Fibrosis Issues

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Fibrosis Issues

Postby Gmwmson » Sat Apr 21, 2012 12:39 pm

Hi. I am new to the forum. My husband, George (61), has been fighting advanced prostate cancer for 11 years. After several rounds of radiation and a year of chemo, he has developed what apparently started as "Radiation Recall" and then developed into "Lymphodema" and then morphed into I guess a 3rd stage of fibrosis... on his upper left thigh and buttock area. He now has 2 areas that are hard as rocks, fairly good-sized, inside his leg. Thankfully we were able to get the swelling down through massage, wrapping, and compression stockings, but the hard fibrosis remains. He is in SO much pain. It hurts to sit- to stand- to walk. There are days when all he can do is sit and quietly weep the pain is so intense.
Doctors seem to have no answers for us- there seems to be no real help for this. It appeared it was misdiagnosed initially so therefore mistreated, and that could have made a difference in the outcome. Who knows. It's all so frustrating.
He has been hospitalized for pain management and even when drugged out of his head, the pain was still there. Nothing seems to cut it.
He started getting spinal nerve blocks and that has been his best relief so far. He just received one on Wednesday 4/18 (this is Saturday 4/21), however, and we are still waiting for it to take effect. The nerves seem to be more aggravated and pressed-on, and he is wondering if it could be getting bigger. Oh, I hope not.
Has anyone dealt with this particular situation?? I google and google, and the doctors all say they've "never seen anything like it".... I cannot begin to describe the frustration and anger we feel.
Cancer-wise, he is doing OK, it's these darn side effects that are making his life unbearable!!!!
He is massaging the areas daily with Vitamin E- and applying a compounded pain cream.
I read about a study using Trental (pentoxifylline) + 1000 EU Vitamin E/day and one of his doctors was willing to prescribe it. So he's taking that.
He's up to 1800 mg of Neurontin/day and still no real relief without the nerve block. Morphine...
The area in his left buttock has caused the skin to sort of tighten and gather and the affected area has darkened a good bit- almost like a purplish color. He is pretty skinny and there's not much padding back there at all, so it's extremely painful.
Any feedback at all would be much appreciated. We are at such a loss as to how to help him or what to do.
Thank you.
Sad in Cincinnati. :(
Gmwmson
 
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Re: Fibrosis Issues

Postby patoco » Sun Apr 22, 2012 7:08 am

Hey "sad"

Really sorry to hear about your husband - I can imagine the nightmare.

My cancer wasn't nearly as bad as the complication it and chemo caused.

Was your husband seen by a certified lymphedema therapist? Usually if the swelling is taken down by massage, the pain isn't so great. Also, if there are specific areas that have extreme fibrosis, the therapist should give special attention to those areas, treating them a bit more.

There seems to be so much pain associated with leg lymphedema too as the sciatic nerve runs from the hip straight down the back of the leg and gets literally "compacted" (pressed) by the fibrotic tissue.

The change in color to a purplish is most likely due to a change in the blood flow. The hard fibrotic tissue can affect that as well. Just curious, have they ruled out any possibility of a blood clot too? They need to keep check on that as it is a possibility too with extreme fibrosis.

Get to a therapist, have them specially treat the fibrotic areas and see if you can have some custom (made specifically for him) compression stockings made.

I'll see if I can get a therapist to put a note in here as well.

My very best to you both :!:

Pat
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