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6 months post chemo. and alot of pain

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

So it's been about 6 months since I finished chemo. About 6 weeks post-chemo, I started experiencing severe joint pain. Mainly in my hands & wrists, knees, and hips. I was on pretty heavy duty painkillers for a few months, and it started feeling better, so I was down to taking a combination of ibuprofen and tylenol to control the pain. Well, the pain has flared up again. Now it's not only extremely painful, but my hands are swelling up at random times, I'm having trouble sleeping because I can't get comfortable, and I'm not getting any relief. I called my Onc yesterday about it - I had a check up appt scheduled for Friday anyway, but I explained to them that I was having terrible pain & wanted to see him a.s.a.p. so they got me in this morning. Dr told me that at 6 months past chemo it should be out of my system, and that's not causing my pain. Along with my regular blood work he ordered all kinds of tests for rheumatoid issues as well as lupus. All I know is - I'm 35, I feel like i'm 65. I don't walk - I shuffle. I have a 2 and 1/2 yr old at home and i cant pick her up half the time. I didn't have this pain AT ALL before I had chemo. He says it's NOT a side effect from the tamoxifen im on, either. So, I'm to call back in 2 days for my test results and other than that, he said he'd see me in a month. I'm so upset and frustrated. I hurt SO BAD. I just can't accept that this is just part of cancer treatment and I need to learn to live with the pain. I know I will never be the same person as I was before cancer. But I refuse to accept that I just have to live with this. Do any of you have anything similar going on?
thanks!
*hugs*
Heather

joannstar
Posts: 347
Joined: Nov 2010

are experiencing so much pain.
I'm just 3 months out of chemo and haven't had that issue. I sometimes have pains in my feet or aches in my wrists but not like you are describing.
I hope that you find a solution soon--you've been through enough already.
Hugs & smiles,
JoAnn

phoenixrising's picture
phoenixrising
Posts: 1509
Joined: Feb 2007

Sounds like you're having a real rough go of things. A quick internet search found that Tamoxifen can indeed cause joint pain. Here are some links and excerpts:

Tamoxifen, questions and answers

"The known, serious side effects of tamoxifen are blood clots, strokes, uterine cancer, and cataracts. Other side effects include menopause-like symptoms such as hot flashes, vaginal dryness, joint pain, and leg cramps (see Questions 4-8)."

Komen forum

This is a forum where there are the same complaints. When I suspected a SE from a drug I would go off it for awhile to be sure.....something you might want to discuss with your doc.

Hope you find relief soon,
hugs
jan

mollyz's picture
mollyz
Posts: 737
Joined: Sep 2010

Hi Heather,I'm having the same pain I'm 3 months out of chemo and my hands and fingers hurt when i wake up i have a hard time opening them and don't mention my hips I do know the chemo messes with the ending of our nerves and I'm like you i thought mine would be out of my system by now my Dr. wrote me a prescription for lyrica but like i said before i don't take it the side effects are terrible my Dr. said it was neuropathy but boy if i sit to long i get up and try to walk it hurts when i go to church on Sunday i take aleve I'm not a fan of taking meds so i deal with it during the week but please if you find an answer please let me know i don't see my onc. dr. until May. HUGS MOLLYZ

Annette 11
Posts: 379
Joined: Sep 2010

I don't have any joint pain and I am 5 months post chemo...I believe I had similiar chemo as you did but could it be Tamoxafin that is causing your joint pains?? I am not taking that medicine since I was TN. So sorry you are feeling so poorly. Let us know what blood work shows. I feel bad that you are going through this after all that you have been through.
Hugs
Annette

Texasgirl10's picture
Texasgirl10
Posts: 668
Joined: Nov 2010

Heather, I am so sorry that you are having so much pain. Unfortunatley some doctors don't beleve that pain is exactly what the patient says it is. You know your body better than anyone else, and if you are in pain keep telling him until he does something. Take a list of the side effects to him and make him read them. Remind him that sometimes it takes years to actually get over the side effects of chemo and that each person is different and will react different to medications. In my opinion though, you shouldn't have to remind him, he is an onc so he should already know this. This angers me and I just feel that you should not have to live in pain or with pain meds everyday. I'm so sorry that you are going through this and I hope it gets better.

Hugs and God Bless,

Dawne

carkris's picture
carkris
Posts: 4523
Joined: Aug 2009

I have joint and muscle pain, my onc said it was form the sudden menopause (chemo pause) and the tamoxifen. I dont have swelling, and I dont need pain meds, so your sounds extreme. Perhaps you should ask about going off the tamoxifen to see. some people suggest fish oil, glusosamine. I hope this gets better, stay positive.

Chickadee1955's picture
Chickadee1955
Posts: 333
Joined: Apr 2010

Heatherbelle,

I am 7 months post chemo. I am on Femara. I had no SE at all until I went off Cymbalta (which I had been taking for about 2 years). All of the sudden I had terrible pain in my knees and hips, random stiffness and pain, swelling of my left arm and fingers. I think the Cymbalta masked the SE of the Femara. My Onc took me off Femara for 6 weeks. The knee pain lessened, but the other SE continued and my sleep has been way off. I can fall asleep, but I awaken in the night and it takes an hour to an hour and a half to go back to sleep.

My Onc says that the only way to see what is causing any given SE is to discontinue one drug at a time and see what happens. She has me back on Femara, said if SE worsen we can change to Tamoxifen, but I know that has SE too. She also suggested I reconsider discontinuing Cymbalta. I'm going to see my PCP in a couple of weeks and I'll talk to him about it. Onc has kind of said some of the SE I describe couldn't be chemo, too, but she's at a loss and wants me to take it up with PCP.

All that to say I get what you're saying and feel your frustration. I felt fine before I got treatment for cancer.

sea60's picture
sea60
Posts: 2601
Joined: May 2010

Yes! When I finished Chemo & radiation and I was going to my Oncologist for follow-ups, Jennifer, the nurse would always ask me how my pain was. Other than a few aches here and there, I was good so I was always baffled by that question. However, with each passing "6 month" check-up, I noticed the joint pain creeping in. You certainly do feel like your body went through a 10 year aging process in a year's time.

I have come to the realization, my body IS changed, its aged and I'm feeling it so all I can do is eat right and make sure I walk at least 30 minutes a day and do my part as best as I can. I know that just an extra 5 pounds can make me feel so much worse.

Take your vitamins and try the glucosamine.

What I noticed after 5 years is this year, I have caught just about everything. Not sure if my immunity is just low or what all of a sudden. I'll be seeing the Onc this June.

Hang in there girl. Most of us are shuffling right along side you.

Hugs,

Sylvia

aysemari's picture
aysemari
Posts: 1586
Joined: Dec 2009

I am almost 3 months out of chemo and also experience countless aches and pains.
Never thought I would be the fearful type but have to admit that recurrence crosses
my mind sometimes. The neuropathy in my feet wakes me up at night and keeps me
up. At the moment I feel like I take one step forward and one step back.. And I don't
say anything to my doctor he makes me feel like a hypochondriac. So i try to exercise,
eat well and rest up. See where this takes me.

Dear Heather I really feel for you, it must be so hard to have two kids depending on you.
I hope your tests will help you find the culprit and get some relief.

Tonight I am playing it safe and taking a sleeping pill, I was so cranky and could not
concentrate at work.

Sending you big hugs Heather, thank you for sharing, as you see you are not alone.

Ayse

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

I am 10 months post chemo (6 rounds of TAC) and have been on Arimidex since last July. I definitely feel the joint/bone pain. Some nights I have trouble sleeping as well. Like you, I did NOT feel this way before treatment--I felt great. So, when the drs. say--no, it can't be still from the chemo or meds, I don't feel it's true. For me, it would all be so much easier to take if they would just validate what I'm saying and acknowledge that, yes, maybe it is an outcome of your treatment. I don't know--seems like sometimes they feel like you're accusing them of something--when all you really want is to get to the bottom of it, find out why you're hurting, and try to do something about it.

Heather, I'm so sorry you're dealing with this. I hope your tests come back okay and that you're somehow able to lessen your discomfort. As you can tell by all the postings--you're not alone.

Hugs, Renee

survivorbc09
Posts: 4378
Joined: Jun 2009

I'm so sorry Heather that you have this pain. It looks like many share the same thing. I pray that your oncologist or some doctor can help ease it for you.

Hugs, Jan

mwallace1325's picture
mwallace1325
Posts: 806
Joined: Apr 2009

I'm sorry you're in pain and have to do this. I had horrible joint pain (and many other things) when I was on Femera. I lasted about 7 months on that and stopped taking it. When I my nurse practitioner saw my typed list of side effects, we agreed I'd try anastrozole. Still had joint pain, not as bad, but I got to the point where I could not walk from room to room without stopping to catch my breath. It was so bad I ended up in the onc's office having a CT scan (he thought pulmonary embolism - wrong) then the ER having EKG, chest xray and they found nothing. I believed quite strongly that it was the anastrozole, but my onc said it doesn't do that. Strangely enough though when I stopped taking it, the shortness of breath went away. I've decided not to try any more post chemo meds. I'm really scared to keep going and have the side effects become permanent. Again, my way may not be right for you, but I thought I'd share.

Hope you get it figured out so you can find a "new, pain free normal".

marge

renee1822
Posts: 33
Joined: Sep 2010

I can kinda relate, I'm 42 and have had rheumatoid/overlapping lupus since I was 26 and the pain you are describing does sound like rheaumatoid and there are medicines out there that do help alot. Hopefully, it may just be something viral. The weird thing is when I was doing chemo, my rheumatoid practically didn't exist as in no pain at all and now 4 months after chemo and 2 weeks past rads it is starting to return again so I will be seeing my rheumatologist this week to get back on my meds. I hope yours turns out to be nothing but I have found out that arthritis extra strength tylenol works pretty good.

hugs,
Darlene

new2me's picture
new2me
Posts: 176
Joined: Jun 2010

My pains were not as bad as yours (I feel for you) but mine hurt nonetheless. Mine started right after my last treatment - I would wake up from the pain in my fingers (hands) both were so swollen and hurt to so bad. I know for sure I had neurothapy on my fingers. It even hurt to hold hands with my husband. the pain went all the way to my elbow at times. I thought I had carpool tunnel and arthritis at the same time. Never had any problems in my feet though. As time went on the pain lessened. Now, the pain and stiffness is in my left thumb - it doesn't wake me up but it every now and then I will have sharp pains shoot up my thumb to my wrist. All I take is Naperson. When I saw the nurse Monday and my herceptin treatment she told me more than likly it's from the chemo - but she wouldn't say that definatley. but I'm hoping the pain will eventually ease.
I'm also stiff at times. If I sit too long watching TV - it takes a minute for the stiffness to ease when I get up. I'm only 51 - I was in excellant health before chemo and ran in 5K and exercised all the time. today I feel 10 years older. I get on the treatmill and powerwalk for an hour most days but I pay the price later - (stiffness and very tired)
I am so sorry Heatherbelle that you are hurting so much. I feel your pain girl

Kelly

cahjah75's picture
cahjah75
Posts: 2623
Joined: Jun 2010

I hear your pain. I suffer from pain every day too but I'm 62 and have had osteoarthritis for 10+ years. I recently had blood work to look for rheumatoid but it was negative. I hope you don't have it either or Lupus either. Are they also checking for Fibromyalgia? I don't think it's from your Tamoxifen but I'm no dr. Arimidex, which is what I'm on can cause bone pain. Neither of my sisters had any side effects from either drug. I hope you get positive feedback because living in pain is unacceptable! I'm sure your 2 year old doesn't understand why Mom can't pick her up. How sad.......
{{hugs}} Char

Hippiechick58's picture
Hippiechick58
Posts: 320
Joined: Feb 2011

So sorry, Heather, that you are living with constant pain. I have had similar joint pain from the Neulasta injections I would get after each chemo tx. I am now 1 month post-chemo and still feel pain in my joints. Some docs are so regimented that they refuse to acknowledge that our pain is real. This is reprehensible! WE are the ones going through the txs, not them. WE should know when our body hurts! I hope you get some relief in the near future. I will say a prayer for you and your little daughter!

"May you be at peace, May you be Free of Suffering,"
Dianne

Sher43009's picture
Sher43009
Posts: 601
Joined: Nov 2009

Hi Heather

I've been on Tamoxifen for 15 months and have joint pain. Getting out of bed in the morning is hard, hands are stiff and if I sit for too long my hips hurt. My nutritionalist recommended Caltrate with Vitamin D. It really helps. I can tell a huge difference if I forget a day. It calls for 2 tablets per day so I take one in the morning and one at night.

Hope this helps and you feel better soon.
Sher

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I am sorry Heather that you have all of this pain. I never took chemo, so, if I have any pain, I can't contribute it to that. I hope that you are pain free soon!

Hugs, Megan

Heatherbelle's picture
Heatherbelle
Posts: 1221
Joined: Jun 2010

Thank you all so much for sharing your experiences with me, or for just caring. This pain really intensified, so much so that I was in to see my oncologist on tuesday, and was calling them back yesterday. I was crying, I hurt all over. I called my oncologist to tell them that the pain was unbearable, and that the ibuprofen + tylenol combination he suggested was not controlling or even lessening the pain. When the nurse called me back, after talking to my oncologist, she said that he told her "I dont know what is causing the pain, I can't help you with it. You need to see a pain management specialist." The nurse said she could set up an appt for me & would call me back today. Well, this morning I got the call that they have an appt set up for me with this specialist-more than a MONTH away. So I'm supposed to suffer until then? I will NOT accept this. I've asked my dr twice about tamoxifen being the cause & was shot down right away - no, that doesn't cause this. Well, I'm 35, I was the youngest person in the infusion center, probably one of the youngest patients my doctor has had. Perhaps I'm just not tolerating this drug very well?
Yesterday I had my nipple reconstruction done. I had to take a sleeping pill last night because I haven't been able to sleep well at all, and with my breasts being sore & tender I knew I wouldn't sleep, so I took one of my sleeping pills. I fell asleep without taking my tamoxifen. And I woke up this morning feeling at LEAST a 50% improvement in my pain. I noticed it the moment I got out of bed. I don't think it's a coincidence. So, today I'm getting recommendations for another oncologist. Preferably a younger, female one. Definately a more open-minded one who will give me the respect and recognition that I deserve. I have specific questions regarding tamoxifen, it's side effects, what exactly are the odds that it's giving me regarding a reoccurence, will i have the same odds if I have my ovaries removed? I've already had my tubes tied -im not having any more kids, I'd rather just have them out anyway, my tumor was ER positive (VERY slightly, 1-4%). So I have quite a task ahead of me, thank you all again for your advice, and support, and your experiences. I will keep you updated on my progress :)
*hugs*
Heather

Pinkpower's picture
Pinkpower
Posts: 437
Joined: Jun 2010

Hi Heather

As you know I too have been suffering from joint/bone pain, wrist, hands, right hip,knees,ankles, neck & sholders. Not as bad as you, so sorry for you. But after reading everyones comments reg the joint/bone pains they are going thru, its seems like it doesnt mantter what post pill we are taking, Im on Femera, others on Tamoxifen & other meds, but we are all suffering the same. Renee is right behind me when she finished her last treatment, I am actually 1yr post chemo, 11 months post radiation and 7 months post Herceptin. I've had small pains here & there since chemo started, but the pain really increased a week ago, I thought my pain was from doing too much at home and volunteering at a soup kithchen for 4hours last wk, but after reading this Im thinking very different. it took me 5 days to recoup from last wk volunteer, but my wrist, hands, neck, and hip, ankle still hurt. What is going on? & why are our doctors not taking this serious?

Praying for all of us!

jnl's picture
jnl
Posts: 3873
Joined: May 2009

I wonder if tamox is doing this to you, since you already felt better by not taking it. Good luck Heather with a new oncologist.

Hugs, Leeza

NCaliNHLWarrior's picture
NCaliNHLWarrior
Posts: 8
Joined: May 2013

Heather-I just wanted you to know you are not alone! Im two mths out of Chemo and have been experiencing the same thing.Im 43 feeling 83.I just recently told my primary Im not going to debate this any longer.My body was completely devistated.As they all have no idea whats causeing this and look at me as if Im crazy.Im not crazy.Just worn out.There are just too many of us anyway.I keep reading the same thing over and over.Keep smileing! Sending Love n Light

jerseygirl231's picture
jerseygirl231
Posts: 166
Joined: Mar 2011

I have pain also very bad . I been told it not the chemo or meds of AI`s. I been to two pain management doc both were jokes. I have not in this much pain before the treatment i been through for this beast. I found that turmeric has help me a bit in dealing with the pain but i still feel it I wish I would have a pain free day. I hope you can an answer to your problem.

GwenJ0113
Posts: 1
Joined: Feb 2014

Heatherbelle, I totally feel your pain. And hope everything is much improved for you now.  I am 7 months outside of chemo (taxotere) and am having so much pain. On that pain scale, I am a 5 though I have a high tolerance for pain. This pain, which is so similar to yours, started about 3-4 months outside of chemo. I've been told carpal tunnel then later chemo-induced arthritis. And I have recently made an educated guess at DeQuervain's tenosynovitis (if the doctors can guess, so can I). I can't make a tight fist and my thumbs does not bend without help. Pain had been so intense at times, especially at night and when I get up in morning. I agree with you in that I am not going to just accept this is the new way it's going to be. I didn't have this problem before. I have gone through different treatments Rx and OTC which were either temporary fixes (as long as I was medicated) or I stopped taking because I feared the SE. I am now trying to wrap my hand and arm at night (learned from the lymphodema treatment) and splints in the day. Also using the exercise (stress) ball (actually the heart shaped stress ball works better) to keep my hand and fingers somewhat flexible. The pain has decrease but it's still too early to tell if this is a fix. Also, I am not on tamoxifen or any other after-chemo medication. Also note-this is my second battle with breast cancer and I did not react to AC like this, even though I was over 10 years younger then. 

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