@Karpeta how are you doing this week? Thinking of you
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Good morning to you x
All good here. Time is frozen … sort of. My cancer is seating still, no progress registered so far. we are almost half way through October, twice a week i get bloods (tests and top ups). Consultants watching my blood very closely, to help out in time if/when will be needed. waiting for November and holding everything crossed for the slot.
On the other hand the weather is beautiful down here, so making most of it. My sister is living with us, helping out with everything and my daughter coming today to stay for a week.
How are you coping? Is there much progress about your sister?
May I ask you a q regarding your husband’s pre transplant treatment please. Can you possibly remember the daily dose of venetoclax he had. Together with azacitidine it goes from 100mg/day to 400mg/day. Also was it on NHS? I hope I am not asking too much.
Lots of love xxxx Irina
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This is great news ~ hang tight and keep doing what you’re doing!
Of course ~ he had 400mg per day of venetoclax for a period and then we think this dropped to 100mg. We think however that his second cycle theoretically should have been 14 days rather than 28 but his consultant said he tolerated this well so he had a second round at 28 days.
He had this privately in the UK but his consultant is the same consultant that he sees now in the NHS for transplant treatment. We have to stay in the NHS for post transplant monitoring due to the complexity.
Hope that makes sense but let us know if you have any other questions!
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Thank you very much for this information. It all ads up with what’s going on at my end.
Coming back to you. How are you and how is your sister? xxx
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How are you now Karpeta
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I am still ok, thank you for asking.
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Good to hear from you.
Did you have venetoclax & azacitidine to bring blasts down? Or did you have another treatment?
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Hi, what was the clinical trial?
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It was for Acute myeloid leukaemia (AML), not going ahead now.
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Look out for my earlier posts please, click on my name and go to my page for it. If you have any Qs, welcome.
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@Karpeta how are you doing? Thinking of you
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Hi, thank you for asking.
Week two into V&A treatment. So far all ok. Last day is on 1st of November, then BM test will show where to go from there (if anywhere it is.).
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Ok fantastic, thinking of you. That treatment took my husband to MRD negative before transplant so I’m hoping for the very best for you too.
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Hi, so good to hear from you time to time. It is wonderful to know that there are people like your husband that made it with V&A.
I feel really well now, bones and joints are absolutely pain free. Just topping up my bloods on time and “take it easy” when it’s too low.
Best wishes to you both
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Thanks for the update @Karpeta
Really look after and be ever so kind to yourself, oh, and keep posting xx
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Hi Karpeta, hope your treatment going well. My dad is starting v&a this week. His spleen is very big and white counts are over 100.
I have been reading the injection is painful and causes bruising- do you put anything on it for healing? Also nausea any cure for this. I just want to be prepared.
They will keep him in for a 7days and monitor him.
Any advice would be appreciated
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Dear @ad7854
Lovely to hear from you. You sound like you are doing a great job being prepared for your Dad’s treatment.
Are you referring to Venetoclax and Azacitadine treatment? I just wanted to check as different hospitals have different acronyms for this regimen.
You are correct the Azacitadine does irritate the surrounding skin at the injection site. The treating team may be able to prescribe some cream that you put on straight after injection to try and prevent this or lessen it a little, you can ask for this from day 1 just to be prepared.
Your Dad will be given antisickness medication, he will most likely have a medicine to take on the 7 days of injections and then some to have in the cupboard as a ‘Just in case’, so dont worry yourself to much about this. If the medicines arent enough he can discuss this with the team and they can make some changes.
The most important thing is he always reports any symotoms or side effects to the team so they can support him the best they can.
If you want to talk through this in more detail you would be very welcome to call us, our number is 0808 2080 888.
Best Wishes and good luck for start of treatment.
Heidi (Support Services Nurse)
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Hi dear, best of luck to your dad. V@A did not work for me at all. It become clear by the end of week two (the white blood cell started to go very fast again).
Regarding the injections. They are absolutely pain free to go in, but very bad soon after and painful for a good week. Yes heavy bruising for a long time, later skin flacks. You soon learn to ignore the pain. I use body oil all over, always have done. It helped here a bit too.
About the side effects, I am normally very lucky and hardly have anything. before the injection your father will be given something for sickness (I had something too). After the 7 days of injections was no more need for that in my case.
Again very best wishes to your dad and you, stay strong, hugs xx
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sorry - skin flakes.
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@Karpeta Hi Karpeta, my dad’s numbers came down over 10days then- over the weekend his whites shot up to 25 - most of them are blasts.
What was the next course of action for you. They are saying we can only have venetoclax for 7 days for Acute myeloid leukaemia (AML).
Also what dosage of venetoclax did you have ?
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