Thursday, September 3, 2009

Hair issues

Today on the TNBC boards, a woman posted that although she finished her chemo 2 months ago, all her eyelashes and eyebrows suddenly fell out really upsetting her. She had asked her onc specifically if she were done with hair loss and was told she would be. Been there! One poster said she went through the eyelash/eyebrow loss cycle 5 times now. Another took all kinds of supplements to make them come back, which they did. Mine came back with no supplements surprisingly enough. They fell out over a 2 week period at the end of April after being full all through chemo, which ended 3-10. By mid-May, they were almost completely back but this August, most of them fell out again only in a staggered fashion so I wasn't ever completely lashless and eyebrowless. As of now, I have skimpy eyebrows, all of my lower lashes and the uppers are at half-length. I hope this is the end of it. I am amazed that the poisons have such long term effects and should count my blessings that I haven't been affected more as many of my breast cancer sisters have been. Still have some residual digestive issues though.

A neighbor suddenly pulled into my driveway yesterday as I was watering my rock garden. I'm so sorry-I just heard you have breast cancer and I didn't help you at all!!! Well I was diagnosed almost a year ago but I am almost all better except for the hair, but thank-you for wanting to help. She did say that she really liked my hair.

I was going through my old papers yesterday throwing out what needed to be tossed and I came upon the Zometa study protocol consent form, which I decided to have nothing to do with. Zometa might be useful in preventing bone mets but I would need monthly infusions for THREE years. What got me though is that they have 2 different experimental assays to determine your risk for developing bone mets (n-telopeptide and parathyroid hormone related protein) which they would perform on you BUT THEY WOULD NOT TELL YOU OR YOUR DOCTOR THE RESULTS!!! Their excuse is that these assays are experimental and thus not accurate but I don't buy that one bit. They could easily give you the results with those warnings in hand though maybe if they told you that you were low risk, you'd bolt from the study.Sadly although some people with TNBC do get bone mets, they are more likely to get soft tissue mets instead-lung, liver , and brain more or less in that order. I was told that Zometa MIGHT prevent those too but that sounded really shaky to me. And the drug has side effects such as jaw bone necrosis. I know that no drug gets approved without clinical trials but there has to be more benefit to the patient.
I hate the fact that they have my tumor performing all sorts of assays on it and not sharing with me the results, some of which could possibly be helpful to me.

I did agree to the chemobrain study only if I get the results. They were actually taken back by my request. They were asking that I be in a that claustrophobic, thumping tube (fMRI) for 3 hours total (over 3 sessions) just to be nice. But they did (after some phone calls) agree to my request but since it isn't in writing, we'll see. They tested my functioning before chemo, right after chemo and will a year later to see if my functions have returned.

Went out with a good friend for Happy Hour last night. We sat outside. It actually was chilly! Where has summer gone?


Sara Williams said...

I am in total agreement with you Sue, why should they use our lumps and not share the results. At the end of the day, my tumour was my tumour. Glad you are on the up and up xxx

Sara Williams said...

Thanks for visiting my shoot out.They made a mistake with the spelling on the menu, should have been Pavola which is a meringue base filled with cream and topped with strawberries - very nice. I prefer an Eton Mess which is a variation but its all mixed up and the meringue is crumbled into small peices x

Alli said...

I totally agree, to use our parts but not give you any information later....Hmmmm I don't think that works for me. The results could benefit some one else or ourselves and we would not have the answers.

Sue did we really have a summer this year? Sept. 5th today...


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