I've just had my specialist appointment and thought I'd share what she said.
Effectively, she strongly recommends systemic treatment and an autologous stem cell transplant. She feels that the risks of a damaging bone lesion occurring aren't worth taking and would bring out the big guns right now. I'll go into what that means in Australia later in the post.
I went on a 20 hour round trip to see the professor. She's considered one of Australia's leading myeloma experts. I think that I'm going to ignore her recommendation. Is that irresponsible? I just don't see the risks in the same terms. Other than the lesion, I don't have any other symptoms that require treating. I understand that we never know where the next lesion will pop up. We don't even know for sure if another lesion will ever pop up. I don't see why we should start the resistance clock ticking when there's no demonstrated advantage to early treatment in the long run.
In Australia we have a truly exceptional public health service available to all at very minimal "user pays" cost. There would be zero cost to me for any treatment I undertake. The flip side of this is that the treatments are strictly prescribed by your stage of disease and how many previous treatment lines you have had. Unless a particular trial was available only through a specific hospital, my treatment at this stage would be identical throughout the country. To the best of my knowledge, there are no trials applicable to me at this point in time. So the treatments on offer are;
- Four cycles of CyBorD (cyclophosphamide, Velcade, and dexamethasone) followed by an autologous stem cell transplant
- Radiotherapy and then wait & see
- Well, because of my age and fitness levels, there is no real option 3. I wouldn't be opposed to the 4 cycles of CyBorD followed by stem cell harvest and then keeping the little blighters on ice until i need them, but that doesn't appear to be an option.
I do suffer from more frequent infections than I have in the past, but I think this is more about me needing to adjust my wound management to my new situation rather than the start of something truly sinister. My WBC is at 3 - slightly low, but not so low as to cause any concerns to the doctors.
I'm going to opt for radiotherapy followed by close monitoring at this point - but I'd love to hear any opinions, whether they're in agreement with my choice or not.
Also, does anybody here have any advice for how to raise my WBC count? I know that exercise is supposed to help, but it hasn't made any detectable difference for me so far. That said, I could probably do a bit more than I am at the moment.
