Please help me undertsand

shannigans · 11-04-2006, 09:11 AM

Hello everybody I am new to this site but not that new to this whole breast cancer thing I was diadnosed in January 06, had a lumpectomy with auxillary dissesction. all nodes were postive, did dd of a/c then Taxol, in March Started herceptn in July, but was having reactions to it, I would shae from head to toe, like I was convulsing, i would get hot/cold flashes, it was nuts. Then in August it was determined that I need a mastectmy, so i was off the herceptin in August. Started rad in September, along with my herceptin again, had the same reaction, so my dr decided to give me lots of pre-meds, liquid benadryl, dexadon and have it drip over an hour and half. Guess what, still had the reaction. So now it has been 3 weeks since my last herceptin treatmet and we will not start them again until December. Now on one hand I do not mind because with all the pre-meds, I do not sleep for the next 2 nights, it's just crazy. On the otherhand I am worried. i was -er/pr-, was 27 at the time of dxg nad have 2 small children to fight for. i keep hearing about how this herceptin is the wonder drug but now that I am not following THE protocol, what does that mean for me?
I know that life doesn't coem with any garuntees but still i want to have the odds working inmy favor. (I am a horrible speller. So sorry)
Shannigans

lindyjo · 11-04-2006, 10:21 AM

Is there any chance you could get into a clinical trial for Tykerb?? I don't know what's out there, just a thought. Isn't it interesting how we all react so differently to this stuff? I didn't have much trouble at all with nausea on the A/C. Lost some toenails and had leg pain with the Taxol, but when I get my Herceptin, I really don't feel any different. I do notice that since I've been done with chemo, my hips really hurt after I sit for a while. When I first stand up after my 1/2 hour drive to my treatments, I feel like I'm 100 years old!

Lani · 11-04-2006, 10:29 AM

If chemo sent you into premature menopause that could explain your symptoms. Estrogen deprivation arthritis is well described. Some are now complaining of similar symptoms on Herceptin and, of course, it would help to know if they are menopausal (naturally or post chemo/ovarian suppression/oophorectomy) or not to tell what the culprit may be.

Many have posted a variety of things they have tried to improve the situation--celebrex,glucosamine,antideptressants, etc. I would just put joint in the search on this site and see!

Hope this helps!

Kaye · 11-04-2006, 11:49 AM

Sorry to hear of the difficulty that you have been having. I don't know if it's the norm, but I also had episode of violent shaking after my first dose of Herceptin. My understanding is that the first dose is a loading dose given at a higher amount--think it may be a double dose but am not sure.
I did not, however, have that reaction after the first time.
My thoughts--and have no idea if this would be recommended or acceptable--but wondered if they could try the Herceptin at a much lower dose and then build it up? Or, if they might possibly try something different to desensitize this reaction you had.
Another thought--perhaps your onc. could call the company--Genentech--if he hasn't already done so. Perhaps they know of different ways to help with this reaction which might also have been reported to them by others?
Do you know if your onc has had any other patients who had this reaction? Have you thought about possibility of getting 2nd opinion?
Take care and hope workable solution can soon be found. All the best!

Bev · 11-04-2006, 09:32 PM

shannigans, Sorry it's been so hard for you you. I think for most of us the premeds are worse than the drug. Try H again. If you are still feeling crummy read all the studies that will come out this December at Asco and try to come up with plan B.

Good luck, BB

michele u · 11-04-2006, 10:04 PM

I'm thinking the Tykerb way to go also. If your having such a bad time with Herceptin, then ask your dr's about Tykerb. It is a pill form and cover Her1 and Her2

Becky · 11-05-2006, 06:46 AM

Another thought is to switch to the weekly dose of Herceptin. It is one third less drug and perhaps you will be better able to tolerate that dose. The only downside is that you have to go every week (but lots of ladies on this site do it that way).

Kind regards

Becky

lkc Gumby · 11-14-2006, 07:05 PM

Just a quick thought, thaT THE SLEEPLESSNESS IS DUE PROBABLY TO THE DEXAMeTHASONE THEY NORMaLLY PUT IT THE INFUSION.

i USUALY JUST Take SOMETHING TO HELP ME SLEEP THOSE FIRST 2 NIGHTS AFTERWARD , ANDTHEn i AM OK,

Linda

jessica · 11-15-2006, 07:44 AM

You've already gotten some great advice from the folks who've already posted.
Here's one more...maybe the folks @Genentech can be helpful? Your doc (or even Joe & Christine) have a Herceptin Rep.that could be helpful to you, otherwise you could go straight to the source.
There's info. on the Genentech/Herceptin website that talks about serious adverse infusion reactions, but it would be nice to talk to someone about the specifics of your situation!
Wishing you lots of luck.
Keep the Faith~