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Effects from Chemo...Need Advise

lgw
Posts: 11
Joined: Jan 2004

I've had a double mastecomy in Sept. 03, and have finishced a very agressive treatment of A/C plus taxol in Jan 04. To date, scans and tumor markers are disease free, Thank God.
So believe me i know how blessed i am.

However, even though my blood count is building and i am getting my energy back, i really have problems with my joints,serious stiffness & aching, mostly my hips, but also some in my shoulders. My hips are so stiff when i go from one postion to another it is very painful, i'm 48 and i walk like i'm 90.
My doc has said it really shouldn't be from the treatment but has put me on Celebrex. i also take glucosamine chondroitin, calcium and magnesium.
I never felt this way before chemo and really believed it would be improving by now.
Besides the discomfort from the expanders in my chest, my hips are making it difficult to sleep through the night, turning from side to side to find comfort.

I am walking and trying yoga to get exercise and build flexibilty. But so far I'm not seeing much progress.

I'd love to hear your experiences; and welcome any suggestions.

As always, Thanks in advance for your candor and valueable feedback.

Wishing all of you a Terrific Quality of Life!
lin

sevey
Posts: 185
Joined: Aug 2002

Lin,
I have been dealing with this illness since my 20s & at 46 can say that I suffer from the same problems. I attribute some to the fact that I also have artritus, but not all of it. It is difficult as we get a bit older & go through conventinal treatment for cancer>{chemo, radiation} .... There are many side affects to using these treatments as they are so radical & invasive to our bodies. One Dr told me that I brace myself in my sleep because of the pain & I thought he was full of it untill I woke up gritting my teeth so hard that I had to do to the dentist to get a peice of plastic to wear at night to prevent me from grinding them apart. At the same time I noticed the pain in all of my muscles. It was only part of my problem because my bones seem to hurt as well. Joints & sometimes I would awake with swollen hands & feet>{still do have that problem}.... I am not trying to say that your Dr is wrong because I don't know the history of your case. The last time I took chemo I lost 22 lbs in a week after i treatment. I was told that I could never take chemo again. As far as radiation goes it is no longer a option. I had to take alternative meds. I am in no way suggesting that you do what I am doing, but I am sympathetic or should I say emphathetic to your problems. If you would like to email me you can do it throught this site. I will be praying for you & hope or have faith in the Lord that this too shall pass.
God Bless You
Love Cathy

billandpatty
Posts: 86
Joined: Mar 2004

lin:
I'm a 4 year survivor and I had all those aches and pains too. I had a lumpectomy, lymphnode dissection, A/C and radiation (no tamoxifen, ER-). While I was in radiation I started to notice how stiff I was, I had just turned 48 -- I kept telling the doctors I felt like I was 80 (the doctors didn't validate my complaints). But my primary care physician felt that my body had been through so much, it was exhausted and it gave everything it could to get me through the treatments. The terrible aches and stiffness finally subsided. I was found to have osteopenia about a year after my dx, (they think brought on by chemo-menopause --- not a medical term, my own). I take Evista to build the bone, I don't know if that had any effect on having less aching. My hands still ache at times, esp. my thumbs (I think I have arthritis).

Give yourself time to heal but also make your doctors aware of how you're feeling. Take care.

Patty

hummingbyrd's picture
hummingbyrd
Posts: 965
Joined: Sep 2002

You might want to consult a naturopathic MD. Sounds like your on the right supplements, but it's possible you need something more.
Believe it or not green tea helps my joints tremendously.
Also, check with onc, sometimes tamoxifen, aromasin, and especially femara are associated with joint pain. Just a thought, you may not even be on any of these, can't remember if you said. Chemobrain! Another lovely side effect. LOL
God bless.
hummingbyrd

nursedisel
Posts: 1
Joined: May 2004

patty, i saw your message. I feel pretty much the same way. i had hodgkins about 14 months ago and had chemo and radiation. the radiation was to my chest wall. unfortunately i developed "radiation pneumonitis" and had a hellva time. was on prednisone on and off for about seven months. i ache everyday now and have not been able to lose weight. i need to lose about 20 lbs. i'm 60, but prior to my diagnosis i had weighed about 148 and was runnig 3-5 miles daily. i had planned to row in england with one of my daughters. i was, as they say, in excellent condition. now, i sort of get the impression from my oncologist that i'm the only one who is so exhausted everyday and has muscle and joint pain. i did tell both my oncologist and nurse practitioner that I WAS VERY SURE that i was not the only one who left the chemo floor feeling this way. i feel that by not taking these "effects" seriously the docs can dismiss us and not add this to their research studies. i feel like crap most days and have had to retire from my job as a school nurse on the west philadelphia boarder. i simply could not handle the four schools i had managed alone (with over 1400 children) anymore. i don't think the oncologist realized what this meant to me. thanks for listening. rose mccarthy

SusanAnne
Posts: 245
Joined: May 2003

Hi Lin. Have you had a bone density test (different from a bone scan)? My GYN sent me since the chemo put me into early menopause (I'm 46). Turned out I have osteoporosis of the spine and osteopina of the wrist (my hip is fine, thank god). I'm now taking Fosamax to build bone strength along with the calcium supplements. Another thing I do have is joint pain in my knees. I believe it's from the Tamoxifen (6% of those on it complain of joint pain). The glucosamine, chondroitin seems to help a little.
Glad to hear though that all your followup testing is negative. Hope you find some relief for your aches & pains.
Susan

I_will_survive's picture
I_will_survive
Posts: 31
Joined: Oct 2003

Hi Lin, I had a lumpectomy last August with an agressive chemo treatment of 4 rounds of A/C followed by 4 of Taxotere, followed by 36 radiation treatments (on my last two weeks now). I started having pains after the first round of Taxotere - bone and muscle...at first they would disappear, but after the 3rd treatment they never left. The oncologist said they should disappear "over time" and suggested physical therapy and accupuncture. I haven't done much with the physical therapy yet, but have seen a accupuncturist twice and already the pain in my legs is gone. The pain in my arms and hands is not quite as bad either. The accupuncturist also suggested (and I've started on this too) a product called Medi-Clear. He said a lot of patients that have been through chemo take it as it helps detox the body of the chemicals. Its also full of vitamins and minerals and he has been using it for 13 years himself - he said it helped a lot with his allergies. If you'd like to check it out, there is a website that gives details on it: http://www.naturalhealthconsult.com/Monographs/MediClear.html

Yesterday was my first really good day in months! So, I think what I'm doing is working.
Hope this helps and I wish you all the best!
Joni

mom62
Posts: 600
Joined: Mar 2004

Hi,
I had a modified radical masectomy in November and 4 A/C and 4 Taxol chemo treatments. I have the same kind of pain. Two years ago I was diagnosed with Rhumatoid Arthritis. I went into remission while I was on chemo but that the joint and muscle pain with the Taxol after each treatment for 3 days. I have been done with chemo for 4 weeks and my RA is back with a vengence. You may want to get tested for it. It attacks your joints in the same way. I'm seeing my Rhumatologist this week. I'm not sure if it's the chemo or the RA but I can't sleep at night either. I feel like I'm 41 going on 90 as well. I hope you feel better soon. Terry

DeeNY711
Posts: 482
Joined: Apr 2003

I had the same surgery and the same chemotherapy as you, and have the same hip and joint pain, especially if it is going to rain or snow. I, too, hobble. I have tried suggestions one after the other... gelatin every day, glucosamine and chondroitin, green tea, etc. I still wake up every hour and have to roll over on the other side. I was taking Actonel (cousin of Fosamax) prior to it hitting the fan, and honestly believe that this is indeed a long-lasting side effect of chemotherapy. I have mentioned it to the oncology surgeon, the medical oncologist and the radiation oncologist. If I did not have this message board to find half a zillion other women who have the same aching discomfort after chemotherapy, I'd be inclined to become morose over the utter lack of actual knowledge encountered by patients who bring their concerns to their physicians. If so many of US have it, it cannot be rare! I have even explained that naproxyn, ibuprofen, aspirin, Vicodin ES do not alleviate the problem of pain-related lack of sound sleep. I get a blank look from the doctors. If I discover the way to get rid of it for a solid 7 hours, I will let you know.
Love and hugs,
Denise

epgnyc
Posts: 138
Joined: Apr 2003

Hey, Lin. You're certainly not alone as you see from these posts. I think many of end up with thse killer aches and pains following chemo and radiation. My oncologist said a fair number of patients have these after effects (although he said we're in the minority....sure doesn't sound like it from here!). For myself I found that detoxifying, taking glucosamine and giving it time helped (I personally think it was mostly the time factor). My joint pains, by and large, improved tremendously around month 7 post-chemo. Hoping the same for you. Ellen

bpcbrinks
Posts: 31
Joined: Jul 2001

It is amazing to me that so many of us have the same side effects as having the same treatment and yet the docs still won't believe that it is related to what they have prescribed for us. Don't get me wrong, I love my doc. He's great and he listens when I tell him there is a problem.

As for my bone and joint pain, I have found that VIoxx has helped me when narcotics and other anti-inflamatories didn't. (By the way, when I was in an extreme amount of pain before they diagnosed my bone met, I was told that the pain meds i.e. narcotics did not work when you are in pain. They work in anticipation of pain.)

When all else fails, Ativan helped me sleep when nothing else did.

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