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Cml 5 months in

Posted by cmlsux @cmlsux, 1 day ago

Hi everyone, I'm fairly new to this whole journey and looking for any tips and tricks people use to deal with side effects. I'm 45, married. Have a job working with disabled adults that I love and a company that has been kind enough to keep me employed as I go through this. The fatigue, nausea, and other GI issues are intense some days. I was finally given anti-nausea medication and am hoping that helps for the "rough" days. I am on BP medication and will probably end up on a statin for cholesterol after the last lipid panel. My oncologist has been great at getting my cml under control but doesn't have time for the side effects. My appointments with him are lab results and then he's out the door. I finally got upset last appointment and was told that my GP would handle those things. I feel that would have been helpful to know at the first consult. I am feeling lucky to have a "good" prognosis, but overwhelmed and frustrated at times at the lack of support I'm feeling. Any advise would be appreciated.

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Mentor
Lori, Volunteer Mentor | @loribmt | 1 day ago

Welcome to Connect, @cmlsux. I’m mystified why your oncologist is so dismissive with the side effects of your CML treatments and suggesting that your GP will handle those. That’s out of the purview of most GPs. I’m so sorry you’re having this experience. The side effects of some of our blood cancer meds can certainly mess with our daily quality of life.

There are several potential options for CML treatments. It isn’t out of the ordinary to try another medication if the side effects from what you’re taking are too debilitating.

Frankly, with the attitude of your doctor, I’d seek a 2nd opinion if you have that option. I’ve worked with several hematologists oncologist over the years. And even the doctors who were on a tight schedule still made sure my side effects were addressed, if not by them, by their NPs. It’s part of the entire package. Your doctor feels mechanical/clinical. We don’t have to be best friends with our doctors but we do need to feel a level trust and empathy from them.
I’m glad you finally got anti nausea meds. Some work better than others so if what you’re taking isn’t helping, ask for another. The sublingual Zofran tabs worked really well for me, taken right before meals. But any anti-nausea med can also slow down the normal peristaltic movement of the gut and sometimes cause constipation…just to keep that in mind. If you can, drink at least 64+ ounces of room temp water daily to help flush toxins. That can also help the gut.

Another thing that helped my lower digestive tract tremendously during chemo was daily Greek fat free yogurt with a small amount of flax. Seemed to calm things a little and keep my gut healthy. Not easy to do if you’re nauseated.

I have a good article from Dana Farber that might be helpful to read through for managing digestive issues during/after chemo. https://blog.dana-farber.org/insight/2023/03/how-to-manage-digestive-issues-during-and-after-chemotherapy/

What is your current treatment for CML?

REPLY
1 reply
cmlsux | @cmlsux | 19 hours ago
In reply to @loribmt "Welcome to Connect, @cmlsux. I’m mystified why your oncologist is so dismissive with the side effects..." + (show)
@loribmt

Welcome to Connect, @cmlsux. I’m mystified why your oncologist is so dismissive with the side effects of your CML treatments and suggesting that your GP will handle those. That’s out of the purview of most GPs. I’m so sorry you’re having this experience. The side effects of some of our blood cancer meds can certainly mess with our daily quality of life.

There are several potential options for CML treatments. It isn’t out of the ordinary to try another medication if the side effects from what you’re taking are too debilitating.

Frankly, with the attitude of your doctor, I’d seek a 2nd opinion if you have that option. I’ve worked with several hematologists oncologist over the years. And even the doctors who were on a tight schedule still made sure my side effects were addressed, if not by them, by their NPs. It’s part of the entire package. Your doctor feels mechanical/clinical. We don’t have to be best friends with our doctors but we do need to feel a level trust and empathy from them.
I’m glad you finally got anti nausea meds. Some work better than others so if what you’re taking isn’t helping, ask for another. The sublingual Zofran tabs worked really well for me, taken right before meals. But any anti-nausea med can also slow down the normal peristaltic movement of the gut and sometimes cause constipation…just to keep that in mind. If you can, drink at least 64+ ounces of room temp water daily to help flush toxins. That can also help the gut.

Another thing that helped my lower digestive tract tremendously during chemo was daily Greek fat free yogurt with a small amount of flax. Seemed to calm things a little and keep my gut healthy. Not easy to do if you’re nauseated.

I have a good article from Dana Farber that might be helpful to read through for managing digestive issues during/after chemo. https://blog.dana-farber.org/insight/2023/03/how-to-manage-digestive-issues-during-and-after-chemotherapy/

What is your current treatment for CML?

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@loribmt
Thank you. My current treatment is scemblix 80mg and I was able to hit MMR at 3 months in. I feel this is part of why I'm not feeling heard. I am now on BP medication, Cholesterol medication, along others. They were prescribed by the NP at another clinic after a telehealth visit. The phlebotomy nurse set it up since my doctor didn't have time(yet again). He was able to assure me that this isn't out of the norm and can be controlled with medication. He said I could try another TKI, but if my goal is eventual TFR, I am on the best one. Thank you for the tips.

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