living with joint pain long after chemo (WHY)

Margasr

Joint pain and mesenquimal cartilague regeneration

Hi! I am 54 and suffering same long term chemo effects after breast cancer, hard joint pain and expecting knee surgery as actually can hardly walk.

Anyone tried regeneration treatment with mesenquimal cells?

SurvivorSuzanne444

Experiencing joint pain a year and a half after chemo/radiation

I am so happy I found this group after joining CSN last year when I began searching for answers to my pain.  I was diagnosed with uterine cancer in June of 2016.  I had a full hysterectomy in August of that year and began chemo that September.  I was told to have 6 rounds of chemo but they would sandwich 28 rounds of radiation.  My cancer was grade3 of 4...so they wanted to thwart off any chance of reoccurance.  No cancer in the six lymph nodes or wide margins...thankfully...so I took my orders and followed the doctor's orders.  I got thru the chemo treatments but the Neulasta self injectors they taped to my stomach caused me a lot of pain and muscle ache.  By the time I went back for #4 chemo...I told the oncologist I refused to take the Neulasta again.  My biggest problem was dehydration as I feel like I'm drowning in a glass of water.  I paid dearly for that...during treatment.  Two trips to the ER and an overnight stay for fluids after they admitted me for severe dehydration.  I decded I'd had enoug chemo.  My oncologist was very upset with me...but I still refused UNLESS she would assure me I'd be admitted to the hospital if I had one ounce of trouble.  I live alone and I would be down for days, unable to get out of bed...to even feed myself.  I stayed with my daughter who lived near the hospital where I got treatment...and luckily the 5th chemo was a breeze.  I felt well enough to drive myself for fluids four days in a row...and only needed one injection for low white cell count.  IF all of the previous chemo rounds had gone that well...I would have nothing bad to say EXCEPT now in the aftermath....I have neuropathy in both feet...and one thigh...and the joint pain and weakness in my lower body and legs is very evident in my daily life.  If I sit more than five minutes.....I can barely get up out of a chair.  I can no longer get out of the bathtub without hoisting myself by my arms...and pulling my legs up under me...If I squatted...and my life depended on it...I could NOT get up with using both arms. I have lower back pain now too...which I assume is from the radiation.  I had NO issued during radiation...both external and internal rounds causee me no discomfort.  I just kept wondering if I was crazy imagining all this pain and stiffness came on so aggressively once I was done with the chemo...  I'm really relived to read these posts and hear that I'm not imagining it all...I told my cancer oncologist about it also...and she just noted it in the computer.  I have issues with my bowels now too...from the radiation.  I just had a colonoscopy after I bled from the rectom two months ago...and it scared me half to death.  The doctor told me I have damage to my colon from radiation...and they can perform some treatment that would cause scabs to form where the tissue is raw...and bled.  I opted out of that for now.  I do want to thank all the posters on here...past and more current....for sharing your experiences... It helps all of us to know we are not alone in our trials and tribulations in the aftermath of cancer.  God bless all of you...and stay storng in your fight to be heard and survive this ordeal.  Sincere best wishes...Suzanne in Pennsylvania

nancyny

evemcqueen said:

joint pain after chemo

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.

 

Pain post cancer

After beating stage 3 Invasive Breqst Cancer with surgery, chemo and radiation, the muscle and joint pain, along with fatigue, neuropathy etc. Whether from taxol or endocrine therapy is ruining my life.!I regret choosing to pursue chemo and am considering ending endocrine therapy despite knowing the consequences. I am tired of fighting, I am broke and lonely and used to be a trial lawyer and highly functional. Now I can't remember where I put my glasses. Or fill out a form. This is awful. I give it two months and will try to exercise. After that, I give up. This is no way to live. 

KarRmol76

anxiety after chemo is over 8 months

I was diagnosed with non hodgkins lymphoma and completed chemo 8 months ago.  it is now that I am expoeriencing great anxiety and don't know if it is caused by cancer returning, effects of chemo, or needing an increase inmy anxiety medication.  I don't know who to go see first - psychiatrist, primary care, or oncologist.  Being "scared" is a terrible thing!