This past weekend in Atlanta was quite eventful for CML awareness and support - thought it might be helpful to provide a quick summary for the group.
Novartis and the National CML Society (a recognized referral organization for the LLS) provided a "Living Well with CML" awareness summit on Saturday that was very well attended. There must've been at least 30 attendees ... between patients, carers, experts from Moffitt Cancer Center (in Tampa, FL), and representatives from both organizations, it was a really helpful way to spend part of a Saturday to get important questions on the table for the expert panel. I was so inspired after meeting other CMLers and seeing how well everyone was doing. So much hope for all of us!
And on Sunday afternoon, a smaller group of other CMLers and their spouses & families got together to catch up, share stories, and compare the ups & downs of each of our journeys. It was so great to meet everyone -- I think the Panera Bread had had enough of us after 3 hours! Among us were some who are still in their first year of treatment, some who have been on treatment for several years+, and we also had an 18 year CML survivor and his family attend. His story was so amazing to hear first-hand! I always feel so much better about my future after spending time with others who are successfully managing this condition on TKIs.
A few tidbits that I learned this weekend out of both events:
- CMLers seem to crave bananas. Since diagnosis, I've started eating a banana every morning with breakfast, and I thought it was just me. There was an interesting question about this at the beginning of the summit re: the fruit you most like to eat. BTW, grapefruit was NOT one of the choices.
- There is definitely a difference in opinion amongst CML experts on whether BMBs are needed after diagnosis if peripheral blood tests show a decline to CCyR (through 0% FISH) and downward trending PCR over the first year. Dr. Pinilla is in the BMB camp ... at least for the first year, and especially with younger patients. Just to make sure they are checking anything and everything. Stark contrast to the specialist that I'm seeing (for example).
- Dealing with side effects is absolutely the real deal, and fatigue tops the list (at least amongst those polled at the Saturday event).
- Adherance to TKIs is also a real challenge. There was a poll taken on the number of doses missed a month (or something like that), and a material percentage of folks polled miss at least 1 dose or more per month.
- I talked to some others about the recent swallowing issue that I've started to get on Gleevec 400mg (and Trey noted as a side effect), and sure enough -- others are having the same thing! It reassured me a bit, although I don't really like that 'ball in the throat' feeling. Oh well - definitely a side effect based on others' experiences.
- One person talked about reaching PCRU, then took a long TKI holiday (at least a year) and watched the PCR become detectable again, and eventually went back on and watched the PCR rapidly drop back down. During the break from the TKI, this person's PCR ratio would climb more rapidly when going through periods of stress. The advice for the group was pretty blunt -- reduce stress in your life as much as possible, because CML will try to rear its ugly head when one is going through higher levels of stress. I wonder if high levels of stress could actually be a potential root cause for CML?? Hmmm? This was something that crossed my mind at diagnosis, so I was really interested to hear this person's real experience of PCR trending against stress levels. Of course, reducing stress is much easier said than done...
- Trey is famous ... and beloved amongst the CML community for his vast knowledge and willingness to provide so much valuable feedback through this discussion board. Trey: your name came up several times on Sunday, and we would be interested in holding a roast in your honor the next time we all get together in Atlanta! :-) Perhaps we could get you over to our neck of the woods next year sometime? heh heh
Anyone else attend this weekend? Please let me know if I missed anything that would be helpful sharing......