6 months post chemo. and alot of pain
thanks!
*hugs*
Heather
Comments
-
I'm so sorry that you
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,
JoAnn0 -
Sounds like you're having a
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
jan0 -
Me too!phoenixrising said:Sounds like you're having a
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
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 MOLLYZ0 -
Heather
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
Annette0 -
I am so sorryAnnette 11 said:Heather
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
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,
Dawne0 -
I have joint and muscleTexasgirl10 said:I am so sorry
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
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.0 -
Heatherbelle,carkris said:I have joint and muscle
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.
I am 7 months
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.0 -
I can relate
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.
Ayse0 -
Hey Heather,carkris said:I have joint and muscle
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.
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,
Sylvia0 -
Hi Heatheraysemari said:I can relate
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
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, Renee0 -
I'm sorry you're in pain
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".
marge0 -
Sorry you feel bad
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,
Darlene0 -
I'm 6 months post chemo also
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
Kelly0 -
Oh Heather
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}} Char0 -
I'm so sorry Heather thataysemari said:I can relate
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
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, Jan0 -
So sorry, Heather, that youcahjah75 said:Oh Heather
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
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,"
Dianne0 -
Tamoxifen PainHippiechick58 said:So sorry, Heather, that you
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
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.
Sher0 -
im looking for a new oncologist i think..
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*
Heather0 -
Hi HeatherHeatherbelle said:im looking for a new oncologist i think..
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
As you know I too
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!0 -
I am sorry Heather that youHippiechick58 said:So sorry, Heather, that you
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
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, Megan0
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