Advice on best treatment

[Guinness4822]

I have had CLL since 2013 watch and wait. Recently hemoglobin levels dropped and a bit anemic so been advised 3 types of treatment. However left to make own choice. Guess would like to know what other people have tried and how effective treatment was.

[AussieNeil Partner Administrator]

Welcome to our community Guinness, I see that you have just joined us, although you've been living with CLL in watch and wait for 10 years. You say that "Recently hemoglobin levels dropped and a bit anemic", hence per your bio, you've been told to start treatment in the next month. Therefore I would expect that per this post, which covers the recommendations on when to start treatment, your haemoglobin is approaching 100, or there are other factors behind your consultant's recommendation. healthunlocked.com/cllsuppo...

If you'd like to share the three treatment options suggested, then members who have had one of those treatments can share their experiences, so you know better what to expect and can prepare for it accordingly. You can also search for previous posts on your treatment here: healthunlocked.com/cllsuppo... There's also a collection of very helpful posts in our Pinned Posts section here: healthunlocked.com/cllsuppo...

Given your long period in watch and wait, you probably have IGHV mutated CLL, so your consultant might have recommended FCR treatment, given you are aged under the recommended cut off age of 65 for this 6 month chemoimmunotherapy protocol. (It would help if you could share what prognostic testing you've had, particularly your FISH test results.) If so, be aware that while FCR does come with a ~55% chance of effectively curing your CLL - currently the only drug protocol treatment with that capability, it does come with an increased risk of later developing Acute Myeloid Leukaemia (AML) or Myelodysplasic Syndrome (MDS). (We don't have enough history of targeted combination therapies which incorporate venetoclax, to know if these can also effectively cure CLL, but they don't have the capacity to cause the DNA damage that can lead to future blood cancers.) If FCR was one of the recommended treatments, if you are interested in pursuing it, you'd be very wise to have your IGHV mutation status confirmed as mutated, because unmutated IGHV folk are lucky to have remissions extending to 5 years.

With respect to a choice between a fixed term combination treatment incorporating venetoclax, vs a maintenance therapy (one of the 'brutinib' drugs), with your long period in watch and wait, you can likely expect to achieve a long remission time and then be able to repeat the combination therapy.

Neil

[Guinness4822 in reply to AussieNeil]

Hi Neil,Apparently I am TP53 unmutated with heavy bone marrow infiltration and rising lgM lambda paraprotein. CLL FISH 13q14 no 17p- molecular MYD88.

Not sure what all this means I had a CT scan last week and seeing oncologist Tuesday re starting treatment.

[AussieNeil Partner Administrator in reply to Guinness4822]

- TP53 unmutated or wild-type TP53 is what you want, as it means that your tumour suppression gene is functional and will trigger the self destruction (apoptosis) of CLL clones if the DNA faults are bad enough that they can't be corrected. Having unmutated TP53 was far more important when we only had the older chemoimmunotherapy choices.

- heavy bone marrow infiltration means that you are losing the capacity to make the ~4 million blood cells per second you need for your continued good health. This is why your red blood cell counts and hence your haemoglobin level has dropped, triggering your need for treatment. Your platelets and neutrophils might also be low, which you can assess by looking at your latest CBE - Complete Blood Exam/Count. CLL treatment guidelines allow buffers for a bit more of a fall from the impact of treatment on your bone marrow, to minimise your likelihood of needing supporting blood transfusions.

- CLL FISH 13q14 (del) is the most common genetic lesion reported with CLL and is associated with the most favourable outcome for FISH test results

No 17p- (del) is what you want, because the TP53 gene is found on the 17p chromosome arm. So as with TP53, this was far more important when we only had the older chemoimmunotherapy choices.

- IgM lambda paraprotein and MYD88 are associated and it's new to me. I expect it will resolve with treatment if your CLL clone is generating it.

It will be interesting to hear the results of your CT scan, which will inform you of any particularly large lymph nodes and which, if any organs might have some CLL infiltration. It's common to have some degree of spleen enlargement, but that any any other CLL infiltrated organs nearly always respond well to treatment, dramatically so in some cases, particularly when venetoclax is included.

Neil

[Guinness4822 in reply to AussieNeil]

Thanks Neil very reassuring and helpful. I'll keep u posted.

[Thundercat2]

You received an informative reply from Neil which should answer some of your questions, but I would also ask if you have a CLL specialist doctor? CLL is such a complex disease and it's well worth having a specialist to help you with all of the options that are available.

Many here on this forum have been through treatment and you can enter the treatment names in the search box and find many posts about them.

[kitchengardener2]

Welcome to our site. Neil has given a comprehensive answer so not much I can add. All I would say is that I have had success with Acalabrutinib as a first line treatment after three years watch and wait.

[stevesmith1964]

I was diagnosed stage 4 at 56 in 2020 went straight to O and I , put me in remission into 240 days. On twice daily alcalibrutin and monthly bloods. Remission holding, have GSCF at home in fridge when neuts go off and my consultant orders IVIG if my IG drops too low. Living a full life as a stay at home dad to my 6 and 4 Yr olds.... only 2 weeks left until they go back to school .. back to golf and fishing 🎣

[Snakeoil]

With your benevolent CLL, you can potentially be cured with FCR.