Thigh pain after chemo?

crisw

I finished 6 rounds of carboplatin, docetaxel and Herceptin 7 weeks ago. I had minor neuropathy during treatment. 3 weeks ago, I had a lumpectomy and breast reduction. About a week after surgery, I started having dull, aching pain in the back of both lower thighs after sitting for any length of time. In addition, my feet may start tingling and going numb. The pain disappears almost instantly if I stand up. It makes driving a car extremely uncomfortable!

I saw my regular doctor, who did spinal X-rays and found nothing; she is stumped and just referred me to physical therapy. The surgeon is also stumped and doubts this has anything to do with surgery. I emailed my oncologist (whom I don't see for another week and a half) and he responded that he thinks it's probably a manifestation of neuropathy, but I haven't been able to find any similar cases. Everyone feels it's unlikely to be sciatica or DVT because the pain is equal in both legs.

Anyone ever experienced anything like this?

Moderators

Hi Crisw, welcome to Breastcancer.org! Sorry nobody responded to your post. Hopefully bumping your thread back to the top will get the attention of those who can help. In the meantime, you can read more comments related to neuropathy in the Topic: Vent about Permanent Neuropathy, and post also there if you want.

Also, great information on Managing neuropathy in the main Breastcancer.org site.

Hope this helps! Let us know how your doing.

The Mods

TallnTerrific

Chrisw,

I saw your post and I had just posted on the "anastrozole/arimidex before during an after" the post below. Perhaps this is similar to your pain. Maybe it is related to the arimidex and not the chemo. If you want to join us on the other board maybe we can figure it out together.

I am new to this board, but I have had a couple of strange reactions related to taking and getting off anastrzole and I wondered if others have had this combination of reactions. When I first started taking it I soon felt a burning in my hips, butt and thighs all of the time. I have compared the sensation to being at the end of hard exercise and feeling that burn in your muscles that seems to stop your ability to perform. The burn is especially troublesome at night when I am trying to roll over in bed as the pain is very strong, wakes me up and I feel almost too weak to roll over. I also can't count on my legs to work well if I try to run, like to cross a street before a car arrives. At the end of a long day or first thing in the morning I have pAin so bad at times that I must hold onto something to walk.

After 4 months of this and other side effects, my MO took me off the anastrzole. I am now a month off and the burning pain continues. however for the last two weeks I have also had unexplained breakout of hives every night from my breasts down to my inner thighs and under my arms but only on the front of my abdomen. I can control the hives with Benadryl but they come back every evening.

I started with research to discover what causes the burn during exercise to learn more. Some articles indicated the burn was caused by Heat Shock (stress) Proteins (HSP) that are released to help the muscles avoid damage when they were oxygen deprived. I then sought to find a connection between these HSPs and cancer. Voila, I found in people on AIs for breast cancer that the elimination of the estrogen in the cells could act as a stressor that also caused the release of HSPs to avoid cell damage. Consequently in some people the HSPs counteracted the AIs and continued to allow for the fast growing cancer cells. Oddly enough this could result in an inflammatory response that caused the release of histamines. And what do excess histamines cause? Yes they can show up on your body as hives.

No article I have seen has drawn this connection, so I am wondering if anyone else has had a combination of the burning/weakness in their muscles and hives while on or off of any AI medication. Any help would be so appreciated.

crisw

Thanks. I haven't started aromatase inhibitors yet (they're waiting until I'm done w/radiation.)

PT thinks it's possibly piriformis muscle spasms that might be cased by minor balance issues from the neuropathy. They prescribed some exercises, which have helped some- the pain is less but still present if I sit/drive for a while.

Amie0215

crisw, I had severe bone and joint pain during and after chemo. I started doing a lot of stretching and beginners yoga after the chemo and surgery. The pain has gotten much better. I hate yoga, but it seems to be working. I lost all my muscle tone during chemo and it is taking forever feel some sense of normal again.

crisw

An update- three months later and it's still a mystery. I still can't sit for more than a short time without discomfort.

Physical therapy was of limited help and stopped after three visits when they said they couldn't do anything else. After two months with no improvement, I went back to my doctor and she referred me to a neurologist. He was terrible- declared it to be piriformis syndrome with only a few reflex tests, offered me no advice as to treatment other than "lose weight and keep doing your exercises."

I'm seeing a different physical therapist tomorrow; one with an excellent reputation. I'll also ask my oncologist for a referral to a neurologist experienced with post-chemo issues if things don't get better soon.

And, by the way, I'm exercising my butt off to try and stay ahead of the AI pain now that I've started Aromasin- working up to 10,000 steps a day (I'm at 8.500,) yoga weekly, strength training 4 times a week, riding my bike to work, starting aquatic fitness next week- none of this has made a difference to this pain.

I am wondering if this is all caused by some kind of body imbalance after the breast reduction- after all, they removed several pounds of tissue! I am hoping a decent PT can get to the root of this...

TallnTerrific

crisw

How are you doing now? A year later and my pain has been supposedly connected to my bad back by my neurologist. He referred me to a pain doctor and I have tried two types of steroid injections with only temporary relief. I lost 30 lbs and did extensive PT last winter. Like you my experience was good with the PT but it did not help once the PT stopped. Even religiously performing the exercises did not help. My pain continued to progress. I will not go on pain meds as that just seems like giving up, but the balance issues, sleep problems and pain while standing, sitting, walking, and sleeping continues. It seems like my muscles are just very weak and unable to turn my body over without pain.

My pain doctor wants to try me out on a spinal stimulator. Is this all relates to my bad back, or has something else happened related to the letrozole. Who knows

crisw

I still have pain in my left thigh, although quite a bit less than a year ago. The right thigh is pretty much back to normal.

I saw a neurologist who wasn't able to figure out what the issue was after several visits, other than it wasn't sciatica.

I did several months of PT, which helped somewhat.

I lost about 50 lbs.and have been much more active. I was on exemestane for about 3 months, then switched to tamoxifen because the side effects were unbearable.

Onc still isn't sure what this is but believes it will go away with time. We'll see.

TallnTerrific

I hope he is right. Good luck

TallnTerrific

I hope he is right. Good luck