Hi Lindabee,
Hopefully your count will drop before your check up then I’m a bit apprehensive about the Venetoclax tbh. My current plan is to take the first tablet at 6 am on the first day and then go into hospital at 11.00 for tests. I’ll see what happens then I guess…
Good that your rash and bruises have faded. Hopefully the nap has helped with your tiredness. That’s one advantage of working from home i guess. I don’t blame you for going out when you can, why not. We’re away in our caravan this weekend. There’s an ale festival on where we are which is a bit frustrating
Keep me in touch with your situation if you can.
Hope everything goes well for you.
Starting my first cycle of treatment today , feeling a little anxious and am not not sure why but will be good to get going as have been feeling unwell these last couple of weeks
I hope you’re doing ok, I was really anxious too but I think it’s totally normal. It actually felt relieved once I’d taken the first few pills, I hope you feel like that too
How are you getting on with the venetoclax? I’ve just received my schedule, so I start at the beginning of November, and yes I have to take the first one at 6am . Do you have to take it with food? Or can you just take the pill and go back to sleep ??
Unfortunately the doctor delayed me starting the Venetoclax. This was due to my poor kidney function. Apparently it was 56 (I think that’s a %) This was very disappointing and frustrating as I had strictly drank all the water I was advised to (around 4 litres) The Doctor was concerned, as they don’t have a dialysis machine at the hospital, just in case one was needed.
So the plan now is that I’ve got another blood test next Tuesday where hopefully the result will be better. If so, I will start the tablets on the 14th October. I will find out when I see the doctor on the 11th when we will go through the results.
So, if I do start it as planned, you won’t be that far behind me with your treatment will you. Not sure if you need to take the tablet with food, I will have to find out. I hope all goes to plan with you. It’s kind of good that we are going through the same, at similar times, so we can ask each other questions.
Hope you are getting ok. Venetoclax needs to be taken with food and glass of water. I have enclosed some information for you from our colleagues at Cancer Research UK which you might find helpful to read Cancer Research UK Venetoclax
Hi Linda,
Yes, it was such a let down, I was all prepared to start it. Hopefully blood test results will be better next time. Fingers crossed everything goes to plan for you.
Alan
Hope you’re both okay , was just wondering how you are both getting on??
Had a few ups and downs with my treatment, an allergic reaction to Allopurinol a rash and bruising and sickness related to the co-trimoxazole. So haven’t finished my first cycle yet
Have scans and tests this week so will hopefully get started again soon
I’m sorry its not going smoothly for you, its sounds pretty tough. I hope you get on track soon. My rash and bruising were bad at the beginning but now they’ve practically gone, I hope this happens for you too.
I’m now in cycle 3 so gearing up for the venetoclax. I’m doing the venetoclax introduction from home, so IF all goes well I have all my appointments over the phone and a nurse visits me to take my bloods a few times a week. I still have to go the the hospital to collect my prescription but one trip a week is fine. I’m really hoping I can carry on working as normal through it all but who knows how I’ll react. I’m not worried - yet, I know when it comes to taking the new pills I’ll have a little panic
I really hope you get sorted with the medication soon
Sorry to hear that you’ve had some ups and downs with your treatment, DottieB. Hopefully things will settle down for you soon Hopefully everything is going well for you Lindabee?
My Venetoclax has been delayed by another week again due to the ongoing kidney issue I’m seeing a kidney specialist today for that. But we do have a plan to start the Venetoclax next week. I’ve got to go into the hospital for Monday-Weds for the next few weeks to receive fluids, Rasburicase (instead of the Allopurinol) and of course blood tests. All this whilst the Venetoclax is steadily ramped up over time. So fingers crossed for that
The hospital visits have gone well. (2 more weeks to go) I have started on the Venetoclax now. Started on 20mg first week, then 50mg and on 100mg this week. Next week I’ll be going onto 200mg and the week after that will be the 400mg which is what I’ll be on for the next 11 months or so. I don’t feel too bad to be honest. No major side effects at the moment.
I’m a bit apprehensive about the Venetoclax tbh. My current plan is to take the first tablet at 6 am on the first day and then go into hospital at 11.00 for tests. I’ll see what happens then I guess…
But my plan also says tablet at 6 so I guess that’s another thing to get used to
