Coming off medication

[julianlydes]

I’ve been on Acalabrutinib for 10 months. WBC has dropped from 101 to 12.1 which is obviously good news. However my haematologist tells me even if/when WBC reaches normal I will continue on treatment. Has anyone had a similar experience and eventually come off treatment?

[uide3095]

Hi, I am also on Acalabrutinib and understand the same as you, my consultant has told me it’s for life or until toxins may start to cause an issue with the organs in my body, when or if this happens then the treatment will have to change and there are others already out there and new ones being developed all the time for CLL/SLL. As mine is SLL it shows in the Lymph nodes being swollen and not very high in the blood, however during treatment the Acalabrutinib detatches the leukaemia from the bone marrow and flushes it out through the body which then shows in the blood, he had said after about a year the blood results should start to show normal as well as the lymph nodes reducing to vertually nothing but the Acalabrutinib is still taken to keep pushing the Leukaemia back. I must say though after only 5 weeks back on the Acalabrutinib after having Covid they are reducing rapidly again already. I guess all consultants may have a slightly different view which would be interesting to hear, hoping you continue to get the good felts Will

[lankisterguy Volunteer]

Hi julianlydes,

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I am in the same situation as you and uide3095 , I started Acalabrutinib / Calquence in January 2022, and what your doctor has advised is very common among the CLL experts around the world.

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As you may know, CLL is not curable, except for SCT (Stem Cell Transplant). So when your blood tests are normal there are still many CLL cells circulating in your body.

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At some point your doctor may start using a test called MRD (Minimal Residual Disease) that can find one CLL cell out of 10,000 leucocytes. Then there is an even more sensitive test that can find one CLL cell in 1 million. Even when that test says UnDetectable or UnMeasurable, there can still be many CLL cells in the Billions of blood cells in your body.

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Many patients need 5 to 7 years of Acalabrutinib to reach that point, and then some doctors might suggest a treatment pause that could last a few years, but the experts are divided on whether to stop or continue as long as the CLL is well controlled and there are not troublesome side effects.

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Len

[kitchengardener2]

I too am treated with Acalabrutinib. I began treatment in August 2021 when my WBC was 250,this began dropping within four weeks. I had my latest blood tests last weeks and spoke to my consultant yesterday. She said that she is delighted with my bloods, my WBC is now 11.7 and Heamaglobin 120.When I began treatment, I asked how long I would be taking the Acalabrutinib and she just said 'for as long as it is working '. By that I assume she meant for life but I am quite happy to pop my morning and evening tablets if it keeps me 'normal '.

[JLJC in reply to kitchengardener2]

💪🏼🌷🌞

[stevesmith1964]

HiMy oncology team have told me I am on acalabrutinib until it stops working. I was diagnosed stage 4 in Nov 2020 6 cycles of Obinatuzamab with Ibrutinib, the once in remission I was moved to acalabrutinib. All good , living a pre covid , pre cll lifestyle and enjoying every minute , I am 58 and a full time dad to my 4 and 2 Yr old.

[GargR]

Ah, yes, same here. Seven months on acalabrutinib every blood count marker seems to be normal. But no, the haematologist says that six days break from medication will lead to worsening of the condition again. Stay in high spirits.

[Eucalyptus22]

I had to come off Acalabrutinib for 2 weeks and when tested after that, ALL of my blood markers had improved. Now that I am back on it, it will be interesting to see the status of my blood.