How to reduce high Ferritin level with CML (Chronic Myeloid Leukemia)?

Posted by talmadge81 @talmadge81, Jul 24 1:48pm

How to reduce high Ferritin levels? I've had CML-Chronic Myeloid Leukemia for 1 1/2 years and Ferritin levels just keep going up. They are at 625 as of July, 2024

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Lori, Volunteer Mentor | @loribmt | Jul 24 1:53pm

Hi @talmadge81, Are you receiving blood transfusions as part of your treatment for CML? If so, that can raise the Ferritin levels. What is your hemo-oncologist recommending, if anything for the levels?

gloriafuerza | @gloriafuerza | Jul 24 2:03pm

My case is that I recieve blood transfusions every 18 days, more or les, and my Ferritin is high ( 1.000) , so the Hematologist recomend to have Deferasirox.

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talmadge81 | @talmadge81 | Jul 24 3:16pm

Thank you Lori for answering. I'm not receiving blood transfusions. My previous oncologist didn't say anything about it. He has moved and I'll see my new one for the first time next week. Guess I need not worry about it until next week. Are there dietary things I can do to decrease the high levels?

talmadge81 | @talmadge81 | Jul 24 3:26pm

In reply to @gloriafuerza "My case is that I recieve blood transfusions every 18 days, more or les, and my..." + (show)

Thank you!

Lori, Volunteer Mentor | @loribmt | Jul 24 4:38pm

In reply to @talmadge81 "Thank you Lori for answering. I'm not receiving blood transfusions. My previous oncologist didn't say anything..." + (show)

Diets low in iron or iron blocking foods, along with exercise can play a roll in lowering iron/ferritin levels. But first it’s important to learn the underlying cause of the excess iron.

When you have a blood cancer there may be other factors involved that are causing the elevation. In my case with AML it was the blood transfusions that were the issue.
Honestly, I wouldn’t do anything differently until you speak with your oncologist. You have an appointment next week and they’ll be going over all of your blood work results with you at that time.
I know it’s a challenge to wait when you see results before getting clarification from your doctor. Nothing like building up that anxiety level…been there myself!
Are you still being treated with Tasigna?

talmadge81 | @talmadge81 | Jul 25 10:28am

In reply to @loribmt "Diets low in iron or iron blocking foods, along with exercise can play a roll in..." + (show)

I'm doing ok now - just waiting! My 10-19-2023: BCR-ABL 1, Minor (p190)Quant Ratio on 300 mg Tasigna was 0.00040
My 3-5-2024 on 300 mg Tasigna was 0.02028

talmadge81 | @talmadge81 | Jul 29 12:03pm

Hi Lori, just saw my Oncologist today. He was not concerned about my most recent Ferritin level of 628. Also we were both pleased with a BCR-ABL 1, minor was down to 0.00852. Thanks for your helpful comments when I was a little anxious!

Lori, Volunteer Mentor | @loribmt | Jul 29 2:58pm

In reply to @talmadge81 "Hi Lori, just saw my Oncologist today. He was not concerned about my most recent Ferritin..." + (show)

Hi @talmadge81 Thanks for the update and I’m happy that there was no concern with your ferritin level.
It’s easy to get a little anxious when we see results of our tests before having the opportunity to consult with our doctors.
Sounds like the meeting with your new oncologist went well. It’s a relief to hear good news, isn’t it? ☺️

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