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-   -   Diagnosed 1999, no recurrence. Chronic pain biggest problem. (http://her2support.org/vbulletin/showthread.php?t=60537)

Claudia26 03-18-2014 02:55 AM

Diagnosed 1999, no recurrence. Chronic pain biggest problem.
I participated in one of the clinical trials with Herceptin for adjuvant therapy, enrolled in 1999. Got 4 courses of Herceptin and Taxol (or Taxotere, I don't recall which one now), then 4 courses of AC, followed by radiation and one year of weekly infusions of Herceptin. I developed severe joint/muscle pain from the Herceptin and Taxol, which improved, but never resolved. Still taking extended release morphine, oxycodone, and ibuprofen. Had a hard time getting my providers to believe me about the severity of the pain at first (couldn't walk without medication), and that it is chronic.........something about that Taxol plus Herceptin. I didn't find much about chronic pain in the literature.
Grateful to be cancer free if not pain free!

Becky 03-18-2014 06:14 AM

Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.
Have you seen a rheumatogist about the joints? Maybe it is something different or maybe it is fibromyalgia. My girlfriend got cancer about 3 yrs before me. Not Her2 but got 4 rounds of AC and 4 rounds of taxol. She had lots of residual pain and was diagnosed later with fibromyalgia and is on Lyrica and doing well. I am not saying that's whats wrong with you but certainly there has to be something that can help you versus narcotics. Seek out opinions with a rheumatogist who specializes in joints. You didn't mention if you are on an AI (Arimdex, Aromosin or Femara). These cause joint issues too.

Jackie07 04-07-2014 03:40 AM

Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.

Sorry for your suffering.

I've found that exercise (walking is the best - if you can not walk, try to get the PBS chair exercise video) works best for pain relief.

Exercise increases the release of endorphin, which is a natural pain killer and a 'happy hormone'. Plus it will help strengthen the bones and prevent osteoporosis.

Contact your doctor and get a referral to physical therapy also should help.

Sending you good vibes.

ps. If you are taking pain meds, be sure to eat a high fiber diet or drink a cup of the fiber supplement everyday. And remember to drink a lot of water/juice. Many pain medication has the side effect of causing constipation.

Claudia26 04-07-2014 04:13 AM

Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.
Thanks for the info.....have done that.....I believe part of the pain is nerve damage, but yes moving about always helps. Been on pain meds that constipation is never a problem. The problem is getting the medical providers to 'believe' that chronic pain can be caused by chemo.....Claudia

carocass1432 05-18-2015 03:09 AM

Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.
I was a very young 47 year old woman when I was diagnosed with Stage 2A metastatic breast cancer positive 1 lymph node and 2.5 cm on right breast, HER 2+.

I now exercise every day for 30 minutes on an elliptical. I take 2 Glucosamine; 2 CoQ 10 (100mg each) a multi-vitamin and my tamoxifen daily.

I have 3 weeks of radiation left and 15 sessions of Herceptin.

Chronic pain is real, I am very sorry for your pain. I too suffer from joint pain and stiffness. I hope and pray that you will get a MD opinion on the pain and find other supplements to help alleviate your pain. My glucosamine and CO Q 10 has been working great. I sometimes have to bite down on the BIG STICK to get through my minimal workout but I finish what I start.

I hope this helps.......

Nurse4u2day 05-18-2015 07:27 PM

Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.
I was diagnosed at 45 soon to be 47..you will see my regimen below. Bottom line I to suffered from EXTREME muscle and joint pain about six months into herceptin ... Thank goodness it lasted for only about 4 more months ( felt like I was 90) .. I was fortunate that my doctors believed that I was having this pain but would not definitely say it was chemo related hmmm. Anyhow the joint pain resolved but I still do get evening muscle aches that I now use ibuprofen for. The pain has gotten much better . I hope in time it will get better for you.

suzan w 05-26-2015 08:02 PM

Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.
I, too, suffered extreme joint pain during herceptin. I needed help getting out of a chair, even walking was tough. Never got a good explanation...Even now, almost 10 yrs out, my knees are really weak...hmmm

forher 05-26-2015 11:38 PM

Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.
I believe in your pain! I, too, suffer from chronic pain. It's everywhere. Mainly I have terrible pain on my surgical side from rads. I see a lymphedema specialist who massages my scar tissue and relieves my lymphedema pain in my arm. I also have a machine that helps with the lymphedema. I also take Celebrex for my arthritic neck pain. And lyrica for my neuropathy. I'm 41. I feel like a mess some days. I had taxol, too.

AlaskaAngel 07-18-2015 09:10 AM

Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.
Claudia, thank you for being among those to provide better treatment! In 2002 when I was dx'd I knew nothing about the trastuzumab trials but asked my onc if I could participate in clinical trials. There was only one I think that I would have qualified for and I didn't know about it, and he wasn't responsive, so I never had trastuzumab. I too remain without recurrence.

Suzan, the loss of muscle tissue + the permanent struggles with slower metabolism and weight gain have made my knees and ankles weaker too. I was offered steroid shots but turned them down. For a while (in trying to cope with the sudden onset of weight gain that so many younger medical providers think can just be addressed with "diet and exercise") I was jumping rope for 30 minutes a day, but my ankles and knees could not take it. I am doing PT for that, with a small local private PT who is very good, and it is helping bit by bit. I will never be able to jump rope like that again, but the PT is strengthening what muscle I have and it is reducing the knee pain.


Dakini52 07-18-2015 11:31 AM

Re: Diagnosed 1999, no recurrence. Chronic pain biggest problem.
I have had some arthritis pain for quite some time and I noticed that when I was going through chemo the pain was not present, however, once I was off chemo the pain returned with a vengeance. I talked to my onc and he said that was really common. Chemo is actually used to treat some types of arthritis and once the chemo is stopped the pain returns at an increased level. I still have chronic joint pain and try to move about as much as possible to help with it.

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