living with joint pain long after chemo (WHY)

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  • stage1968
    stage1968 Member Posts: 2
    edited August 2016 #102
    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! 

    Nope

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

     

  • stage1968
    stage1968 Member Posts: 2
    edited August 2016 #103
    I so thought it was me.....

     

    I finished chemo at the end of Feb. 2016, the last round was herceptin and taxol, (12 rounds one a week) then my doctor did a loading dose of herceptin on week 13. I have been on and off herceptin since that big mistake!   My joints hurt so bad that I cry at night. I can not sleep because everything hurts. Some days are worse than others, My husband wants to start walking again, (we used to walk 4-8 miles a day) He know i hurt but thinks walking will help, I have to try, because through all the treatment I have gained 50 pounds.  I am so sick of the pain. I am not a wimp with pain, I have had so many surgeries that it is crazy and not once did I ever finish my pain meds.  This pain is way worse than surgery,  I took two narco and two anti inflammatory pills and I still hurt.  I am going to talk to my new oncologist and my family internist along with my orthopedic.  Pain make my philosophy of finding something positive in every day hard.

    But, I will continue to push on and always find something positive in every day!

     

  • Kim42wv
    Kim42wv Member Posts: 1
    edited November 2016 #104
    My dad is being discharged

    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. 

  • AngiB308
    AngiB308 Member Posts: 1
    edited January 2017 #105
    stage1968 said:

    Nope

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

     

    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.

  • Esperti53
    Esperti53 Member Posts: 1
    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. 

  • Silvernotgrey
    Silvernotgrey Member Posts: 2
    edited February 2017 #107
    Joint pain after chemo

    Hi   I finished chemo 3 months ago and finished radiation 7 weeks ago.  Within 2 weeks after finishing all treatment I experienced severe joint pain all over my body. My fingers are my most frequent complaint but at some point it has triggered pain in-between every joint of my body below my head.  I have noticed that this is not bothersome when my body is in motion or I sustain activities but does becomes an issue during times of rest. This makes waking up from a long sleep very painful. One of my doctors prescribed Amitriptyline at bedtime and Xanax for daytime rest periods.  Give this a try... I find if I take a Xanax in the early evening and then Amitriptyline before bed the two pills combined allow me to relax and get sleep. The Amitriptyline also helps me fall back asleep despite the pain I feel if I happen to wake up in the night.  Waking up, I still feel stiff but the sooner I get out of bed and get moving the better. I joined a gym and work out every morning now.  I don't have pain during my work outs but they do tire me out and I need to nap in the afternoon.  I also find that I drop things more often than I used to and items (such as a glass of water) feel heavier and are harder to pick up.  I also need the support of both of my legs to get me out of a car. I am hoping though that in time, with strength training this will fade. :)

  • Silvernotgrey
    Silvernotgrey Member Posts: 2
    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. 

    Just Finished Chemotherapy

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

  • ron50
    ron50 Member Posts: 1,723 Member
    What we learn to live with!

       I have just started year 20 ex stage three colon cancer. I have a range of auto immune problems . No one will admit that chemo could possibly be the cause. Most doctors have been trained to be in professional denial in that regard. I have auto-immune nephrotic syndrome. Untreated i loae up to eight grams of protein a day thru my urine which leaves me at high risk of blood clots , stroke ,embolysms ect ect . I take cyclosporine twice a day to keep my protein loss in check. Cyclosporine is a transplant grade immuno suppressant. I have psoriatic arhtritis and osteo arthritis in nearly every joint. My hips and knees are really bad but my nephrologist has vetoed any surgical intervention. he just said with your compromised immune system it will probably kill you. I have been on targin 80/40 for several years. (oxycodone//naloxone) not only did it stop working it caused more pain and I had to take two dulcolax and two coloxyl with every dose to stop opiate induced constipation. I am now 67 , I can barely walk ( also have severe neuropathy dxed by nerve conductivity tests) It took me 34 weeks to wean off targin. I am on no pain killers at all because of my kidneys. I live alone , my wife left. She got sick of my constant illness. I still work four days a week. I often wonder why I bother to keep going but I am too stubborn to give up. I have moderate auto immune hepatitis from the medications keeping me alive. I have had life alterring changes due to horrific drugs like prednisone. I was on 75 mg daily for nearly two years. I now have osteo penia and am seven centimeters shorter. The base of my spine is trashed . Surving cancer survival sure isn't easy. Ron.

  • cif
    cif Member Posts: 10
    edited March 2017 #110
    Pain can be form chemo damage or AI's but go away if stop AI

    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. 

  • SniderFlower
    SniderFlower Member Posts: 1
    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.  

     

  • Acd129
    Acd129 Member Posts: 1
    edited April 2017 #112
    Knee pain after 17 years post chemo

    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. 

  • ShirleyMis
    ShirleyMis Member Posts: 3
    The Pain is REAL!!

    I was diagnosed in 1990, had 6 months of Chemo every other week, 5 years of Tamoxifen, and 5 years of injection of Study drug into my stomach 1 x per month. NO ONE discussed the after effects of what chemo and all drugs received would have later in life.  I'm now 63 and often feel like I'm 90.  I'm so very thankful to be here, however quality of life is often questionable. I've lived on IBProfen and Motrin for so many years now, questioning what it is doing to my liver! The pain in my hands became so bad that I finally went to a hand surgeron to find out what was going on.  I was told that I had severe Arthritis in both thumb joints and it could be fixed with surgery.  I am now 4 wks out from this reconstruction of my dominant hand (questioning whether I made the right decision).  I go to bed with so much pain in my knees and lower back, and have just thought this is part of an aging process!! I'm ONLY 63!!!  I received Adriamycin, Cytoxin +3 others, had bilateral mastectomy, 27 surgeries in 19 years, the Tamoxifen for 5 years, and the stomach injection for 5 years.  One would think that that would be enough for any one person to endure. I've spent the morning reading about stories, YOUR stories, and I thank you all for shedding light on all of this.  I just had a doctor ask me if I've ever been checked for Rheumatoid Arthritis when I complain of joint pain ALL over, hands, back, knees, hips.  I won't give into this.   We ARE warriors!! Again, thank you ALL for sharing. 

  • ShirleyMis
    ShirleyMis Member Posts: 3
    edited April 2017 #114

    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

    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.

     

     

  • Keeponkeepingon
    Keeponkeepingon Member Posts: 2
    edited August 2017 #115
    It's not aromatherapy or tamoxifen

    I am grateful to have recently survived chemo and radiation pretty well, during the first half of 2017, for Stage 3 Non-Hodgkins Lymphoma. I consider myself very lucky and very blessed for sure. I do, however, share in some of the bewilderment about why no warning about after effects (of R-CHOP for 18 weeks and 17 sessions radiation). I'm not sure if my doctor doesn't know about that part of cancer, or tries to keep patients positive by not discussing aftermath, or what. But I would have like to have had some warning that my toenails would come off 2 months after the end of chemo, and the very brief mention of a little fatigue for a little while was definitely understated, and I never heard anything about the debilitating joint pain until I 'Binged' it and found this forum. I can hardly clench my hands right now or open them back up if I do, and my feet feel like they're trying now to do the same thing. I am worried about becoming crippled by this, and I am looking for answers and solutions that will allow me to keep on working (because I have to) and living. I know it isn't caused by aromatherapy or tamoxifen, because I don't do either of those. God bless the doctors and nurses and technicians who saved me from cancer, and the people who supported me; I am grateful that I got through chemo and my tumors are gone right now, but I didn't know to expect this, nor do I know how to treat it without more heavy duty meds and all the aftereffects that seemingly comes with every single thing you take. Anyway, count me as another survivor looking for answers.

  • JssBst88
    JssBst88 Member Posts: 1

    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.

    Thank you

    Hi MrsSantolla,

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

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    edited September 2017 #117
    muscle and joint pain

    As all of you know, we share and we learn. I am 77, had BC cancer 21 years ago, stage 3; surgery,6 rounds of chemo and 6 weeks of radiation and 5 yrs. of Tamoxifan. In Jan. 2017,UC ,probably due to Tamoxifin but caught early; surgery, chemo, radiation, blood clots but now just 3 more months on Lovenox and I am done! However, I had such a caring group 21 years ago that I was told how to care for my teeth to avoid dry mouth. Oncologist gave me prescription for massages 2/month and I did great.

    Now, after recent treatments, am feeling pain in neck and shoulders so asked for PT which I begin on Monday. Also spend 30-60 min. 3 times a week in the pool for mild water exercise. I also use heating pad. As soon as I am off blood thinners, will resume massages as they are good for body, mind and spirit. As you see by my pic, have ridden horses all my life and plan to be back on my horse come January and off BT! Stay positive, keep moving and ask for what you think you need. 

  • vsinn2000
    vsinn2000 Member Posts: 6
    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.

    Joint pain

    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. 

  • MeadowL
    MeadowL Member Posts: 2
    edited August 2018 #119
    Amazed

    I am amazed that this topic/thread began in 2003, here it is August 2018 & still nothing has been done.  I'm still currently on maintenance chemo with herceptin, and I'm already experiencing those symptoms. I'm amazed that in the last 15 years, the medical field, organizations, our technology, etc. hasn't found something better. Something less barbaric. Something less intrusive. Something less damaging in the long run.  Reading all these posts makes me want to stop all treatment & go 100% holistic... but.. I know I won't.  I have been doing holistic treatment (juicing, light therapy - mydynamiclife.org, yoga) in conjunction with my traditional medicine/chemo treatments. Don't give up, ladies!!  Rock it!

  • tabbylin10
    tabbylin10 Member Posts: 1
    edited September 2018 #120
    stage1968 said:

    Nope

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

     

    Joint pain

    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. 

  • Temo
    Temo Member Posts: 1
    edited September 2018 #121
    Me too!

    It’s such a relief to know that I am not alone!  I had mastectomy and chemo in 2014.  Joint pain is continually getting worse, fatigue is indescribable, and I seem to have developed allergies and catch every virus that comes my way now.  Seems like autoimmune problems, but bloodwork always comes out fine.  The fatigue has caused me to cut back my hours drastically and now I am down to 10-15 hours weekly  & even that seems too much for me now.  I was convinced that it MUST be bone mets, but my bone scan last week, says “no definite scintigraphic evidence of skeletal metastatic disease”.   So now what?  I’m told I’m lucky to be alive and to “suck it up”!  I’m so tired of the constant fatigue and pain. There seems to be no support from the medical community after they mess you up with chemo.  

    Has ANYONE found a way out of this?