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Joint and bone pain

britches's picture
britches
Posts: 10
Joined: May 2003

I am trying despratley to find anyone that can help me. Last summer i had chemo and now i am suffering with debilataing joint and muscle pain. I need to find written proof of this and or articals anything that shows my doc. that this is real. I could also use some support that im not alone that there are others. If you have any info if you could please email me at britches_26@hotmail.com I would appreciate it this is so important. Thank you

bamajen
Posts: 1
Joined: Jun 2004

I had cancer a few years ago. I have intense joint pain more than muscle pain....but the muscle pain is there. I would seek a doctor's opinion. I was diagnosed with Avascular Necrosis about a year ago. They diagnosed this through an x-ray. I don't know if this information helps, but I hope it does!

luannt
Posts: 11
Joined: Jun 2004

I'm surprised that you need to have proof in order for your doctor to believe you. I went through chemo 4 years ago and I still have achy joints and weak muscles, infact I think it's a normal side effect of chemo. Luann

dijojack
Posts: 1
Joined: Mar 2004

I'm 9 weeks away from my last chemo treatment. I have been surprised to have bone and joint pain now, this far away from chemo -- since it's not something I experienced during the chemo treatments. It has been a real surpise to me. I'm still trying to find something to battle the muscle pain and weakness.

juneaugirl
Posts: 12
Joined: Aug 2004

I finished chemo 7 months ago (Taxol and Carboplatin). Right after each infusion I felt as if I had been beaten with a baseball bat. The pain would suside to a dull ache after a day or two. Yes it was mostly joint and muscle. Now 7 months out I have developed arthritis in some joints. Celebrex has helped but I still have trouble with sciatica and tingling in my feet. I am functional but I'm a secretary and sitting for long periods does bother my legs and feet. My doctor was hesitant to attribute the sudden onset of arthritis to the chemo but he did take me seriously. As far as written proof or documentation for your doctor, I don't think you'll find it. All I've found is ancidotal (sorry 'bout the spelling!)info, but there are too many post-chemo incidences for it to be coincidence. Hope this helps.

whesha
Posts: 3
Joined: Apr 2004

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?

Pegjoy
Posts: 5
Joined: Nov 2004

Not being negative, but YES, YES, YES! 6 yrs. out after 5FU, Red Devil, blood transusions and platelets, etc. I do better when I exercise, but sometimes, my hip just goes out anyway! Hang in there.

jillpls's picture
jillpls
Posts: 241
Joined: Mar 2008

I had 5FU and leuko starting in 06 through may of o7. Then the stiffness started on sept of 07. It seemed to subside until I had more 5fu. Now I'm on Xeloda (pill form of Xeloda) and my joints really hurt. I can barley turn my head. I've had xrays of my shoulder because both sides hurt so much. I know it's from the chemo. Any suggestion as to what to take for the joint stiffness??? They should forewarn you about how stiff you will become. I still work out and go to Yin Yoga and that helps. I walk a lot too. Always 3.5 miles a day and sometimes I double that if I have the time. Good luck.

pluckey's picture
pluckey
Posts: 470
Joined: Jul 2009

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?

KayeKay's picture
KayeKay
Posts: 122
Joined: Jan 2013

Yes! I thought i was alone till i found and read this forum. I've been off chemo for 1 year and 1/5. i have terrible muscle and bone pain. I was on 5FU.

nunesdian
Posts: 1
Joined: Feb 2013

Hi,

I did not wish to create an account on the blog site as I have too many passwords to remember.
But in regards to your bone/muscle pain. I am 1 year and 2 months done with chemo and the pain does reduce but I still have horrible. Joint/ bone pain when I over do things and when it's damp or cold. Today I went home sick from work and my biggest complaint is the bone aches and pain, the other symptoms I can manage. I have to take a Norco to touch the pain,and I can't do that at work
When I was on chemo ,the taxol and ( I can't remember the name of the other chemo mediation  ) I took with it . It caused me the worst bone pain ,and it was primarily in my feet, they felt as if some giant strong man  rung them out. I would have to take several Norco before I could even start my day.
Today this is my biggest post chemo  complaint . I walk and do feet exercises and it helps ,but your best defense is time, eat really healthy ,exercise ( moderately)  . and take a pain pill now and then until life becomes more manageable. 
I felt/ feel at time Doctors are " programmed" to " not encourage " us so they minimize our post chemo aches and pain. I do believe the doctors believe us because I have yet to meet the patient without ill pst chemo side effects. While you on on our quest do what ever it takes to be comfortable
I am sorry I don't have any articles to share ,i only have my testimony but I will keep my eye open.i wish you success in your quest

Dianella Nunes

mikemcd's picture
mikemcd
Posts: 4
Joined: Apr 2013

I have lower rectal Cancer.  I have only had one week of Radiation and 5FU. The X-Rays have to pass through my hip joints to hit the tumor.  Now, my hips joints have caught fire!  Get'n hard to even sit still or walk.  Maybe I should refuse radiation for a while, so my joints can keep up?  Don't want to anger the Doctors, as they seem very quickly irritated and provoked easially!  Amazing, these Scum Bag "Oncologists" have your life in their hands, then treat you as if they couldn't be bothered...  

debates
Posts: 1
Joined: Feb 2005

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.

daniel K
Posts: 2
Joined: Jun 2011

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.

daniel K
Posts: 2
Joined: Jun 2011

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.

sue K
Posts: 18
Joined: Apr 2010

Hi Daniel K
I totally sympathise with you. I am a survivor of carcinosarcoma, otherwise known as MMMT. I had surgery , followed by chemo and radiotherapy in 2009, and thankfully I am in remission. I am 66 years old but before cancer treatments I was very fit and active. I now suffer severe pain all over, and after many visits to doctors I was finally referred to rheumatology, and the diagnosis is fibromyalgia.
My oncologist admits that chemo can cause fibromyalgia. It is very debilitating, and there is no cure. I am on strong pain killers, nerve pain medication and ante depressants. Some days are good and others are not so good. I am just glad that I am not working any longer, but it is very hard for people like yourself who are young.
Thinking of you, take care
sue

bkhoelscher
Posts: 1
Joined: Apr 2009

I also have the same pains, my surgeon said It takes a year for the pain to start going away.
I sometimes take pain meds, but I try to ignore it so I can keep working. your not alone !!!

Brenda Hoelscher
bkhoelscher@yahoo.com

Craig_Griffin's picture
Craig_Griffin
Posts: 32
Joined: Feb 2009

Britches, The proof that I have are Chiropractor's x-rays of my back and neck 1 year before cancer (2 years ago), and also very recently. The chiropractor showed me the difference and also said it could only be from chemo and radiation. -Craig.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

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

patticakes1
Posts: 3
Joined: Apr 2011

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?

abbigaelc379
Posts: 1
Joined: Feb 2012

Hi, I have achy joints and weak muscles, infact I think it's a normal side effect of chemo. I am not worried. - calories in a banana

kristasplace's picture
kristasplace
Posts: 876
Joined: Oct 2007

Hi there! I had the same exact problem from the moment i first started treatment. It got progressively worse until after my colon resection, i could barely walk anymore without severe pain. My primary doc had x-rays done of my back and came back with an osteopenia/degenerative disc disease/mild arthritis diagnosis. I didn't buy it. The pain was too severe. I finally got her to refer me to an osteopath, who upon looking at the same x-rays, thought the situation could be metastasis, OR hairline fractures. I got an MRI, and sure enough, i had osteoporosis off the charts low with such soft bones, bending over forward to pick something up could snap my spine. I had a large fracture in my sacrum that was causing the awful pain. I didn't understand why none of the other doctors saw what he saw until i realized he had special computer software that actual measured the bone density itself. Anyway, i still have severe pain in my back from constant hairline fractures, and my hips come out of joint very easily. There is stabbing pain everywhere below the waist. I also had the 5fu, and leukovorin along with oxaliplatin, and 30 radiation treatments to the pelvis. Most of my docs think the radiation did the bone damage, yet other ones think it was the chemo.

I guess if i were you, i would insist on seeing as many specialists as it takes to get your diagnosis. Find one that is willing to investigate your ailments to find a diagnosis. That's their job, after all!

Many hugs, and good luck!
Krista

Crikey! I didn't notice the date on this post!! I guess it's still a relevant issue, so what the hay!

terato's picture
terato
Posts: 384
Joined: Apr 2002

britches,

Check out this article from chemocare.com!

"Arthralgias may be due to side effects of certain cancer chemo treatments and medications such as paclitaxel, bleomycin, cladribine, L-asparaginase as well as biologic response modifiers (e.g. filgrastim, pegfilgrastim, sargramostim). Other causes of joint pain include:

* Rheumatoid Arthritis (RA) - an inflammatory disease involving many joints in the body. This is known as an autoimmune disease, which means, your immune system is contributing to your pain.
* Osteoarthritis (OA) - an inflammatory disease with pain and stiffness in many joints in the body. This is fairly common, lasting less than 30 minutes in the day after awaking from sleep. Many people with OA complain of morning stiffness.
* Medications - certain medications, as a side effect, can cause joint pain. The joint pain is usually relieved when the medications are stopped.
* Infections in the joint
* Other inflammatory conditions, such as gout (a collection of uric acid crystal deposits in the joint), or lupus

What Are Some Symptoms To Look For In Diagnosing Arthralgias?

* You may have swelling and redness of the painful joints or experience pain in one specific region, such as back pain. This pain may be mild, or severe. The pain may last a few minutes, or it may be constant.
* You may have fever, chills, if you have an infection.
* You may have pain in your muscles, as well as your joints.
* You may be overly tired, or very weak (fatigued). It may be hard for you to do any kind of your normal activities.
* You may feel depressed if you have constant pain..."

http://www.chemocare.com/managing/joint-pain-arthralgias.asp

Bleomycin was one of my three "poisons".

Love and Courage!

Rick

chinaberry25
Posts: 8
Joined: Apr 2009

Some of the pain could be because you went into menopause state in your body.I have never been treated with Chemo, but after I started menopause my arthritis onset. It is just a sign of getting old. You may want to try hormone replacement. I use Mobic and take Move Free. These both keep me going every day.

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

One thing to keep in mind, is that if you are experiencing pains, during treatments, you must tell your oncs right away. Any side effect, no matter how small you think it may be, is important to be discussed.

If the pains you are experiencing are following the completion of your treatments, then perhaps there are follow-up tests to see if radiation, or chemo drugs could have been the culprits.

In either case, it is so important to follow up with your doc, so that you don't do further harm to yourself. Alternative stuff is good, but it is not scientifically proven, and depending what you are currently going through, could cause more harm than good. And alternative stuff should definitely not be done without letting yoru doc know.

Paul E., (Hodgkoid2003)

jackie1020
Posts: 4
Joined: Jul 2009

that is not an option for me, my cancer grows on estragine so i take drugs to prevent my body from producing estragen.

BrittaA's picture
BrittaA
Posts: 20
Joined: May 2009

This is one of the most uncomfortable side effects of cancer treatments, and is linked to a number of chemotherapy drugs. It’s hard to find much information on this topic, and I know, as a survivor myself, that we need more resources on living our daily lives while undergoing treatments. I just did a recent post on my blog, Cinco Vidas, on some remedies that can help ease this joint pain (http://blog.cincovidas.com/side-effect-joint-pain%E2%80%94try-these-natural-remedies-to-ease-movement). Some of you may want to check out a new juice called Joint Juice (http://www.jointjuice.com/jointjuice.php) for a nutritional boost to help ease your joints. Love, strength and survival, Britta

jackie1020
Posts: 4
Joined: Jul 2009

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
]

erawit
Posts: 1
Joined: Aug 2009

I finished Taxal+ chemo and radiation last Sept. (2008) and the pain seems to be getting worse??? The pain is all enclusive, hands, elbows and upper arms, neck, hips, knees and feet (toes move back and forth between tingly and numb). My Dr.'s blame it on my diabeties, nerve damage from surgery, and osteoarthritis, anything but the chemo and radiation? I am slowly remembering things, I had majour memory loss after a lobectomy in the summer of 2007, which my Dr.'s can't seem to explain either???.
It's just all so frustrating ............ I too am exhausted from the pain but refuse to live on pain meds which seem to be the Dr.'s answer to everything ..... I am medically battered and have been thru to much to live the rest of my hard earned life in a med induced semi-coma.

nazma66
Posts: 5
Joined: Dec 2010

hello all,

I like this topic of joint pain. Right after I have started my tamofen (2 weeks), started feeling stiffness most in the morning in one hand which resembles Rheumatoid Arthritis. By the way i am a physician from Bangladesh. Did lots of study and research about breast cancer including side effects and its past,present, future. My Oncologist is a good one but sometimes ignoring. i asked her about pain ,she just ignored that may be computer use, or RA or nothing. She did not mention about tamoxifen. I read articles in pubmed and found some very recent ones. Mailed them to my doc and mentioned not to ignore anything of any patient.

i don't have other joint pain yet. I do light exercise regularly (4-5 days/week). I think it helps a lot.

Yes, it is frustrating but we all need to be strong and search remedy. Sometimes even a better physician ignore staff which is not right. Chemo has several system side effects. they need to pay attention but not to judge or ignore.

Ours2use1
Posts: 1
Joined: Jan 2012

I too was on tamoxifin and since breast cancer I have suffered with pain my doc has me on meloxican which seems to do nothing. Some days I am fine others I am in such pain cannot walk through grocery store or my hips hurt so bad I cannot sleep or I awake with hands swollen etc...this is not in my head and my primary doc has run test for arthritis and osteo even pinched nerve. So I decided to search and see who else is going thru this after treatment so its not all in my head what can I ask my doc for to test or treatment

marti1965
Posts: 2
Joined: Feb 2010

I was going through the posts on joint pain and came across yours and felt so sad to here about the problems that ur going through. As if havin g cancer isn;t bad enough...u also have to deal with harsh uncaring people. My heart goes out to you and I'm sending a little prayer to you so that things get easier for you and people start treating you better. Everything u described I've felt as well...the chronic bone pain, depression, not being able to do the things I used too...I've just finished radiaton and had chemo last year for breast cancer so I can relate...it may not mean much but there is someone here who understands. Keep your chin up....god bless

Robomaz
Posts: 3
Joined: May 2010

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.

cbpgill26
Posts: 68
Joined: Mar 2012

I have a sore hip, knees and neck and can hardly stand especially after sitting awhile. I had RChop for NHL but mine was the large diffuse B cell.  I know this is worse since all the chemo. not much doubt in my mind.  I too have had swollen ankles and hands off and on.  I try not to take anything but it is sooooooooo hard. Quality of life is awful and I look terrible. I have a friend my age and she looks like she couldbe my daughter and we are the same age! Pretty hard to take. I get depressed all the time and have insomnia like crazy.  Sorry we have to go through this.  I am worried now it has come back the NHL. Constant fear!

 

Sherryalltheway's picture
Sherryalltheway
Posts: 2
Joined: Jan 2013

I know this is an old post but I was wondering how you are doing.. I am 8 years out of cancer, chemo and all that went with it and I too

have brain fog, bone and joint pain,, I could go on and on... so i was wondering how you are?

horton_carla@ya...
Posts: 1
Joined: Jan 2010

I finished chemo Aug. 5 2009. My bones hurt then but now they hurt worse. My CT scan was clear 4 months ago, but having another one in March. I have toothache type pain in my hips back, feet, hands! Ive been so worried about bone cancer but hopefully its chemo related. My doctor said it was typical to have bone and joint pain related to chemo. Im so stiff I can hardly walk in the mornings. Anyway, you definietly shouldnt have to convince your doctor of anything but I believe it happens.

debbiejeanne's picture
debbiejeanne
Posts: 2352
Joined: Jan 2010

I'm so glad to see this topic. I just went to my gp on
Friday b/c my right arm, baby and ring fingers are num and hurt. My knees, back and hips hurt so bad it is scary. I can sit for 10 min and when I try to get up it takes a while b/c my hips hurt sooooooooooooooo bad, and when I walk you can actually hear the bone pop with each step. I never had chemo but I am 14 wks out of my last rad treatment. I did not have all this pain b4 my treatments but the oncol office says it isn't from radiation. I just find that hard to believe. When I sit for any time, my back hurts real bad also. My kids tell me I walk like an 80 year old woman. This discussion just convinces me that the radiation had something to do with it.
I am sorry that we are all going thru this after we have already been thru the hell of cancer and it's treaments. I pray that we will all get thru this and maybe one day we'll be very lucky and wake up w/o all the pain.
God Bless You,
Debbie

Dragonfly5
Posts: 2
Joined: Feb 2010

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!

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

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.

sue K
Posts: 18
Joined: Apr 2010

How wonderful it was for me to find this website yesterday! Am soooo pleased to know that I am not the only one in the world to have joint and bone pain after treatments. I was diagnosed with uterine carcinosarcoma last May. I had a radical hysterectomy, followed by chemo and radiotherapy. Treatments finished in October 2009. I am still experiencing severe pain in my back and legs, and it seems to be confusing the docs and oncologist. Exercise makes the pain much worse. This pain, and the inevitable fatigue from the treatments makes me quite depressed at times, and anxious in case the cancer has returned.
I am having scans this afternoon, and meet with my oncologist on Monday for results. I shall be pleased to be able to tell him that I am not so unusual with the pains I am experiencing, although maybe I am the only one in Scotland!
It's so good to 'meet' you all.
sue K

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

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

sue K
Posts: 18
Joined: Apr 2010

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

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

I'm finding from other groups I'm involved with, complain about their oncol docs, too. Many of them have no idea what side affects are from any treatments and claim they aren't causing our issues. How sad! I'm confused as to what doc to go to.

When I saw doc March for follow up, mentioned the buttock pain and he told me not cancer and if continues we'll chat next time and do tests or something. Before I have my June appt I called his office to ask about getting MRI, which is better at detecting these type of areas. RN spoke with him and he sugested at this point in time, go to my PCP...oh well! Good as you mentioned to know it's not cancer, but how abouit after affects????

The pain comes and goes, as today much better--- go figure. Going to chiropractor tomorrow as that is of help too. I'm in a therapy group here and go once per week. Our clinitian leader has same issues with lower back pain, as on radiation many times. She gave up on chiropractor and went to a physical therapist who is in tune with cancer and side affects from treatments. She has been working with her on strengthening her inner core (tummie area, etc) and she's doing oh so much better. I'm thinking about signing up with her. No I am on no meds, just some IB Prophine.

Ideas on another doc to go to for our condition?

Happy Memorial Day..
Jan

hilde451's picture
hilde451
Posts: 223
Joined: Oct 2009

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

sue K
Posts: 18
Joined: Apr 2010

Hi Hilde
Its been a few months since I last contributed to the discussion, but my aches and pains in joints and muscles continue. I think you should tell your oncologist, even though like mine, he may not do very much about it. I have found, like others, that doctors do not like to admit that cancer treatments can cause so much pain, long after treatment has finished. I had chemo - carboplatin and taxol last summer, followed by radiotherapy, finishing the treatments in October. Some others write that they are suffering these effects years after treatments, so I don't expect it to ease any time soon.
I take regular pain medication, and take as much exercise as I am able.
I am waiting for an appointment for an MRI scan to check things out as the pain in my back has increased, but am not expecting any sinister results.
Take care, hope you begin to feel better soon.
Sue

shoppergal
Posts: 118
Joined: Mar 2009

After I finished my treatments I had such severe pain that I couldn't walk, sit or stand comfortably. Lucky for me, I have a wonderful onc and she did alot of bloodwork, and then sent me to a rheumatologist. I was eventually diagnosed with rheumatoid arthritis throughout my body. I have been on Plaquinel and have had good results. Now my cancer is back and I will be starting chemo again so I don't know how my joints will feel! All i can di is hope for the best.

hpsquad's picture
hpsquad
Posts: 7
Joined: Nov 2009

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

CountryGal7557
Posts: 165
Joined: Feb 2011

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!!

CountryGal7557
Posts: 165
Joined: Feb 2011

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

pinksister2012
Posts: 2
Joined: Nov 2011

I did see a rheumatologist and he says he can't help me because the tests didn't show a rheumatoid disease. I'm being sent back there now because I have a positive ANA marker. We'll see. in the meantime, my pain management dr is prescribing the pain meds and muscle relaxers. I take baclofen and it helps.

pinksister2012
Posts: 2
Joined: Nov 2011

HI, I'm having the same sort of issue. My last round of chemo was March 11 this year and I am still suffering with horrible bone and muscle pain. I feel like I'm on a wild goose chase trying to find a doctor that will diagnose me. I don't want to be on pain meds for the rest of my life, and I'd like to be able to give a name to what is going on. My oncologist refuses to admit that it could be caused by the chemotherapy. I didn't have these problems until I had chemo. So far I've been to a rheumatologist who says he can't help me (until now, I'm being sent back to him to check for Lupus..yay! sarcasm), I've been to a neurologist that had the nerve to tell me that he believed my pain stemmed from depression. I will know tomorrow what the results of the EMG show. At least if it's nerve damage, it can be treated with things other than pain meds. I am depressed but the pain came before the depression, not to mention, I highly doubt depression could cause pain this severe. So, while I don't have any answers for you, I can tell you that you are not alone. If you find any answers, please share with me as well :) What chemo meds were you on? I was on Taxoteer and Cytoxin, and my doc told me that those meds shouldn't have caused my pain...well guess what...

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