Hi all, had my appointment with my consultant this afternoon. All good news. Heamaglobin 116 up from 106 so normal now and no anaemia.
White cell count 24.5
Red cell count 3.60
Neutrophils 3.3
Lymphocytes 20.5
Everything else was fine. My doctor doesn't want to see me again for 8 weeks but she will order a CT scan just to check that all is well.
There was a discussion last week about foods we should avoid, I asked today and was told that I shouldn't eat Grapefruit and Seville Oranges but everything else is ok.
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So glad everything is working for you, hopefully I can get some progress this week, I have 2 heart scans Tuesday and Thursday, then see my consultant haematologist next Monday.Dave.
Not tired at all during the day but feel a bit sleepy mid evening. Think I would sleep all night if only I didn't have to get up for the loo. Put that down to all the water I am trying to drink.
Thanks, I just seem to ache after my evening dose. It’s hard working out if it is down to not socialising enough during Covid times, or my second dose. Or age😅😂. Just recently my nighttime trips to the loo have eased a bit. So happy about that 😁
I wonder if that's it! If it is I can live with it. Do you drink lots of water. I try to drink at least 2 litres of plain water plus tea and coffee and tonic water. The night time trips are a nuisance but obviously needed to flush all the nasty cells away. Stay safe x
The CT scan was planned before treatment started but because of covid didn't happen. Think it's just a back up check not because anything is suspected.
I take 100mg twice a day, one Aciclovir twice a day and two Co Trimoxazole three times a week. I has Allopurinol for the first three cycles. This is my first line of treatment. I also take an iron supplement call Spatone each morning, this seems to help with the breathing. I am going to leave that off for a month in January and see if there is any difference now that my anemia is under control. Stay safe x
Great news. As a fellow Acalabrutiniber it's great to hear of people doing well. You must feel greatly relieved. I have managed to relax about my diagnosis on this drug. I feel it gave me my life back - shame covid has got in the way!
So glad you wrote this post and I hope you're still following. My heme wants to put me in this drug to start due to swollen lymph and numbers trending the wrong way. How long will your doctor plan to keep you on this drug? And did they discuss transitioning to Ventoclax?
I asked and was told for as long as it is working. Hope it is still working, have a consultant telephone call booked for next Monday. Will report back.
Dr Munro has just rung. All good, CT scan just showed a small ovarian cyst not changed from last time and all lymph nodes reduced considerably. White cells are down to 19 and Heamaglobin 116 and normal. She doesn't want to see me/or speak to me for another 3 months. Going to celebrate with a cup of tea now. xxx😘🤗😘🤗
Thanks! my doctor mentioned when wbc falls below 50k, I could stop the acalabrutinib and start venetoclax for 12-18 months (assuming all goes well). I haven't read much about stopping acalabrutinib! I hope all is well for your appointment and looking forward to your good news.
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