??Aches and pains while on herceptin alone
 

I started herceptin in June of '05 and will be on it for a year. Ive noticed since it started, I've had no bad side effects such as I had while on standard chemo. However, I have noticed increased general aches pains, and stiffness esp. in my joints-- hips, knees. feet, elbows and hands. At first I attributed these symtoms to the residual effects of Taxol, But I finshed my 4 rounds of Taxol in August of '04. I still do have some minor numbness on the tips of my fingers.
But the stiffness stuff has me stumped. Now I attrubute some of it to age related arthritis ( I'm 65 ) though I've never had arthritis pre cancer and treatment. ( dx. 3/04 )
I'm wondering if any of these symptoms are related to the herceptin-- my onc. really doesn't know or comment on it.
Curious to know if others have had the same experience.
Carol

I have noticed the same achiness, but didn't do taxol. I had cmf. I just put it to arthritis, though I'm only 42. Some mornings it's hard to come downstairs when I get up. The days I have herceptin I still get the chills afterwards, but they give me benadryl with it so I sleep for awhile and then I'm fine. Juanita

moving pains for 24 to 48 hours
 

after taking herceptin alone, it is quite common...it is usually a very good sign that it is really working...it is also rather normal to get a fever and chills and to feel a sudden urge to sleep--about 6 to 8 hours after taking it.

I think the fever is a very good thing and should be promoted not hampered...therefore, I recommend not taking any pre-meds with the herceptin and not taking any fever reducers or pain killers after... I am also not in favor of using benadryl at all...as it dampens immune response rather than revving it up at a time when you need it most. Of course, not every one agrees and each person has to chart their own course.

Gina
(Dx in 1997, mets since 1999, use Herceptin alone...no chemo or rads since 98)

If you are taking any AIs (femara or arimidex), they can cause joint pain/stiffness.

Gina, they give me Tylenol before Herceptin. Do you think that can also bring down the immune system in some way. I pushed them to stop giving me benadryl and they agreed.

Let me know your valuable thoughts on Tylenol.
I always get a cold nose for some reason from Herceptin but never got fever.

Dear Gina, I wrote a post not too long ago about the same thing. I am on Herceptin alone and feel so achy in my hips and other joints. I've just gotten used to it,I guess. I made sure my bone scan was normal.

Love, Janet

I certainly have bad aches and pains as well. At first my Onc didn't believe me, then I called Genetech and talked with them, my ONC was called as well, needless to say I was finally beleived. He had said that no one else using herceptin had those reactions, but I said everyone is different. So I do have a pain med to take, and ONLY take if I really, really need it. I will be the big 50 this year, and feel like I'm 80. LOL

thank you all for your replies.
Another question-- do you ever regain your full energy level after chemo, rads and now herceptin. I'm a pretty active person but I get so fatigued at times I just have to rest more. Some mornings I feel as though I haven't slept at all. ( that is true , sometimes !!)
I go to the gym, walk, use the nautilus, swim, etc. But I feel as though I'm always pushing myself.
Anyone else feel more fatigued and need more rest than usual ??
Carol

No, I have yet regain all of energy. I finished my Chemo on Aug. 15, 2005 and started Herceptin the next week. I am always so very tired when I get home from my infusion for at least 48 hours. I guess it's part of the whole picture and hope it will soon get better.

Muscle & Joint Aches
 

I turned 40 this year after dose dense 4 AC 4 Taxol (which did cause some neuropathy) but onc. cut last 2 doses in thirds and most of this has cleared up. But since being on Herceptin alone I have a great amount of muscle and joint aches I never had before. I am also active and I thought my body was just recovering from the past years treatment but I am starting to believe it is from the Herceptin. I will see my onc. soon will ask if side effects like this have been reported. I am on no other medications.

Mary

I am on Herceptin weekly. I do have muscle aches and joint stiffness and I blame it on the taxol because its that very deep bone ache. I know chemo can cause arthritis or even make it worse. As I have posted here before I am able to manage my symptoms by using flaxseed oil either by capsules or from the bottle. I don't take any medications over the counter or prescriptions if I can help it as it all brings down the immune system which we don't need. I have used glucosamine capsules before the flaxseed and that worked for me. I like the flaxseed because it helps my dry skin, hair and nails. I am ER/PR neg. for those that are pos. you may need to be careful of the flaxseed. I would probably do the glucosamine instead. Each person has to see what the dosage is that works for them. I hope this helps. hugs, Sandy

I too have noticed just a little bit of achy joints with Herceptin in the hips and also my back aches a bit. However, I have only been on herceptin a few weeks so not sure if achy due to something else of Herceptin. RP

I have the fatigue too and wonder if it will ever go away. I try to work out every day, but some days it's hard enough just getting out of bed. And my job gives me a pretty good workout every day. The pain in my lumpectomy site still bothers me too. And it's been almost a year and a half since the surgery. How long does that last?

Just wondering if anyone has had back pain after first starting Herceptin? Seems my pain began shortly after my first dose; however, I have been moving some large boxes lately. Hope it is just sketal-muscular and not related to bc or herceptin; we'll see how it feels in a few weeks.

Aches
 

I do not have back pain just general achiness I am sure it's just the moving.

Sandy- you mentioned flax seed oil is this different or in addition to a diet w/ flax seed? I try to follow Diana Dyer's anticancer diet, so I get my flax seed in my "Standard Soy Shake."

I am confused as to what supplements to add to my diet for the best protection. I am new to the site so there may have been discussions that I missed.

THANK YOU all for being here.

Mary

It's hard to know which meds are causing what side effects...
 

I have a hard time filtering out where my aches may be coming from. I finished chemo in March '03, and have had body aches from that time to the present; mostly in the back and rib area. My ribs are quite tender to the touch; possibly my fibromyalgia contributes to those muscle/tissue type of aches. The joints are stiff, but that could be due to my age-55- as well.

I have taken Arimidex since April 04, and thought that might be contributing to the aches. But my onc says that over time (like a few months) one's body should adjust to the medicine, and those side effects should diminish.

I started late herceptin in May'05 and the aches stayed about the same; do experience some tiredness for a couple of days after treatment.

In Oct.05, I started Actonel due to bone loss from the Arimidex. The aches have increased in intensity and area since starting the Actonel.

With such an assortment of medicines and treatment, how is one to know what causes our discomforts? Someone asked about fatigue; I had a great deal of fatigue for about a year's time after chemo treatment. Discovered that some of it was due to the nightly Ativan I was taking for sleeping, and the Celebrex for body aches. So you may need to see if some of your fatigue is due to medications. Even now I have days of good energy, and days of low energy.

Quite a few people have posted here questioning body aches due to Herceptin. In the clinical trials, I wonder if (some) trial participants can really sort out side effects in a way that is accurate. When I finished treatment, my head was in a big time fog for quite a while. I question how useful and correct my assessment on side effects would have been. The Herceptin is continued directly after the big knock out drugs have been given. Can a participant know what is lingering from the chemo vs. what side effects are coming from Herceptin? It would be hard to know.........

I also have a lot of body aches. I finished 4AC/4taxol in Aug. 05. I had such severe bone pain with taxol I just contributed it to damage done. At the ripe old age of 34, I know I now have some arthritis. Now that I think about it the pain has been different since starting herceptin. I have not had fever or chills since first starting herceptin last yr. Does this mean it may not be working?
MichelleI

Agree, it's hard to tell where the pain is coming from
 

I was bumped into menopause via Lupron, given Femara, Herceptin, and Zometa all at once -who can tell which is causing my REALLY bad muscle and joint aches? It could be the dramatic drop in estrogen too. Right before starting all this stuff I'd plop myself on the floor to play with my son and pop right back up again

Now the thought makes me cringe - ouch!

Granted - because of this I went from a Stage IV diagnosis (liver and bone mets) to NED after only 2 HErceptin treatments - so I can't really complain.

Well, I do complain - but I am grateful that something is working - even if it hurts.

I still have pain in my lumpectomy site also. I had surgery in Sept. 2004. I am now on a year of herceptin and have been on Arimidex since Apr 05. I have joint pain especially in my feet. If I sit very long my hips and knees stiffen up also. I am almost halfway through the herceptin now but I feel more fatigued as time goes on. I will be so glad to have a break from the meds!!! I had one good month between finishing rads and beginning Arimidex that I felt really good with energy. Has anyone every taken a short break from arimidex or tried something else that is not so hard on joints and energy level

dskdrive, I don't think you will want to take a break from the Arimidex, as it may possibly be helping you fight recurrance. The relief would be welcomed, I know, but you would wonder if it is worth taking that chance.

hello again
 

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.

Aches & Pain
 

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

Whew!
 

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.

Me too ...
 

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

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

Epsom Salts for aches and pains
 

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

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

To unregistered re. aches & pains while on herceptin
 

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

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)

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.

Contacted Genentech
 

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

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

Contacted Genentech
 

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

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

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

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

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).

thanks Gingace!

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