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Chronic Myeloid Leukemia (CML)
Blood Cancers & Disorders | Last Active: Aug 10, 2023 | Replies (33)Comment receiving replies
I’ve been thinking a lot since my appointment Friday and changing my treatment. I sent my dr a message via the Mayo portal. The suggestion to change seemed very hasty. My oncologist didn’t suggest any option to manage the edema or treat it, let’s just try this other drug. I haven’t had an in person appointment with my oncologist or my regular physician since CoVid. We didn’t even fully discuss the nolitinib other than needing an EKG first and oh ya you have to take it twice a day. Like every thing else I start doing my homework. It’s twice a day on a schedule, no food 2 hours before or an 1 hour after either dose. Along with a long list of other stuff.
I’m not apposed to making a change if it’s the best option especially long term. Maybe I’m overthinking this, just feels like this was the easiest option on his part. Hopefully I get a response sooner than later. I also asked if the Mayo cancer team thought this was the best option without try anything to help the current side effects. Let’s just start a new drug see what happens.....
Replies to "I’ve been thinking a lot since my appointment Friday and changing my treatment. I sent my..."
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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@living, I think you're wise to get all the information you need to make an informed decision. It sounds like you have several outstanding concerns and questions that you'd like to discuss. Even if you, in the end, decide to accept the change of treatment, you'll be able to feel more comfortable with the decision. I'll be interested to learn what you find out.