Joint and bone pain

Joint & Bone Pain
I am sorry to hear your feeling this way. I wish I could tell you it will go away or it will get better but I have been in remission from Childhood Hodgkins Disease for 21 years and unfortunantly I still have horrible pains in my legs & feet and this has been going on since treatment. I had MOPP, ABVD and Radiation. The pain has followed me into adulthood and would go in sperts as to the serverity of the pain. As of 2 years ago the pain has become so intense that I can not walk and miss plenty of work. The weather plays into my pain as well. I have a healthy 5 year old that I was told would never happen bc of my treatments. Lots of doctors do not have a clue about affect or late affects of chemotherapy or what to look for. Unfortunantly you will have to do a lot of research to show your doctor this happens or go to a doctor that actually has a concept about this important issue of late affects. Most doctors that are going to school now are starting to learn what to look for in cancer survivors. The older docs now have no clue and don't know where to even begin. Cancer.org would be a good place to get info. I did a lot of research and printing info to bring to my new doctors. Its hard enough to go through cancer and then you still end up fighting to survive the late affects. I sometimes wonder what I would have chosen to do if they would have come to me and said hay this is what it is going to be like in 20 years. Bc I think I honestly on my really bad days when the pain is soooo intense I just would not have done any of it. My current GP doc said this to me "It is sad that sometimes the medicine that was used to make us better comes back and hurts us in the end and at least you had the 20 years to be here". Take that how you want to but sometimes that helps just to get through those horrible moments when your world has stopped bc of the pain. Good Luck!

Dragonfly5 said:

Joint & Bone Pain
I am sorry to hear your feeling this way. I wish I could tell you it will go away or it will get better but I have been in remission from Childhood Hodgkins Disease for 21 years and unfortunantly I still have horrible pains in my legs & feet and this has been going on since treatment. I had MOPP, ABVD and Radiation. The pain has followed me into adulthood and would go in sperts as to the serverity of the pain. As of 2 years ago the pain has become so intense that I can not walk and miss plenty of work. The weather plays into my pain as well. I have a healthy 5 year old that I was told would never happen bc of my treatments. Lots of doctors do not have a clue about affect or late affects of chemotherapy or what to look for. Unfortunantly you will have to do a lot of research to show your doctor this happens or go to a doctor that actually has a concept about this important issue of late affects. Most doctors that are going to school now are starting to learn what to look for in cancer survivors. The older docs now have no clue and don't know where to even begin. Cancer.org would be a good place to get info. I did a lot of research and printing info to bring to my new doctors. Its hard enough to go through cancer and then you still end up fighting to survive the late affects. I sometimes wonder what I would have chosen to do if they would have come to me and said hay this is what it is going to be like in 20 years. Bc I think I honestly on my really bad days when the pain is soooo intense I just would not have done any of it. My current GP doc said this to me "It is sad that sometimes the medicine that was used to make us better comes back and hurts us in the end and at least you had the 20 years to be here". Take that how you want to but sometimes that helps just to get through those horrible moments when your world has stopped bc of the pain. Good Luck!

I had been diagnosed with
I had been diagnosed with Fibromyalgia 20 years ago and noticed about two months out of chemo/rads that this pain had diminished and was replaced with deep bone pain. My oncologist stated that chemo often cures Fibro. No one had an answer about the deep bone pain. Said it had nothing to do with the treatments. So, I requested copies of all my scans. Post treatment scans show osteoarthritis in bilateral hips and "decreased activity in lumbar vertebra likely related radiation therapy." At least I know I'm not crazy! Outside of the radiologist that read the reports, none of my other docs will still admit that these conditions are a result of my treatments.

jackie1020 said:

muscle and bone pain
yes, also have been going threw the pain, now for almost 5 years, and also from the chemo it has left me with a perminate brain fog. my employer has expcted me to be normal when i came back to work and i havn't been, physically and mentally i have been it seems permantly effected and i can't get any kind of proof. and i am the breadwinner of the family, i could lose my job. my employer is always giving bad reviews now, and i am always making mistakes,i used to love my job, now i hate it because of the stress my boss imposses on me everyday, i never do anything right, even if i wasn/t the -person that made the error, he still acusses me and thats what he sticks to. i hurt all the time, i had breast cancer but scence chemo i have been left with aching bones and muscles, it is so painful to be on my feet for 9 hours a day, i work and walk in pain everyday, and not appriciated at my job,i just want to cry, its a horrable way to live. that is not a quality life. I have to been to therapist...and other profesionsls to get help but no one can help,they all blame it on somthing else, iknow what it is. i thought when the treatments were over i could get on with my life, not with my life, my old life is gone my body is gone, i have someone elses and i get so tired of the pain, and thinking i am going to have to fight everyday till i retire, fight making myself get up early work allday and be in pain constantly, and facing an employer that downgrades me everyday watching me constantly to catch me in any mastakes so he can document me, get rid of me, gee why would anyone have a depresion from that? drepression would be from the devestating news of having cancer not the side effectes of chemo, right? thats what i'v been told by my family doctor, arthrist specialist, and my onacologists realy isn't conserned, if its not cacerous he just dismisses the whole thing
]

Muscle and Bone Pain
I was diagnosed with NHL in Aug 09. I had 6 cycles of R-CHOP. I noticed swelling in my fingers and ankles. I also have trouble sleeping at night. I have tried taking Alleve which seems to help a little. I have since restarted my supplements which consist of taking Shaklee Vivex, COQ10, calcium, Vitamin D3, B Complex, Sam-e, 5HTP, and Alpha Lipolic Acid. I put 2 tablespoons of blended asparagus (canned) in hot water and drink it in the morning and evening. I try to exercise as much as possible, although I have been inconsistent because I ache so much in the morning and I'm too tired to go. My oncologist had me tested for Lymes, RA and Lupus which all came out negative. I've always been such a healthy person, so getting NHL was such a shock to me.

Does anyone have any other suggestions which may help? I will have to have 2 years of Rituxan every 6 months (once a week for a month for each treatment) as a follow up because I have indolent NHL. I must admit, It's getting quite depressing.

jazzy1 said:

Sue K
How did the tests come out for you? Curious as I've got uterine cancer and had the radiation to pelvic with much pain in buttock/pelvic area. Wondering what you found as your situation is similar to mine.

Thanks,
Jan

joint and bone pain
Hi Jan
The scans were ok- no sign of the dreaded cancer, thank goodness. However it is hard to be as pleased as I should when in constant pain! My oncologist is not admitting that it is the treatments- paclitaxel and carboplatin- and says that 'none of his other ladies' has the same problem as me. So I shall just see him in 3 months to check for cancer symptoms. So, it is up to my own doctor to try and help. He is not at all sure what is wrong with me, although I have assured him that there are ladies on this forum who seem to have the same problems! Anyway he has just started me on gabapentin and, for the first time in a long time I am beginning to feel a bit better. Consequently, my mood has improved, as I was getting rather depressed with constant nagging and roving pains.
I hate to be on medication all the time but it cannot be helped just now, and I am glad of the relief.
By the way, Jan, I get pain in the buttocks too, and what a pain that is! Are you on medication? What does your doctor/ oncologist say about it? It seems to me that oncologists are good at treating you when you have cancer but are happy to leave you suffering the after effects of the treatments.
Good luck to you Jan and thanks for responding to my post.
Sue

joint and bone pain
I am so glad to find this post. I am sorry you have this. But I am in complete misery with muscle and joint pains. It wakes me up during the night.
I had 8 treatments of R-Chop for follicular nhl stage 4. My last treatment was Oct. 21,09
Then December 23 I did Zevalin.
I go to see my Oncologist on Wednesday and I am wondering should I tell him this?
I really hurt. Can not take aspirin since I am also on blood thinners. Hope you feel better soon.
Hilde

whesha said:

I so much understand your problem. I am suffering a lot of joint and muscle pain. Hands, elbows,hips and knees mostly but not only. My doctor says it is not from chemo (5FU/leukovorin) but it has to be. It started right after chemo and it is a year later and I still hurt. It is getting me down, I can tell you. Has anyone else had this following the 5FU and leuko? I know it is more usual after other chemicals?

I finished 18 months of
I finished 18 months of chemo in June and I had 5FU/leucavorin/campostar/erbitux. I am now finding that my fingers just ache every morning and my hips, legs and knees are in agony after sitting or driving even short periods of time...I started walking 30-40 mins this week to seeif it will alleviated the achiness, so far no, but maybe I jsut should also take an Alleve everyday?

hilde451 said:

joint and bone pain
I am so glad to find this post. I am sorry you have this. But I am in complete misery with muscle and joint pains. It wakes me up during the night.
I had 8 treatments of R-Chop for follicular nhl stage 4. My last treatment was Oct. 21,09
Then December 23 I did Zevalin.
I go to see my Oncologist on Wednesday and I am wondering should I tell him this?
I really hurt. Can not take aspirin since I am also on blood thinners. Hope you feel better soon.
Hilde

joint and bone pain
How comforting to find this topic. Finished folfox with Avastin 7/3/10. Within 3 weeks started having awful pain in bone and joints. Doctor took blood, sent me to pain specialist, neuropothy specialist, rheumatiod, and next will be bone specialist. With most of the tests coming back negative, I feel like I shouldn't be complaining. Thanks to all of you, I see I'm not alone. I was recently put on indomethacin but having bad side effects. It seems that I am more sensitive than ever to drugs. Prayers and blessings to all, Bette

blueroses said:

Joint and muscle pain
Hello, I am sorry to hear that you are having issues with joint and muscle pain - I have that as well and am a 20 year cancer survivor of NHL. I don't know what kind of cancer you had or what type of treatments but you aren't alone if in fact these issues are in fact due to treatment. However, as you probably realize the aches and pains could also be due to a great number of other medical issues so the best thing you can do is start testing with specialists. If you can get to a specialist who deals in after effects of treatments that would be the best but even before that your own family doctor might be able to help you rule out fibromyalgia or chronic fatigue just to name a few - did the treatments you had bring this on with your aches and pains - hard to know. What I can tell you is that yes many cancer patients experience these aches and pains in a major way and many feel it is due to cancer treatment side effects. In fact I have noticed in the last few years doctors have started to acknowledge these issues and other side effects from cancer treatments in days gone by. I have heart damage from a certain chemo drug and not long ago I heard my cardiologist acknowledge that. As well I have had contact with neurology specialists who have said they have seen cognitive and memory issues as a result of treatment too. Of course everyone is different in their treatments and affects, depends on what kind of treatment you had etc. You should be able to find many instances of that on this board.

There is a number in the states for information from cancer specialists through the American Cancer Society National Cancer Information Centre. It is 1-800-227-2345. Also there is a late effects clinic - The Lance Armstrong Clinic at Dana Farber where you might be able to get more information as well. I think your best bet though is to find the name of a good late effects specialist in the U.S. in my opinion. All the best. Blessings, Blueroses

Number and Info
Dear blueroses,
Thanks for the info. I am having shoulder pain that started in Jan. I have two more herceptin treatments left. I had this combined with taxol for four. On Tues I will be seeing an orthopedic man. They tell me the MRI showed arthritis or bursitis. Trouble is I have taken Ibupropen and naproxin two anti-inflammatories and nothing has helped. If it continues I'll check on a late effects specialist. Have you heard if any of the alternatives such as acupuncture have helped?

CountryGal7557 said:

Flexeril
Did anyone on this thread go to a Rheumatologist for your achy joints? I did and now I have a prescription for Flexeril 10mg before bedtime.

this is only day 3 and I can already tell a HUGE difference. Flexeril can make you drowsy, thus that is why she suggested before bedtime. I wake up in less pain. My ankles use to be locked tight every single morning and it's worse when the weather is cold.

I've used the search tool on this site for Flexeril and only found ONE other person who mentions taking flexeril. I'm just wondering why this isn't suggested more as it's a muscle relaxer.

CountryGal is now in less pain and the days are tolerable. It's only been 3 days, but I am optimistic that this is going to save my summer!!

see my other post " FLEXERIL
see my other post " FLEXERIL for 'locked' joints to relax muscle & tendons"

debates said:

I finishes chemo fours years ago. My knee pain began during my chem treatment. My oncologist gave me suggestions to help this. If your doctor wants you to find sources before he will treat you, you need to find another doctor. Your doctor has access to databases that you cannot access. It is his job to research your problems or refer you to a doctor who will.

JOINT Pain
Im 33 years old, I'm an AML leukemia type 2 survivor,I went threw 2 months of full chemo, and 4 consolidation treatments, then i went into remission, after about 1 year later i started getting moderate to severe joint and muscle pains, usually in my ankles feet and kneed and hands, now 2 years later severe joint pain so badly its hard to walk, im a mechanic and my job is demanding, im going to see a arthritis specialist this month, ive gone to at least 3 other doc's so far they all ssupect gout, but all the bood tests show negative, i ssupect otherwise like some severe auto imune disorder, i go from one day in horrible pain to the next perfectly fine! i shouldnt feel like im 66 yrs old at the age of 33 i can jog anymmore it hurts to much, and any heavy work just wears me out. I dotn know what to do.