Continuing the discussion from CLL with Ibutrinib + Covid: Hi Mandy…

Continuing the discussion from CLL with Ibutrinib + Covid:

Hi Mandy…
Can give you a reply to some of your query. (not based on Ibutrinib)
But we are all possibly at different stages,

I too have Chronic lymphocytic leukaemia (CLL),
I am on ‘watch and wait’. (blood tests every 6 months until I reach a Lympho blood count of ‘8’ when I am referred back to a consultant). 5 Years since diagnosed.

I had 3 doses of vaccine by the end of last year(2 X Az,1 X Pfizer), Had just been contacted about my 4th dose (same day as) when on my first ‘internal social’ adventure (a Fish night at my golf club with over 70 people present) for 2 years - I contracted Covid.

Had a very high temp 38.8C, and the sweats and shivers for 2 days. Spent day1 of symptoms in bed, (that was 48 hours after contracting), Day 2 - felt a bit better. Spent the day on the phone to 111, and was eventually told to report to hospital next day for an infusion of neutralizing antibodies, (sofinitrab?).

Then for 24hours after, no pain, slept all night (9hours), and felt like a 20 year old again (instead of nearly 80!).

Next day started with the cough, and still got phlegm to clear 3 weeks later, but .

BUT otherwise I feel fine!!

So make sure you are on the list of vulnerable people, and push for the infusion and you should be OK…[quote=“Mandy, post:1, topic:5247, full:true”]
Hello, and thank you Blood Cancer Uk for directing me to this forum.
My husband has Chronic lymphocytic leukaemia (CLL), which is well managed with Ibutrinib. As a family, we have been extra careful during the last few years, especially during shielding. So far, we’ve managed to keep him safe (dodging bullets!). But it would be interesting to hear of others experiences of catching covid with the same blood cancer and treatment as him. In my head, I have catastrophised the situation, should it happen. But I’m basing this on what we’re told ‘could’ happen, and not actual first hand experiences. Thank you very much for any responses
[/quote]

2 Likes

Hi Dave,

Thank you very much for your reply. Really appreciated.

Yes, Chris is also one of the people who will be given the infusion should he contract covid. So hearing your experience of it is very uplifting.

Glad to hear you’re doing well.

I hope you continue to stay on watch and wait a while longer. But, should you need medical intervention, I can report that Chris’ experience of Ibutrinib has been (thus far!) wonderful! Blood count back to normal within 3 weeks, and has now been on it for 4 years.

Thanks again for your reply.

Best wishes to you,
Mandy

3 Likes