Erica35

Hello all.  I truly appreciate those of you who contribute often to the forum.  I have been trying to get back to normal or rather accept my new normal.  Not being very successful and mostly due to the unremitting pain of my RIBP.  I don't know how to move on.  I had a very rough time with moodiness on lupron which required effexor to cope and once I had my oopherectomy and could come off the lupron  I wanted off of all chemicals.  I am still taking tamoxifen.  I know that the constant pain is really making it difficult to function, but I don't want to take anything that messes with my head.  I also am an intermediate metabolizer of tamoxifen so I can't take anything that inhibits the cyp2d6 pathway which is most of the antidepressants that work for pain (lyrica, cymbalta, etc).  I have very mild lymphadema so don't wear garments.  Does anyone have advice for non-pharmacologic pain control?  Have you used acupuncture?  Do you worry about lymphedema with it? Does weight loss or weight lifting make it better?  Right now I can't type with my right hand.  I can't open jars or turn keys and have trouble with buttons.  I don't mind the weakness as much as I do the numbness and burning pain.  Anyone able to summarize for me what they have done for the RIBP that has worked?  I'm glad that you are sharing the lymphadema tricks too but bigger issue for me is the RIBP pain.  Thank you all for sharing your success at living with this.  Erica

Cross posting this from my response to same topic under young women with breast cancer....

I haven't been on these boards for a long time and didn't realize that my initial post actually got responses. I'm sad to hear that there are more of us out here with this complication but glad to have informed women at my side. It took about 6 months since my initial symptoms for my medical team to agree that I have radiation induced brachial plexopathy as opposed to brachial sheath mets. I did do a 3 month trial of vitamin E and trental but it didn't really do much. I certainly didn't see improvement. The motor problems didn't get worse but my sensory problems are more severe. There's no way to say whether it prevented further movement to paralysis. The studies I've seen seem to suggest that if it will progress to total paralysis it does so within the first 6 months of symptoms. I seem to have stalled...my MRI results show no improvement but no worsening either. My motor weakness is the same in my hand. The pain (burning) and numbness drive me to distraction. I do not use lyrica because I am an intermediate metabolizer of tamoxifen and don't want to risk that lyrica would inhibit my tamoxifen benefit. The hand symptoms have really made it difficult for me to work and sleep. I have mild lymphedema in my affected hand that started about 2-3 months after the symptoms of the brachial plexopathy. I haven't sought treatment for that yet as I have been overwhelmed with other cancer issues. Hearing the comments above about how they interact I think I need to get myself to a lymphedema specialist as well. I haven't had the energy for more doctors visits but obviously I need to get cracking. I have a follow-up with my rad onc next week and I'll let you know if any more suggestions. Hope you are all doing ok. By the way, I use a speech recognition software for typing as I also can't type anymore with my right hand. It is slow and frustrating but gets easier with time.

Best, Erica

Looks like I'm special as I'm one of the <2% of patients who get this complication. Really tired of being special...

I don't want to scare anyone off of radiation....it's an important part of breast cancer treatment. There are risk factors for my complication such as supraclavicular and axillary radiation, high rads dose, young age, and concurrent chemo. If you have had paresthesias (burning, tingling, etc), numbness, swelling, or weakness in your radiated side could you respond to this? Since it is so rare, there is not much literature for me to go on about my prognosis. Looking for someone else with experience. I think it might be related to my having avastin after radiation.

Any of you other gals in the avastin treatment after radiation have any problems with arm pain, hand paresthesias, hand or arm weakness?

I'm really struggling through this freaking marathon, after having surgery, 4 months dd chemo, more surgery, radiation, 5 months avastin/xeloda continously since July 2006 I am now facing multiple complications. First I had a lung injury from the interaction of avastin with radiation which left me breathless and unable to exercise for a few months (started beginning of October, now resolved). Then I had this arm problem which started the end of October with burning in my hand and has now progressed so that I can't button things or open jars or cans or do anything that requires fine motor skills. Also my fingers are numb along with the constant burning and I have arm pain that feels like a vice. Apparently, there is no treatment for radiation-induced brachial plexopathy so this is a new disability that I will have to deal with for the rest of my life. Searching for the energy to meet this new challenge....

Best, Erica