CLL Progressing To Next Stage

[Spondonhouse]

Today I had a phone consult with my haematologist who informed me CLL has progressed and that at my next appt in 6 weeks’ time he’d discuss with me my options

I have to confess to being largely ignorant about the disease (call it burying my head in the sand) and wondered what these options/treatments might entail, whether any of you have had them and what the outcomes have been

Ferritin and B12 are over range owing to a recent course of B12 injections and an iron infusion

Thank you all

[Snakejaw]

Sorry your CLL has progressed, but the good news is there's a lot of options. Have you had a FISH test done? That would inform what flavor of disease you have, and which drugs would work best for you.

I have a fairly aggressive complex disease, so I'm taking two medications for a fixed duration of time. Depending on you CLL and your age there are also more indefinite courses where you basically take a pill everyday forever/it stops working. It's a pretty diverse field of drugs now, and your specialist will guide you through whats best and available.

In general side effects have been manageable with the drugs I've been on (Zanubrutinib and Venetoclax). Some body aches and fatigue in the beginning, now I'm back to boring old me. I know it's stressful hearing the news, but honestly everything I've experienced has been tolerable and it's nice to see your blood numbers head the right direction.

[Myfavoritecat in reply to Snakejaw]

May I ask, does your insurance cover these drugs? I’ve been at W&W status for 7 years, but worry if Medicare will cover any treatment should I need it.

[Snakejaw in reply to Myfavoritecat]

Good question. So I’m in a clinical trial, the drugs are free so long as I’m enrolled in it. I still pay to see my doctor and sometimes my insurance company doesn’t want to pay for mrd testing, but thankfully none of this has bankrupted me yet.

[Submerge24 in reply to Myfavoritecat]

Medicare part B, ( and your part g plan) will cover any treatment that is given by infusion AND approved by FDA for first line use in CLL. This is like $20k-$40k per month that it is covering.

For the Oral medicines, like Venetoclax for example, that are approved by the FDA for first line use in CLL, Medicare part D prescription plans will pay, but with a deductible. I have one of the cheapest ( least benefits) part D prescription plans; my Venetoclax is 100% covered after I pay the “ catastrophic event” deductible of $3500 / year. This covers what would cost at least $15k PER MONTH. Not sure if the deductible is smaller for the more expensive Part D plans.

So all things considered, Medicare is very effective for FDA approved medications.

Best of luck

[Myfavoritecat in reply to Submerge24]

This is so helpful and good to know. Thank you so much!

[scryer99]

That’s about where I was at when secondary effects (swollen spleen, lymph nodes, bruising) started to occur. You may not need treatment before such symptoms emerge, and if you are being recommended treatment solely on the results you posted I would consult a CLL specialist before starting.

See my profile for more. Good news is there are several treatment options with manageable side effects. Treatment effect is rapid and the long-term outlook is you may be able to get back to normal for a few years or sometimes more.

[cajunjeff]

Hello Spondonhouse. Since we most often look for trends over time our cll, its hard to draw many conclusions from one lab result. Your lymphocytes at 56 k are not that bad if they have been growing slowly. If your lymphocytes have doubled or more in six months, that is an indication to treat.

It is worth noting that even as a stand alone number, your platelets at 93 do meet the iwcll criteria to start treatment, platelets below 100 is the cutoff. Your hemoglobin is just fine.

The guidelines are not hard and fast rules. I suspect that your doctor will do repeat labs on your next visit. If your lymphocytes are on a doubling in 6 months pace then or of your platelets fall further, it could be time to treat. If your numbers have stabilized, then you might stay in watch and wait a bit longer. Thats my non-expert guess.

[AussieNeil Partner Administrator]

I agree with scryer99 about consulting a CLL specialist if treatment is being recommended solely on the results you posted. The only possible reason is your lowish platelet count and the trigger of a platelet count of <100 was amended in the iwCLL 2018 guideline update thus "However, in some patients, platelet counts,<100 x 10^9/L may remain stable over a long period; this situation does not automatically require therapeutic intervention." My platelets began occasionally dipping below 100, 5 years before I eventually needed treatment.

As cajunjeff notes, it's trends over time that are relevant.

Neil

[DriedSeaweed]

Hello. If you lock your post you may get more responses. Also, if you lock your post and give an idea of where you are located people can suggest institutions or clinical trials.

If this is your first treatment there are a lot of great options. Many trials are designed for people who have never received treatment. As Snakejaw mentioned you could get drugs for free.