Herceptin and leg and joint pains

Laurel · 05-14-2009, 05:30 PM

Diannes,

Chemo wipes out your natural flora in your G.I. tract. A naturopathic doc placed me on Probiotics post chemo for my G.I. irritations and I was good as new within 2 weeks! Impressive. I also suggest you have your Vit D levels checked as low Vit D, and most of us have LOW Vit D, contribute to the leg and joint pain associated with Herceptin and especially with Tamoxifen and A.I.s.

My hair has grown back just as it was pre-chemo. I had a full head of short hair by this past February with my last ACTH in the beginning of Sept. Once I had finished with chemo I began my supplements. I have had little SEs from Herceptin alone. My nails are soft and break easily. I have a drippy nose intermittently. This Spring was awful for my allergies. I cannot recall a worse season, although many friends and acquaintances who are not receiving Herceptin say the same thing. The stiffness and tingling in my feet and lower legs are all but gone now. I really believe the supplements aide me. Have you consulted a naturopath? I am a true believer in their merits.

03-28-2011, 07:36 AM

Hi

Thank you all for posting your experiences. I finished chemo in Oct. and had bilateral mastectomies followed by radiation that ended in March. I started Tamoxifen and Herceptin within days of that. I experienced intense pain in my bones after the first Herceptin treatment and have been achy and VERY uncomfortable since. My doctor stopped the Tamoxifen temporarily to see if the pain is due to that or the Herceptin. I have to wait another week to see if there is any relief. I have my 3rd Herceptin treatment tomorrow. I notice that I am quite nauseous 2-3 days after the Herceptin for a day or so. I started with the runny eyes and nose a couple of days ago. My doctor is sending me for echo/heart ultrasounds every 3 months or so as well.

My Radiology Oncologist referred me to a physical therapist who has a specialty in oncology recovery. She is awesome and uses a lot of pilates to help me stretch and build core strength. I started it to circulate the radiation and prepare for reconstructive surgery but I have to say that it helps with my pain. It doesn't relieve it fully but I can't imagine how hard it would be without it! They're working to make the physical therapy an automatic service provided after all cancer surgery. I'm in Connecticut and know that my therapist is on a national board of directors working on this movement. Insurance pays for this treatment for which I am very grateful!

It's good to hear that I am not alone in these side effects and that with time, they may lessen. I, too was told that the Herceptin would be easy to deal with after everything else but it's really not. Don't get me wrong, I know that without it I wouldn't be here but I still have 9 1/2 months of this to go and it's a drag to have fitful sleep due to the pain and wake up feeling just as bad as when I went to sleep!

Doesn't it get tiring to complain all the time??!!