starting O+A in a couple of weeks

[elm1]

I've been on watch and wait going on 7 years. I feel very good and I wouldn't know I had anything if my blood test didn't come out wonky. Went to the hematologist today and am in need of treatment. I'm starting O+A in a couple of weeks and getting nervous. I think I'm most worried about navigating the world being immunocompromised. I had lots of travel plans and think I may not be able to be in larger groups or on a plane, Any advice?

Thanks!

[AussieNeil Partner Administrator]

You mentioned in your post of 10 months ago that your "neutrophils were very low". I can't see whether you've shared your immunoglobulin counts in the past or whether you tend to get infections more readily since your CLL diagnosis. These can give you some indication of your risk, particularly how these factors change in response to treatment. It's also possible to check reports on the level of some of the more serious circulating infectious diseases prior to deciding whether to travel.

Being up to date with recommended vaccinations, wearing a well fitted N95/FFP2 mask and taking additional precautions to reduce your infection risk by keeping your distance as much as practicable from others, being more conscious of careful hand washing and so on will also help reduce your risk. It comes down to whether the reward justifies the risk, which is a personal decision, based on an incomplete evidence - unfortunately.

Neil

[elm1 in reply to AussieNeil]

Hi. It wasnt me that mentioned low neutrophils. I’ve never posted blood work details. My wbc and lymphocytes are what have skyrocketed and I’m anemic. Thats why we’re starting treatment

[LeoPa]

Quite an unusual combination. Why this, and not O+V or just A.

[elm1 in reply to LeoPa]

it is o plus v

[DriedSeaweed in reply to LeoPa]

Actually, A+O has good data. It was just not favored during covid since giving people only acalabrutinib would mean less visits to the doctors office. It might be used more in coming years.

It appears elm1 says it is actually V+O which is more common confirming your instincts.

My hem-onc suggested A+O for me but I expressed interest in a clinical trial so we went with that.

There is now a trial trying out P+O. I assume the A+O trial had an influence on this decision.

[elm1 in reply to DriedSeaweed]

My mistake I did start O plusV not A

[DriedSeaweed in reply to elm1]

Good luck!

[elm1 in reply to DriedSeaweed]

So far so good. No reactions from the first two infusions.

[elm1 in reply to DriedSeaweed]

I’m curious about the trial you’re doing.

[DriedSeaweed in reply to elm1]

I actually “finished” my trial this past March. I did venetoclax plus zanubrutinib. It was very well tolerated. It looks like they are saying I got a partial response (PR) to the therapy since some lymphs didn’t get smaller and my bone marrow still has somewhere between 10-15% CLL.

The trial is designed for retreatment with the same regimen. Once I start exhibiting iwCLL treatment guidelines we do another year of the two drugs.

Unless my doctor decides to do something else I will try to milk V+Z until it doesn’t work anymore.

V+O has a good track record so you should be good! Perhaps Obin will be a part of my next drug combo.

[elm1 in reply to DriedSeaweed]

Thanks so much. It’s good to hear positive outcomes.

[elm1]

Actually My mistake. I started O plus V