8 replies to this topic

[LivingWellWithCML]

Hi everyone,

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......

[jjg]

Hey Dan, Thanks for your "learnings".

I've craved bananas so much since starting G but I really did think it was the one thing I couldn't blame G for. About a week before I started treatment in Feb cyclone Yasi knocked over most of Australia's bananas & we don't import. Bananas became soooo expensive and it's only in the last weeks that they've become somewhat affordable (down south anyways). I thought it was just a case of wanting what is offensively expensive.

You know a couple of years ago Panera Bread would have been a short walk from my house - I used to live just off Monroe not far from the park - oh well we almost met

Being a bit ignorant in matters of American culture I'm wondering about holding a roast in Trey's honor (am I supposed to put @Trey here?). Sounds as if you get a nice bed of coals going underneath and rotate him slowly until he answers all our questions - might just be worth 30 hours of travel to attend that :-)

[LivingWellWithCML]

Wow, you were very close by!  And I'm happy to hear that the banana economy is recovering down under -- I'm munching one down right now as I gulp down my morning Gleevec.

@Trey - does that sound like a good "roast" to you?  They are supposed to be entertaining...

[CMLSurvivor]

Wow, that is pretty interesting about the stress issue. Sort of makes sense. Stress seems to wear you down and we already are worn down from CML and the side effects of the meds we take.

[lala]

Hi....I know I have said this before.....I was diagnosed after burying my mother and two brothers....all three died in less than 15 months....my poor body was very stressed.  My first oncologist concluded every appointment with:  remember.....no stress.  I wish she had not moved out of state!!!!!  ~Lala

[LivingWellWithCML]

Oh my, Lala -- I am so sorry to hear that.  I can't even imagine how stressful that period was, but I think there really is merit to this theory.  I wonder if an enormous amount of stress causes the bone marrow to ultimately make the fateful "mistake" that results in the 9;22 translocation (in rare cases obviously).  Like the bone marrow speeds up faster than its designed, then a couple of leukemic cells bump into each other violently, etc.  Yeah, it's a mystery -- but that is my current theory based on my diagnosis & situation.

Of course, most of us aren't in a position to eliminate stress from our lives.  Just the fact that I'm having to live with CML causes me stress!  But although I still have a very intense work routine and do a lot of air travel  & hotel stays, I no longer get as worked up about challenging client deadlines and such like I used to ... I do my best and everything's going to be okay ... the sun will come up tomorrow.  That's my new CML attitude, and I think it's helping me manage ongoing stress in a way that's more healthy to my body.

Then again, I'm typing this post after enduring a 4.5 hour flight, 4 hour drive, 2 hour time change (3 if you count last weekend's "fall back"), two very important client meetings on the horizon today, and a wonderful early morning dealing with some .... uhhhhhhhh .... Gleevec "fun" as my body processes the dose with bad hotel instant oatmeal and a banana.  I don't think Gleevec liked that meal very much, hahaha

[lala]

Wow...I cannot imagine that work schedule.  I am exhausted from reading it!  Good luck with your meetings today.  I started taking four smaller gleevec pills, and I have no more bathroom issues!  That big pill used to keep me up at night while it burned, then in the morning I would be ssssooooo tired and have the BIG D!  NO MORE......hooray!  ~ Lala

[VickiW]

Just my 2 cents here about the bananas.  I too craved them when on Gleevec but I have been on Sprycel for quite awhile now and the craving slowly went away. Now I understand why I had to have a fruit I was never particularly fond of before!