Bone/muscle pain from Herceptin?

[Jane]

hi folks - a question about significant muscle/joint pain while on Herceptin... i'm a 47-year-old Stage 3 breast cancer patient - her2 3+, 6/15 lymph nodes positive, bilateral mastectomy in April 05. Have done 6 months of chemo (finished Oct. 21st) and am now into 6 weeks of daily radiation. I've withstood the chemo amazingly well (thank God).

I've been getting Herceptin weekly since August '05 and am now having pretty significant bone/joint pain. It feels like i've laid in bed for months and am walking/moving for the first time. (That's not the case at all as I have remained very active through all my treatments.)

Examples: I wake up every morning with pretty strong pain just laying in bed....when i sit down and go to get up, it hurts.........when my young kids sit on my lap, my upper thighs hurt. I can't distinguish if it's bone or muscle pain that I'm feeling.

Do any of you experience this? At first I thought it was from 6 mos. of chemo and my body finally rebelling. But now i'm kind of worrying.

thanks for any experiences and help you can give me.

this site is wonderful -

regards,
jane

[Unregistered]

Hi Jane,

I have had bone pain and muscle pain. My pain started about one month out of chemo and after my 2nd Herceptin infusion. The back pain went away for a while and then my elbow started to hurt and of course, now, the back pain is back. I feel like, "one big ache".

I know there was another thread on here about Herceptin and bone/muscle pain. There were several women who said they were experiencing pain as well.

Hope this helps.

Karen

[Ginagce]

I too have experienced substantial bone/joint and muscle pain since starting on herceptin. As a matter of fact, that was my first post when I found this site...asking others if they had experienced same thing.

For me, the pain from the herceptin is worse than anything I experienced during chemo, a/c then taxol.

I wish I could give you answers but I'm still working through it myself. I will however keep you posted on solutions as I find them.

For now, hot baths, alleve and when necessary, percoset is what I'm doing. Exercise sometimes helps, sometimes makes it worse. I'm still trying to find that balance.

Best to you

Ginagce

[al from Canada]

Dear Jane,

My wife has very often sever bone and muscle pain due to the combinations of chemicals, including herceptin, she has had to endure to fight this disease. I would consider it the "cost of doing business" with your oncologist. I would even hazard to guess that most of the ladies here on narcotic medicine is a result of the treatment plan and not from tumor related cancer pain.

COX2 inhibitors such as celebrex or natural ones such as curcumin may help some what but often it's really like trying to put out a house fire with a squirt gun! Unfortunately, Linda has had so many different treatments that it would be impossible to narrow her pain down to any one. My feeling is that pain reduction can be achieved through a program of yoga, meditation, mental guidance, exercise and, if necessary, drugs. That said, although narcotics have gotten a bad rap (because of abuse potential), I strongly feel that they are much safer and effective that taking high doses of OTC tylenol, aspirin, bufferin etc, when taken as prescibed.

If you do take narcotics, remember that you are taking them for pain relief and there is a very distinct difference between nartocic dependance and addiction. Dependance is a by-product of repeated drug administration (which can be resolved through weaning off the drug) whereas addiction is where you would break into your neighbour's house to get another dose! Bottom line: we have the technology where none of us have to live in pain. If things get out of hand then see your onc to modify your treatment plan. Pain sucks but if your making everyone experience your pain..............

Take care,
Al

[Sandy H]

Al is right in saying none of us should have to live in pain. I have joint and muscle pain and I never know if its from the past chemo, herceptin or my fibromyaliga. It doesn't matter because I can keep it under control. I have not had to use any narcotics but I do have them available if I need them. As I have posted before I use Barlean's flaxseed oil. I do use the capsules if I am not home to use the oil. The capsules I find can give me gas so I try not to use them but its better then having the pain. I find that I need to take these at least 3 times a day. I also use glucosame with cetyl myristolate night and morning. If have been busy or away from my house and not taken these and wow, do I ever know it. I am IBC, her2+, Er/PR- so I am comfortable doing this. My oncologist leaves it up to me he knows I will research and have a consultant that I work with. I am not saying this is for everyone each one has to do what they feel is right. I feel anything I take for supplements isn't any worse then those toxic chemicals we put in or on our bodies whether it be from chemo, skin care products, soaps, detergents, bleach, hair sprays, room/car freshners, bug sprays, scented candles, I can go on and on but enough said. You all have a great day and enjoy the blessings that come your way. hugs, from Sandy in snowy Maine looking forward to Texas and hopefully warm.

[CherylS]

I too have been experiencing pain in my back that can really take over at times. I believe it is partially due to going on 2 months of having tissue expanders, but it really hurts! I have a perscription for Vicodin, and usually take one a day, later in the day when things get really sore. This seems to be the only pain med that works for me. Percocet really knocks me out and Darvocet doesn't work for the pain. With the Vicodin I can maintain daily routine. What worries me is that I have read that taking this or other pain meds with Acetaminophen lowers glutothione levels which can cause cancer and hinder healing. I am using Whey Protein and NAC to combat this, but it still scares me. But I get to that point in the day where the pain is ruling, and I just have to do something. Taking one Atavan helps a little too, I think with muscles. Any thoughts or reassurance for me that this is OK or warnings that it is not?
Thanks in advance. I live on you guys' advice.

[sassy]

Jane,

I suffered from significant rib and back pain since starting herceptin/taxol, and continuing thru just herceptin. Was taking darvocet on a regular basis because of this. Finished taxol part of chemo end of August. Rib pain finally went away in October.

I worried myself silly thinking the back pain that continued might be mets, but now feel it is probably from herceptin. Does seem to travel around some.

The pain has lessened, but I still take darvocet as needed. Usually in the evening after a full day. I have talked to my onc about this several times, I don't really like taking a narcotic. Just Wednesday, my onc assured me that I would not be an "addict" and that if the low dose I am taking helps, then that is exactly what I should do. He said taking medicine for pain should never be a concern.

I do feel that the pain will continue to lessen, and exercise and REST helps a great deal. I know sometimes not resting enough is my biggest problem.

Best of Luck,

Sassy
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[sassy]

Jane,

I failed to mention in my previous post, that I am 47, Stage II, grade 2, left mast in Feb. Completed a/c, taxol/herceptin, 33 rads and now on herceptin every three weeks and started Arimidex two weeks ago.

Another contributor to back, muscle, joint pain may be menopause. Perhaps you were like me and "slammed" into menopause from chemo.

Sassy
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[Jane]

To Sassy and all who were so kind to answer my query:


thank you very much. your experiences sound similar to mine (pain after finishing chemo and starting herceptin, etc.).

and yes, sassy, i, too, have been "slammed" into menopause by chemo. So that may be a contributing factor as well.

My pain is manageable but very annoying because heretofore, i've never had any constant pain in my life (pretty wonderful/spoiled, i know. :))

I'm going to resume the exercise I do at a local "Curves for Women" and see if it helps me - I may also try an Alleve or two every now and then.

Thank you all so much for taking the time to give me feedback. This cancer stuff can be so frightening and all-consuming....

best,
jane

[Rozebud]

Jane - I assume you also did a taxane, and I know lots of women who have severe (including myself) bone and joint pain from that. Mine went away after treatment and I had no side effects from herceptin alone, but I know lots of women who had that pain continue for months.

I assume it goes away with over the counter meds? You might also mention it to your oncologist, maybe there's something they can do.

[al from Canada]

Dera Cheryl,
As you know I'm not a Dr. but, Tramadol Extended release was just approved in your country for post operative pain. Talk to your onc about it but ALSO include a discussion on how to deal with withdrawals from the current narcotics, because you will have some.
Let us know how you make out,
Al

[CherylS]

I will follow up on the Tamadol. I'm not too concerned about withrdrawal problems because many days I don't take anything at all. Just when I get to that later in the day point and feel like I have a knife in my back and know I have to keep going for many more hours. I am more worried about the effects of the Vicodin I have taken on my cancer if there are any. What are your thoughts on that?

I had not heard of Tamadol and appreciate the info. Will get right after it.