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Leukemia With Congestive Heart Failure

A MyLeukemiaTeam Member asked a question 💭
Rowland Heights, CA

Congestive heart failure (CHF) recently added to living with leukemia. Would love to hear about other experiences with what to expect; lifestyle, treatment revisions, views and possible outcome. Thank you in advance and hope that everyone here will have more good days than bad days :)

October 25, 2022
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A MyLeukemiaTeam Member

It's been my experience that oncologists are very unlikely to say sudden and unlikely health issues are caused by any cancer med they've given you. I feel it may be an ethical issue, as in, they fear telling you it's your cancer med causing these issues may cause you to stop taking it. I absolutely knew my PH was caused by the cancer meds. I started them and within a month had developed very bad shortness of breath. They knew about this for months but waited until I gained 15 lbs in one week from fluid retention and had both pleural and cardiac effusions before they acted.
Information on both drugs that caused the PH and effusions plainly said pleural effusion and PH are side effects TKI users need to be monitored for. But the oncologists were very hesitant to pay attention when I said I couldn't breathe. It was only after the final diagnosis of severe PH was made by the pulmonologist that my oncologist said it had been caused by the cancer med(s).

November 23, 2022
A MyLeukemiaTeam Member

Very sorry to hear that. I assume (and could be wrong, of course) that you've had chemo already (?). Wondering if your doctors have said when they think the heart failure began. I.e. do they think it is a side effect of chemo or oral drugs, like Gleevec, Sprycel or other TKIs, or did they say the HF was likely there prior to your cancer dx/treatment? I'm on my third TKI. The first two gave me "severe pulmonary hypertension" and had to be d/c. Unresolved pulmonary hypertension usually ends with heart failure within two to three years after dx. Thankfully, mine resolved after cessation of the offending medications. I wonder also if you have had a right heart cath to rule out pulmonary hypertension? Just some things you may want ask your doctors. Of course, I'm not a doctor and it's their advice you should adhere to, but asking questions honestly and openly can get answers which may help you understand and possibly comfort you. Sometimes not knowing can be very upsetting.

Best of luck to you.

October 25, 2022
A MyLeukemiaTeam Member

Just my experience, I had my near fatal heart attack in Jan of 2000, hell of a way to start a new century. Blood clot shut down widow maker artery, across back of heart, lost 50% of it. 5 cancers later. I still want to talk about root cause. I think we got a clue when they decided I had cll. Very advanced. But they all have their little world it seems.
I feel I got very lucky, my oc and cardiac doctors were old friends that reconnected over me. Darn that could be a song!

April 4, 2023
A MyLeukemiaTeam Member

H

March 15, 2023
A MyLeukemiaTeam Member

I have had col for approx 15 yrs, chemo twice, also 2 aortic valve replacements, lung cancer, and heart failure, doing well, eat healthy, exercise at least 1 HR a day, enjoy life, manage the heart failure with meds and exercise back to normal heart efficiency

March 15, 2023

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