living with joint pain long after chemo (WHY)

bluerose said:

Hello
I don't know if you had radiation or not but even though my treatments were 20 years plus ago even then the radiation specialist told me that side effects might include early arthritis after treatments just from the rads alone. I didn't get a long list of later side effects that I can remember but I do remember that and it has come true, I have alot of arthritis all over as I had total body radiation. That's one thing to think about as far as why you might be experiencing the pain.

I know too, have heard, that some chemo will do that as well and can also affect nerves that can lead to pain. I have been diagnosed with fibromyalgia which is pain not only in joints but in the fleshy areas as well, can be almost anywhere, and that can be linked to nerve damage some say although I don't know if the jury is really in on that as yet.

Chemo and rads is hard on the body and as you no doubt know many cancer treatments are not specific to the tumours/cancer cells so there can be collateral damage of healthy tissue and joints in many treatments. I don't know how much chemo you had or what drugs were used and I am not a doctor so best thing is to maybe contact a late effects clinic to see if they can go over your treatments and give you some idea of what you might be experiencing.

Don't be afraid to go for second opinions either. Some doctors are leary of 'blaming' side effects on past treatments for who knows why and it is hard to pin down sometimes but there is a real likelyhood that some of your pain comes from the treatments and late effects clinics can help you pin that down, or try to. You can probably find a late effect clinic near you if you are in the states, here in Canada where I am they don't have that type of clinic but our bigger cancer hospitals are covering things like that now in some areas.

All the best with pinning down your health issues and remember you aren't alone. Many of us have side effects from chemo treatments. It's still a relatively new field - the treatment of cancer so they are working things out and one big area is cutting down on side effects if at all possible.

Blessings,

Bluerose

beckym69 said:

Curious
Bluerose,

I have just been diagnosed with Follicular NHL in Sept 2010. Prior to being diagnosed they told me I had fibromyalgia, cervical and lumbar spondylosis, and while being tested have bursitis in my right hip which they thought originally was the lymphoma because they way it lite up on the pet scan. I am not sure what I am in for exactly, but am on my 4th cycle of chemo in 6 close ones then I have to go every 3 months for 2 years. Once I get in remission they said if there are very few cell left in my bone marrow we won't do anything with it at this time. If not we will have to address it, next bone marrow biopsy should be in April. I guess what I am curious about is I still have alot of bone and joint pain and I don't know if it is from the cancer, chemo, or the other junk they said I have. I am just very scared because I pray my remissions last a long time, but who knows. I just don't like being sick and hurting. I am a 35 year old single mother and nurse and haven't got the energy to do either. Does this get better? I have wonderful daughters who are thank god old enough they are very low maintenance but I still feel worthless. By the time they finally found it I was a stage 4B and my spleen was large enough you could see it protruding and I couldn't eat and keep anything down. If you have done this for 20 years do you have any tips or advice because I am up for anything.


Thank you in advanced,
beckym69

http://www.youtube.com/watch?v=rEDNldZeYfE&feature=related

bluerose said:

Don't fit into the boxes anymore, familiar
Neither do I. I don't present the same way to doctors either, always something different about my symptoms that can throw them because of all the treatments and the side effects. It's all very complicated and confusing, you sound alot like me in what you are dealing with afterwards as well.

Even down to the bursitis. Man that hurts doesn't it? Mine is on my right hip and I can't even touch that area most days. I am getting a really sensitive stomach too, that just started about 7 months ago, right around my navel - the surface of the skin is really sensitive and at night sometimes I have to make the sheets around my stomach into a bit of a tent to keep the material away from that sensitive skin - no doubt the fibro.

It's hard to know what is causing what pains anymore isn't it? Just too many things that we are diagnosed with can cause similar symptoms - it's all pretty overwhelming at times, I hear you.

My neurapthy is worse too. It hasn't been officially diagnosed yet which is stupid after all this time but I was dealing with severe heart damage and arthritis and you only have so many hours in a day to investigate these things I guess.

You are so blessed that your children are so supportive, unfortunately mine aren't. It's been very hard for me dealing with that too since I had the bone marrow transplant for my family but everything for a reason I guess although not sure what that reason is.

Some chemo drugs can do the same kinds of damage as rads can. Did you have vincristine by any chance? That is famous for nerve damage or at least used to be, maybe they monitor it more now or have changed doses, hard to keep track of changes in treatments. I had adriamycin as well and that is what they think damaged my heart. I think today they monitor adria much more from what I heard.

So much depends on the person too though as to how they will handle treatments and of course doses and stages of cancers are different - hard to compare sometimes.

Fatigue is a pretty common hanger oner. I still have major fatigue and is one big reason for my extended disability - usually need at least one nap a day if not more. I have many sleep disruptions and I am never rested.

I really have a feeling that one reason fibromyalgia patients are in greater number these days is because of the after effects of cancer treatments years back and they don't recognize that yet. I mean it's not the only reason for it but I bet they will find it's a big part of the diagnosis of fibro. That's my feeling anywho.

Do you have pain in the palms of your hands and do they get hot and red sometimes? Painful too? I don't think that's the arthritis, again I think it's the fibro.

My doctor recommended pain management clinics and I have had so much going on I haven't looked at it yet but I think it's a good idea. I am on 24/7 time release morphine capsules everyday, twice a day, for my low back pain with the disc degeneration and arthritis, just one day it got really bad about 5 years ago and put me in a wheelchair for awhile. I am out of it now but bought a chair that folds up in case I have bad days and I need to get out to doc's appts and the like. Hope you don't have to get into all of that. Remember people can have similar health issues after treatments but we are all different so please don't assume that you will get the symptoms I have even though we are similar in some ways. Same goes for you and other survivors. Read what they have to say and note similarities but don't get bogged down in the 'oh no is that happening to me' kind of things.

Hope I have helped you a little and feel free to ask me anything and I will try to help. I find that just respecting what my body is saying goes a long way. If I feel really tired I just rest and that way you are not fighting against the flow. One day at a time.

Blesssings,

Bluerose

weazer said:

living with joint pain long after chemo (WHY)
I am so glad that I took it apon myself to try to find out if anyone else was suffering like me.
I went to my Onc yesterday for this reason and I'm set up for another bone scan on the 12th of April.
I'm six months out of Chemo and radiation....and my pain started right at the end of treatment and is getting gradually worse.
However now I have hope that I wont be crippled from this because I will try to exercise more and keep with it, I was discouraged because after a walk or even really doing some house work I would feel worse.
But you have given me hope and I will try to put an excercise routine together,
I'm a triple negative Breast cancer survivor and that in itself is frightening to me because of the lack of knowledge on how to treat it if I should have a reacurance. But it it what it is, and I'll be 51 in a week and I'm truly looking forward to regaining my strength and to concure this pain that I have, my fingers are a little bit better but my wrists elbows, hips and knees are aweful.
Thank You so much for giving me hope.
Weazer

mm91174 said:

I AM 25 YEARS PAST CHEMO AND
I AM 25 YEARS PAST CHEMO AND MY JOINTS STILL HURT

Kay5 said:

Bone and Joint pain
I agree with Hondo... I hope this pain after chemo isn't long term. My fingers and legs are stiff and in pain all day long. Has anyone had relief from bone pain with exercise? I finished my last round of chemo in August and the pain started three weeks ago.

Kay5 said:

Thanks!
Thank you, Hondo! I see my oncologist next week. I will discuss the matter with him. Thank you for the welcome. I wish I would have found this site sooner. There is so much to learn.

aneesa said:

I'm not alone...
Thank you! I thought that I was the only one experiencing joint pain. None of the medical staff that I've encountered through my cancer treatment hinted at the possibility of joint pain. Ankles, feet, hips, finger joints and the shoulder on the side of the breast cancer surgery and radiation and now the back of my neck started 2 days ago.

It feels like I have loads of toxins in my body and I don't know how to get rid of it. When I wake up in the mornng, it feels like the toxins have settled in my fingers and my feet. I feel better when I get going and keep moving. Today, I feel very despondent. The doctors make it seem like after cancer treatment, you just bounce back and everything is back to normal. They don't seem to care about after treatment problems. They don't collect data from sites like this one, to better prepare their patients. They don't even consider that joint pain, for instance, could be a consequence of cancer treatment. Why? There is enough evidence on this page to suggest a very very strong link.

I am going to find a way to rid my body of every last bit of these toxins causing such havoc. I cannot be 40 going on 90! That is no way to live.

Thank you all for sharing. Now I know that I'm not alone and that I'm not going insane. Onwards to a pain free 2012.