Need Advice

[laldoroty]

My ALC has steadily increased this year. 3.3 Jan. 2019, 7.8 June 2019, 15.2 Sept. 2019, 29.5 Dec. 2019. My RBC was 3.26 and platelets 108 in Dec. 2019. last week I had a CT scan and Wednesday I will have my blood tested again following I will see my Oncologist. Does any one have any suggestions as to what questions I should be asking. I am very nervous about this meeting as my ALC doubling times seem very rapid.

[cajunjeff]

Your numbers do suggest that treatment might be nearing. Lymphocytes doubling in 6 months is one indication as are platelets dipping below 100. With your rbc at 3.26 I suspect your hemoglobin is low as well. Hemoglobin dipping below 10 is yet another indication treatment is near. Your doctor will likely look at trends rather than a single snapshot.

Questions I might ask your doctor would be when is treatment likely, what treatment will be recommended and are their any clinical trials that might be good for you. I would also get a second opinion from a specialist to make sure your treatment choice is best for you. Good luck. In the US, outside of a clinical trial, most people with your presentation and age would likely start on Ibrutinib as their first treatment, not a bad choice.

[AussieNeil Partner Administrator]

Further to Jeff's reply, when you may need treatment will depend on trends from now on. The critical parameters to watch are your haemoglobin and your platelets. Lymphocyte doubling time is more important after it exceeds 30, because one of the standard patterns for lymphocyte growth recognised in CLL is the sigmoid curve, where it grows and then flattens out. We have members in our community with lymphocyte counts of 300+ who are still in watch and wait.

If you look at the iwCLL guidelines section 4, healthunlocked.com/cllsuppo... , you'll read that specialists look for more than just lymphocyte doubling time under 6 months as a condition for starting treatment. Basically if you are otherwise well, they will just monitor you more frequently via blood tests and physical examinations. You don't yet know whether your bone marrow involvement (platelets, red blood cells, neutrophils) will confirm the need to start treatment or not.

The latest revision of the iWCLL guidelines allows the platelet count to drop below 100 provided it remains stable, but leaves the trigger level to the specialist's experience. This is where you need to have someone who sees lots of CLL patients so you know that they will be able to correctly assess the sweet spot for starting treatment, leaving you with enough leeway so you can hopefully avoid the need for red blood cell or platelet transfusions, but giving you enough time to defer the time to treatment to see if your CLL stabilises. We are getting to the point where modern drugs come with acceptable side effects so that earlier treatment may be preferable for some, but unfortunately we don't yet know which patients will breeze through treatment and who will struggle.

Ask your oncologist how many. CLL patients they see, what treatment they would recommend in your case and why and how much experience they have had with that treatment protocol.

I see that you reside in Canada, so access to non-chemo drugs like Ibrutinib will depend on your FISH and TP53 tests. You would not want to have chemo (probably BR in your case given your age) if you have a 17p del result in your FISH testing or a mutated TP53 gene. Acalabrutinib, a more selective second generation version of Ibrutinib ( i.e. hopefully less side effects), was approved last year in Canada for CLL treatment, but province funding will be the issue.

I note that you get blood tests done in the USA too. IgHV mutation status won't influence your choice of treatment in Canada, but you are likely to have a longer remission on BR with an IgHV mutated result and unlike FISH and TP53 testing, your IgHV test result is unlikely to change over time. If you find out that you are only eligible for BR treatment and are IgHV unmutated, then it would be in your interest to see if you can get access to a clinical trial, which might involve moving to a larger treatment centre.

Neil

[Big_Dee]

Hello laldoroty

You are getting close to possible treatment depending on the rest of your blood tests. I would suggest pushing your doctor to discuss treatment options. My Hematologist/Oncologist was reluctant to discuss treatment almost until I did not have much time for study of options. As a result, I missed out on a several trial options. You will need to process a lot of information and may also want to see a CLL Specialist to get best treatment for you, I did. Blessings.