CLL and vaccine

[KrisBren01]

I have CLL and I am worried that any vaccine may not work for CLL sufferers if it’s a live vaccine. I am also concerned as to how long we need to shield if vaccine is not found. At the minute it feels like a life sentence. Would anyone risk the vaccine to try and get some of their life back..?

[Hidden]

a live vaccine would work. However you can't take live vaccine for other reasons. there are many versions of the vaccines being developed. I suspect non live versions will be found even if not as effective. too soon to make judgement

[Hidden]

I may be wrong, but I think it may be possible that some of us could have been infected with the Coronavirus, without any, or few symptoms....

I believe it doesn't affect everyone the same way.

Obviously it's always wise to take sensible precautions, just in case..

I try not to think of it as a death sentence..... I don't want the walls closing in on me....

[lankisterguy Volunteer]

Hi KrisBren01,

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As many professional speakers would say "That's an excellent question" and I suspect that our experts - like Dr. Furman et al would respond with "We just don't know the answers yet".

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Questions like yours have come up many times recently - so far we have 274 postings that include the word COVID- here is a link to the list with the most recent on top-

healthunlocked.com/cllsuppo...

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One excellent source for what the CLL doctors believe is the CLL Society - and Dr. Brian Koffman the founder posted this item just today:

healthunlocked.com/cllsuppo...

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The CLL Society is proud to have taken a leadership role in the international CLL physician community by utilizing its survey expertise to meet the urgent need of producing a time-sensitive survey titled Management of CLL Patients Early in the COVID-19 Pandemic: An International Survey of CLL Experts published in the American Journal of Hematology, which canvassed doctors as to what they are doing to care for CLL patients during the present pandemic health emergency in the absence of peer-reviewed data.

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To read the full article, click here: onlinelibrary.wiley.com/doi...

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Len

[lexie]

I intend to rely on the judgement of my CLL specialist on this subject. I know he has access to far more accurate information and research than I could ever find on the internet. A consensus of what others might choose to do doesn't qualify as a proxy for a doctor's advice. I am staying in protective mode until I hear otherwise from my doctor.

[cajunjeff in reply to lexie]

I enjoyed reading the consensus report and thought it was helpful. I would hope everyone with cll is in protective mode and I think the consensus of opinion is that we should be.

The devil is always in the details. What does protective mode mean? Never leaving your room? Never leaving your house? Never leaving your yard? Going to a grocery in a mask and to a grocery that enforces social distancing? Having friends over to meet on your patio and have a glass of wine while sitting ten feet apart? Going through a drive through pharmacy?

I do not know that there is any zero risk plan, we have to get food from somewhere. Our doctors advice is important, but there are so many variables that personal judgment has to factor in. Each of us has to find the balance of what makes us comfortable.

I have not spoken to my doctor since going into semi-lockdown. I assume he would tell me my cll puts me at an elevated risk which he cant quantify and that I should assume getting covid would be very dangerous for me. Its up to me to figure out what to do with that information.

[P444ete]

Reports are that Oxford University vaccine will be made so that it can’t grow and is safe for ALL to take

[FairweatherSailor in reply to P444ete]

I think that the first clinical trials on the Oxford vaccine on volunteers started on 23rd April. They have around 1100 volunteers. First control group is in the 18-55 age group then going onto older groups. They have indicated that they will have first ideas as to effectiveness between 2 months and 6 months later depending upon the rate of transmission in general society. It does seem that the vaccine is not live and suitable for CLL sufferers . I am keeping my fingers crossed.

[P444ete in reply to FairweatherSailor]

I was on a presentation yesterday where a doctor from St Thomas’s hospital mentioned that a vaccine would be suitable for all. So good news

[KrisBren01]

Thank you that’s good to hear.

[Research123]

The Oxford University vaccine in human clinical trials and likely to get an answer by mid June or July as to effectiveness is NOT a live vaccine as far as I can make out. Earlier on they gave it an 80% chance of working - it does with monkeys

[gp7591]

KrisBren01- I am also concerned about development of a vaccine- and realize that may take several more months. I believe there are many different versions of a corona virus vaccine now being developed and it is quite likely that those in charge of development understand that some people (like those with CLL and other conditions) cannot take a "live" vaccine, so I suspect there will be a few different "versions". Wishing you the best, G