holiday, it's been a bit
rough here. I could use a little help with research.
I haven't posted in awhile.

I'm set to go back on chemo JAN 4TH.
originally dx March 2002
Her2 +++, ER neg, PR neg. 4.5 cm tumor
normal CA27-29, but suspect tiny nodules in lungs, clean bone scan
neoadjuvant Adriamycin and Taxotere four rounds, 50-75 % shrinkage, lungs cleared.
Lumpectomy Aug 2002. SNB negative nine nodes, may have been micromets reversed by chemo, also clean margins.
Four more rounds of Taxotere combined with 34 rads late 2002
Feb -July 2003 Herceptin.
Stopped Herceptin due to highly reactivated Epstein Barr Virus
and chronic infection history
August 2004 tiny nodules in lungs reappeared
Nov 2004 nodules doubled in size, CA27-29 46
Late Nov lung biopsy surgery confirmed mets
Recovering from surgery
total of 12 days in hospital this month, 5 for surgery, 7 for asthma

OK my onco is talking about Taxotere with Herceptin, or possibly
Gemzar or Navelbine, can anyone direct me to good research info?
Any questions I should be asking?
Should have known this would happen, I threw out the wigs.

The good news, I'm still here and if you knew my history of almost
20 years of chronic serious infections, misdiagnosed for years, torn up immune system, I must have an angel somewhere.

Peace and prayers,

Susan M
Southeast PA

[Lolly]

Susan, hi. Here's a link to a study by Dr's Slamon and Pegram on chemotherapy and Herceptin combinations...hope this is helpful to you. In making your decision in partnership with your onc, it might be advisable to ask him/her to advise you on which chemo's are less likely to aggravate the asthma, and try that route first. Keep us posted on your likely course of action, and hang in there, you'll get the upper hand.


http://www.landesbioscience.com/journals/cbt/news.php?id=992


Love, Lolly

[Lyn]

Hi susan, the weird thing is I read that the Epstein Barr Virus (Glandular Fever) may be the cause of Cancer. I had Glandular Fever and didn't know it because I always had problems with swollen glands and sore throats, tonsils were taken out when I was 8 but remnents still get infected. Having said that I have also been diagnosed for the last 15 years or so with a low grade connective tissue disorder now verified as an overlapping connective tissule disorder Sjorgrens, saliva glands shot. I have been having chemo since 1998, firs AC rads CMF, Taxotere, Xeloda, Femara, heaps of radiation all reoccurences been in lymph glands and skin. Next I had Herceptin added Navelbine, the Herceptin/carboplatinand now just finished 26 weekly doses of Herceptin/Taxol/carboplatin, all scans NED but waiting on biopsy of rash on neck. So out of all this the last combo seems the flavour of the month. I have always had my left ventricle monitored and been above 50% even when I had heart failure last year where 3 valves failed, so since adding flaxseed capsules to my drugs 2x1000mg twice a day, my hair started growing back this time while still on the Taxol my nails look great again and the lump in my neck shrunk, not saying magic bullet but not ruling out, so if I am looking at having another hair loss chemo I will be prepared with the flaxseed. So I have lost my hair 3 times and no other bad side effects to speak of except Xeloda hand and foot blisters. So I hope this fills a few gaps, also I was supposed to only live for 2-3 years at best they put it and I am healthier now than I was before so there are angels everywhere.

Love & Hugs Lyn

[al from canada]

Dear Susan,
Although you had a bad reaction to Herceptin in the past, it only makes sense that being HER2+++ you should add herceptin to your treatment regime. Perhaps if you started by combining it with a more side-effect friendly chemo such as Navelbine, the Herceptin may be more tolerable. I would also ask your onc if pre-treating the herceptin infusion (anti-histamines, etc??) would help. That was the politically correct answer.

However, if it were me or my wife, given the complexity of the medical history, the seriousness of the current condition and the documented success of Herceptin in HER2+, I wouldn't trust my life in the hands of just one doctor. Seek a second opinion OR add key experts to your medical team such as an allergy specialist, an auto-immune specialist, a pharmacological expert etc. Phone the Cancer Institute and ask them if they have documented cases similar to your own (a previous success story), and oncologists with expertise in cases like yours.

One year from now your oncologist will still be having supper with his family. Make sure you are too. Ask questions, and more questions and don't take NO for an answer. If you hurt his (or her) feelings, throw them a box of kleenex and keep moving forward. At minimum, you have to be at least as aggressive as your disease.

All the best,
Al