Hi@Alan
Am so glad it’s going well with the venetoclax and that the hospital visits are okay for you !
Am doing okay thanks , had been really dizzy and had a fall but am good now thanks , I sound ancient “had a fall “ really not that old just clumsy I think
Hope things continue to go well , take care
Dottie I hope you’re on the mend after falling! And Alan I’m glad you got started on the ventoclax and its going ok.
I’ve had a few days of venetoclax, upping my dose to 50mg on wednesday. I’ve got nurses coming to my house to take my blood 3 times a week and the blood tests are looking fine so that’s good.
But I’m absolutely knackered. I’ve had a a cold/bug for a month, I’m now anaemic, and I’ve started the venetoclax. So I’m not totally sure what’s causing me to be exhausted. I’m taking iron tablets, working less, and doing phone appointments to avoid the hours of waiting around at hospital, so hopefully things will settle down soon - fingerscrossed!
Do you both get out much? I walk my dog loads. I’ve been advised that as my immune system is weakened I should avoid busy places where possible. I work from home and my kids are at secondary school, so its easy for me to avoid everything and everyone. But I feel like I’ve barely seen a soul in a month now and i think i might go a bit crazy over the winter. Are you just settling in for the winter to avoid the bugs, or risking the odd outing?
Thanks
Linda
Hi @Lindabee
So sorry you are feeling so knackered, and have been unwell , it’s blooming awful to feel like that .
I work from home as much as I can and have restricted trips out for the same reasons as you but have met friends a couple of times for a coffee where we can sit outside albeit wrapped in lots of layers as it’s blooming cold where we are at the moment .I think if not I would go a little stir crazy . My family are great but it’s good to have contact with my regular life so to speak
Take care , best wishes x
Sorry to hear that you had a fall DottieB. I hope you’re ok now.
That’s good that you’ve started the Venetoclax Lindabee. Handy that the nurses are coming to your house to do the blood tests. That’s good that they are looking good too. Sorry to hear that you’re knackered. I think one of the common side effects of the Venetoclax is fatigue and tiredness. I hope things get better for you with that.
To be honest I’m carrying on pretty much as normal at the moment. I’m still going to work, walking the dog etc. Although I have felt a bit more tired than normal, perhaps it’s the Venetoclax taking effect?? I’m starting on the 200mg dose tomorrow. 
I’ve heard it could be a pretty bad season for the flu virus, which is a bit concerning. Have you had your flu or COVID jabs? I’ve had the flu jab, my Covid is planned for next week. I didn’t really want to have it during the dosage ramp up as it made me quite bad when I had my last one.
Please keep in touch both of you. It’s good to hear how you’re both doing and interesting how we are all coping. It’s ashame our only contact is through these emails really 
It’s not very “instant” is it, if that’s the right word 
Kind regards,
Alan
Hi Alan
Glad you’re doing ok, its great that your still working. I’ve cut my hours a bit just to be kind to myself. Its a bit of a worry but I’ve planned for it and I know its for the best for now.
I’m also making sure I get out to walk the dog every day, twice if I can manage it. I feel like I could never leave the house if I don’t walk her. And I often bump in to people for a chat which is nice.
I’ve had my flu jab which was fine, but I’m not having the covid jab. Bit controversial, but it makes me too sick. Every time I’ve had it I throw up for 2 days then need about 3 days of sleep , so i end up having to take a week off work. I’m self employed so I don’t really take sick days. The plan is I take covid tests if I get ill and i’ll get antibody treatment if its positive. I had the antibody treatment once before and it was great, so I don’t mind doing that again if needed.
I think there’s a connection with Chronic lymphocytic leukaemia (CLL) and reactions to covid jabs? my consultant wasn’t surprised when we chatted about my reaction.
I’ll be up to 50mg venetoclax tomorrow. Apparently if that goes ok I can have less monitoring and no 6am drugs so I’m really hoping for a good week. I hope your new dose is ok and you have a good week too.
And i really think/hope once we’re on the 400mg it’ll all settle down and be plain sailing. Got to stay positive 
Linda
Hi Linda,
Yes, I am a bit wary of the Covid job but my consultant has advised me to get it. That antibody treatment sounds good though. I’ve not heard of that before.
Good luck with the 50mg dose tomorrow. I took the 200mg today at 6 am. Got to have blood test tomorrow and then wait for blood results for them to hopefully give the go ahead for the next dose that day.
Fingers crossed for us all.
Speak soon.
Alan
Hi @Alan72 @Lindabee @DottieB I have Chronic lymphocytic leukaemia (CLL) and I have always been on watch and wait.
My personal experience is, and I know everyone is different, but I have have had 12 Covid jabs, mostly Pfizer, with no reactions. Sometimes i have had a sore arm for a couple of days.
The last 2 years I have both my Covid and Flu jabs at the same time.
Look after yourselves
Hi @Erica
Am booked in for my flu and Covid vaccine today
Have been advised that the current flu strain is quite a bad one so think it’s the best idea
Hope you are well x
Hi, happy new year @DottieB @Alan72
How are you both doing? @Alan72 I assume you’re on the 400mg dose of Venetoclax now, hope its all going well. My nausea and tiredness seem to have improved now I’m at full dose, I guess my body’s getting used to the treatment. So I’m feeling quite a bit healthier and managing to work full time.
My neutrophils count is low though so I’m off for a jab to boost them tomorrow. Has anyone had this before? Hopefully it will make me feel better, but I am a bit worried that it could have the opposite effect.
Hope you’re both well
Linda
Hi @Lindabee and @DottieB. Happy New Year to you both.
Things aren’t going too bad now. I’m on the full dose of Venetoclax, yes. Main issue for me is acid reflux, and the occasional cramps. I did have an issue before Christmas where I had stomach pains, possible infection? I had the Covid jab too, around the same time, which affected me quite a lot. I had to come off the Venetoclax for a week and take some antibiotics.
I also had some kind of jab in my stomach to help things. Sorry I can’t remember what it was called now Didn’t have any bad effects from it though.
I’m glad that you’re feeling better now! Fingers crossed for us all going forward.
Kind regards,
Alan
Hi @Alan72
I’m so sorry you’ve been poorly. The Covid jab really affects me too these days it’s awful. but glad you’re back to normal-ish. Do you know I get cramp in my feet through the night so i have to leap out of bed to try and stretch it out. These things seem to come in phases, i get over one thing and a new symptom pops up. I did the jab in the stomach myself on friday, it was fine and i feel fine and i know how to do it now if I need it again, so i was worrying about nothing as usual
Lets hope we both stay settled for a while now - fingerscrossed!
Linda
Hi Lindabee,
Yes, I get cramp in my feet too (and thighs and calves) It’s horrible when you wake up with it during the night isn’t it! I would definitely agree that the various side effects come in phases, I said exactly the same to someone earlier on today. I’m glad the jab was ok for you. And yes, fingers crossed things will stay settled for us for a bit now. Will be interesting what my CT scan shows up in 2 or 3 weeks….
Take care,
Alan
I hope you’re both well now
sorry have been a little quiet and sorry to hear you have been under the weather @Alan72 and glad you are less tired @Lindabee , the cramps though are the worst aren’t they ?
Was just wondering how long the nausea and tiredness lasted for you? I have just completed my first week of 400 mg and it’s wiped me out !
Apologies for my randomness , I do hope you’re both doing okay
Best wishes
Good to hear from you Dottie. Sorry to hear about your nausea and tiredness. I was fortunate and didn’t really suffer from either of those, but we are all different aren’t we. I do hope it improves for you soon.
I am seeing my specialist this morning (probably why I’m awake at 3.30 in the morning, ) I had a blood test and CT scan on Monday. Unfortunately bloods came back showing I was “Neutropenic” so they gave me an injection on the Wednesday to help with this. I had another blood test yesterday (Friday) so I should get all these results at my appointment this morning 
My Vitamin D has also been low so I should find out if that has improved as well.
Have either of you suffered from Acid reflux? I was getting it really quite bad. I have improved my diet over the 3 weeks or so and it hasn’t been as bad but still there on occasions. My doctor says Acid Reflux isn’t a side effect of the medication, although my nurse would not agree with that as she has seen it before.
Take care both of you.
Alan
I’m sorry your both not having the best time.
Dottie I was the same, for about a month after going up to full dose. I then started to feel better but this was around Christmas time when I took 2 weeks off work and rested loads. Now I’m just ok, I still have bad days when I need a nap and need to graze all day to ease the nausea. But overall it’s definitely better than before. I think rest really helps if you can.
Alan , that was the jab I had the other week. A nurse taught me how to do it myself so I’m ready if I need it again. Had bloods done yesterday so I find out on Tuesday how my neutrophils are. I really hope your tests go well today
Good luck everyone, hang in there!
Linda x
Yes, that jab seems to have done the trick as the Doctor was happy with everything yesterday. Pegfilgrastim it was called. As I say he’s very happy with everything at the moment he actually said if another doctor was to see my blood results they wouldn’t know that I had Chronic lymphocytic leukaemia ('CLL') so that sounds good doesn’t it. Hope your results are good on Tuesday Linda.
Take care both of you.
Alan
Thank you for your kind messages
that’s good to know @Lindabee as it’s really exhausting at the moment, am trying to rest more as that definitely helps with the vomiting and general nausea.. a couple more weeks hopefully then . The neutropenia for you both isn’t great but good the injection works , I am not due a blood test now until the 6th March so will be interesting to see if I need it too
I do have acid reflux @Alan72 , it’s rough isn’t it , not had it before and have a reasonably healthy diet so unsure as to what’s triggering it
Hope you’re both well
Thanks again