heart slowing down

[Sepsur]

has anyone found they have a much slower heart rate after treatment? My heart is slowing down - 42-37 - looking at pacemaker options

[JigFettler Volunteer]

Hey!

My resting heart rate pre FCR was 76 post FCR 56... But that fact is of little help to you!

Heart rate and rythmn are very sensitive indicators of "things not right" mainly by an increased rate or an irregular rythmn.

You gave little information - but noting you are looking at pacemakers makes me think you have had an ECG, and I would assume a cardiac imaging event of some kind.

What did the ECG reveal? Is your heart muscle of normal size? Do you have normal coronary circulation?

Of course - the need for heart rate assistance can develop independantly of CLL and CLL treatments. This may be unrelated. Check your thyroid function! 😉

I hope this resolves favourably for you - I know you have been through a lot!

All best wishes.

Jig

[Sepsur in reply to JigFettler]

thank you - very early stages of explorations this time - over the last 7yrs my heart has been mischievous after ICU

[Sushibruno]

Sepsur have you been to the ER? You mentioned loosing weight. What have the doctor told you? This needs to be addressed.

[Sepsur in reply to Sushibruno]

on my way to Wythenshawe hospital soon 🤞🏻

[Sushibruno in reply to Sepsur]

Good luck to you🤗🤗

[dave20]

My resting heart rate down from 70 to 60 after started with Ibrutinib, but my Hematologist

did not provide me any explanation. I develop serious skin problem with Ibrutinib and change to Acalabrutinib. After 2 weeks taking Acalabrutinib, my skin problem gone and my resting heart rate went back to 70.

[Sepsur in reply to dave20]

Thanks Dave -

[nvp815]

Hi Miles,

My mom, who also had CLL, had her heart rate drop into the high 30s. It is hard to say if it could be attributed to her CLL treatment because her brother, not a CLL patient, also required a pacemaker for low heart rate. They both were diagnosed with a right bundle branch block. Good news is that they both did well with their pacemakers. My mom passed away at 93 and my uncle is still alive and thriving at 99. They each spent one night in the hospital after placement of their pacemakers and as I recall there was very little discomfort involved. Wishing you the very best of luck. I will be following your updates.

Warm regards,

Nan

[Sepsur in reply to nvp815]

Thank you Nan - I suspect my heart has been damaged either as a result of MOF, virus or other infection after ICU - I had heart failure then.

[nvp815 in reply to Sepsur]

Okay…understood. Please take good care of yourself. Hope you get the proper intervention soon and are back to a normal heart rhythm/rate promptly.

Hugs,

Nan

[Drea22]

Mine slowed to the high 30s, low 40s, when I first started obinutuzumab. They called it brachycardia, and I was being monitored in the hospital for two days as was protocol for starting regimen. Then when I was released I wore a heart monitor for two weeks. The issue did resolve within a week of starting treatment. They ran their battery of tests, of course, and it was deemed my heart and rhythm was healthy. Doc said the research had said it was a known issue but rare. Was able to then start venetoclax without incident and reach 400mg. Good luck to you 😊

[Sepsur in reply to Drea22]

Thank you

[xpetes]

Interesting. After my first round (over two days) of Obinituz... my Fitbit woke me up in the middle of the night buzzing away because my heart rate was 35. My oncologist was paged and they told me to go to the ER. At the hospital they did an EKG which other then slow was normal and after much discussion with the oncologist they sent me home. Neither the hospital nor my oncologist had any explanation and they also said all the literature on Obin. had no mention of brachycardia. This is the first time I've seen another person mention the same thing! I guess the manufacturer of the stuff should be told perhaps since they don't list it as a side effect in the drug literature.

In my case it was the one time experience, but never the less, very scary! Especially since I'm told that people may likely go into cardiac arrest if it gets any slower...

[Sepsur in reply to xpetes]

Thank you for your reply - there are numerous accounts of A fib - I was interested if anyone had experienced the reverse. For me, along with the possibility that it’s just one of those things, I also potentially have numerous contributing factors. 😊

[Sushibruno in reply to Sepsur]

How are you Sepsur?

[Sepsur in reply to Sushibruno]

Pretty crap but tomorrow is another day 💙

[Sushibruno in reply to Sepsur]

What did the doc say are they taking care of you?

[Sepsur in reply to Sushibruno]

Seeing one set tomorrow & waiting for consultation from other. I hope you are ok 💙

[Big_Dee]

Hello Sepsur

I had a low heart rate of 28-32 at rest after few months of Venclexta. I had a cardiologist put me on mildest betablocker and aspirin as a precaution right before my 2017 CLL diagnosis. It appears that Venclexta can act as a blood thinner. I was taken off betablocker and aspirin which solved the problem, heart rate back to 65-75. Blessings, hope you get it sorted.

[Sepsur in reply to Big_Dee]

Thank you - yes I had the same issue during treatment of I & V but I’m now 2.8 yrs past treatment phase 😊