I had a telephone consultation with my haematology consultant yesterday he said my bloods were ok except there is a problem with my liver and is arranging a scan for me, he will contact me when he gets the results, I’m assuming this may be a side effect from the. Venetoclax I am taking but don’t know. I wait to see
Hi @Mickbrit, it sounds worrying times, that not knowing and waiting is so horrible.
Your icons say it all.
Please look after yourself and also let us know how you get on.
Hi @Mickbrit you must be worried I’m sure. It’s best not to imagine the worst until you have more definite information, it might be something quite trivial. Your medical team will guide you when the time comes. In the meantime Blood Cancer UK’s support team are here if you need anyone to talk to and of course do let us know how things go.
I was admitted to haematology ward last Friday as I have had severe diarrhoea for a couple of weeks. Test showed I had contracted campylobacter which may have been dormant in my system for a while, I had been on long term antibiotics but these stopped when I finished obinotuzumab three weeks ago and that is when the infection reared it’s ugly head. I had a scan on my organs and that revealed my liver was fine. I have had to stop venetoclax for up to a month to let my digestive system settle back down.
I thought whilst I was here with a captive audience I would pose the question which I know concerns a lot of people with blood cancer. “What happens when my treatment finishes next April with regard to COVID immunity as even with a booster it will be less than 50% protected, do I have a lifetime of shielding to look forward too or will there be a revaccination programme for the people like me” the answer unreassuringly was “NO ONE KNOWS”
I am sorry to hear @Mickbrit that you have been in hospital since Friday, I hope that your digestive system settles down soon.
That was a good question you posed and you probably got an honest answer !!!
Look after yourself and please do let us know how you are doing, take care.
Hi @mickbrit, I’m no expert but I read that the Astra Zenica team are currently working on developing antibodies to neutralise Covid 19. Could be ages away but encouraging for people with compromised immune systems.
Really good questions @Mickbrit we will keep monitoring the situation and the studies into vaccine efficacy and will continue to update our vaccine efficacy pages as we learn more - Covid vaccine efficacy and blood cancer | Blood Cancer UK
@Lyn99 we have some information around antibody treatments to both prevent and treat Covid on this page of our website - Antibody treatments for people with blood cancer | Blood Cancer UK.
Feel free to watch our Ask the Experts on Facebook tomorrow @Lyn99 @Mickbrit (no sign-up required) (20+) Ask the Experts: Additional vaccine doses, ongoing research and upcoming treatments | Facebook
Thanks for the info @Alice_BloodCancerUK
I came out of hospital on fri 22nd to finish a course of antibiotic. I finished the course on Sunday morning I was taken back into hospital Tuesday morning. I still have the campylobacter as bad as ever. Consultant told me this afternoon that for me there is no cure I will be kept in hospital on a drip until it goes away by itself. As a consequence I have been taken of chemo until then
Oh, @Mickbrit, I am sorry to hear that you have been taken back in hospital and also that you have been taken off your chemo meds in the meantime.
We are here for you and so is the Blood Cancer UK support line.
Take lots of care of yourself and please keep posting how you are.
That’s dreadful @Mickbrit . I do hope things get better for you soon. Keep in touch with us.
Hi @Mickbrit Sorry to hear that you have campylobacter. I really hope that your body will manage to eradicate it sooner rather than later. Hang in there it must be pretty miserable for you at the moment.
I came out of hospital last Thursday 21st finished antibiotics on Saturday morning, by Sunday lunch time I was worse than before. I rang my haematology contact and she said there were no beds on their ward and I should go to A&E I did and after 13 hours on a trolley I was admitted to a general ward. I was astounded when the doctor did rounds next morning when he said I wouldn’t be getting any treatment he preferred the body to fight through it, I said even though I have a compromised immune system and he said I would be fine. Next 2 days no treatment no fluids going to the toilet 50 times a day and vomiting also I was rescued by the haematology ward put on a drip as I was severely dehydrated and given antibiotics. Today is Friday and I’m back to normal less 1st 3oz I’ve lost in weight. Hopefully I’m going home tomorrow to finish the 14 day course of antibiotics. I have never thought of myself as near to death before but I did this week. Other than that I’m fine
Oh @Mickbrit what a nightmare for you, the main thing is that you look after yourself to build yourself up again. I cannot believe what you have gone through. Thinking of you loads
Oh @Mickbrit! I can’t begin to imagine how you must be feeling! I am so sorry. I wish there could be more ‘joined-up thinking’ at times between the A&E, where we sometimes end up, and the haematologists who understand our blood cancers. How awful to be told that your body had to fight it on its own. Hoping you can regain some of the weight and strength you must have lost. Warm wishes. Willow
Just an update. I am feeling very well at home now, I’ve started putting on weight although I still feel very tired. Things can only get better
That is absolutely brilliant news @Mickbrit, and I expect you do feel very tired, you and your body have gone through a lot, and in my experience it is a lot quicker to deplete your batteries than to top them up.
Look after yourself and keep posting
That’s great to hear!!
More good news spoken to my haematologist today and I can start back on venetaclax tomorrow after a break of almost 5 weeks and, I can start back on full dose (400mg) no need to ramp up again