COVID-19 vaccine : I have CLL and I am taking... - CLL Support

I wrote to my consultant on this point and he said it is up to me if I want the vaccine but he saw no problem as far as CLL was concerned and the Ibrutinib that I have been taking for eleven years. That said there is a trial running in America where CLL patients with Covid were taking Ibrutinib and only had mild symptoms with no need to hospitalise. Another CLL patient with Covid had stopped his Ibrutinib and he had to be hospitalised but within three days of starting Ibrutinib again he was able to leave. So it might be that there is a benefit but I would still keep taking all precautions as we do not know if these vaccines will work with the different strains with probably more to come.

• in reply toBerrytog4 years ago

I've decided not to take the vaccine. I live in a rural area, very few cases and no deaths and I take all precautions, don't go out much at all, just for groceries and to the Dr. when I have to. Haven't discussed it with my oncologist and he didn't bring it up either, so, my choice I suppose. My husband isn't going to take the vaccine either. He's afraid of allergic reactions. He isn't on any medications.

Berrytog• in reply to4 years ago

I think you are right at least from your perspective, I will think about it when we know what is what and we have the results of this one vaccine to the current strain and the many more that will follow. Like you I live in the sticks, well sort of, I have neighbour's more than a 100 yards away, but I do have a housekeeper and a gardener but they wear full PPE when they come near me. I do the weekly shop but I dress for it and go when I know there are few about. My real concern has to be the two carers that come morning and night to tend to my wife who is bedridden with Parkinson's as she refuses all medication being the cause of her plight as admitted by her doctors who prescribed it. However the carers are tested every week, wear full PPE, enter via the back door in the utility room adjacent to what was the breakfast room where my wife now is, they do not have to come into the main part of the T house. So I am as reasonably comfortable with my arrangements as I can be while I shield from this wretched pestilence and hope for the best. As Hancock and my local council keep telling me if I catch it I am dead but they do not know about Ibrutinib .

• in reply toBerrytog4 years ago

Yes, I can see that if you have carers coming into the home you would be concerned. It's good that they are tested weekly. My husband and I live on about 45 acres and what we don't own around us are wooded areas and one field. When the pandemic struck we stocked up on food and medical supplies so we don't have to go out very much at all. I enjoy seeing the wildlife, foxes, occasional cougar, rabbits, deer, etc. which come out mostly at night. We have cameras all around our property and can see them on a large screen in our living room. I enjoy that much more than television. I never took a flu shot since I've had CLL, just the two pneumonia shots. I was diagnosed with CLL 20 yrs. ago and on Imbruvica for almost 5 years. All the best to you and your wife. Even if I did catch COVID I think I would survive it. I've survived much worse. You probably have too!

Big_Dee• in reply to4 years ago

Hello bluenet

Your reason sounds good to me. I live in small town and have been practicing germ warfare long before covid hit and doing great. Wife is a frontline medical so she did get covid shot to protect me. Happy New Year.

• in reply toBig_Dee4 years ago

HAPPY NEW YEAR!!! Yes, I can see your wife receiving the vaccine since she is front line. Hope this new year is better than last.

Justasheet14 years ago

Mac,

I’m on ibrutinib and am all set to take the Moderna version this Wednesday. My specialist recommended that I take it.

My wife already had the first shot of the vaccine last week. She is highly allergic to mangoes and she was assured there weren’t any mangoes in the vaccine. She had a sore arm for 2 days and felt blah but is now hiking as we speak day 4 after vaccination.

I hope to have a decent response and I don’t see any downside to it. I just read today how we lost a forum member to Covid and want to do everything I can to stay healthy.

I too live isolated in the mountains but the cases here are climbing as people flock here to avoid the city and the virus there.

Jeff

schmitthj0074 years ago

Mac as always this is a topic that needs a discussion with your treatment team which I had. We are all in different living circumstances and stages of treatment and there might be different solutions and answers to each of us.

The data, however, is pretty clear that we derived from relatively well done studies both for the Moderna and Pfizer vaccine. It appears to be highly effective preventing Covid 19 disease with an outstanding safety profile. However, immune suppressed patients like we with CLL were excluded in these trials. While there appear to be few if any safety concerns for us theoretically and as confirmed by my treatment team, we just do not know how effective it might be for us. For me personally this is the biggest issue. I had no reservation taking the vaccine 10 days ago especially since I work in health care with patient contact.

Does that change my behaviors ? Absolutely not I still double mask including N95 at work and grocery shopping as well as a face shield . I view this vaccine as a potential additional layer of protection or giving me a better fighting chance should I get Covid 19.