Gradually heading towards the end of W&W so searching for best advice possible.
I am a very keen exerciser and would like to continue exercise while on medication which has been suggested is likely to be V&O.
I have read that V can cause myocarditis and O can cause arrhythmias including VT and atrial fib.
Has anyone been on either of these medications - either alone or together - and has been advised that they can exercise and done so successfully or unsuccessfully?
I am on a slightly different medication set (zanubrutinib and a venetoclax analogue in clinical trial). So no obinutuzumab in my case. But... my understanding is the risk of heart issues is relatively low and it is not correlated to activity levels in any case.
The one firm finding on managing CLL symptoms is that exercise is better than no exercise. However... "exercise" can be as simple as walks around the block.
I found early in treatment that my ability to exercise was severely impaired. I'm a cyclist, and my weekends were 100 miles plus before treatment. I have no idea now how I'd manage something like that.
Nowadays a 20 mile day is a lot, and I'm significantly slower. But I am able to get out and do some work. My doctors are supportive, while reiterating "don't overdo it, but do do it."
My thought would be "half a loaf is better than none." Exercise to tolerance, but don't push it.
I console myself when others blow by me on the bike trail with a muttered "congrats, you're passing the guy with LEUKEMIA." It helps. Somewhat.
My first treatment was acalabrutinib plus venetoclax and obinutuzumab. I began the trial with severe neutropenia (stage 3 without up to daily G-CSF injections) and ended up spending 5 weeks in hospital with febrile neutropenia. I developed severe chest pain a couple of times and ECG checks ruled out any heart involvement. I used to exercise by walking around the hospital, which was favourably considered by the trial medical team. When I was discharged from hospital, I was regularly having blood tests, initially a couple of times a week. I measured my recovery by how I could reduce my walking time to the pathology lab when I was eventually up to doing the ~2km round trip. I gradually extended the length of my walk to explore the neighbourhood.
Neil
Thanks Neil.
I have residual myocarditis from Covid and a history of both atrial and ventricular arrhythmias
The decision is still some time away but there are no cardiological oncologists in NZ .
Are there any in Australia?
Sorry, but I don't know if there are any cardiological oncologists in Australia, but arguably the center of excellence for CLL in Australia is in Melbourne. Drs Con Tam and Philip Thompson gained their experience at M D Anderson in Texas, before relocating to The Alfred Hospital and The Peter Mac respectively. Either should be able to confer with their colleagues here or overseas about your case if you can arrange a consult with one of them or someone else they could recommend.
Neil
Hi there,
I had a rapid, horrible reaction to Ibrutinib, with severe cardio toxic side effects after only 8 wks. I’m one of the people it really doesn’t suit. I am therefore delighted to be able to tell you that V&O has been a breeze. No side effects except fatigue (which goes with the territory, I gather) and increased pain (I have other issues). I can’t say whether that would have happened anyway. I’ll keep you posted as to how I do when my 1 yr treatment finishes next month. In answer to your question, increased pain of uncertain cause, lack of motivation due to fatigue, and a lousy winter all impacted on my exercise levels. Thing is, I can’t say how much was due to V&O and how much to other causes. What I would say is that it’s far more benign in terms of side effects than Ibrutinib. I suspect the latter may suit younger people better. Good luck!
Thanks Deilginis.
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