Hi nannabarb,
yes I am on tamoxifen but only started taking it about a month ago. I will have to keep my fingers crossed. I agree that it is good to see the ’ head honcho’ every now and then, you do get decent answers to your questions and that builds up your confidence in the treatment being given.
Have you had really cold feet and hands too? Mine go numb at night they get so cold, and I had hoped that it would have go away by now.
This is a really interesting thread: I repeat my previously stated opinion that this hair problem is very under- reported and is much more common than the oncologists are prepared to admit.
My own onc told me it was “very rare” when I know for a fact that he’ himself has seen at least 2 other people in the last year or so, with a worse problem than me- who I know about through these forums!
I am sure that Taxotere is the main culprit - and that the aromatose inhibitors exacerbate the problem, rather than cause it.
It is dificult to say what would have been my reaction if I had been told before chemo that my hair might not re-grow. I don’t think any of us would have refused treatment because of it; at that stage I guess it wouldn’t have seemed such a major problem - we had other things to concern us that were more pressing; but now…I just wished I had been warned & encouraged to try the cold cap. We were warned about so many other side effects - but were always told that our hair loss would only be temprorary!
I agree Topsymo, I wonder if there’s anyway we can make our voices heard outside of this forum, as you say, there seem to be a lot more of us than they are admitting to…
Maybe THE MODERATORS have some suggestions…
Hi ladies - one thing that worked for me and still is - hair extensions just at the front so I had a full fringe. My hair at the front of my head came back very short & curly and the crown is very fine & sparse and rest of it is very soft. My hair dresser put about a dozen extensions at the front and it looked fine. Nobody knew I’d had the extension - you can’t see them. Might be worth a try.