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Chronic Myeloid Leukemia (CML)
Blood Cancers & Disorders | Last Active: Aug 10, 2023 | Replies (33)Comment receiving replies
Hi. First off. I'm sending you a great big hug!💖 And I'm hoping today is a good day.
Taking new drugs is always terrifying. You never know what the side effects are. And believe me, I've been on a few. Let's see. Initially, I was put on hydroxeria, 2,000 mgs daily with allpurinal to prevent gout in my liver and kidney. (I only have one) 1995-1996.*
Then I was refused further treatment because I couldn't afford it. Long story. Don't want to bore anyone to tears.
After moving from NC to the UK, I was eventually put on interferon. I really didn't like it. I hate needles and having to give myself a daily shot took a lot out of me. Flu like symptoms every single day. I had bone pain, constant fatigue and it affected my blood groups all the time. Mainly platelets. 1996-2001.*
I then took part in a study. In London. STI-571 which it is now called Glivec. I was on that study for exactly 6 weeks and fell pregnant. I had to stop all medication. Then, a year later, treatment resumed. Glivec. 2002- trial. 2004-2005.*
Right now. I'm taking dasatinib. 1 pill a day. 2007-2021.*
I've had over 100 bone marrow biopsies. Breast bone and both hips. Stem cell collection. I've had platelet transfusion in the early days. And I nearly died in 1995 from over dosing on chemotherapy. The dosage was too high and because I was written off work, no income. I couldn't afford to pay the dr. So he left me on 2,000 mgs. I ended up in quarantine for 2 weeks. My blood groups were nearly depleted. I
Anyway. I'm still here to tell the tale. I'm very grateful for my second chance at living. So if I can help in any way, please get in touch. That's for anyone that reads this message.
* Years I took chemotherapy
Sending gentle hugs.💖
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Oh my gosh, gurl… You’ve been through the wringer. AML’s generally the challenging alphabet grouping of the Leukemia Club! CML is supposed to be the easy one (tongue in cheek…there IS no easy one). What you’ve gone through over the past 20 years is anything but timid!
The chemo overdosing sounds horrific. It’s not pleasant anytime but to be on it and not being monitored, no matter the financial status, is reprehensible! I’m really sorry you had to go through all of that but wow, you certainly came out on top of this incredible challenge.
There certainly is nothing like a second chance at life. It’s something I’ll never take for granted. Not that I did the first time around but we get complacent and don’t quite always appreciate every day. My story is lengthy as well. If you look at my @loribmt link you’ll find my bio and postings so I won’t type it again.
But I truly know and understand your glee at possibly getting off the meds! AND to have made it 20 years, defying the actuarial tables. Sorta feels like a super power, doesn’t it? Giggle. I came out the other side feeling pretty invincible; healthy, strong~mentally and physically and an advocate for surviving and thriving after AML and bone marrow transplants!
It’s a pleasure to have you on board and I know your experiences, along with your positive and inspiring comments will help a lot of members along the way.
Are there any other groups that have piqued your interest?