??Aches and pains while on herceptin alone - Page 2

01-25-2006, 09:27 AM

Well ladies all this is very consoling.
Not that I'm glad you are having pains and aches or anything just gald I'm not the only one and that maybe it is the Herceptin.

I too have the muscle pain and the joint pain. The joint pain seems to improve if I keep up a regular level of exercise but I have to be careful what exercise.
Did some very gentle Yoga exercises on Sunday and the "bad" shoulder was really acting up on Monday

I started Herceptin with Taxol in March 2004. Taxol finished in July 2004, Herceptin paused for two months while I had radiotherapy.
Was put on three-weekly Herceptin regime after that and have managed to persuade them to keep me on since. I am tolerating it well apart from the above-mentioned aches and pains.

Decision time will be here again in March.

My instinct is to continue, if I can persuade them, as I am the equivalent of Stage III Grade III with all the nodes including post sternum implicated.

At least continue until there is more evidence from the trials as to what the optimum length of time is to stay on Herceptin.

Anyone any thoughts on this? Or is there a more appropriate place on the boards to post my query?
I'm a bit lost since the upgrade.

I haven't been around for a while - trying to get a life, as they say, so hello again to anyone who may remember me although I am a very infrequent poster.

Mgarr · 01-25-2006, 02:10 PM

Well ladies I had a treatment today and asked about the pains. I was given an information sheet on Herceptin (don't know why the onc. didn't give it) anyway under common side effects are Pain in back, abdomen or entire body.

Mary

01-25-2006, 04:49 PM

I've had 2 Herceptin treatments and am now experiencing the hip and other joint pain. Nice to know it's the Herceptin! I was beginning to worry a bit.

Helen · 01-25-2006, 05:09 PM

I am also having joint pain and stiffness and I thought it was my chemo. I have been off chemo though for 4 weeks but I am still having Herceptin weekly. It must be the Herceptin then. I was getting worried that it is something else .....

Helen

Ginagce · 01-25-2006, 09:54 PM

I too have aches and pains which I believe are from the Herceptin. I am also on Arimidex which is probably not helping the situation. But the real pain did not start until I began the Herceptin.

But as long as the drug keeps me NED, I'll keep on taking it til they say stop.

Ginagce

Sukey · 01-26-2006, 04:26 AM

I HAVE JUST COMPLETED 28 TREATMENT DAYS OF RADIATION FOR "TUMOR ACTIVITY" IN THE R BRACHIAL PLEXUS...AT THIS POINT, NO OTHER ACTIVITY...AFTER 7 YEARS OF NED...I WILL BE STARTING HERCEPTIN ALONE IN THE NEAR FUTURE. IT HAS HELPED TO READ THESE MANY POSTINGS OF WHAT I MAY HAVE TO LOOK FORWARD TO...DOESN'T ALLEVIATE THE CONCERNS BUT GIVES ME THOUGHTS OF HOW TO HELP MYSELF THROUGH EXERCISE, REST AND DIET. I AM 64, WORK FULL TIME, AM PRIMARY CARETAKER FOR MY 88-YEAR OLD MOM, CONSIDER MYSELF FAIRLY ACTIVE WITH TRIPS TO THE GYM 2-3 DAYS A WEEK...THANKS FOR BEING HERE...SUKEY

01-26-2006, 08:25 AM

Hi; I had a massectomy (sp) In March 2003 finished ACT chemo in September 2003 and started Arimadex. Although I cannot report major side effects I still have aches and pains alot like I had worked out way to hard; also morning stifness.

I recently disovered something that helped me. I started using Epsom Salts in my bath water 2 to 4 times a week (whenever I take a bath). I EXPERIENCED ALMOST IMMEDIATE IMPROVEMENT. The improvement increases and lastes between baths. There may be other answers but this one is low cost and totaly non toxic so why not try it. I would be interested if it works for any one else. I know I will continue it indefidently.

Epsom Salts has been a long time kitchen table treatment for many things. I have also seen it listed in detox treatments and it is easily avaliable. I buy mine at Target for $1.94 for enough for 4 baths.

Hope this helps someone.

Sue

01-27-2006, 04:44 PM

Sue,
Epsom Salts -- an old remedy for many things that ail ya !!!
I, too ,take an occasional bath in the salts and always feel better. Last year at this time, I sprained my ankle badly and when the time was right, I started soaks with e.s.and it definitely helped.
Good stuff and very under-rated.
Carol

barbaralea · 02-10-2006, 06:49 PM

I think the aches and authritis effects may not be from Herceptin if you are on Arimidex. I understand that it can cause joint and nerve pain. I have pain in my feet from Arimidex

MCS · 02-10-2006, 11:14 PM

Ladies

I've had severe joint aches with taxol plus herceptin (3 so far). For me, AC was a breeze-we are all different. I try to walk even if it hurts later, it keeps the neropathy in control I think. and i feel pain in my mastectomy scar also. I'm 50, and sometimes I walk like my arthritic mom who is 74.

see othe posts regarding l glutamine and b6. it's good for joint pain, chemo or not

Love to all

MCS (maria)

Roz · 02-11-2006, 03:59 AM

I have been on herceptin and Arimidex since January 2005 (recurrence). I find that sometimes I'm tired, and sometimes I feel great and can go and go and go. It varies. I am 58 and was dx 2 and a half years ago. NED, but there is no doubt that I will never feel the same energy levels over a sustained period that I enjoyed before. I can be thankful that I feel so well, and have a lot of energy often.

Ginagce · 02-11-2006, 10:08 AM

I finally contacted Genentech regarding the pain side effects & Herceptin.

Although they said there was data to answer my questions....

They could not give me the answers to my questions as they said my questions all involved "off label" use. I am not stage IV which is why it's still off label, pending FDA approval. But they did tell me they could give data to my oncologist. So I am now waiting to hear back from my oncologist after she calls them.

Basically my questions were:

Original trials with 7% patients reporting bone/joint/muscle pain were done on weekly dosing schedule only.

What is the data from newer trials with non stage IV patients receiving herceptin every three weeks in denser doses.

What is the data from newer trials of patients receiving herceptin on a three weekly dosing who are also taking AI's. Is one perhaps better than the other in combination with the herceptin.

I will let you all know what I find out.

Blessings to all!

Ginagce

Barbara2 · 02-11-2006, 10:14 AM

Great questions! Thanks for doing that......
Barb

Ginagce · 02-11-2006, 10:25 AM

I am now on a one week break from Arimidex at the suggestion of my oncologist to see if my bone/joint/muscle pain is reduced. What went from a cyclical in both frequency and intensity pain has, in the last month, become chronic high intensity pain.

My pain did not start until I started herceptin. I had been on Arimidex for 4 months.

I have also contacted Genentech and am waiting for them to discuss my questions with my oncologist to see if we might find answers there.

Perhaps change of dosing schedule, or, change of AI taken may help.

Will post when I hear back from oncologist.

Unity is Stength. Knowledge is Power. Attitude is Everything.

Ginagce

Lisa1962 · 02-11-2006, 12:14 PM

I'm interested in the responses from Genentech

I went off my Femara for about a month - and I didn't notice a difference in my pain level - and that left only the Herceptin and Lupron

it could be my sudden menopause
or the Herceptin
or the combination

02-11-2006, 03:54 PM

Based on all the info from the replies to my original question Re: is Herceptin the culprit in the increase in joint pain-- particularly hips, feet and increased stiffness overall, it looks like the herceptin may be the reason though I hesitate to jump to conclusions.
It's simply that I never experienced all this until I started on herceptin in June of '05.
Even while on taxol, I experienced deep muscle and bone pain esp. in my legs, I never had the joint discomfort or stiffness that I have now.
Having made all these complaints however, I still am very happy to be taking it for another 4 months- I can deal with all this as long as it's killing off any of those stray, stinking her2 cells.
C

Ginagce · 02-11-2006, 09:08 PM

Lisa, will post response from genentech. I was on Lupron only 10 years back for a case of endometriosis. I took Lupron for 6 months. No pain at all. Yes we are all different and yes we all react to drugs differently but I highly suspect too that herceptin is at least part of my problem.

Ginagce

jsattaw · 02-11-2006, 09:40 PM

I just saw my onc because of major pain -- I'm not a whiner. He's thinking it's caused by the immediate onset of menapause due to chemo and a hysterectomy. I've been on Arimedex and he's taking me off for one month.

Just to give me peace of mind, I'm having a bone scan this week to make sure there's nothing going on there.

It will be nice to confirm whether it's the AIs, Herceptin, or just getting older (I'm 45).

Lisa1962 · 02-12-2006, 09:23 AM

thanks Gingace!

mamacze · 02-14-2006, 09:10 PM

I am late in joining this relevant discussion; but to add another two cents...2 of my docs did not think is was the Herceptin causing the aches and joint pain; but they both thought is was the lack of hormones (estrogen/progesterin) that used to constantly bathe our joints. Without it, we will feel aches and pains. Four months ago, I started taking glucosomine and chondroitin each day, all of my aches and pains disappeared within 7 - 10 days. Now I swear by it.
Love Kim from CT