Herceptin, Fatigue & Joint Pain

I had bad back, hip, and leg pain during Herceptin tx. I asked the onc and of course he had never heard of it, even though I've read lots of posts that state the same thing.

After tx ended, that pain faded out.

I had adriamycin and cytoxan first followed by taxotere. Chemo started around Memorial day last year. My chemo regiment lasted until Labor day. My herceptin was given with the taxotere every three weeks and will continue until July. I did rads the month of October. Tomorrow is my diep swap surgery. One step closer to closure. Best of luck to you Wendy!

Hello ladies, 

Can anyone explain their back pain from herceptin?  I've been on herceptin since Oct 08 (16 round of chemo beginning in Aug 08).  In late Feb 09 I began having strange back pain.  The intesity comes and goes and I'm trying to track it to herceptin but it just doesn't add up.  Throughout the day I intermittently feel like I have knuckles in my spine.  Then out of nowhere for about 2 -3 days I am very uncomfortable.  I have all sorts of symptoms in my back - stabbing pain, shooting pain.

I had a bone scan 2 months ago (2 months after symptoms began) and it came back fine but 2 months later I'm still having problems.  Anyone else have the same symptoms from herceptin?? 

I finished Herceptin in January. The only complaint I had while on Herceptin was a runny nose. I think the pain was probably from the chemo. But now that I'm through with chemo, I take Arimidex, and I'm almost certain the pain is from Arimidex. And unfortunately, that's something I'll have to endure for another 3 years and 11 months.....hehe.....can you tell I'm counting the days?

Honestly, I think every treatment we have to go through does something to our bodies and everyone is different. As my doctor says, everybody's cancer is different, is treated different and everyone reacts different.

I guess the only good thing is we're KILLING cancer and that's the most important thing. I can learn to live with a little joint pain and fatigue as long as I don't have cancer in my body.

I wish all you ladies the best of luck!! Just be sure and advise your doctors of anything going on that's not normal for you.

((((((((((((gentle hugs to all of you))))))))))

I get knee pain and it does fade by the time I get my next dose of H.  I find exercise helps, but sometimes I feel older than my 80 year old mother when I walk down my stairs. 

Hi Terri, my joint pain from Herceptin is in every part of the body (6 rounds of H so far). It is interesting how you have it only in your knees and elbow.
I asked my onc whether the joint pain we all here experience was in fact arthritis and she confirmed although she said "it is more complex and not well explained.. " etc.

Your pre-existing mild arthritis probably got much, much worse with the chemo and H. Maybe you now have both osteo + rheumatoid arthritis in your knees. Herceptin definitely mixes up the immune system. An arthritis specialist could probably help you with the pain/treatment.

I am nearly 4 years out - I finished Herceptin in May 2008. - I was EXHAUSTED after each infusion - I went every third Thursday, and I slept most of the weekend afterwards.  I would nap almost every afternoon for 2 hours for the following weeks until the next infusion.

I also retained a lot of water, had joint aches. no energy.  I took Tylenol for arthritis, Aleve, finally naproxen.  I did get some relief from these meds, and I also found that soak in in a hot bath with Epsom Salts did help.  Tried to exercise when I could, which was hard because of my fatigue.  Really a bummer, the 2 years before I was diagnosed at age 48 I was in the best shape of my life - I had lost about 25 lbs., went to a ladies only club like Curves 4-5 x/week, also walked  2-3 x/week. 

As I am triple+, I was on Tamoxifen for 2 1/2 years, now on Femara.  The Femara is very tough, again fatigue, bad joint pain, water retention etc.  Major weight gain, very depressing.  Now that the weather is better I am trying to walk 30 -45 minutes at least 3x.week.  My GP put me on Meloxicam (an anti-inflammatory) which has helped the joint/muscle pain. It's a never ending battle, but we do what we can. 

Good luck ladies, we are lucky to have Herceptin. 

Its good for me to read that joint pain and fatigue are side effects of herceptin. My doctors say there are no side effects to herceptin. As soon as they start the infusion my nose starts to run. After I feel tired and irritable. I also have the joint pain.

When I read on here that others have some side effects i feel better. I thought maybe it could be something else causing these symptoms.

I started 6 rounds of TCH in Jan. and finished the TC at the end of April. During those 4 months I didn't have joint pain, that I noticed, although the Neulasta hit me hard a couple of times. Then when I continued with the Herceptin alone, the joint pain kept getting worse and worse (as well as my nails becoming weak and breaking easily). It seems to fade in and out, not necessarily based on how long since the last infusion. I thought exercise would help, since that's what's recommended for arthritis. Exercise makes my joint pain worse! I'm glad to read about others having the same kind of pains. It helps a lot. I also have severe psoraisis, which I've had since I was a child. It's gotten worse with the Herceptin also. I've read that it also can cause a type of arthritis that is similar to rheumatoid arthritis, called psoraiatic arthritis. It seems my immune system is really reacting. (Psoraisis is caused by the same virus as chicken pox and shingles).

I also have joint pain and have trouble standing after i have been sitting. I told the Dr my muscles and joints were bad...never heard of it ugh.Laast time I went for herceptin i complained again. He told me to take magnesium. the muscle pain is better but my joints hurt, my nails are weird too, and yes the runny nose! I am glad to see its not just me, you start thinking you are crazy!

its 30 minutes every 3 weeks...my last chemo with taxotere and carbo was march 20 so i was really hoping to feel better but alas not to be! I am aslo have radiology 18 treatments so far 15 to go...looking forward to the end

I have been searching for posts on others' experiences with Herceptin. Glad I located this even though there is only sindy68's post recently. I am on tx 12 of 18 of the Herceptin this week (finished with chemo and radiation) and am experiencing so much bone pain it is scary. It's hard to avoid worrying about the worst case scenario. I also have joint pain, especially if I sit still for long. Hearing that others have had bad side effects actually gives me some hope that these are side effects we have to get thru - and then it will get better. A college buddy (who did chemo but not Herceptin) told me that it was about 2 years after chemo before she started feeling better (energy level). Ugh! But at least she did start feeling better. It's really helpful to hear about others' experiences so I hope more of you will consider sharing what it has been like for you/how you are feeling on Herceptin. Thanks!

I had the Herceptin every 3 weeks and I got my last one a week ago. I was told I would have fatigue with Herceptin and possible stuffy nose. Like you all, I have been exhausted for 10 weeks now and and my nose is still running and stopping up at night so it wakes me. I was told I might get some nerve pain or numbness and have but not as much as I expected. I've had stiffness as one of you described like getting up from a chair and the the first few steps are clumsy. Now, I am so weak or something that my one flight of stairs in my home take all the energy I have to get to the top and I am out of breath at the top. I was in good condition before starting the treatments. I have two more treatments of Paclitaxel and then I am finished. I don't know what comes next. I have had some cardiac side effects which to me have been the most troubling. I have edema that wont respond to diuretics. I hope this helps someone. My team tells me that only two years ago I would not have access to Herceptin and it is so good for my type of cancer, the her2 neu +.