living with joint pain long after chemo (WHY)

Tethys41

Tim6003 said:

I realize this thread is an older thread...but sure helped me

..relax a bit.  I can't tell what discussion board this is on, but I post regularly on the Head & Neck board.  A fellow warrior saw my post about joint pain and provided me the link.

I as dx base of tongue w/ one lymph node invovled, stage III HPV+ back in October 2011.  I finished radiation in January 2012.  I did not have surgery, and I only had Erbitux with my radiation (not the traditional chemo drugs). 

Well Sept of 2012 I was out hunting, cutting 5 cords of wood (we use wood to heat our home here in Idaho) as well as snowmobiling / hunting deep in the back country (wolf & mountain lion).  I was and am doing great.  However, about two months ago my elbow joints started to hurt, along with my wrists.  As of this post I have just seen my onco who ordered a battery of tests, blood profile, x-rays and what not. She seems to be looking to rule out lyphoma and leukemia and thinking it is either tennis elbow or RA ....so I am waiting on results.  I

I did not call my onco or GP until the pain got so bad tylenol and advil / aleve did not do anything and I found I could not split my wood (the old fashion way with an ax)...

So finding this post has been somewhat of a comfort.

 

Just about two months after my last rad I had the hip pain and still do.  It's not crippling pain, but at night it's bad especially if I sleep on one side to long.  No other joint pain.  I spoke to my onco about it as you all did and got the ??? don't know answer. I attributed it to my dramatic wieght loss in tx of 70lbs, to date I am 90lbs lighter than I was before dx.

Then as I say, about two months ago the elbows, wrists and shoulders started to hurt / ache , but the right elbow is giving me fits.

So I share this with you all to compare notes, and hopefully this threat will make it back to the top for others.  If anyone can tell me the discussion board it is on, that would be great.

I pray the best for all you warriors on here ...thanks to all those who continue to contribute to the board...good stuff and it helps so many follks.

Best,

 

Tim6003  / Idaho

Head & Neck Cancer Survivor 14 months

Stage III base of tongue HPV+ w/ one lymph node

Proud father of five / blessed husband of one

Joint Pain

I had joint pain for about 8 months following chemo.  Then I started to realize that many people seem to experience this and I also started to realize it was probably a symptom of autoimmune conditions.  I'm pretty convinced that chemo or cancer triggers autoimmunity.  RA is an autoimmune condition.  The best thing I've done for myself is to go on a diet to control autoimmune symptoms.  I learned about it in the book, "Autoimmune: The Cause and the Cure."  Almost immediately, the pain was gone, my digestion improved, and I had lots more energy.  The bonus is that this type of diet is also an anti-cancer diet.

oldhollowman

Tethys41 said:

Joint Pain

I had joint pain for about 8 months following chemo.  Then I started to realize that many people seem to experience this and I also started to realize it was probably a symptom of autoimmune conditions.  I'm pretty convinced that chemo or cancer triggers autoimmunity.  RA is an autoimmune condition.  The best thing I've done for myself is to go on a diet to control autoimmune symptoms.  I learned about it in the book, "Autoimmune: The Cause and the Cure."  Almost immediately, the pain was gone, my digestion improved, and I had lots more energy.  The bonus is that this type of diet is also an anti-cancer diet.

Joint Pain

its not great to see how many people suffer from this issue but sharing information helps us all cope. Ifinished chemo in nov 2012 and after 6 weeks started to get pain in my right hip. during treatment old backpain resurfaced but this stopped soon after treatment. I have never had leg or hip trouble but now it wakes me at night and is bearable without medication during the day. I do walk and exercise but struggle to lose weight. I am amazed at the lack of medical recognition about this problemwhen so many seem to suffer from pain. Will try the book on auto immune above. Thanks to all for input and ideas as ther is a certain comfort knowing I am not alone. I also love the picture of the blue rose, my Dad died of cancer and he used to grow blue moon roses, sweet memories.

nikkinmiss

4 months post chemo and drugs

4 months post chemo and drugs used were Taxol and Carbo for stage 1A Ovarian cancer(Granulosa Cell Tumor) I am fine down cancer wise but I am being crippled by pain in my joints, mainly my hands and legs. my hips are awful, my shoulders are now being affected and I am unable to sleep most nights because that is when its at its worse. I have a hard time describing the pain in my hands its almost like they are asleep but still painful jointws but half the time they sting like ants are eating at them I take very large does of Neurotin which helps but does not help the joint and bone pain. just looking to vent because Doctors don't even want to listen, 

tiffany16

nikkinmiss said:

4 months post chemo and drugs

4 months post chemo and drugs used were Taxol and Carbo for stage 1A Ovarian cancer(Granulosa Cell Tumor) I am fine down cancer wise but I am being crippled by pain in my joints, mainly my hands and legs. my hips are awful, my shoulders are now being affected and I am unable to sleep most nights because that is when its at its worse. I have a hard time describing the pain in my hands its almost like they are asleep but still painful jointws but half the time they sting like ants are eating at them I take very large does of Neurotin which helps but does not help the joint and bone pain. just looking to vent because Doctors don't even want to listen, 

2 Months post high level RAI 4months post cancer removal

I am so happy to find this!

I am 2 months post high level RAI for stage 4A thyroid cancer with 2 lymph nodes thrown in there. I had surgery in Jan to have my thyroid removed, then RAI in Feb to try and burn out the remaining 2 spots on my lymph nodes (I have no idea if that worked they told me I won't know for 3 years.)

I have been going insane trying to understand what has been happening to me. Since the surgery I have been having episodes of extreme muscle fatigue/weakness/pain and joint pain. I can't even fold 1/2 a load of laundry without my muscles siezing up and shaking. It hurts so bad my mouth waters and I can't do anything but wait for it to pass. I can't walk up stairs without need to rest 1/2 way up and again at the top. My episodes are mostly confined to 1 side of my body, but the joint swelling is everywhere. When I lay down at night my pelvis feels like it is grinding against itself and I wake up with the same pain.

The doctors treat me like I am crazy and tell me I expect too much out of myself and it could take a year for me to feel "back to normal again." My question to them is....the farther away from treatment I get shouldn't I feel better NOT worse! They also told me I should return to work and normal activity but I can hardly function.

I have been to the RA doctor who put me on prednisone, which I had an allergic reaction to, so he said there is nothing he can do for me now.

I am so happy to find this post because this is not the norm for treatment from radioactive iodine and I haven't been able to find anyone in a thyroid group who has the same symptoms. I don't know why they can't tell you things like this will happen to you. The little energy I have I really don't want to spend having to research what is happening when they could just tell me this "might" happen, or that others have reported the same thing. I think if it were them would they be happy with the answers they are giving me. Is it so hard to say they don't know....thanks for the vent :]

 

NCaliNHLWarrior

living w/joint pain long after chemo

I sure would love to chat. I read your post.Could've been me writing it!almost two monthes out last chemo. First chemo horrific experience was in wheelchair about a month walk w/limp now greatful!  But all is the same. Nerve muscle joints OUT OF CONTROL. N its a mystery. How are you?TY for your post. Email if you can @ glaunie@yahoo. Com.                Indolent follicular non hodgkins lymphoma 3rd stage. B/R. For treatment 

NCaliNHLWarrior

lizalv said:

Joint Pain long after Chemo
My cancer was non hodgkins B cell lymphoma. All lymph glands throughout my body. I originally had (6) treatments of Vincristine, Cytoxan and Rituxan.

My last chemo treatments were in September of 2011. My oncologist has scheduled me for rituxan once every other month for the next two years as a maintenance program.

I too have developed joint, muscle and what feels like bone pain everywhere. In my hands, fingers, lower back, legs, knees etc.

I'm making my doctors crazy, as they all have no explanation for my symptoms. I am schduled for an emg with a nuerologist next month. I am sorry to hear you too are experiencing these symptoms. I will let you know if any explanation comes my way. Thank you for sharing.
lizalv

Just did the nerve conduction test as well.Sounds as though we are on the same path includeing Doctors making you feel like a hypocondriac.Actually mine are now turning it around and blameing me.Calling it depression and over use of Hydrocodone.I have no history of abuse and same regimend for years.Nov.2012 severe allergic reactions to treatment w/Bendamustine/Rituximab.Shortly thereafter Something attacked myENTIRE body everything cracking severe pain cramps numbness tingleing ended up in wheel chair and ltemporary loss right arm.Limping now but grateful.Very weak w/grinding.Loss of balance.Almost undescribable the feeling in the joints.Your discription is best! I allways say feels like something missing in there and ligaments I think are doing something too.I have Severe spinal stenosis,lumbar radiculopathy,OA,NHL small B cell indolent follicular 3rd stage.Hoping for remission next month! W/History Guillan Barre syndrome.I am 43.Feels like 83.I am going crippled.Im wondering if this is permanent???? Last chemo March.22 2013 How are you doing? Arthalgia Perhaps? Love n Light

pegalina

weazer said:

living with joint pain long after chemo (WHY)
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

feelin like crap

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

pegalina

briestarr said:

Joint Pain/Triple Neg also
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

Pain

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 **** 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....

pegalina

briestarr said:

Joint Pain/Triple Neg also
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

pain

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 ****..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.

pegalina

jyoung said:

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

pain

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

pegalina

dennis318 said:

possible answer
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?

metal smell

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

dixieEQ

Pain After Chemo, Too

Just found this board and thought I'd weigh in with my problems, too.

I was diagnosed with breast cancer in July 2012.  Had lumpetomy, 4 rounds of chemo (taxotere and cytoxin), and 35 radiation treatments which finished up in February of 2013 and now taking arimidex for the next 5 years.  After my 3rd chemo treatment I started having pain in my bones and joints.  Onco adjusted my 4th and final chemo dosage but it didn't seem to help.  The onco had me discontinue the armidex for one month but that didn't help anything so I resumed taking it.  Also, had bone scan which showed nothing.  Now 6 months later I am going to see a rheumatologist today.

I am very active, walking, biking, riding horses, and occasionally yoga in addition to working everyday.  I am 55 years old and not overweight (5'3" 122 lbs); but I feel like I'm 90 years old.  All of my activity does nothing to help with the pain and after reading all of the responses here I feel like my visit to the rheumatologist is a waste of time, effort, and money and that I am doomed to this pain from now on.  Like all the others I have the stiff fingers and toes, the bottoms of my feet are sore to touch, my shoulder on the side that I had the radiation KILLS me, and if I sit for any length of time my butt hurts all the way down the back of my legs.  When I try to tell anyone what's gong on I feel silly saying my fingers and toes hurt.

I'm thinking maybe I'd just be better off taking the money I will spend on doctors and meds and just get a good muscle massage.

 

 

rose59

hi

i  dont have an answer,but im also going tru the same thing as you  are.i think every doc i went  and see about my pain think im crazy.cause they cant find anything wrong with me.i am going to my second breast cancer and still in treatmeant.my first breast cancer was in 1996, since then i have had this right hip pain going down to my whole leg and feet.cant work and stand very long.i now use a cane to help elevate the pain in my hips.i am also applying for the dissabilty but got denied,so im in the prosses of appealing it.its so hard to live like this.where you cant work because of this pain.im like you hoping someone out there can tell us what and where and how to solve this pain problem so we can live our life much easy day by day take care and godbless

Valjo06

dixieEQ said:

Pain After Chemo, Too

Just found this board and thought I'd weigh in with my problems, too.

I was diagnosed with breast cancer in July 2012.  Had lumpetomy, 4 rounds of chemo (taxotere and cytoxin), and 35 radiation treatments which finished up in February of 2013 and now taking arimidex for the next 5 years.  After my 3rd chemo treatment I started having pain in my bones and joints.  Onco adjusted my 4th and final chemo dosage but it didn't seem to help.  The onco had me discontinue the armidex for one month but that didn't help anything so I resumed taking it.  Also, had bone scan which showed nothing.  Now 6 months later I am going to see a rheumatologist today.

I am very active, walking, biking, riding horses, and occasionally yoga in addition to working everyday.  I am 55 years old and not overweight (5'3" 122 lbs); but I feel like I'm 90 years old.  All of my activity does nothing to help with the pain and after reading all of the responses here I feel like my visit to the rheumatologist is a waste of time, effort, and money and that I am doomed to this pain from now on.  Like all the others I have the stiff fingers and toes, the bottoms of my feet are sore to touch, my shoulder on the side that I had the radiation KILLS me, and if I sit for any length of time my butt hurts all the way down the back of my legs.  When I try to tell anyone what's gong on I feel silly saying my fingers and toes hurt.

I'm thinking maybe I'd just be better off taking the money I will spend on doctors and meds and just get a good muscle massage.

 

 

Pains - what I'm learning

HI.  I just read the last two entries.  I had rads (mega doses my onocologist told me at one time) back in 1980.  Total nodule radiation from bottom of chin to groin area.  Let's just fast forward.  I was 21 at that time, in my 40s I started noticing pain; numbness, tingling, burning, pinching, electrical shocks down my legs...took docs 7 years and they thought I was crazy, but finally found a broken vetebra (after how many scans I lost track, they never saw it).  So I had fusion in 2003 and 2006(it blew out).I also have SVT, Heart issues, that I take meds for and doc keeps an eye on. (Over these years I've had many docs think I was crazy and was making this all up.  They should just say "don't know what's wrong with you" instead of saying we're crazy. 

  So it's now, and the pinching, etc., is in ALL my limbs.  I have found helpful articles and support from others on here.  I will tell you what I learned.  Damage from rads and chemo is irreverible as we know.  Kills good cells too.  In the past two weeks I have started making calls to all my local (st louis area) cancer hospitals to ask if anyone is familar with Radiation fibrosis syndrome (goggle this and most articles will be by Dr. Stubblefield in NY).  Quite interesting and I swear I fit the mold after I've read them and watch videos.  This might be the case with those that only got chemo.  So over 5 years I've been seeing pain mgmt which gives me steriod shots for the fusion, but this is all new to him in arms.  as I said I have just started calling local hospitals and am getting some luck with places with new departments that deal in palliative care.  New to me, but I'm going to try it.  I recently had an MRI of head, neck, and thorasic.  Also have had bloodwork and lower MRI of back. EVERYTHING IS NORMAL.  The last neurologist says this is radiation damage.  He sees no other disease.  Back in 1980 I didn't have much of a choice.  So I have survived and had two children even though they said I may not. I'm now 54. I do feel your pain and I wish you all luck in finding someone to help you deal with pain (I have tried all drugs possible, my neuro told me  I have tried all the ones I listed for him, he said there's nothing new so nothing else to give me to try).  He truly believes it's all rad damage. So I wish you all luck and hope you can find someone in your area that is familiar with helping with the late effects of rads/chemo.  God Bless you all.  Have a great day.

sk8ermadre

pegalina said:

pain

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 ****..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.

long term side effects

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

sk8ermadre

Graeson5682 said:

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

joint pain

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!

Stephanie1984

rose59 said:

hi

i  dont have an answer,but im also going tru the same thing as you  are.i think every doc i went  and see about my pain think im crazy.cause they cant find anything wrong with me.i am going to my second breast cancer and still in treatmeant.my first breast cancer was in 1996, since then i have had this right hip pain going down to my whole leg and feet.cant work and stand very long.i now use a cane to help elevate the pain in my hips.i am also applying for the dissabilty but got denied,so im in the prosses of appealing it.its so hard to live like this.where you cant work because of this pain.im like you hoping someone out there can tell us what and where and how to solve this pain problem so we can live our life much easy day by day take care and godbless

Thank you

Thank you for sharing your story. I felt like I was going crazy too. I discovered my cancer on my 28th birthday, when I was 30 Weeks pregnant. My last year is crazier then and greys anatomy episode I've seen. I just don't understand why I still hurt. I finished chemo about a year ago.  I'm trying to excersice hoping it will start to get better. I don't know what else to do. I've had lots of tests. seen lots if doctors. I really felt crazy, until today. Keeping up with my family, and just got amother surgery date. Then it will be time to go back to work. I'm a nurse. 12 hour shifts. All on my feet. I'm a perfectionist. A seconde generation nurse. Terrified I won't be able to do it.

Blythe

colzee said:

joint pain
I have been reading all these posts about achy joints & muscles. I did chemo & had 4 surgeries & was thrown into menopause. I feel like an old lady somedays because I get so stiff. I have been using a natural supplement called Hyaluronic Acid which restores the synovial fluids in your joints & it is a miracle worker! When I run out & go for a week or two without it, I become "crunchy" and stiff again. I go to a local health food store & they are sooo helpful. They asked me if I felt like the Tinman & that was exactly how I felt. They recommended the Hyaluronic Acid & it has worked incredibly. It can be found at Vitamin world & I think Gnc too. I hope this helps some of you Survivors out there!

Joint pain after chemo

I was told by my Onc that when chemo put me into menopause, that it depleted the estrgen from my bones, causing the jont pain. Hmmm. My hips, knees, elbows and thumbs are most affected with the knees being the worst. My hands are weaker than before also. I take Glucosamine and a baby aspirin daily and try to stay active and exercise reguraly. I find that sitting, inactivity causes joints to hurt more. I am going to my GYN (Who has also gone through breast CA) and will ask if anything else can be done, because I don't like feeling like an old lady! I will also look into Hyaluronic acid, as you suggested.

evemcqueen

pegalina said:

Pain

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 **** 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....

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.

 

evemcqueen

briestarr said:

Joint Pain/Triple Neg also
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

Joint Bone Pain

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