Arm and leg pain after chemo is over

ohMary

Hello ! I finished chemo (dose dense AC then Taxol) about five weeks ago, and I am still have severe pain in my arms and legs. This pain started at the end of my treatment. Strangely, it is my upper arms and legs that hurt, not my hands and feet. The pain is in my bones and joints, but also in my muscles. It is a constant (not throbbing or shooting) kind of pain. My left arm hurts the most, though my breast cancer was on the right. I am taking Motrin and Vicodin and Neurontin. They help some, but not enough.

My question is: when will the pain stop? why does it seem to be getting worse now, even though I'm through with chemo? Also, I start radiation tomorrow morning. Will the radiation make this pain worse?
_________________
Mary, age 43 at diagnosis - Jan 05
Invasive ductal carcinoma Stage II
1.3cm tumor; lumpectomy Feb 05
pos nodes (2 of 13) er+ pr+ Her2-
AC + Taxol (completed June 05)
33 Rads (completed Sept 05)
No hormonal therapy (ever)

RachelEsther

Dear Mary,

I don't have any idea what to say about the pain in your arms and legs. Some of it may be a holdover from the Taxol, which does affect the muscles. Possibly you have nerve damage from Taxol which is doing that. But I would ask your onc, and if he doesn't have an answer, I'd check further, go to different doctors. Usually taxol issues of neutropenia are on hands and feet, not upper extremities. And although the neupogen/neulasta, which I assume you got, gives bone pain, it should be long gone by now, I think. Sometimes, we just get sick and it is not related to our cancer or to chemo, so keep that in mind in looking for an answer.

As to radiation, I don't think it should make the pain worse, or have any affect on it, since they are only irradiating a limited area around your breast. But since you really don't know what is causing it, I would certainly talk to your radiation onc about it. If you are not scheduled to see the RO tomorrow, be sure to tell the radiation therapist and get an appt as soon as possible to discuss it. You need to feel like you are not putting yourself in further danger.

Rachel
_________________
Rachel
Age 50 at diagnosis, Stage IIIA
IDC grade 1, DCIS grade 2
LB Mastectomy, Expander Recon 3/3/2004
Dose Dense Chemo completed 07/01/04
Radiation completed 09/02/04
Silicone Implant 11/22/04, removed 7/05 due to infection (dental cleaning), replaced 12/05. Reduction RB for symmetry 04/06
Tamoxifen 10/04-10/06, Arimidex 10/06 on

Muttsmom

I agree with Rachel. I didn't have Taxol, but did have neuropathy from chemo, but what you're describing doesn't sound like the norm. I'm by no means saying it's anything bad, but something you need to make an appt. for and have either the rads onco or the med onco check it out. There's no point of you being in pain and you need to find out the cause and then the onco can go from there.

Best wishes
Nancy
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

LindaTN · Regular Joined: 23 Apr 2005 Posts: 42

If you are on tamoxifen or one of the drugs in that class it maybe caused by the drugs. I have had much pain since starting tamoxifen in late 2002. Just a thought, also if you are really nervous sometimes that will cause muscle pain everywhere a drug lilke xanax might help. Linda

ohMary

Thanks for the replies. I finally saw the onk, and everyone seems to agree that this is Taxol pain even though it has been more than seven weeks since my last infusion. I'm also having some vision problems that come and go, and they think this also indicates that I'm still reacting to chemo. And personally, I can't imagine that the radiation is helping, either (today is rad 13 of 33) .

I am distressed to learn that Arimidex (which they're putting me on next) makes your joints ache too. Am I going to feel like this for five years? I feel like an old lady shuffling around in my bedroom slippers with achy knees and elbows...!
_________________
Mary, age 43 at diagnosis - Jan 05
Invasive ductal carcinoma Stage II
1.3cm tumor; lumpectomy Feb 05
pos nodes (2 of 13) er+ pr+ Her2-
AC + Taxol (completed June 05)
33 Rads (completed Sept 05)
No hormonal therapy (ever)

Muttsmom

Hi Mary,
I was 43 when dx, so we're around the same age. I started on Tamoxifen because the onco thought I would start having periods again. After a year had passed since my last one and the studies were showing Arimidex to be superior to Tamoxifen, I switched. Arimidex can cause some pretty bad bone and joint pain. Mostly your feet/ankles and hands/fingers. My onco put me on Actonel which is given for osteoporosis since Arimidex also can weaken the bones. Since the 2nd week (take once a week) of me taking Actonel, 95% of the bone and joint pain was gone. I had to have surgery on one of my thumbs because of a "trigger finger" that locked up and I couldn't straighten out. I had 3 other ones. The 3 other ones completely took care of themselves once I started taking Actonel.
I'd also get your cholesterol checked after you've been on Arimidex for awhile. It can cause the cholesterol, especially the tryglicerides to be high. Normal is under 150 and mine bounce back and forth between 450-650. Neither zocor or lipitor brought it down, plus the side affects for me of those I hated. I started taking Omega 3, fish oil, and I'll go in next week and get rechecked. Hopefully the Omega 3 will help to bring it down. I know what you mean about feeling like an old lady, but the Actonel hopefully will help you like it has me. Anything is better then cancer. Fosamax didn't help with the bone/joint pain and my stomach couldn't handle it, then I was switched to Actonel and what a blessing!!!!!!
Hope this info helps. Oh, also, I noticed even with Actonel, the more I go barefoot, that's when I start having some of the pain in my feet/ankles. If I wear tennis shoes most of the time, I guess it's the support, but I don't have any problems.
Nancy
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

connie jett · New User Joined: 03 Sep 2005 Posts: 2

this is to oh - mary --I am having the same problems. The pain didn't start until after chemo was over. I have not been able to find out anything from my doctors. pain is mostly in my muscle area above my elbows (thick part of my arms) mostly in the muscle. I also have neuropathy in my feet/hands from the Taxol.
_________________
Connie

carole · New User Joined: 04 Sep 2005 Posts: 2

Hi Mary: Just saw your message and the replies--I finished 4 ac/4 taxol--dose dense end of October--no radiation; left side mastecomy. Two nights ago I woke up with extreme bone pain, almost burning, mostly in my arms and legs. Today, my forearms are slightly sore. Also, when I woke up I was freezing--couldn't get warm for several hours. I am on tamoxifin--don't see anything about this being a less common side effect. Does anyone have any sites they can refer me to? I'll be calling my oncologist after this weekend holiday--but am suspecting it's nothing (I pray) I read something about the burning can be the hormone deprived cells in the bones being destroyed, but am hoping/thinking/praying that after all my chemo and on tamoxifin--I shouldn't have any more cancer cells left in my body. Does anyone else have any similiar circumstances. Thanks.

Carole, age 45 at diagnosis - Apr 04
Invasive ductal carcinoma Stage II a
1.6cm tumor; mastecomy May 04
T1N2M0//er+ pr+ Her2-
4AC + 4Taxol dose dense (completed Oct04)
33 Rads plus boost (to be completed Sept 05)
_________________
In Christ, Carole

ohMary

Dear Carole and Connie (and others)
So good to hear from you. Thanks for writing. It helps to know I'm not alone.

Here it is, now nearly ten weeks since finishing chemo and I am still in the same kind of pain with no good solution. So sorry to hear that you are too!

Like you, Carole, the terrible pain in my bones and muscles in my arms and legs can wake me up, and then I am often freezing cold in my limbs and can't get warm--strange because I also have vicious hot-flashes all the time. I have steady pain in my limbs and back all the time, but sometimes it shoots down my arms, or into my knees. When it does, it hurts enough to make me cry out.

Pain meds are all I can do. I was on huge doses of Neurontin too, but I finally had to stop because it was giving me migraines. I don't think it helped too much anyway.

Exercise doesn't take it away at all, though I find that it hurts less while i am exercising, so that is a small help.

I have decided that I won't take Arimidex or Tamoxifen since bone pain is a major "side effect" I'd rather risk less treatment and feel like a woman who is in her forties instead of taking all the drugs and feeling like I'm 90. Shuffle shuffle.
_________________
Mary, age 43 at diagnosis - Jan 05
Invasive ductal carcinoma Stage II
1.3cm tumor; lumpectomy Feb 05
pos nodes (2 of 13) er+ pr+ Her2-
AC + Taxol (completed June 05)
33 Rads (completed Sept 05)
No hormonal therapy (ever)

carole · New User Joined: 04 Sep 2005 Posts: 2

Mary; hi thanks for the reply--I HAVE NOT found anything anywhere that says taking tamoxifin causes bone pain--where did you see this? I was pre-menopausal before chemo--now in chemically induced menopause; my hot flashes were really minimal, and I have been doing great on the tamoxifin until the other night. I also exercise several times a week. I've changed jobs, and probably under a lot more stress right now. Have you seen anything about stress making these symptoms worse? I'd love to hear from you at my email address if you'd care to correspond outside of this forum as well.

Good luck.
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In Christ, Carole

Aisha · New User Joined: 12 Sep 2005 Posts: 3 Location: New York

Hi everyone,

I just logged into this site to get answers to my pains as it seems to get worst each day. What a surprise!! I thought that after Chemo it would be a simple ride home, at least that's what I was told. Like all of you the pain didn't start until after chemo was over and I thought it was the radiation but the doctor told me it wasn't from "us". The pain started in my muscle area above my elbows then spread to both my arms, then the leg and now it has spread to the ankle and even under my feet making walking a real ordeal at times.... I truly feel like an old woman and all my doctor recommended was that I take tylenol, advil or motrin but they don't help much. Has anyone found an answer this? or a real medecine to get me back on my feet without worrying that I can make the distance? When will this stop? Help!!
_________________
Aisha, age 43 at diagnosis - Feb 05
Invasive ductal carcinoma Stage II
1.4cm tumor; lumpectomy Mar 05
pos nodes (1 of 12)
6 Chemo with Taxotere dose (completed July 05)
10 Rads out of 37 (to be completed Oct 05)

Aisha · New User Joined: 12 Sep 2005 Posts: 3 Location: New York

[quote="Aisha"]Hi everyone,

I just logged into this site to get answers to my pains as it seems to get worst each day. What a surprise!! I thought that after Chemo it would be a simple ride home, at least that's what I was told. Like all of you the pain didn't start until after chemo was over and I thought it was the radiation but the doctor told me it wasn't from "us". The pain started in my muscle area above my elbows then spread to both my arms, then the leg and now it has spread to the ankle and even under my feet making walking a real ordeal at times.... I truly feel like an old woman and all my doctor recommended was that I take tylenol, advil or motrin but they don't help much. Has anyone found an answer this? or a real medecine to get me back on my feet without worrying that I can make the distance? When will this stop? Help!![/quote]
_________________
Aisha, age 43 at diagnosis - Feb 05
Invasive ductal carcinoma Stage II
1.4cm tumor; lumpectomy Mar 05
pos nodes (1 of 12)
6 Chemo with Taxotere dose (completed July 05)
10 Rads out of 37 (to be completed Oct 05)

ohMary

Aisha--
we're about the same age and almost identical breast cancer--I'm just one month ahead of you.

The arm, leg and joint got worse with every radiation treatment. I finally couldn't take anymore--I couldn't walk or even pick anything up--so I bailed on my last six radiation treatments. Every day that I am out of treatment (about ten days now) I am a little bit better. It still hurts and I'm still shuffling around in my slippers, but it isn't quite as bad. I do notice that it is much worse when I am fatigued.

Motrin and drugs like that do NOTHING for the pain. The only thing that works for me is Neurontin + Vicodin, but I'm reluctant to be on such heavy drugs every day as I have been for months now.

Because of this pain (and because I have a history of depression) I am refusing Arimidex too. I want my forties back and am sick of feeling ninety.
_________________
Mary, age 43 at diagnosis - Jan 05
Invasive ductal carcinoma Stage II
1.3cm tumor; lumpectomy Feb 05
pos nodes (2 of 13) er+ pr+ Her2-
AC + Taxol (completed June 05)
33 Rads (completed Sept 05)
No hormonal therapy (ever)

Aisha · New User Joined: 12 Sep 2005 Posts: 3 Location: New York

Thank you Mary, now I can at least expect the pain to decrease after the radiation is over. It is most difficult because the doctors don't want to acknowledge the side effects but instead insist that they've never heard of such description during cancer treatment, so I am happy to have joined the forum and to know that I don't have another form of sickness working through my nerves. Thank you so much for your reply and sorry for your pain... I feel you.

Aisha
_________________
Aisha, age 43 at diagnosis - Feb 05
Invasive ductal carcinoma Stage II
1.4cm tumor; lumpectomy Mar 05
pos nodes (1 of 12)
6 Chemo with Taxotere dose (completed July 05)
10 Rads out of 37 (to be completed Oct 05)

connie jett · New User Joined: 03 Sep 2005 Posts: 2

I have not checked this out since Sept. so surprised to see so much response. I am still dealing with the arm/leg pain. They have decided I have LYmphodema in my upper arms. I had a full left mascectemy in May 2004 then chemo - 4 A/C and 4 Taxol. finished chemo in Nov. had TFlap Full breast reconstruction in Dec. 2004. Had major problems with the surgery--my bottom incision split open after I was home about 10 days. Had to pack the opening (which was big enough to put a coke can in) with bleach solution until it healed about 3 months later. Not a good year. Then the arm pain started in March.
I am still dealing with the pain . I have been on Neurontin for the neuropathy in my feet/hands. Stopped all meds this past summer - tired of all the weight gain -. can't seem to get it off. Getting ready to check out Acupuncture. Have heard good results with it. I too thought when the chemo was over,, I was ready for the normal life again. This is far from normal. Feeling like I am 95 - when I am 45. I feel like my family looks at me like ==get it together already... Wish I could.
Connie
5 cmm on left side
May 2004 removed left breast
June-Nov. 2004 4 A/C and 4 Taxol
Dec. 2005- TFlap -- for both side-removed right breast
_________________
Connie

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