Hello all.
I live in upstate New York and was diagnosed with CML 2 1/2 years ago. I do not know anyone who has CML. I think it would be so helpful if an online meet up group for others in the USA to share their stories, fears and triumphs both medically and emotionally.
I have no idea how to begin this forum so if anyone has the interest and know how please respond!
Hi Jason,
Welcome to the club! Sorry to say, none of asked to join it, but here we are anyway. 
How's it going? What's your TKI and dose? Are you learning all the new lingo associated with CML?
If you have any questions, one or more of us has probably experienced something similar in our CML journeys.
Kirk
Hi Jason , interesting how the diagnosis changes the way you view your world! Do you have a support system? Even so, no one can understand what we go thru when we first get the news.
i know I have attempted contacting local support groups but they all had the Acute form of leukemia and just freaked me out!
this online group is helpful and any of their face to face support is in the UK. So I thought a group in the US would be helpful.
feel free to share.
Hey thanks
I'm on Sprycel 100mg
Was taken off for 8 days because platelet count was to low. Been back on for 2 weeks and everything is good. No side effects anymore. Tell me about you.
Hi
Oh, cancer is wonderful. This is my second form in my long 43 years of life.
Had testicular cancer 11 years ago.
I'm an old pro at this sad to say.
Yes, I have a support group aka wife and kids but yeah non of them can fully understand what its like.
Jason, have you considered going to a lower dose of Sprycel? It could possibly give better results, since you had low platelets.
I was DX after giving a blood donation to the Red Cross. I started donating in high school (55 now) and had donated over 80 pints until they told me they didn't want my blood anymore. Imagine that! That was in September of 2012. Things went great on Gleevec until 2017, then my PCR scores started creeping up. I switched to Sprycel but it gave me some side effects I didn't really care for. The good part is that Sprycel seems to really control my CML. I've been alternating imatinib and Sprycel with pretty good results. My last PCR score was my best ever at 000.006% IS (I like zeros when it comes to PCR scores).
I was lucky to be diagnosed accidentally. I didn't have any symptoms at all. On imatinib the only side effects I had were a little bit of muscle cramping and a bunch of really tiny blood blisters in between my fingers. Also a few small subconjunctival eye bleeds.
Here's hoping you'll have some zeros (not your platelets!) on your cytogenetics, FISH and PCR tests in the New Year.
For fun, I like to hike in the beautiful forests around here. What do you like to do with your spare time?
Oregon kara ai (my new international signoff),
Kirk
Had my testicle removed. I had chemotherapy no radiation.
Chemo didn't work, so had the lipnodes removed that were infected with cancer. Was cancer free for over 10 years until this.
Well hopefully everything is under control now. This is all new to me and I'm learning as much as I can. Its great your cml is under control. Since I started back on my meds I've had no side effects at all. I know I have a fish test in February. Been feeling great honestly. Hopefully everything gets under control fast and stays that way. My wife and I are outdoor people too. We have beautiful mountains and lakes near us we hike.
