grateful

[manzelka]

Husband isn't on any treatment for the CLL at the moment and hasn't been since stopping

Veneteclax a year after having the treatment due to various side effects.

But every blood test so far is showing the CLL is not showing signs of being active, he is having blood tests every 3 to four months and a phone consultation with one of the haematology team.

I am extremely grateful he is still here with me.

[Floxxy]

Long may it continue. X

[lankisterguy Volunteer]

Hi manzelka,

Glad to hear that your husband has achieved what most of us want to become- a boring patient for our doctors. No surprises, no concerns, and an opportunity to live a normal life.

Congratulations to you both- our caregivers have just as an important role as our medical team.

Len

[Agfar]

Good to hear your husband is doing so well and long may it continue. I feel I may sense that his CLL is troubling you more than it needs to. It sounds as though he is doing well. Don't worry too much, go out and enjoy yourselves. You'll do whatever feels comfortable for you both, I'm sure. If I got this wrong, then I apologise.

[AnneHill]

Hi, I have stopped taking Ibrutinib. The doctors are giving me a break.Its like going back to watch and wait. Your husband is having blood tests and being monitored as I am.

The cll is in remission and could be for a long time. As soon as there are signs it is coming back the haematologists will put your husband on a treatment.

I found it nerve wracking stopping treatment and yet I had chemo for 6 months and didnt need treatment again for 8 years. I have taken Ibrutinib for 5 years and have been in remission for a long time.

It is good if you can make the most of life. I have learnt that if the cll is going to get worse it will. It gets treated but we need to enjoy life when we feel well.

If you lock your post you will get more replies. Unlocked means it can be read by all using the internet instead of just this site, Anne uk

[CoachVera55 in reply to AnneHill]

Wow I’d love to hear more. What was the duration of Chemo ordered & what side effects made you stop? 8yrs sound great! So five years on Ibrutinib & how long of a break so far? I did 13 months on mostly Zanubrutinib & it was very effective but it caused heart & lung issues even on 1/2 dose. Now 6 weeks off with great labs & when pressed the CLL Specialist said most of her patients get 1yr off before needing any treatment again. Yes Wait & Watch sounds splendid 🙌🏾

[AnneHill in reply to CoachVera55]

I was diagnosed in 2001 aged 43. My numbers were really low. I was monitored every 12 months. It was 9 years before I needed treatment. My spleen was enlarged and my lymphnodes in my stomach were swollen.Unlike today there wasnt a choice of treatments. The btk inhibitors didnt exist. I was lucky in that Rituximab had been developed and added to make Fcr. It was a 6 month course. The Rituximab was an infusion and the other 2 chemo drugs were tablets. I laid the tablets out on the table. There were 13.

I went to take the tablets and I was terrified incase something happened and I was on my own. My husband had gone to work and he would have stayed with me.

I rang my daughter and she came and spent everyday with me. The treatment was 1 week a month. My daughter had a 3 month old baby, my grandson. She was amazing but she wouldnt let me do anything, not even make a coffee. She said if I rested it would give my body chance for the chemo to work.

I was ok the first month but the Rituximab made me feel worse as each month went by. The hospital gave me different anti sickness tablets and advice. It made a difference.

It was a 6 month course and I had a bone marrow biopsy afterwards. There wasnt any cĺl. I was umrd.

That lasted 5 years and another 3 years until I began Ibrutinib. It started to work quickly but affected my joints and muscles with pain. The dose was lowered which helped. I am in remission and the consultant has taken me off the Iɓrutinib. My numbers are ok and I have seen the haematologist who says there is no sign of it coming back. I stopped the Ibrutinib in March.

My health isnt perfect. I have ivig every 4 weeks. It is worrying stopping after 5 years but it will stop me getting resistant. I am 66. Anne uk

[CoachVera55 in reply to AnneHill]

Wow what a great testimony. 6mos for 8yrs doesn’t sound bad at all. And your advice to just live is where I am now because worrying only takes away from your joy & peace.

I guess my confusion comes from the distinction between, uMRD & Remission. Which I taught you only get that from Chemotherapy, O&V, or the new triple treatments. I guess they are used interchangeably but my real confusion is hearing that you’ll have to be on BTKs indefinitely until they stop working or the side effects are too much (which was my case) but at that point you are not considered uMRD or in remission?

So is there a name for the period where you are not uMRD or in Remissions? Is it called W&W II. Basically if someone ask me where I am, 13 months of Mostly Zanubrutinib (10.5wks of Acalabrutinib) but not able to tolerate heart & lungs side effect issues. Labs are stable 6weeks off treatment & CLL Specialist after probing, said I may have up to a year without needing treatment. This is a question for anyone, @Lankisterguy, @Floxxy?

[AnneHill in reply to CoachVera55]

If your labs are stable whilst you are taking the drugs and dont change for 6 weeks, they must think you are in remission. The consultant is leaving it 12 weeks and ringing me. I get my blood tested the day before. He said to ring if I have any problems. I have ivig in the same area at the hospital and he said he will examine me while Im there.I will get Venetaclax or Zanubrutinib if things change.

My problem is I have had cll for 23 years. I was told that there would be a few cells remaining and wont get umrd when taking Ibrutinib.

I was told in March that I was a bit low on iron and given 3 months of Ferritin. Now I am told I am anaemic. If it doesnt improve I can have introvenus iron. Worry?

I know its not easy but I still think that we need to enjoy life because whats the point of worryìng.

I feel that things arent going to be good for me. I need to take my own advice and do nice things. The haematologist has sent me a copy of the letter sent to my GP. He mentions that I need more help with the diabetes. I have now got to inject insulin. The nurse is useless. Sorry to say that but she rings and asked if my diabetes blood monitoring is under 10. She wont discuss it with me. Lets see what the doctor has to say when he sees the letter from the hospital. The fatigue I have is likely to be caused partially by the diabetes. My surgery arent monitoring it . I asked for blood tests and my hba1c was high.

Good luck. It would be great if things lasted a long time. Anne uk

[CoachVera55 in reply to AnneHill]

I think we can all take @Manzelka point of view & be grateful. You said that you hope you don’t sound miserable, I don’t think so, maybe just concerned as you should be. I am still dealing with the side effecfs from my 13mos on Zanubritinib but I am focused on enjoying this time off treatment. My journey just reinforced my trust in GOD & myself.

I will be pushing back my labs to every three month & getting back in shape for the next round although I pray for no more conventional treatments 🙏🏾

[AnneHill in reply to CoachVera55]

I managed to lose my reply. It was good that you are going to be positive and so am I. If we are both in remission we need to forget the future. Like you I have problems but I will wait to worry when I have to. Take cares, Anne uk