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Is anyone dealing with CLL, Chronic Lymphoma Leukemia?

Posted by panevills @panevills, Nov 3 6:34pm

I've received radiation treatment for tonsil and throat cancer. Now the doctor wants to treat CLL with Brukinsa. Has anyone used Brukinsa? It is very expensive and comes with lots of side effects which would appear to be very life limiting. What other options are there? Is taking medication for CLL life long?

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melij | @melij | Nov 17 8:03am
In reply to @dpfohl1 "That’s great to hear. I was diagnosed in June 2024. I have chosen to enter a..." + (show)
Profile picture for dpfohl1 @dpfohl1

That’s great to hear. I was diagnosed in June 2024. I have chosen to enter a clinical trial where treatment is started before symptoms. I just had my 3rd obi infusion with no reaction or side effects. I start Venetaclax in 2 weeks. Feeling great and hoping for a long remission.

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@dpfohl1

I thought there was already research showing that early treatment isn’t useful/beneficial for CLL?
Where is this trial being done ?

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gramma62 | @gramma62 | Nov 17 1:23pm
In reply to @jacklyn "@johnwhitley how come your GP hasn’t referred you to a hematologist/ Oncologist. You should. Be seeing..." + (show)
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@johnwhitley how come your GP hasn’t referred you to a hematologist/ Oncologist. You should. Be seeing a specialist. I have AML now. 9 years ago I was diagnosed with MDS. I was a watch a see. My hematologist checked me every 6 minthe them every 3 months then gradually it progressed to
AML. I had a bone marrow biopsy several
Times over the years but the last one came back border line AML but still my counts were unusual but she started me on treatment called the 7+3. You go for chemo infusions in your belly 2 a day for 5 days and weekends off then Monday and Tuesday. I also take a chemo pill every day and the rest of the week when my infusions are done. I was put on vidaza and ventoclax. This is a new treatment for seniors who can’t have a bone Marrow transplant which is the only cure. The treatments are not bad. I mean my stomach is sore by the end of the week. But no nausea snd I eat well. It is not a cure but as long as the treatments work you can live longer. Also they can give you more time in between treatments from 4 weeks out to 6 weeks. They can also cut back on the infusions from 7 to 5. The idea is to put it in remission. After my first cycle I had a bone marrow biopsy and I was in remission. But I will always be im treatments. They have to find what they call the sweet spot where you do less treatments and more time in between and you stay in remission. I have the best care in oncology. They take Beth good care of me and we laugh a lot. I call it going to my new job. Good luck.

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@jacklyn I go see her once a year. I have blood test twice a year.

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njhornung | @normahorn | Nov 17 1:33pm
In reply to @gramma62 "@jacklyn I go see her once a year. I have blood test twice a year." + (show)
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@jacklyn I go see her once a year. I have blood test twice a year.

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@gramma62
Same for me.

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triclonal | @triclonal | Nov 18 11:31pm

The short answers are "diagnosed about two years ago and active surveillance until last month". But I don't think my case is typical. First sign of CLL was incidental discovery of a third clone putting out monoclonal IgG and serum free light chains. Much investigation by research hospital with bone marrow biopsy and flow cytometry confirming CLL. IgG and sFLC kept rising in recent months and separate igG-LPL and IgM-LPL (Waldenstroms) under active surveillance for 9 years kept dropping indicating aggressive CLL. Although WBC and ALC have been normal, we decided enough was enough and started Brukinsa. First month shows reversal of IgG and sFLC trends so I'm optimistic.

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njhornung | @normahorn | Nov 24 1:20pm

How many of you have taken advantage of the opportunity to reassure your family that CCL is not the same as AML although both are leukemias? With Tatiana Schlossberg being in the news, I reinforced that I am stable and could go years without needing treatment.

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