Just had my yearly telephone consultation with my haematologist. My bloods are stable over the past year. Yippee! He's made an appointment for August 2022.
He did make some startling claims however:
1. You can get a live shingles vaccine if you are not having treatment.
2. Your reaction to covid vaccination should be the same as anyone else. You should have antibodies.
3. Your fatigue is not down to CLL. It's probably your ME/CFS.
Any thoughts gratefully received.
My thought is that your consultant doesn't seem to be very well informed.
1. You can get a live shingles vaccine if you are not having treatment. - No health care provider has ever said anything to me but the opposite of that statement, I should not ever get any live vaccines! I guess you could get a live shingles vaccine but you would be at increased risk of coming down with shingles!
2. Your reaction to covid vaccination should be the same as anyone else. - You should have antibodies. I'm certain that you've probably been reading post related to that and realize that antibody response, even in W & W individuals is depressed.
To highlight just two publications:
-Antibody responses after first and second Covid-19 vaccination in patients with CLL.
nature.com/articles/s41408-...
Figures 3 A & B antibody responses to COVID-19 vaccination are significantly lower in W & W individuals than in healthy donors.
-Efficacy of the BNT162b2 mRNA COVID-19 vaccine in patients with CLL doi.org/10.1182/blood.20210...
Table 2. 41.3% of W & W Cll patients did not make detectable antibodies.
“Although treatment-naive patients had a better antibody response to the vaccine than actively treated patients, our findings highlight the fact that treatment-naive patients with CLL have reduced responses and lower antibody titers after vaccination compared with healthy individuals. This can be explained by qualitative and quantitative defects of the innate and adaptive immune systems, which have been well documented in almost all patients with CLL since diagnosis, along with an inefficient antibody response, often recognized in patients with CLL from the early disease stages.21 “ (my emphasis)
3. Your fatigue is not down to CLL. It's probably your ME/CFS. - I can't really comment on that, maybe others can. I think JigFettler recently commented on fatigue during W & W. healthunlocked.com/cllsuppo....
gardening-girl
PS Thanks to AussieNeil for locating Jig's recent post.
Many thanks for that. It is a great help. It gives me the evidence I need if I decide to make a formal complaint.
Perhaps time to change your hematologist.
First consultation after starting treatment
A recent consultation with a CLL specialist, and confirmation of genetic markers
Follow up on haematologist appointment for sharp rise in lymphocytes. 
Todays consultation
