HER2 Support Group Forums - View Single Post - Metasis gene discovered by Komen-research

StephN · 01-31-2009, 12:28 PM

Dear Snufi -

Now that you mention your fibromyalgia we can see how this added in as a chemo complication.

There have been members here (still are) who have MS and manage to get through some form of chemo with that complication. Don't recall any specifically with fibromyalgia.

What do you take for the fibromyalgia? I know there are some new drugs that do wonders for people. Do you have a good rheumatologist who takes care of you?

I wanted to mention Navelbine as a possible drug for you. This is less hard on a person and is very synergistic with Herceptin. It is not normally given for adjuvent, but this is not unheard of in certain cases.

If your fibromyalgia really flares up, I fear that the AI's would aggravate that. Is there an online fibromyalgia support group where you can post these questions? I know there is a big one at Yahoo Groups.

Wanted to mention that the members posting here having survived several years without having taken Herceptin, DID get some form of chemo - you would have to study their "signatures" to see if they only did rads and AI, but this is a rare exception.

01-31-2009, 12:28 PM	#12
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Dear Snufi - Now that you mention your fibromyalgia we can see how this added in as a chemo complication. There have been members here (still are) who have MS and manage to get through some form of chemo with that complication. Don't recall any specifically with fibromyalgia. What do you take for the fibromyalgia? I know there are some new drugs that do wonders for people. Do you have a good rheumatologist who takes care of you? I wanted to mention Navelbine as a possible drug for you. This is less hard on a person and is very synergistic with Herceptin. It is not normally given for adjuvent, but this is not unheard of in certain cases. If your fibromyalgia really flares up, I fear that the AI's would aggravate that. Is there an online fibromyalgia support group where you can post these questions? I know there is a big one at Yahoo Groups. Wanted to mention that the members posting here having survived several years without having taken Herceptin, DID get some form of chemo - you would have to study their "signatures" to see if they only did rads and AI, but this is a rare exception. __________________ "When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau Live in the moment. MY STORY SO FAR ~~~~ Found suspicious lump 9/2000 Lumpectomy, then node dissection and port placement Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR - Adriamycin 12 weekly, taxotere 4 rounds 36 rads - very little burning 3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED! 2003 & 2004 no active disease - 3 weekly Herceptin + Zometa Jan 2005 two mets to brain - Gamma Knife on Jan 18 All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying Continue as NED while on Herceptin & quarterly Zometa Fall-2006 - off Zometa - watching one small brain spot (scar?) 2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava 2008 - Brain and body still NED! Port removed and scans in Dec. Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011 STILL NED everywhere in Feb 2014 - on wing & prayer 7/14 - Started twice yearly Zometa for my bones Jan. 2015 checkup still shows NED 2015 Neuropathy in feet - otherwise all OK - still NED. Same news for 2016 and all of 2017. Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.