After a lumpectomy, lymph nodes removal, chemo and three months following radiation, my dearest friend of over 40 yrs began experiencing increasing arm pain. From research and suggestions here for pain relief, I printed out info. which prompted a visit to her pcp. He immediately referred her to the oncology surgeon.
When asked for referrals to physical therapists, pain mgt. specialists and/or pain meds, the surgeon told her he didn’t “do” referrals and told her that pain was “something she would have to learn to live with”. I was beyond shocked and disturbed at this.
Following that visit, her arm & hand began swelling and a red horizontal swath from under arm above scar tissue and across to breast appeared. The 1st p.t. her pcp referred her to, ordered very tight compression sleeves for her arm & hand.
While the therapist’s very light, gentle massage was soothing, she was told to wear the sleeve except for bedtime sleep. The swelling increased to the point that another visit to the pcp last week, gave her, at last the diagnoses of Lymphedema and Cellulitis. She was put on Gabapentin, 100 mg, 3x/day for the pain and on antiobiotic, Clindamycin: 300 mg/3x/day for the cellulitis (infection from redness).
Researching Gabapentin alarmed me especially because it is listed primarily as a seizure med and my friend was on seizure meds for several yrs ago because of seizures. I also read that it has serious side effects and is not to be stopped suddenly. None of this was told my friend.
What are other patients taking that help for MBC pain? The pcp referred her to a second occp. therapist who is approved for her ins. He ordered a manually adjustable sleeve and told her about a pump sleeve which costs $3,000.
While I’ve read that there is no “cure” for the lymphodema, surely there may be some meds that can help? Both conditions, if not treated can become very dangerous, can spread and become even life threatening.
I do not want to become an alarmist for my friend without more information. Any recommendations or sharing of what may be helping others here, whether meds, p.t., sleeves or other specialists would be so appreciated.
I would like to encourage her go to a different MBC specialist, if her pcp would refer, and maybe one connected with our teaching hospital vs the one with our private, large hospital where she has received all treatment to date. Could she get to another specialist without doc referral???
Any suggestions, recommendations would be so gratefully appreciated.