Managing drug-resistant pain of neuropathy from chemo

Joan of Ardmore · Guest

Dear Leo,
I had a lumpectomy last August, for a .8 cm tumor of IDC.My sentinal node, when biopsied, was hot, the next 9 were ok.
My pathology indicated a nasty, very aggressive tumor. I had to have a second surgery the next day, to widen the margins.I'm now 62, and had, previously been completely healthy save some hip& knee arthritis. I had taken HRT for 10 years.
My onc was most aggressive-he treated me with A/C plus Taxotere, 4 of each.He said better hit it hard the first time. Good!
It was a downhill procedure, by finish my blood was all "dead", red & white cells. I was getting Neulasta and Aranspe each chemo, for most of the Taxotere.
I had low platelets, constant nosebleeds, diarrhea,shortness of breath, along with constant URIs, and considerable bone and joint pain.
Early in Taxotere, I began to experience numbness in my fingertips. My nails grew black, and thick.With the numbness, my onc lowered my dose of Taxotere a tad, saying he still wanted it to be thereputic. The numbness went away, though.
Maybe I should add that at 5'5", I was considerably overweight, since I know drug doses are set by weight. I'm sure I had enough chemo to choke a horse!

So I finished chemo on March 11.

I had a bone scan, and suffered a colonoscopy before I was allowed to meet NED.

Rads began end of April (I begged for a treatment-free month, to recoup a bit)
Also in April I began taking 25 somethings of Aromasin daily. A teeny white pill.

So now, I'm a cripple.AND a mental cripple, as well.Memory-gone!
My knee and hip arthritis got MUUUUUUCH worse. I also now have ankle,wrist, shoulder pain, pain in joints of my fingers, pain in the joints of my FEET!
NSAIDs help a bit, but I have to rotate them.Cox2s the same-Bextra, Celebrex-they help for a day or 2, then change the drug again.And none of them makes me pain-free.
I've begun taking Claritin-it's been said it helps, for some reason.It does. But doesnt make the pain gone.
I also have the numbness in fingers back. Sounds crazy since my finger joints hurt, but my fingertips are numb!I drop stuff.
My onc gave me Tylenol3, w/codeine, for sleep. It does shut the pain down, but I'm wary of becoming desensitized to it, use it about one night out of 30, when I'm really exhausted.

My onc says he feels a lot of this is still from the taxotere. Some, like the memory loss, and finger arthritis, are obviously (to me) Aromasin side effects-lack of estrogen.
But none of it is helped by drugs, at least OTC drigs, which are the only kind I'll use constantly.
My onc says he hopes I can push through it, and I intend to. Don't WANT to take any more drugs!!

What do I want?Comments, please! From you, and any other docs familiar with Taxotere, and this post-chemo, drug-resistant pain.Does anyone know about holistic therapies? I've started Turmeric, also Cordyceps mushroom, for strength.These are both suggestions from Andrew Weil.
I appreciate any comments or suggestions VERY much!
Thanks, Joan

MuttsMom · Guest

Hi Joan,
Sorry you are having so many problems. I didn't take Taxotere, but I got a very aggressive regime of chemo also, since I was Stage III. I did have neurpathy pretty bad and the onco put me on Neurotin (RX). It did help and I still get it every now and then, 2 1/2 years later but very seldom and I've been off the Neurotin for about ayear.

I'm taking Arimidex and oh yea, the bone pain and joint pain, especially my fingers, heals/feet is horrible. I'm 45 now and it takes awhile to get out of bed and get moving because of the pain when I put pressure on my feet.

I hope this helped a little bit, if for no other reason then you aren't alone
Take care and best of luck
Nancy

Guest · Guest

Hi,

Is there any chance you could just take tamoxifen? That is why I am taking tamoxifen even though I am postmenopausal. It's great....only a few hot flashes. I have never had any joint or bone pain. Yes,some of your problems may be due to having had the taxotere, but I would guess some of it is probably due to the aromasin.

My QOL has been great with tamoxifen. I did do chemo, but not taxotere.

leo · Site Admin Joined: 23 Sep 2004 Posts: 1574

Joan

I am sorry to hear that you are having so many problems. Neuropathic pain is still something that is difficult to treat. It also seems that you have neuropathy, at least by what you are describing with the numbness. Unfortunately there is no magic bullet for this. There are some drugs that help for neuropathic pain such as gabapentin (Neurontin) and amitryptiline, but these are not 100% effective. Try to talk to your doctor, or even have him refer you to a pain specialist. I am sure they'd be able to help you !

regards,
Leo
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Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

BFagan2067 · Experienced user Joined: 07 Oct 2004 Posts: 54

Joan, I had serious nuropathy from my taxol.. and took large doses of nuerontin for a long time. Also saw so many doctors for nerve conductivity tests, neurologists, orthopedics etc, etc, I actually was at the stage that I could no longer walk for any long distance and getting up and down were very painful. I actually at one point had to get a handicapped placard. About two years ago I made the decision that I was to young to lose my mobility so much so I actually started to excercise. I did water aerobics, started walking and working out at the Y. It was very very slow and very very painful.. however I found that the more that I did the easier that it got and I actually have lost 60 lbs in the process and the best part was that I no longer have the pains in my feet, shoulders etc... I also had eventually been diagnosed with arthritis is the small bones of my feet and my shoulder and hips but I am so much better mobility wise.. dont know if I will ever fully get those brain cells back that go with the memory loss but the other pains are much better. This was not easy, but I was pretty determined when nothing else worked and I was so tired of it! Good luck to you!
HUGS!
Barbara

Guest

Hi Joan and others,
Thanks for this topic. We really don't have enough information about these post-chemo side effects. At least that's what I think is going on with me.

I had 4 dose-dense neoadjuvant treatments of CEF, followed by 12 weekly Taxol treatments ending the last of June 2004. Then, a mastectomy. Then 33 radiation treatments which just ended last week.

For the last 6 to 8 weeks I have been experiencing gradually worsening upper arm pain. At first, I noticed it when I reached behind to put on sleeves or pick up something or when I extended my arm to fold sheets, etc. Now I notice pain even when resting. Because of the pain I'm not using the arm as much as the other arm. By the way, this is the arm opposite my mastectomy.

My oncologist ordered both x-rays and a bone scan which came back okay. He is supposed to refer me to a shoulder doctor, but that has not happened yet. I guess I'm puzzled as to whether the pain is neurological, muscular or joint. I'm afraid I'm in for a whole bunch of tests.
Sheila

BFagan2067 · Experienced user Joined: 07 Oct 2004 Posts: 54

Hi Joan,
I had a similar pain that was but a mystery to me. A referral to an orthopedic doc came up with the diagnosis of rotator cuff. This was however in my arm with the lymphedema so I had to have physical therapy to work on it. After a few weeks of physical therapy the pain subsided and I was able to use the arm again normally. The pain started out sparadically then worsened to the point hat I could not lift my arm. I hope that you are able to find out what the cause of your pain is. keep up updated as to what docs and the cause of your pain... best of luck to you!
Hugs!
Barbara

annie · Guest

I'd like to ask if someone that definitely knows they have neuropathy from their treatments could describe the symptoms they're having as a result of this?
I had 4 AC and 4 Taxotere. I finished chemo 6/6/03. I had arthritis prior to chemo. I'm going to my doctor on 10/18. But would love to hear from others about what they're expierencing in regard to this...
Thanks in advance
God bless/Take care there
annie[color=red][/color][color=red][/color]

BFagan2067 · Experienced user Joined: 07 Oct 2004 Posts: 54

Annie, My nueropathy started with my taxol. It was initially a numbing of my fingers and toes...much like they were falling asleep, those pins and needles... eventually it was just in the very tips and then moved upward. It was difficult to hold things because my fingers seemed to be unable to hold them and I could not feel them. The numbness eventually disappated as time went on... many months after for me... but the numbness was replaced with a throbbing pain, much like if your fingers and toes were frozen from the cold that pain that you feel when you they start to warm up. I thought that the numbness was bad but this pain was worse. Eventually I could hardly walk due to the awful pain in my feet. I saw couple of nuerologists, orthepedic guys and even a podiatrist, who gave me a shot of cortisone in each foot.. which worked for a while but the pain was worse when that was wearing off. I also was taking arimidex which could have also added to this pain... as that bone pain is a side effect of arimidex. I was also diagnosed with arthritis in the small bones of my feet.. have no idea what may have caused this the nueropathy, the arimidex, chemopause, old age (I was only 47 at the time) or chrons disease which effects bones and joints as well... so that is what my experience with nueropathy has been... all gone now... good luck to you! Keep us posted as to what you find out.
HUGS!
Barbara

MuttsMom · Guest

Hi,
If the question was to me about taking Tamoxefin instead of Arimidex because of the side affects, then I'll answer...lol
I took tamoxifen for 6 months until it was determined that chemo put me into MENTALpause at 43. I was stage III and because of my stage and age, I was/am? high risk and all the studies have showed that Arimidex is superior to Tamoxifen. I had horrible hot flashes and night sweats with Tamoxifen and none with Arimidex. I had a bone scan done yesterday and everything is fine, thank God, which means all of the pain is from Arimidex. Í can deal with the pain alot easier then this beast coming back, that's for sure.
Nancy

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Hi Nancy,

So sorry you are having the bone/joint pain with the Arimidex.

I've been on the Tamoxifen for ten months and I've been very lucky as far as side effects go. My oncologist and I discussed the possibility of me going on Arimidex and he said he would write me a script for it if I really wanted. (because of the better track record against a recurrence) However, I do have arthritis in my fingers....some days I can hardly move them. So.......I decided to risk the recurrence rather than take a chance at the Arimidex exacerbating the arthritis. I guess with this lousy beast we all have to decide what is an acceptable QOL for us.

I wish you the best and hope your side effects abate soon!

Hugs,

Margie

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