living with joint pain long after chemo (WHY)

Jhoices said:

Aches

Not from Chemo! From hormone therapy afterwards Aromatase Therapy but can hang on for years. It causes osteoarthritis. i am on Femara . Go to www.askapatient.com type in your drug. BUT id on 5 yrs 30% better to decrease metástasis . Good Luck! 

I have not had any meds no hormon ruction meds, and my joints hurt so bad I cry at night

My dad is being discharged today from UPMC in Pittsburgh. 1year ago he was diagnosed with stage 3 Melanoma. After surgery, chemo treatments he got deathly sick having to be life flighted back to Pittsburgh. His cancer came  back a month ago. A catscan confirmed it was back but hadn't spread anywhere else just the same spot it was before. His neck. Just 4 days ago he had a new chemo treatment and they sent him home afterwards. 3  hr drive and by time they got home he started feeling stiff and sore. By midnight my mom had taken him to ER....they were stumped. With a fever of 103 and in so much pain he couldn't move his hands. They Drs were stumped Here at home so they got in touch with UPMC where his cancer doctor is and they transported him back to Pittsburgh. Yesterday they started him on a high dose of steroids. The Neurologist said how his body reacts to the steroids will tel them what they are dealing with. Today the dr walks in and said that because he is responding to the steroid so well he has Myositis.....chemo cause extreme inflammation to his muscles which cause the pain. For 4 days my dad couldn't move his legs arms or hands. Had to have help use urinal and be fed cause he couldn't move his hands to his mouth. Atleast it's an answer....I just thought I'd share this lil but of info incase it helps anyone else. I was up since 4:30 am yesterday reading all these stories and felt relieved others had the same symptoms but worried he would just have to live with it.  keep fighting and never give up!!! I'm not sure what his cancer Dr will do now as far as treatment but atleast we have a cause as to why he coul move she was in so much pain. 

I just finished chemotherapy on New Year's day. My oncologist informed me that the joint and muscle pain, that began shortly after beginning treatment in October of last year, would begin to improve after treatment stopped. However, a month removed from treatment and that is not the case at all. Since completing what is hopefully my final round of treatment I've developed mouth sores, obscure abdominal pain and neuropathy in my fingers and toes. Now the new symptoms are not uncommon side effects of the chemotherapy drugs I received. I think it's odd that I didn't develope them until the conclusion of my treatment but that's the way the cookie crumbles at times I suppose.

I came across your post looking to see if I was the only one who experienced the development of new side effects after treatment had ended and if people experienced pain in the joints and muscles beyond the projected recovery time table provided by thier oncologist. My oncologist is acting, at least it would seem, like there is no logical reason for me to still be in so much pain given treatment ended a month ago. I at times feel as though I'm being accused of abusing the prescriptions I'm receiving when in reality the prescriptions are lasting well beyond what they should given the quantity prescribed and the frequency they permitted to be consumed. It's extremely frustrating to be going through all of this only wanting to feel better so I can be a father to my little one who is actively involved in her life and feeling like some days things are getting worse especially following a day when things were substantially better. I've begun to read into the effects of physical pain on one's mental and emotional well-being as I've noticed things to be more difficult following actively battling cancer. I'm 31 and fighting to be able to watch my little girl grow up and hopefully eventually be a grandfather one day. I know this partially turned into a rant...my apologies. 

I was wondering if there are any doctors or anyone who has had similar experiences out there who might be able to help me with a way to approach my oncologist about my situation because right now I'm feeling attacked because I'm not following her timeline for progress and recovery. It's frustrating and a little demoralizing wanting to get better and feeling like it's taking longer than you were told it would and then being told essentially that your doctor doesn't believe you. I hope that this makes sense, any constructive and helpful feedback would be much appreciated. 

Esperti53 said:

Just Finished Chemotherapy

I just finished chemotherapy on New Year's day. My oncologist informed me that the joint and muscle pain, that began shortly after beginning treatment in October of last year, would begin to improve after treatment stopped. However, a month removed from treatment and that is not the case at all. Since completing what is hopefully my final round of treatment I've developed mouth sores, obscure abdominal pain and neuropathy in my fingers and toes. Now the new symptoms are not uncommon side effects of the chemotherapy drugs I received. I think it's odd that I didn't develope them until the conclusion of my treatment but that's the way the cookie crumbles at times I suppose.

I came across your post looking to see if I was the only one who experienced the development of new side effects after treatment had ended and if people experienced pain in the joints and muscles beyond the projected recovery time table provided by thier oncologist. My oncologist is acting, at least it would seem, like there is no logical reason for me to still be in so much pain given treatment ended a month ago. I at times feel as though I'm being accused of abusing the prescriptions I'm receiving when in reality the prescriptions are lasting well beyond what they should given the quantity prescribed and the frequency they permitted to be consumed. It's extremely frustrating to be going through all of this only wanting to feel better so I can be a father to my little one who is actively involved in her life and feeling like some days things are getting worse especially following a day when things were substantially better. I've begun to read into the effects of physical pain on one's mental and emotional well-being as I've noticed things to be more difficult following actively battling cancer. I'm 31 and fighting to be able to watch my little girl grow up and hopefully eventually be a grandfather one day. I know this partially turned into a rant...my apologies. 

 

I was wondering if there are any doctors or anyone who has had similar experiences out there who might be able to help me with a way to approach my oncologist about my situation because right now I'm feeling attacked because I'm not following her timeline for progress and recovery. It's frustrating and a little demoralizing wanting to get better and feeling like it's taking longer than you were told it would and then being told essentially that your doctor doesn't believe you. I hope that this makes sense, any constructive and helpful feedback would be much appreciated. 

You are not alone .  Same thing happened to me...See my other post.  

albeit these can bring on same pains, but pain sooooo bad and handicapped after chemo all other treatment was postponed since already went from 5k to wheelchair.  2 years past last chemo tch 6tc 18herceptin and I can walk but fatigue huge, pain huge, angles elbows hands feet neck shot, lost 2 inches height during chemo from neck disolve. still relearning talk/words/reread/write from chemo.  Cymbalta helps if you want to sleep rest life away and harder to kick than any illegal drug or cig.  they prescribe 40-60 cymbalta I could not handle 20. If I dumped 3/4 capsule out I could handle 5mg but zombie. I am now trying l-creaintine and malic and d-ribose, it helps a smidge which is welcomed. I'm trying CW CBD OUL now and only person on earth that can catch a buzz off THC free hemp with just a drop or two, again, a smidge but a smudge is huge in comparison. I have found the more active the worse it is. Which is frustrating because all my life my living room is stuffed with great equipment, I can only use it if I know I can be down and vegged for several days to 3 weeks.  I was athlete, im familiar with sport/exercise soreness, it is something unique to chemo damage because if I push thru it I end up in wheelchair again.  My guess mitochondria are toast and since a few years from last infusion dec 2014 nuerologist determined likely perm. My ono ignored all issues from day one like I was making things up, in hindsight I should have dumped him but I was in a whirlwind of ignorance of illness and treatment and now know better but too late.  I highly suggest finding a homeopath familiar with chemo issues good luck, as soon as I mention chemo they beg off.  

unfortatant insurance only overs invasive and big pharma approaches, but I suspect but can't afford to try acupuncture will help a lot. Things that have helped me unix UAM-8100 PRESSURE cuffs hip to toe cuffs, ascpercreme, very hot epsom baths, HT-Reflex2 calf/foot massager, intensity select combo tens unit i use the IF setting and it blocks pain, newtrlpure.com frankincense and myrrh and rub on sore limbs.  Again, things that work not covered by insurance, things that are covered will put you in coma/zombie and can not be good chemicals to help cells fight cancer.  Methocsrbanol pharma muscle relacent helps but not covered by insurance, name brand femara vs generic makes a difference once you can accept chemo pains and decide to take it but not covered by insurance ($700/month USA, $100 Canada and other countrits, in fact everything for health same mfr is 7x more in cost), keep weight off and avoid sugars both cause inflammation, and google a lot. Regardless what medical field and docs say, Dr. google has literally saved my life and further damage from doctors.  

DO NOT TRY TO BE OLD SELF ON GOOD DAYS!  It will set you back and my experience damage tendons and muscles, they are not the same anymore, I cannot say accept that because I have not myself.  Stick with one, I SAID ONE, session a day of Classical stretch:the Esmonde Technique, if feel rough next day go slow and stuff your type A "I can do it" into a drawer and do what you can of next session. GO SLOW. This is one case that turtle and hair race to get better feeling wins for the turtle.  I know, my A attitude not in drawer yet and if hubby not home to stop and pace me than i lose out living following days.  Research, some supplements will help you, some aggravate certain types of cancer. What may be good for Er+ may feed HER2+.  No magic bullet, not your imagination.  I cannot find the link where a ono nurse got cancer writes an apology letter in internet to all her patients because YOU NEVER CAN UNDERSTAND UNTIL IT HAPPENS TO YOU, her letter describes each side effect followed by, am sorry I didn't understand.  Do not let any person, lab, center tell you not from chemo and is from menopause, hormone changes, and inhibitors.  Do not doubt yourself, you know exactly something got buggered up, not to adapt, fight back, defy, stay active and lean, get a vitamix blender and blend kale and banana and such, ask a friend or neighbor to mall walk, play Kinect adventures (sloooowwwwly).  Do not go for broke with those beach workouts, or YouTube fit yoga beginner-too much, go for slow thi chi.

sorry long, but you have to be broken by chemo to GET IT, I get it, go slow.  Those around you that don't get it, be thankful they don't, you can tell them that.  If I hear my neighbor say one more time her friends worked full-time thru chemo and normal now I may risk breaking a tendon and....

  if I read research conclusions that symptoms from menopause and not from chemo or hormone inhibitors, I'm saddened by the ignorance and arrogance to dismiss the drug issues kept from patients until too late.  Only through forums did I get answers and not feel alone, that means neglegenc by medical field ignoring our symptoms during treatment, perm damaged, then find research proves issues and a simple lower dose or skip session or lengthen between infusions or slower push of infusion could have assured our quality of life.  I have no doubt chemo has actually shortened it, but only God knows.  I'm not ungrateful to medical field, I do feel they are negligent in collecting results beyond the trials for drug safety and it should be required patients' complaints proved submitted to mfr and FDA WITH PROOF TO PATIENT WAS DONE.  Doctors ignoring dismissing symptoms and running patients thru cattle drive cookie cutter treatments must stop.  I was unable to stand or walk without cane after first infusion, I was gasping for air after third, my eyes felt like sand and insomnia ('no joke like  8 hours a month until two years later I scored lunesta, my cognitive improved greatly) after third,  unable to talk/read/write after fourth, unable to recognise rooms in my own home of 30 years or heat a soup, pains off scale, where all responded to by doctor as anxiety. After third chemo I was permAntony transformed from high functioning Mensa smart bread winner and athlete to home bound relearning basic self care.  Research before picking a treatment.  Look into gene and immune therapy before cookie cutter carboplatin/taxotere route.  I know, if like me unable to drive years after first chemo and had to use local hospital system, but if you can get to speclty hospital do it.  I was high education, system engineer, tech and proposal writer before chemo, now grade school kids are sharing lessons to help me relearn.  chose wisely. if I were to guess, chemo is either rat poison or weed killer administered to just edge of death, guessing cause perm side affects seem same. 

I had Wilm's Tumor 17 years ago and ever since i still live with chronic knee joint pain. It decides to just show up randomly, varies in each knee, sometimes both. I am currently 19 years old. No doctors can explain why i have this constant knee pain. But it can become so painful that i can barely stand. It will flare up in the middle of the night and i lose sleep over it. The only way to really help it go away is to take ibuprofen, and elevate my knee. However, ibuprofen is bad for your kidney's, and considering I only have 1 kidney thanks to the Wilm's tumor, it kinda hurts me. So it is a viscious cycle. 

It kind of sucks being so young and having to constantly worry if my knee is gonna act up today. The other day i was at work and my knee started acting up and i had to sit down and i was rubbing it and a customer saw me and asks "what's wrong with your knee?" And i simply said it hurts, and she says "well aren't you a bit young for your knees to be hurting?". Like..well yes, i am. 

SniderFlower said:

My story is same

I think this is wrong what they have done to us.  We should be informed.  It's like All Dr's have a code when it comes to us.  "Don't dare admit  their pain is real and comes from chemo. We make too much money off this and we may get sued" They know exactly why we are in this pain. I'm so pissed that at 48 (6 years in remission) I'm worse off than my parents who are in their 70's. We should be given an option...die from cancer or suet  the rest of your life and have no one believe you or diagnose you.  It's so frustrating along with being painful and depressing bc we know we are too young to feel this damn old!! If someone knows how to do a class action lawsuit...PLEASE LET ME KNOW! bc I'm in! It's not right.  They are not stupid they just refuse to acknowledge our symptoms to us.  

 

I've even been told to see a psychiatrist!!! for my depression caused from being in so much constant pain.  I've told the docs over and over about the chemo coctail that I took.  The last doc that I saw decided that I was depressed and put me on Zoloft, which caused me to have a Grand Mal seizure.  I don't trust them, and really don't enjoy being diagnosed with depression.  Sure it keeps us down, because pain is constant.  I'm 63, 27 years out, and my 89 y/o Mom has more energy and less pain than I have.

MrsSantolla said:

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.

Hi MrsSantolla,

I know this post is old. But, this is all new to me and your response helped me tremendously. Thank you!

AngiB308 said:

joints

I also have had no hormone meds and I'm just over a year out after my last chemo.  My joint pain started a few months after chemo and got terrible! I could barely walk, felt 90 years old (I'm 47). One of my many docs finally tried prednisone which wiped it out, so we know it's inflammatory, and my rheumy workup (which was very thorough - the blood labs required 12 tubes of blood!!) showed some auto-immune activity (but not enough for a diagnosis of any auto-immune disorder). We assume it's a lingering side effect of chemo. In any case I now take a rhematoid arthritis med in addition to slowly tapering out the prednisone, and I am pain-free! It does start to come back if I forget a pill or try to taper down the pred too fast.

I desperately hope you still check this site. It's the latest dated post I can find. I finished a round of chemo and radiation in January and starting May 1st I repeat scans to determine if my tumor has shrunk enough for surgery. But at age 54, I feel like I'm 90. I'm so tired and ache so badly it's all I can do some days to get out of bed. I think every new ache means the cancer has spread. I honestly think I will go crazy if it's going to be this way the rest of my life. 

stage1968 said:

Nope

I have not had any meds no hormon ruction meds, and my joints hurt so bad I cry at night

 

I thought I was the only one experiencing this kind of pain after chemotherapy.  I sometimes feel debilitated in my legs because of the pain. I sit down and when I get up, it takes me a bit to walk because of the pain in my ankles and legs, and when I'm sleeping,  sometimes I wake up with pain in my feet, legs, fingers,  back. I thought I had a spreading type of arthritis because it's so painful.