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living with joint pain long after chemo (WHY)

shannong
Posts: 2
Joined: Jun 2003

joint pain 9 months still after chemo (WHY)
Message: I finished chemo approx. 9 months ago and towards the end of chemo I started developing joint pain in the hip. Now the joint pain has spread to every finger joint,my toes,ankles,knees and wrists. Docters have no explanation for my pain. I have had MRIs, pet scans,bone scans,& CT scans of everything and everything is normal. Have been checked for avascular necrosis. Have been seen by neuro doc,endo doc, rheumo doc, and every other doc there is. They can't explain why I have this
excruciating pain. Has anyone gone through this? I
need help from anyone that has gone through this and found some answer. Or ideas of what I should have doctors look for that they already have'nt.
I am stuggling everyday with this pain. Tomorrow
doc is checking my bone marrow but could still be a dead end. Was diagnosed with autonomic dysfunction in 1996. Docs know this but they seem to think not related. Please help!!!

maemaebears
Posts: 8
Joined: Jun 2003

hi shannon.. i went through chemo and radiation in 95 nd 96 and to this day i am still dealing the fatigue,muscle and joint aches and severe weakness that seems to be worsening each year and i still come down sick very easily and noone can tell me what is going on with me either and it is frustrating because i am being crippled and i don't know why.. so i understand what you are saying about tests coming back fine but pain not being fixed.. my email is littlebearcrying@juno.com if you eever feel like emailing me and talking take care and good luck and God Bless
mae-mae

MrsSantolla
Posts: 20
Joined: May 2003

Hi Shannon. I'm sorry to hear about your pain however I'm happy to tell you this. I had chemo and radiation 22 months ago and I as well have aches and joint pains. I can't say it was/is excruciating but I felt my body was turning into this old crippled woman. I had to do something.
About 3months ago I started exercising. NOT for weight loss/control but for a healthy well being. I was walking some however I didnt feel the benefit until I increased my workout. I do a combo of may different things since I tend to get bored with the same exercise an quit! I jump rope, jog some, do some stairs, some Taebo, sit- ups, weights and a little toning. It takes about a hour. I cannot express how much this has helped me. I now occasionally have pains. Usually in my hips. Some have totally disappeared. The numbness and tinglessness in my feet and toes seems to have improved. I feel like I have my life back, after almost 2 years! I now have the energy to do things I couldn't. Starting out was VERY hard. My knees hurt terrible and ankles. It was very frustrating. I was trying to help other things but created other pains. However I kept doing it, (5 days a week) and it passed within a couple of weeks. I dont know if you have a exercise routine, but I hope this will encourage you and others to do so. Especially those that have joint pains. I feel this has been my saving grace. I hope to hear from you. Take care and God bless.

weazer's picture
weazer
Posts: 440
Joined: Mar 2010

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

briestarr
Posts: 1
Joined: Aug 2011

This is crap! Sorry... that is how I feel...
Triple negative here also, and in pain in knees, elbows and worst, shoulder!
It seems it is all on the affected side... anyone else have any other information about after effects of chemo? I had TAXOL the last 4 sessions. I had 8 sessions total. I am only 50 and this is NOT what I had planned... I hurt. and now, I know I am not alone.
email me if you have any suggestions. beebear1961@yahoo.com

Brenda

pegalina
Posts: 42
Joined: May 2013

Ihad chemo june 2007..first 4 sessios..2 1/2 hrs..final 4 sesions 5 hrs each..then I had a double mastectomy & complete hysterectomy..then had 6 weeks of radiation..I was 42 yrs old @ the time..I swear to you..the chemo has ****ed me up..now @ 48 have RA ..major joint problems..my husband passed away 7 weeks ago..I have found so many people on the internet that have the same side effects as I do..it didnt happen rite away..Im talkin 2-3 yrs after chemo..I really want to do something about this..I've been in the dental field for 30 yrs..cant work now..is there anyone out there interested in helping me do a bit of research and if we can get enough people who had chemo & the side effects didnt hit them for @ least 2 yrs..You all think I'm full of ****..well I'm doing my 2nd application for disability with a lawyer..got denied the 1st time & my appeal got denied..I went to Res HS got a full ride to Loyola..I'm pretty dam smart.& if I can possibly win a lawsuit for me..why cant I file a major 1 for all of you....

evemcqueen
Posts: 2
Joined: Jun 2009

In 2008 I was diagnosed with Stage IV Her2 Breast Cancer. Tumor was so large that I had to undergo chemotherapy for several months before a radical mascetomy was performed. Left breast removed and 27 lymph nodes. After surgery, I spent then next year and a half on Chemotheraphy Herceptin. Shortly after the mascetomy, I began experiencing extreme joint/bone pain. Started in my shoulders but over time has spread to every joint in my body. This has impacted my life severly. When I complained to doctor about it, they just shrugged it off as if it was nothing and they couldn't imagine why I was having this pain. The pain was so intense that I was put on the patch 100mcg to help with pain. Patch was supposed to work for three days but reality is... only lasted two days and even worse I would often find the patch was gone, having come off after bathing or a day at the beach and wouldn't notice until pain started setting in. Of course, insurance (medicaid) is not going to allow a refill before 30 days. Finally, so fed up with the patch, I requested pain relief in form of pill and have been taking 60 mg extended relief morphine with 15 mg morphine for breakthrough pain. I cannot even vaccum the living room and my bedroom or hang out clothes on the line without it causing pain so I would take three or four of the 15 mg  and it was working great for me. Last month, my doctor pulled the 15mg from my medication list. I could not believe it and was very upset because it relieved the pain within 20- 30 minutes and I could manage to get a little more done in a day. The doctor has instructed me to take the 60 mg. once in the morning and then again at bedtime. I have NEVER used pain medication and feel it should only be used if I am in pain. I feel the doctor is creating an addict because now if I don't take the 60 mg in the morning, by mid day, I am having withdrawal pains.Breaking out in cold sweats and barely able to do anything but lie in bed or on the couch. This makes no sense to me whatsoever. I want to make the point that when I started having the severe joint/bone pain in my shoulders, elbows, wrists, legs, ankles,back (really bad) the doctor tried to tell me I had fibromyalgia. I had researched the internet extensively trying to determine the cause of my pain. One thing I learned was that opiates do not help fibromyalgia so it wasn't possible that was the cause of the pain because the patches and the morphine definitely relieved the pain. I am extremely frustrated because when you mention this pain to the doctors (and more than one) they refuse to acknowledge that the pain could possibly be from chemotheraphy. It was only after reading many stories such as the ones on this page that I discovered I wasn't the only one suffering with this. Approximately two weeks ago on NBC Nightly News, Brian Williams announced that research has revealed some types of chemotheraphy has long term side effects, the chief complaint....bone/joint pain. I am now in the process of trying to find a new pain management doctor due to the fact that obviously he doesn't understand how intense the pain is and his response to my complaint is that " I must be overdoing it and to slow down"! That is in direct opposition to the advice that the leading Pallative Care Expert in the United States, Dr. Buerra,employed by MD ANDERSON CANCER CENTER has told me. I was under his care for almost three years before returning to South Carolina. He directed me to make sure I got at least 45 minutes exercise per day, that it was imperative if I were to get better. Basically, Dr. Dunbar of South Carolina where I reside and returned to after three years at MD ANDERSON is not only creating an addict with the manatory dosage of morphine morning and night but also by taking away the 15 mg of morphine for break-through pain, it is not possible for me to get 45 minutes of exercise per day due to the pain. Something I also failed to mention is that upon my return to SC (he was treating me prior to my transfer to MD Anderson) instead of keeping the prescriptions down to as little as possible, he has prescribed a variety of other drugs that I have never taken and don't care to take. One of them I tried, knocks me out for 12-14 hours and upon awakening, I feel as though I have been run over by a Mac truck. I cannot understand why he feels the need to fix something that isn't broken. As I mentioned , I have never been on pain medication in my life and feel that the less pain medication I take, the better off I am. Am I just crazy thinking, why take 60 mg morphine in morning if I am not in pain at that time and even if I am, it is extended release so it takes so long to kick in that half of my day is gone and then take another 60 mg at night, whether I need it or not? My common sense tells me that I need a strong enough fast acting pain medication to take WHEN I start hurting real bad. I would aprreciate any and all feedback on my situation. I give thanks to God for those of you that have shared the joint/bone pain I have been suffering with for almost five years. I know now that I am not alone and I am certain the chemotheraphy has caused this condition which has basically stolen my life. As you know, it isn't even possible to go to the grocery store shopping because within ten minutes of shopping, my joints/bones start to ache and within 30 minutes, I am back at home in bed due to the pain. I used to be very active. Planting flower beds, camping, fishing, riverrafting, etc.. all of those things are no longer possible. If I had known the pain and suffering I have been experiencing since taking that chemotheraphy, I can assure you I would have opted out of the plan and left it in God's hands. Thank you for taking the time to read this and I pray for help and feedback. May God Bless You and heal you.

 

pegalina
Posts: 42
Joined: May 2013

Dear Brenda, I had treatment 5 yrs ago..4 chemo treatments every other week for 2 1/2 hrs..the next 4 weeks..5 hrs each..2 yrs after chemo..surgery..& 6 weeks of radiation..major joint and bone pain.I've been on the internet..found a bunch of people suffering like us..I was 42 when diagnosed with stage 3 breast cancer..I also have the brac1 gene..so I had a double mastectomy & complete hysterectomy..I applied for disability..got denied..appealed it..got denied..now I hired a lawyer..I grad HS & got a full ride for volleyball to college yrs ago..I'm very smart..I want to file a suit for anyone who has suffered like me..living this way is bullshit..my bones are of a 60 yr old..I'm 48 now..I know this from the bone density scan..I just want to make drs. accountable for their treatments..I was never told these major side effects that could happen 2-3 yrs down the road.

sk8ermadre's picture
sk8ermadre
Posts: 3
Joined: Oct 2013

Hi, I am Robyn , a 39 year old, 10 year survivor of non-Hodgkins Disease Lymphoma and I just wanted to say that I think the long term effects are just part of the deal. You know the deal where I get to live and watch my then 3 yr old, 5 yr old, 6 1/2 yr old and 8 1/2 year old daughters go on their first date, sit in the drivers seat of their first car,. I was there to hold them and swear I would  knock that boy into next week, the ones who gave them their first heartbreaks. To see them graduate high school and  to tell them not to pull over for unmarked police cars, and be aware of whose around them, to tell them to love their sisters and to never settle for less than they know they deserve, to tell them its o.k to make mistakes , they are the usual bridges between inexperience and wisdom. To tell them that I believe in them , that I am proud of them and to reassure them that love will come again, to tell them that it doesnt matter how many times they fall, its what they do when they get back up that really counts...to remind them to take time to smell the roses and teach them how to use a skill saw and how to change their own tire. I feel that chemo and radiation gave me a second chance and taught me to slow down and live each day as if it were my last. I see the sunsets now, I watch the stars twinkle, I notice new earrings, different style nail polish, and recognize the sounds of all my loved ones vehicles, I laugh, I cry, I yell, I get nervous, I get suprised, I read, I listen, I allow myself to feel all the emotions even the bad ones. I am no Mary Poppins! I often talk way to much, I am a bit to clingy at times but I am working on that , I am argumentitive but I am learning to pick my battles wisely these days. I am jealous in love and possesive of my lover but I am also loyal, funny, sincere, thoughtful and make love with a passion that leaves a smile on his face for days. I knew that the drugs used in my chemo (the Stanford 5) had to almost kill me to cure me, I can't expect to be perfect after the toxic crap they pumped me full of. Now they say I have subclavian steal syndrome  from the radiation to my chest, my nose and fingertips turn blue from the raynauds phenomenom, I have aortic insufficiency, mitrial regurgitation , my hair will not grow past my shoulders and is so fine now and a sleugh of other after effects from chemo and radiation but you know what I would trade my hair, my fingertips, my ability to breathe without assistance and 50 other  dibilatating long term effects for the time I have had watching my daughters grow in to intelligent, happy, healthy, beautiful young women they are today... just saying

Robyn's girls

evemcqueen
Posts: 2
Joined: Jun 2009

Dear Briestarr,

You can read my story further down the page but yes, I am experiencing the same type of side effects you are and I can assure you that after much research on the internet, as well as a report by Brian Wiliiams on NBC Nightly News a couple of weeks ago, the joint/bone pain is a result of chemotheraphy. Research has now proved it according to the Nightly News. I began experiencing the same type of pain after many months of chemo. On Sept. 8, 2008 I was diagnosed with Stage IV Her2 Positive Breast Cancer. The left breast had a tumor so large they could not remove the tumor without chemo for many months. Finally in May 2009, after taking chemo every three weeks for eight months, they were able to perform a radical mascetomy. Sometime in that time frame like you, I began experiencing extreme  "bone pain", the only way I knew to describle it. Realize now it is joint and bone pain. We are now in May 2014 and I am still suffering from severe pain in my back at my bra line, my legs, my shoulders, you name it... anywhere there is a joint. I was in such pain that I discussed it with my oncologist and he basically thought I was crazy or I had fibromylias. I began researching the internet to see if there were any other women out there that were going through the same thing I was and to my amazement, there were tons of complaints and it seemed everyone was of the same thought. This had to be a direct effect of the chemotheraphy. I researched fibromyasia and according to the research, opiates do not help fibermyasia. The doctor had prescribed opiates for my pain and they worked so this told me I did not have fibermyasia. The aching, throbbing pain would have me in bed for days on end..It has now been six years and the side effects are still here. You mentioned your shoulders were the worst. That is how mine also started out. My shoulders ached so bad I would be in tears. Eventually, every joint/bone in my body hurt severly. It moved down my legs, my ankles, my wrist....and then worse of all... now my back at my bra line. When mentioned to the doctor, he shrugged me off saying he didn't think chemo was the cause although he didn't have an answer. I encountered that not only from my oncologist here in South Carolina, but also at MD Anderson Cancer Center in Houston Tx. where I was born and raised. I spent three years there, getting chemo every three weeks until the struggle and pain was so much I quit the program and returned to SC. I suffer from fatigue very easy and cannot even hang clothes out on a clothes line for more than 10 minutes before my back starts throbbing and aching so bad I can barely stand it. Vaccuming, sweeping the floor has the same effect on me. Although I am on pain medication, it is not helping. I was 53 yrs. old when diagnosed and now...six years later... I feel as though I am 85 -90 years old. I wish I could help you but the only thing I know is that I literally live with a heating pad on my back. That helps.. The best way I use to describe the pain is that I feel like the TINMAN in the Wizard of Oz that has been left out in the rain for a few years. I used to be on a 100mcg patch for pain but they didn't last three days and many times they would come off (they were on my back) at the pool or beach and I wouldn't realize it until it was too late to find it. The two days that they lasted did give me great relief from the pain but you can only get those filled every thirty days so I finally asked to be removed and given a pill. I can't say that the morphine 60mg morning and one at night really help. I got great relief from the 15 mg because when I am in dire pain, I could take three or four of those and gosh, it would allievate the pain within 20 minutes or so but my doctor took those away from me last month for whatever reason I have no idea. I was able to manage the pain to the point that I could at least get out of the house and work in my flower beds and even go for a short trip to the store but that has now changed. Most days find me in bed. The worst thing for me but as you know, when you are in pain, get the heating pad and lay down. I honestly believe the doctors know about these long-term side effects but if disclosed, a great many of us would have rejected the chemo. I know I would have. Quality of life is much more important than quanity. I am sorry for you and will say prayers for you. I do believe in the power of prayer and may God help you and comfort you. Brenda, you can contact me anytime at evemcqueen@yahoo.com . I will give you my number and although I can't take away the pain, I can certainly be a friend during the rough times. God Bless You.

Eve 

pegalina
Posts: 42
Joined: May 2013

I just found this website..I thought I was the only 1 who felt like this..I'm 48 now..my husband passed away 6 weeks ago..5 years ago i was diagnosed with stage 3 breast cancer & I tested positive for the brac 1 gene..so in 1 surgery I had a double mastectomy & complete hysterectomy after going thru chemo..after surgery..had 6 weeks of radiation..I've had nothing but problems since..my joints and bones r degenerating..I blame it all on chemo..I know it saved mylife..but I'm 48 & when it rains or its cold..I can barely move..I now have arthritis & fibromyalgia(I was an athlete my entire life)..I swear to God I need & want to find a connection to my problems & this website confirms it.I'm not alone & neither r you..but I want to do something about it..because the way I am now is disgusting..some days..I have to crawl up the stairs with the laundry..I dont have dishes anymore..cant hold onto them..hope u get this e-mail..please write back

bullfrog13's picture
bullfrog13
Posts: 216
Joined: Apr 2002

Dear Shannon,
I know this sounds crazy but I feel the more you get up and go and do the better you may feel. I was having so much pain in joints that on some days I could not get myself up the stairs to my bedroom! I would sit and cry in the living room until my husband got home to help me to bed.
My last chemo was almost a year ago (August 2002). About September 2002 I started an exercise program and some of the pain seemed to ease, I wwaaayy overdid it and pushed myself to hard. I regrouped and started over again a short while later. I have lost 63 pounds and like 34 inches. This took a great deal of wieght off my bones, and joints. I had gained weight while on chemo-they say becuase of the steroids. I also feel better and recently hiked the grand canyon, a trip there is no way I ever though I'd make. EVER.

I do a work out at least 3 days a week, and when I don't I can tell the difference. Im more tired when I dont go--who knew? go figure!
Much luck to you
and God Bless
Jerilyn
Jerilynfrog13@yahoo.com

Graeson5682's picture
Graeson5682
Posts: 4
Joined: Dec 2003

Dear Bullfrog,
Thank you so much for your comments. I have been looking for some answers re: joint pains that keep me up at night. My last chemo was only a month ago, so I guess I should have more patience. But I don't want to just keep taking pain pills forever.
Like you, I gained weight when they put me on steroids (Prednisone). I am now off the steroid but the weight has not come off. I really would like to get rid of the weight and manage the pain through excersize rather than drugs, if possible. Can you recommend an excersize routine for a beginner?
Thanks again. You've inspired me. Hope you are still feeling well.
: ) kate123

dflannigan
Posts: 5
Joined: Apr 2004

I have been trying to find information for about 10 years now concerning the long term effects BMT on joints. I had a Bone Marrow Transplant for CML in 1990 and my joints have been aching for about 10 years now. It wasn't until last year that I was diagnosed with arthritis but now I'm told that it is unrelated to my cancer treatment or more likely caused by the extra 50 ibs I've put on. I've long since left my support group and I know it sounds crazy but I'm happy to hear more people are having this problem.

sk8ermadre's picture
sk8ermadre
Posts: 3
Joined: Oct 2013

Ten years later and I now have hip pain. The doctor says it is most likely due to the prednisone (steroids). I never had radiation to the hip area. I had over 30 tumors in my chest and neck so I am not sure if I go for the prednisone suggestion but maybe!

miraclemom's picture
miraclemom
Posts: 42
Joined: Jan 2003

Hi there,I know its been awhile since your posting but when I read it, it was like I was reading about myself.Its been a year since I finished chemo and I ache some days so bad and when its rainy and cold my body hurts even more.I was told that it was the after effects from chemo and the tamoxifen I'm on so bascilly-live with it.I do find that staying active does help and when I remain in one postion to long I get so stiff-just like a old lady.Would love to hear from you and know how your doing with this ache and pain business. Takecare and my e-mail is miraclemom12632001@yahoo.com

samill
Posts: 1
Joined: Jul 2003

Hi there. So sorry you are suffering so much. I understand fully. I finished chemo in oct 2000 and developed neuropathy in my feet and legs. So they put me on Neurontin. That worked very well. Neurontin numbs the nerve endings. I have had arthralgias in different parts of my body since chemo. Now it is in my feet. The doc tried prednisone for the inflammation and it did not work this time. It has been very effective in the past. I go to PT 3X a week and I still have pain. Exercise does not seem to do it for me, everytime I exceed the little I do at PT I suffer greatly. This feet thing has been going on since May now. You might want to consult a pain management clinic they specialize in all kinds of pain. It sounds like you have the side effect from chemo of arthralgia, which I am told is not uncommon in people who get chemo.
hang in there, have you tried a hot tub or soaking in your bath, in warm water. I find that helps too.
Let me know how you make out
samill
I also was tested for everything and every pain I complained of, because the CA metastasized to the bone, and they were all negative.
Neurontin is very effective in my case. It numbs the nerve endings and I don't feel the pain as much. However it makes me sleep alot. So I increase it as I need to for the pain.

.

beefjerky
Posts: 4
Joined: Aug 2003

I too am experiencing joint pain ten months after I finished chemo. I had six months of 5fu and leucovorin. I wonder if anyone else has joint pain from this chemo.

jyoung
Posts: 3
Joined: Oct 2003

Oh my gosh....I finished my Chemo a few months ago. All through my treatment and radiation my joints were giving me so much pain.Now worse.Only in my hands and elbows, shoulders. I have a hard time gripping my purse, drinks ect...aches. I am shorted of breath now. I do not like this at all. My Dr. said they will run blood work they did this today. I hate it. I am not on much here. But anyone feel free to to email me. I am 47 female with One breast removed in Dec then the other removed 6 months later.I would like anyone emails also. jyoung56@wwwebservice.net

pegalina
Posts: 42
Joined: May 2013

jyoung, I'm Peggy..5 yrs ago diagnosed with stage 3 breast cancer..also tested positive for brac1..so had a double mastectomy & complete hysterectomy(@ 42) I've had major joint and bone pain since 2 yrs following chemo..I now realize I'm not the only 1..I worked for 30 yrs & cant now..my RA and fibromyalgia is so bad I applied for disability..got denied..appealed..denied..so now I have a lawyer..my husband passed away 7 weeks ago suddenly of a heart attack..so what I would like to do is if I win in court..file a major suit against the drs who treated us..I was never told nor in writing the effects of chemo a yr or 2 later..I know chemo saved my life..however..I really cant do to much..I feel helpless..I'm so weak..have tried to work out(that was my life before cancer)..but my joints are so bad

aminmi
Posts: 8
Joined: Oct 2003

Very interesting reading your message and the replies. I finished chemo 7 months ago-Platinol and adriamycin. 2 months later I needed to have some dental work done and was given amoxicillin prior because my white counts were still low. I have taken this med several times before in my life with no problem, but this time it gave me awful pain in my shoulder and arm. A few wks. later I had to take it again and had the awful pain again only in my leg. I talked to my pharmicist and he had never heard of such a thing, said it must be a hypersensitivity I developed. Also, starting about the time chemo ended I began to notice that my joints would stiffen up much quicker than usual. After just holding the phone to my ear for a few mins. I would find it difficult to unbend my elbow to hang up. I thought it might be because I had not been able to do much in the way of exercise for about 9 months due to surgery, radiation and then chemo. Also, I had entered menopause due to surgery and thought that might have something to do with it. I'm just 50, but feel like I expected to feel when I was about 70. I'm now dealing with some numbness in my feet not unlike neuropathy which started several months after finishing chemo. I'm on B6, but Neurontin is my next step if B6 doesn't start to work so it is good to hear from those who have used it. It seems to be pretty evident from the replies that exercise helps, so I'm going to try to figure out a way to do that at home. Any suggestions of what type works best would be appreciated. Feel free to e-mail me at aminmi@hotmail.com.

bimbler
Posts: 4
Joined: Aug 2004

Hi,

I'm a 31 yr old guy, finished 12 months of treatment for Hodgkins disease about 9 months ago, had radiation to the abdomen and chemo called frontal hybrid - think it's a more aggressive version of ABVD.

Within about 3 months of finishing my treatment I was getting fit again. started working out regularly and taking the stairs in my 11 floor appartment block. I progressively got fitter and at about 5 months clear could happily run up the 11 flights without any major problems.

Now, I find myself on the verge of being crippled. My knees are next to useless, my hips lock and cause my pain and my calf muscles are almost constantly going into cramps. On top of this, pain and stiffness put to one side, I now find it almost impossible to walk up a single flight of stairs due to what I can only explain as fatigue. Even more worrying I am getting back the pains that I had before starting my treatment and the fatigue is what caused me to be diagnosed initially.

I've been back to my cancer specialists but they seem pretty disinterested. They made it perfectly clear that they aren't interested in the after effects of treatment and that I should be happy to be alive.

Would be interested in hearing from anyone who has suffered from similar problems and especially anyone who has managed to find an answer to these problems.

Mark (UK)

christmasang
Posts: 4
Joined: Apr 2005

Hi my name is noelle.my last chemo was feb 04 my chemo were taxol/carboplatn . I have been experiencing joint pain . The pain is not sever but there I wake up in the morning my feet hurt my ankles hurt and now my fingers are starting to ache. But the good news I am a ovarian cancer survivor.

lilcj7498
Posts: 1
Joined: Oct 2004

I finished chemo (CAT) in March 05 and am now experiencing joint pain. I have been very active all my life and now I feel crippled when I get out of bed to walk. Gets better through the day. The doctors just dismiss it. Also at night my left hand falls asleep, sometimes to the point my whole arm just aches. My doctor thinks I have carpal tunnel syndrome. I don't think so, it seemed to just start happening. They don't think it is from the chemo drugs. I'm wanting answers and solutions, but it seems the doctors don't really have any.

denbarlow
Posts: 2
Joined: Jun 2005

I finished chemo in Jan 05 (I did 6 months of CAT chemo on a dose dense clinical trial with over 100 filgrastim injections) and completed radiation in Mar 05. I am also experiencing joint pain that makes it hard to get out of bed in the morning (that first walk down the stairs in the morning is awful), get out of the car, or get up from my desk at work. It does get better once I am up moving around awhile. My shoulders and hands are also sore and my right thumb, index and middle fingers are swollen. They have called it lymphedema but the rest of my arm isn't swollen. Xrays have shown generalized degeneration in the hand joints but RA tests have been negative. My oncologist calls it "jelling" but that isn't a diagnosis and I am miserable with it. I believe that an active exercise program may help but the pain seems to have gotten progessively worse over the past couple months. I have been searching the internet for similar complaints and found that we are not alone but it doesn't appear that we are getting much support from the medical community. I take at least 800-1600 mg of Motrin each day (which my stomach doesn't like) but it doesn't take all the pain away. I have also tried Indocin with no better success. I am worried that I will not be able to keep up with my nursing position if the pain and stiffness progress. It has been good to find that this problem is shared by others if only to confirm to myself that I am not crazy and it is a real disability. I absolutely believe it is from the chemo drugs but I don't think it is neuropathy. I also have been active...only 45 when diagnosed with invasive ductal breast cancer in May 04. I had just returned from a tour of duty in Iraq so I was not out of shape or overweight. Granted I am not working out now and I do believe that may be contributing to the problem but not the cause. Please e-mail me. I would like to try to contact some of these other contributors to see how they feel this much later. Take care. Denise

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dennis318
Posts: 349
Joined: Feb 2010

Are you on Hydrocodones for the pain, I have stage 4 throat cancer, and to eat soft food i require 2 tablets before meal to get the food down, the soreness and the stretching kills me, and the pain is terrible. I also noticed the hip and wrist pain, i thought the hip was losing alot of weight, the wrist someone told me the drugs. I think the drugs have alot to do with depression. hope something to ask or get an answer back. I've noticed a metal smell from my throat, Dr. advisd me it was the radiation scares healing??? I hope so. Have a Good One. Dennis. P.S..My Doctor looks puzzled, But like i say, they have bever been threw this, and if you haven't been there, what answer can you give?

pegalina
Posts: 42
Joined: May 2013

Dennis, I'm writing to you because 1st of all my dad had what you have many years ago..also I was diagnosed with stage 3 breast cancer..had a double mastectomy & complete hysterectomy..chemo & radiation..the metal that you smell or maybe taste is from the radiation..my father was in the navy..had throat & head cancer..he said the same thing that you stated..I know for a fact everything you try to eat tastes like ****..rite?..I do not know the meds u r on..but..please listen to me..pasta..u wont like it..but good for u..as long as the sauce isnt to spicy..I'm probly tellin u what your doctor has said & I dont mean to..but shakes..pudding..applesauce..yogurt(I cant stand yogurt)..but I swear to god..pasta to keep your weight up...I really care

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

I am a 20 year survivor of NHL and had a bone marrow transplant and total body rads. I too have pain as you describe all this time after, in fact it's getting worse and I went through many many specialists before I got any answers at all. My family doctor gave me what she felt the pains were related too but I didn't have good solid diagnosises til just 3 years ago - the pains started many years before that.

In the end it was my 4the rheumatologist who sent me for every test they do looking for arthritis etc and she finally diagnosed me with osteoarthritis, probably bursitis in my hip (that causes pain and to the touch too) and fibromyalgia. Fibromyalgia involves the nerves and to me that is a big part of the key as to pain for survivors - just my opinion from how it has all played out. Too I was told before radiation that early arthritis was possible and that came to be the situation.

I will be going in for a nerve conduction test in a couple of months and I have no doubt that will show nerve damage for all the treatments I had years ago as well. I am not familiar with that auto disease you mention but that sounds suspicious to me too but again I don't know much about it. Have you had a nerve conduction test? They also do another test with the nerve conduction test and I cant for the life of me remember the name of it but I think they are commonly done together.

If I were you I would try a second opinion or even third from specialists - in particular a really well known rheumatologist, another neurologist, an internal specialist (in the U.S. that specialty might be known as something else but basically our internal specialists cover a wide variety of issues). Also it wouldnt hurt if you saw a doctor who specializes in hormones and immune system - again don't know what they are called in the States. Second and third opinions may well help. My bet is on either the new rheumatologist or the immune system specialist. Also the nerve conduction test could be key.

Good luck and I hope you find your answers. Bluerose

beckym69's picture
beckym69
Posts: 2
Joined: Jan 2011

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

CountryGal7557
Posts: 165
Joined: Feb 2011

I was diagnosed with Follicular B-Cell Indolent NHL Stage 4A March 2010. A Bone Marrow and PET scan determined it was gone by July. I also was on Treanda and Rituxan. I have read a lot of positive things about Treanda (plus a video http://www.youtube.com/watch?v=rEDNldZeYfE&feature=related
and when these two drugs are administered together, it's even better. It sounds like you are in good hands. I went to Roger Maris Cancer Center in Fargo ND, didn't need to go to Mayo Clinic in Rochester.

I have blogged my journey if you're interested in reading it. maybe our stories are similar.....http://lifeisgood2010.wordpress.com/

I just posted yesterday about the aches and pains I've been having and now tonight came across your post - your diagnosis is a bit farther advanced than what mine was, but I do have hope for you knowing that you are on Rituxan and Treanda....that is the latest and best! I'm guessing you didn't loose your hair! neither did I, and that is because of Treanda....good stuff!

From the posts that I've read it sounds like these aches and pains don't go away, but maybe can be decreased by exercising, walking. which I quit doing because it seemed to get worse, so now I am planning on walking everyday (again) and see if it will improve.

My ankles are the worst and sometimes the knees.

If you'd like to keep in touch, please email me at Countrygal7557@gmail.com
Good Luck
Janelle

CountryGal7557
Posts: 165
Joined: Feb 2011

this was my first post to CSN and I am very disappointed that not one person has responded to my post. not sure how this site works, but I will be looking elsewhere for a Cancer Support Network.

blessings to all who are still going through treatment and those who are in remission, I hope you remain cancer free for the rest of your natural life.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

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's picture
beckym69
Posts: 2
Joined: Jan 2011

Thank you! Wasn't aware of late effect clinics! No I haven't had radiation yet, they started me on rutuxan and treanda. We had to cut my prechemo steroids r/t me being allergic so I am having more n/v and other just blah side effects but if it works I can handle alot. :)

When they found out it was a B-cell NHL they were sure it was large B-cell because of my symptoms and the aggressiveness but turned out to be follicular. I never fit in the boxes though with anything, lol. I am not sure if radiation is the next step if the chemo doesn't work on my bone marrow too. We are kinda waiting to see how this turns out before discussing further options. I have noticed the neuropathy is getting worse with chemo, but I had it before from disc rupture so I am familiar with it.

I do appreciate you taking the time to message me back and telling me about the clinics. I am in the States so I will start researching. Thanks again!!!

Sincerely,
Becky

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

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

ron50's picture
ron50
Posts: 1261
Joined: Nov 2001

I'm sort of in the catergory of bluerose but not so far down the track. I have just finished year 13 ex stage3c colon ca(6 nodes). I had a year ,48 sessions,of 5Flourouricil enhanced with levamisole. I have had no signs of ca since. I have had arthritis,pancreatitis,gallbladder removal.three lots of kidney stones,severe proteinurea(losing up to 3gramms of protein a day through urine). I was treated with 75mg daily of prednisone for 18mos. I was then dx with fsgs (scarring of the kidney filters) and treated with 4 blood pressure meds. I soon developed severe peripheral neuropathy in both feet ,legs and left hand. No one knows why. After pred I suffered a major auto-immune arthritis attack. A bone scan showed arthritis in every joint. I was put on methotrexate ,it helped for nearly 18 mos then started causing acute vertigo attacks. I have been on arava ,one of the new designer arthritis drugs for a couple of months. I had two lots of blood tests last week ,one for kidney the other for arthritis. My gp clinic called monday and said to see a doctor. I was scheduled to see the arthritis doc today so I rang the kidney specialist. My protein loss has stabalised to between.4 and .6 gram in 24 hrs (.15 is the max acceptible) in the last year now it has shot up to 1.5 again. I saw my arthritis doc ,four of my liver markers are in the red and I have moderate diahorreah.I have to stop arava immediately. He took more blood to look for another liver enzyme which has to me present for me to try another drug,imuran. This is a transplant drug for goodness sake. To top it all I just got the results of an mri I had to see if they could find a cause of the neuropathy. They couldn't but they did find a degenerative stress fracture of the spine with severe arthritic degeneration. At least I know why walking hurts. I have said it many times and I'll say it again,surviving survival ain't easy....Ron.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Hey, you have to laugh at all this once in awhile eh? I know I do and yup I have chronic issues like you do.

As far as your neuropathy is concerned have you ever had a nerve conduction test? I am supposed to have one to assess nerve damage from chemo drugs and possibly radiation. I had the drug vincristine years ago and that drug was famous for producing nerve damage down the road. There are probably others that will do that too. I have nerve damage badly and was diagnosed with fibromyalgia too which as far as I am concered is nerve damage or nerve problems when all is said and done. Do you have a rheumatologist? They are qualifited to diagnosis fibromyalgia (at least here in Canada that's the route), so my suggestions are to 1. get a rheumatologist to look you over and to do a nerve conduction test. I am nervous to have one done cause I had to have a pacemaker implanted to deal with the heart damage another chemo drug did. Sheeesh, it goes around and around eh?

Take care Ron.

Blessings,

Bluerose

Ryu's picture
Ryu
Posts: 2
Joined: Sep 2012

How are you these days?

DanielH
Posts: 1
Joined: Aug 2011

I was diagnosed with NHL back in 1997. I've had CHOP chemo, autologous stem cell transplant, IBG treatments, Radiation, and Rituxin over the past 14 years. I too have suffered from neuropathy and joint pain, especially in the shoulders. I use Neurontin when the pain is extreme. It makes you sleepy, but it sure beats the pain!
Physical therapy only works so much for the shoulder and back pain. I've found that I have to keep moving. A neurologist also suggested staying hydrated. Dehydration is not good for nerve pain.

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Hi Daniel. That is the first time anyone has said anything about dehydration and I know I am horrible at drinking water so this is my wakeup call. Like Ron I have a host of other issues like lower back disc degeneration but my arthritis and fibromyalgia don't help and it makes perfect sense that hydration could in fact make things worse. Duh on me. lol.

Thanks for posting that, I'm sure this is going to help.

Blessings,

Bluerose

mm91174's picture
mm91174
Posts: 6
Joined: Nov 2009

I AM 25 YEARS PAST CHEMO AND MY JOINTS STILL HURT

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Oh also please don’t tell me that I will have this stuff hurting me for the next 25 years. I will need a large supply of medicine..

Well Oh :+))
Hondo

Kay5
Posts: 3
Joined: Oct 2011

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.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Bone pain is something you will need to find what works well with you I use Tramadol HCL 50mg with Tylenol three times a day and feel great all day long. Tramadol is a very light pain medicine as I don’t like the hard stuff that you get hooked on.

PS: Also welcome to CSN

╠╣ONDO

Kay5
Posts: 3
Joined: Oct 2011

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.

Hondo's picture
Hondo
Posts: 5608
Joined: Apr 2009

Same here my treatment was in 2003 and 2004 I did not find this site till 2009. I stay here mostly on the Head & Neck site to help other like me just starting through there treatment in hopes it makes it easier for them to know what to expect.

Wish you well next week on the doc visit
╠╣ONDO

aneesa
Posts: 1
Joined: Dec 2011

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.

Muschi's picture
Muschi
Posts: 85
Joined: Jan 2012

Aneesa this is for you and I know it will work. Drink a lot of veggie and carrot juice (you have to use a good juicer, if you are interrested I will give you the name),add one apple with either juice for the taste. Drink the juices once or twice a day do also an coffee anema twice a week. The reason I know it helps is because I did the juicing one year before the chemo and I felt not too bad during also that time, never threw( wrong spelling? Sorry I am German,haha)up, just felt a little under the weather. The reason for that was I got my body cleansed of all the toxins before I had in me and so when the chemo dumped all the new toxins in my body it was long not as bad. When I am finished with the herception treatment I will do the same again. I have a little join pain in the morning when I get up but as the day goes on it is getting better. The weird thing is my thumb on my left hand is giving me the most trubble. It is very stiff sometimes and than it is all ok again, weird!
I hope it will help you also, I am sure it does!
Ilona

triciagold
Posts: 1
Joined: Jan 2012

I, too, am suffering pain after chemo that ended 10 months ago.It is also a problem in my fingers and shoulders. My heel and hips were especially bad. I have been diagnosed with tendonitis in a couple of places and burcitis in my hips and arthritis in my fingers and shoulders. When I was diagnosed with breast cancer, I was coming up on needing my second hip replacement. I was 50 years old. I had arthritis going in to this treatment in my hips and spine but never in my fingers or shoulders. That said, I suffered 0 arthritis pain while being treated with chemo. Probably due to the large quantities of steroids pushed through each chemo day. After treatment, pain was soooo bad. I have tried physical therapy, motrin therapy and steroids. All helped while I was taking them. I, now, am following the advice of Dr. Andrew Weil (On-line). He has an anti-inflammatory' diet. It is helping some. My fingers and shoulders are back to normal after a couple of days. My bursitis is gone and my heel feels better. I gave up sugar in the way of candy, ice cream, marshmallows and white rice,bread,sugar. I have been a heavy sugar eater. I have also increased the food and teas that he has recommended. I don't think anything is wrong with my knee joints but the tendons above my knee caps have been a problem too. I have had some relief with this diet, I am hoping for more as time goes on. I'll post again if I get ahead of all of this with my new diet. I have found some of this 'anti-inflammarory' diet on Livestrong as well. I have read ehough to think that the pain may not come from the chemo but as a reaction to the massive amounts of steroids we are put on while being treated. Maybe they need to take us off of those more slowly.

CountryGal7557
Posts: 165
Joined: Feb 2011

I have the same joint pain that everyone else has posted about. Our stories are different, but we all had chemo, steroids, rituxan for various lengths of time to kill "cancer". these poisons we are pumped full of also attack the "good" too. that's common sense.

I got relief from this joint pain unexpectedly when I was on pain killers after emergency surgery June 2011. I was painFREE for two weeks after the pills ran out, when I decided I'd spend a sunny summer afternoon mowing the lawn. each step was stiff and painful. The pain was back.

Jan 2012 The pain is worse after riding in the car. the low vibration from the car floor for only 1/2 hr ride has caused the ankles to lock/stiffen and I'm an old lady getting out of the car.

The poison that attacks cancer, also attacks the ligaments similar to the aging process. I'm 54 and have empathy for my 86 year old Dad as he gets out of my car, after riding for an hour his legs and feet have stiffened up, and as he attempts to "warm" them up, he waddles into the VA home. The chemo has aged me 30 years sooner than I wanted, but I'm a survivor and I will do whatever it takes to make for a better quality of life each and every day with my husband of 33 years. Life is Good, I just wish it could be a little bit better.
Janelle
Dx March 2010
Remission July 2010 thru Present

Rachael1970
Posts: 4
Joined: Aug 2005

Hi Tricia,

I was having increased joint pain for the last 5 months and i thought it was just arthritis so i pushed it off until it was gettig so severe i had to walk for hours to wear myself out so I could fall asleep. My oncologist thought i was nuts so i was sent to rheumatoid eventhough all lab work came back normal. I saw him today and explained the severe pain to where if it went on any longer i would amputate both my arms above the elbows because the elbows were so painful. after his exam he told me i have "restless arm syndrome", exactly like restless leg. the restless elbow he said is from anemia and i am severe anemic. I was shocked. so i am on requip now and will start tonight. i thought it was very interesting and wanted to share

Rachael

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