How do they decide which treatment?

[Myfavoritecat]

Hello. Back on August 21 at my bi-annual hematology checkup, my hematologist said she wanted to see me again in six weeks because my WBC had gone from 25.1 (last February) to 45.8, and if it continued to go up we might have to start talking about treatment. I have been in W&W since 2017, and this is the first time some concern has been raised. At the same August appointment my absolute lymphocytes were at 36.18 (was 18.57 in February) so this may have been part of her concern.

I asked her “would treatment mean chemotherapy” and she said no, it would probably be some kind of antibody IV injections and pills. Since I’ve heard people on this site talk about chemotherapy as well as other therapies, what makes a hematologist recommend chemotherapy over other treatment? FYI last month I had no enlarged lymph nodes and my spleen was normal. And my WBC count jumped around between 25 and 40 after my appointment during a hospital stay after surgery in late August. I’m feeling tired, but I attribute it possibly to still recovering from abdominal surgery. I see my hematologist’s PA on October 7 for follow-up bloodwork. I appreciate any insights and words of encouragement.

[BigfootT]

Myfavoritecat, Chemo is hardly ever used as a frontline treatment these days. It sounds like your doctor is thinking Venetoclax and obinutuzumab. The O is an IV anti-CD20 monoclonal antibody infusion and the V is a bcl2 inhibitor pill.

They start with the O and then add the V in a slow dosage ramp up. It's usually a fixed duration regime for a year.

Many here have been on that treatment and can add specifics.

I'm still W&W. Bigfoot

[AussieNeil Partner Administrator]

Some CLL specialists may still recommend just one chemo treatment, namely FCR, (more specifically it's chemoimmunotherapy, because of the R - rituximab, an artificial antibody), for the treatment of mutated IGVG CLL. That's because it's currently the only treatment capable of delivering extremely long remissions - up to 23 years, for about 50% of those who have this prognostic marker. See: healthunlocked.com/cllsuppo...

Of note, ideally you need to be no more than 65 to endure FCR treatment and there is a higher risk of subsequently developing Acute Myeloid Leukemia or Myelodysplastic Syndromes (MDS), a group of blood cancers characterized by the bone marrow's inability to produce enough healthy blood cells.

Neil

[Myfavoritecat in reply to AussieNeil]

Thank you so much for this explanation.

[Skyshark]

The choice/approval for chemo is mainly based on cost. France, the Netherlands and some provinces in Canada still use it.

It's no longer the first treatment when there's a choice.

The only effective chemo is FCR, which gives an "effective cure" for 50% of mutated IgHV with wildtype TP53 and without complex karyotype that are fit and under 65. This is a very small proportion of patients at first treatment. When the typical side effects that can extend long after treatment are explained most patients will shy away if offered an alternative.

AntiCD20 monoclonal antibody Obinutuzumab and BCL-2 drug Venetoclax are usually well tolerated and side effects don't last long after treatment ends. The first 9 weeks are quite intense with an IV or change of prescription requiring blood tests and consultation every week. After that it settles down to once every 4 weeks and towards the end if it's going well every 8 or 12 weeks. Two of the more common side effects are low neutrophils or platelets. Low neutrophils are treated with injections. Low neutrophils make infections high risk and IV of antibiotics may be needed, urgently needed within an hour if temperature exceeds 37.5C/99.5F. Low platelets increases risk of bleeding, it's treated by dose suspension or reduction and if very low by transfusion.

[edit] corrected mutated

[Nucleusman]

difficult to comment but in most cases tablets instead of chemo. I take Acalabrutinib (Calquence) and been in remission for over a year

[Bikram21]

I would for sure be seeing a CLL specialist to determine whether or not treatment was now necessary. Best of luck to you.

[Quarry]

Neil, Newdawn - do correct me if I am being stupid!

But, Myfavoratecat you mention you are recovering from abdominal surgery. Not sure what / when surgery was, but your body might still be in shock / thinking it is fighting a major infection. If so, it does this by increasing whites, so all your white numbers would rise.

Whether this accounts for all the rise (or it is just co-incidence that CLL has picked up at same time) , but there is a chance in 6 weeks, your white numbers will be down from current levels.

[Newdawn Administrator in reply to Quarry]

As Myfavouritecat indicated Quarry, their WBC did jump around slightly during the period of the abdominal surgery and this is indeed entirely normal. It’s the reason why CLL treatment should not be based purely on lymphocyte levels taken from a single point in time. Trends are very important and give a much more reliable picture of whether it’s genuine CLL progression.

Newdawn

[JerrysGirl3 in reply to Quarry]

Three times I have had my wbc suddenly go up and all the times were due to an infection or other, outside of leukemias. Fortunate for me because I don't get fevers when I have infections.

[Myfavoritecat in reply to JerrysGirl3]

Thank you! Good to know.

[FiArt12X]

You have received so much great information and suggestions. I’m going to agree with the individuals that have suggested seeing a CLL specialist. Your location in the US would determine availability of seeing someone. There are many Great ones.

I often suggest people seek out the CLL Society. This is a free website that offers substantial information and insights. There are lists of accredited CLL treatment centers across the country. You can obtain free 1/2 hr. consultation with a specialist (I had a second opinion from CA who took 45min-hr). It’s worth the time. Also, wonderful support groups (many zoom or hybrid).

All the best in obtaining the most effective timing and type of treatment appropriate for your CLL