7 replies to this topic

[cedespres]

Hello everyone,

     My friend died. We had been childhood friends and rode our Triumph Bonneville's all over the place as teenagers. As happens, as we grew older, we didn't see each other very often. One day while at the oncs office I saw him and his wife. He had been diagnosed with leukemia but looked pretty good. We compared stories of our journey up to that point. I am not sure if he had cml in blast crisis or aml but he had had a BMT with a donation from his younger sister, it didn't take, and that day, after his appointment, he was heading for Rhode Island Hospital for another of many transfusions. They were hoping to try another BMT but he died shortly after I saw him.

     I realize just how lucky I have been, but I can't help feeling s.ad and depressed by his passing. I realize that you folks on the forum didn't know him but I am sharing the story with you to try and get some closure. When we have cml and go through our ups and downs with side effects and slow going to get to pcru I know how frustrated we get. Believe me I am one who has complained and asked why me many times. I now KNOW how much worse it could have been.

    Hoping all are doing well, and thank you all for the great support you have given to me these last two years.

 

     Charlie

[Kellyb333]

Thank you for sharing your heart with us Charlie!!
Kelly

[Melanie]

Yes, thanks Charlie for sharing. So sorry about your friend. It reminds me to be so very grateful and how fragile life with this disease can be.

Some months ago, I had someone with CML from Canada reach out to me about the trial I'm in at MDA for low platelets. Within the several weeks that we were in communication, she ended up having to go to transplant. My heart went out to her because her choices were limited due to Canada's medical insurance system. I lost contact with her once she started her chemo treatment and after several attempts to check on her, There's been no reply. I pray all is well, but can't help but think the worst.

These stories remind me that life is so prescious and to live in the moment, love on my family and friends and be grateful for each day.

[r06ue1]

 

 

My heart went out to her because her choices were limited due to Canada's medical insurance system. 

 

Hmm, I don't think she would have had any other choices had she been here in the US.  If you need a transplant, that is the only option at the moment.

[Melanie]

You're right, it may have been her only option regardless of where she lives. I only mentioned her options because prior to finally being approved to see a specialist in Toronto, her local oncologist didn't believe in transfusions or stim shots to keep her numbers up so she could stay on Sprycel long enough to bring her PCR down. Her local onc just kept giving her drug breaks and also didn't believe in changing her TKI. She was dx in chronic phase, but by the time she was approved to see a specialist, she had advanced to accelerated, confirmed by a BMB. The specialist was switching her to Bosulif, thinking it would be gentler on her numbers, but started the BMT donor process as backup. She was still waiting for approval on the Bosulif when the CML progressed more and she went to transplant. This was all over a 6 week period. Her initial PCR at dx was 7.6 (IS)

 

I know there are many Drs that don't believe in transfusions or stim shots in order to keep you on a TKI, but from my own experience it's the only way I was able to avoid a transplant and I'm grateful that my team did believe in them and it worked for me. I still think of this young mother of two teenage girls and pray all is well and the transplant made life good for her and her family.

[r06ue1]

Do you know if she was ever on Gleevec?  Typically Oncologists will start with that as her PCR was pretty low at diagnosis.  

 

You would think that in a world where there are plenty of life jackets, that everyone would have one.  I guess I'm just a dreamer.  

[Melanie]

She was only on Spycel, but due to low platelets, never long enough to help. After each drug break, they would start back on a lower dose. She mentioned how she wished the 20mg would work for her as it did for Scuba. I'm afraid her local onc was of the frame of mind that she had the "good" leukemia and if she just took her pills all would be well. Don't think this Dr had much experience with the 5-10% that doesn't work for.

I'm still hopeful all is well and I'll hear from her someday soon.

[r06ue1]

Sounds like she had a bad doctor, should have had her on Gleevec full dose from the start, she probably would have been fine.  Of course just going by her PCR, perhaps she had high blast count, just not enough info to go on.