I had mega doses of both Taxol (5 doses) & Carboplatin (6 doses). Because the Taxol was so damaging, it was stopped after 5 infusions.

It’s pretty clear the combo caused whatever is going on with my mobility & balance problems. The mobility deficits started about 6 months prior to the cancer dx so I asked my current neuro to test for paraneoplastic syndrome (autoimmune reaction to a cancer wherein your immune system attacks other {non-cancerous} organs) and which sometimes lasts beyond the removal of the tumor. It was negative.

I haven’t had the tests you mentioned. The main reason for a Mayo visit is to have a battery of tests which would be evaluated by a team working in conjunction with one another. Right now I have had scattershot tests, no one to coordinate them, no one who suggests what approach to take. Also, I’ve had such a variety of opinions: I have had the following dxs: PN, fibromyalgia, polymyalgia rheumatica, etc. MRIs, emgs ---inconclusive. To date no one has suggested IVIG or a duragesic patch or TENS. Maybe the team at Mayo will explore many more options than I’ve had so far.

Would you pm me with the names of the HSS neuro & pain person? Also, how have they helped you…ie, meds, p/t, etc.?

Daniella: I think you’re smart to re-submit your info to Mayo. All they can do is say “no.”
And at least you’d have given it another shot. Please let us know what response you get.