Update.

[Jacksc06]

Spoke with Dr Sidra my haematologist yesterday. My red cells are still being destroyed more rapidly than they are replenishing. He has reduced my Imber from 329mg daily to 280 mg. I am now reducing my Prednisolone dosage on a taper every 2 weeks. Still having issues with feeling very hot and quite fatigued. I have been off work for around 4 months now so my sick pay is getting close to running out for this year. I am musing about dropping from working 5 days to 3 days per week if it is financially viable. May have to make reductions in order to do so but needs must. I have Love and strength to all. been struggling with my working hours and really need to look at the bigger picture, Health before wealth.

[Walkingtall62]

Oh nooooo Jack. I am so sorry to read this. I hope the cat in the picture is giving you lots of cuddles. Did you manage to move home yet. You have sooo much going on and hope you know we are all here for you. Keep in touch. Just wish I could do something.

[Jacksc06 in reply to Walkingtall62]

Hi. Yes Siren my cat is my constant companion, he keeps me going when it's tough. Hoping to move early November, I just need my former partner to stop trying to slow things down and reducing the funds owed to me for my half of the equity. Yes it's pretty tough at present but we fight on and move forward.

[Walkingtall62 in reply to Jacksc06]

All the best. Take care.

[Zia2]

I hope with the decrease in medication your labs improve. It is a constant battle to work or find work we can do isn’t it? We’re the same age and I’m ready for 65, Medicare and part-time work. Hoping you can find a way to work 3 days a week. Wishing you only the best.

[Jacksc06 in reply to Zia2]

Thank you. Yes I have realised that I can't work the hours or at the pace that I once could so needs must. Best wishes.

[AnneHill in reply to Jacksc06]

Im sorry you are so unwell. I was in a lot of pain with my back and when I was made redundant in 2006 I walked away and decided I couldnt cope any longer.I was able to get some benefits but I was lucky my husband was still working. Have you got a pension you could take early on medical grounds?.

I have fatigue and I fall asleep every day. I think you are too unwell to work.

I hope you get your treatment adjusted and your numbers under control, take care, Anne uk

[Jacksc06 in reply to AnneHill]

Thank you Anne. I have been looking at my workplace pension, which I am due to start receiving at 65 which is 14 months away. I will probably give it until the end of the year to take stock of things and weigh up my options. Best wishes

[scarletnoir in reply to Jacksc06]

I'm sorry to hear of your struggles...

As for the pension - would you be able to retire early on health grounds, with the pension then being topped up to the full amount? Is it worth talking to your employer's HR department, bursar or whoever is in charge of that? There are often deals to be done...

[Jacksc06 in reply to scarletnoir]

Thanks, Another option.

[Phil4-13]

God bless you with all needed resources available and strength to see you through this time. 😊Sandra

[Jacksc06 in reply to Phil4-13]

Thank you Sandra.

[DoriZett]

Fatigue along with spine condition causing much pain - has pushed me to disability at 62. Thought I could make it to age 67 retirement (in US) but it was not to be. Best to you as you weigh your options.

[Jacksc06 in reply to DoriZett]

Thank you.

[Agfar]

Have you considered a disability pension? I'm not that knowledgeable about it but years ago my Dad got one when having to retire early. Just a thought.

[Jacksc06 in reply to Agfar]

Hi. Thanks for the suggestion. I am looking at all options at present. Best wishes.

[terryI_uk]

Hopefully the dose alterations will work and you'll start to feel better. Only you can decide on the work situation unfortunately. I had to stop full time work while waiting for treatment and a shoulder repair back in 2014. Didn't start any part time jobs until 2018 and adjusted lifestyle accordingly. Retired now luckily and glad of it, still have a lot of fatigue. Hope things work out for you soon, God bless, Terry

[Jacksc06 in reply to terryI_uk]

Thank you Terry. Yes I am giving my options a lot of consideration at present.

[spi3]

I hope you get into a good treatment fast to help you recover- this happened to my hubby and he was put on Obinutuzumab and his energy came back. Then his CLL Expert Dr put him on acalabrutinib after a month and 3 months after on venetoclax-of course he finished the Obinutuzumab. These 2 years he is still on venetoclax and acalabrutinib (I call them his Warrior Angels). He plays golf everyday too. Also does your place of employment offer telework (where you can work from home) - this may help you when you feel up to it get a few extra hours of work in . I hope your Dr is a CLL Expert and up on the latest treatments too. You are in my prayers 🙏

[Jacksc06]

Thank you. My haematologist is pretty on par with treatment options so will be discussing that with him. He wants to "wring out every last bit out of the Ibrutinib before moving on to a different medication. My work is manual, a lot of lifting so that doesn't help but taking it easy is good exercise for me. Best wishes.

[danimal7777 in reply to Jacksc06]

I don't think I understand the need to "wring out every last bit ...," that makes no sense to me.

I took ibrutinib for quite a while, and had absorption issues that cause me to lose about 20% of my weight in a matter of months, along with chronic loss of blood protein and I couldn't stop the weight loss or protein issue. Then acalabrutinib became available, and it made a huge, positive difference. All the BTK inhibitors have different profiles of off-target effects, and they seem to differ for each person. But it seems to me that "sqeezing all the good" out of something that may be causing you damaging side effects deserves review or a second opinion. Especially when the later generations after ibrutinib have fewer off-target impacts.

[Jacksc06 in reply to danimal7777]

I am currently in discussion with him about this, looking at a different medication. Hopefully acalabrutinib is the answer. Best wishes.

[Smakwater]

I wish that you did not have this hardship!

JM

[Jacksc06]

Me too,but we all have a cross to bear unfortunately . Best wishes.

[CycleWonder]

You are being very thoughtful about your future and that will bode you well. I am sorry you are under this stress but very happy you have your kitty to comfort you. One of my happiest times of day is when my kitty settles down on my lap at the end of my day.

[Jacksc06 in reply to CycleWonder]

Yes. It is time to realise that I need to ease off and put myself and my health first. My happiest times are with Siren sat on my knee or with him on his blanket beside me. He is all I have. Best wishes.

[BobbyFour]

It sure sounds like you are going through a rough patch. I have no words of wisdom, but thinking of you.

[Jacksc06 in reply to BobbyFour]

Thank you.

[JerrysGirl3]

I'm sorry. I hate that it can take months years til suddenly something "works". And then it doesn't or it continues to. Those of you who know my UPs and DOWNS here know how quickly a good thing stops being good. There's an issue on the back burner now but I'm not letting it get the better of me even tho I'm really scared Sh-it less about it. I have to stop sometime and get on. I feel like I had something similar to you a long time ago but I just can't remember 🙁. Does that have to do with reticulocytes?