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
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.
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.
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.
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
This is so helpful and good to know. Thank you so much!
Thank you for your comments. I’m very glad to hear you’re managing ok
No, I haven’t had a FISH test. As I said, I’m really lacking in knowledge about the disease and will have to work hard at educating myself before my next appointment
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.
Thank you
I thought my haematologist was the specialist. If he isn’t, should be seeing one?!!
He may think he is - some hematologist/oncologists do. They are not, however, always up on the latest specific to CLL, and in many situations will recommend treatments inappropriate for symptoms. Often they will follow the relevant guidelines without doing the detailed testing that can inform a better treatment choice within those guidelines.
CLL is a very heterogenous diagnosis - meaning, there's a wide amount of variation in disease presentation, progression, and treatment. A doctor who sees a number of CLL patients and has personally followed treatment to outcomes is going to be a better bet in that situation.
Consider your average small town size of 20000. They'll have one new case of CLL a year, and since many patients don't need treatment for quite some time, they'll be treating maybe one or two cases at a time. My CLL specialist has a couple hundred patients in care and clinical trial. Who's going to have more experience?
You don't necessarily need to ditch your hematologist. I saw a CLL specialist in another town initially as a consultation, and told my hematologist I was doing so. My hematologist was fully supportive (and if yours is not, that's a big red flag). Good hematologists recognize the value of adding a specialist to your team. And statistics are quite clear: those who do not see a specialist have materially worse treatment outcomes. One study indicated 40% of CLL patients are misdiagnosed and given demonstrably wrong treatment. Much of that is because they are seeing doctors who are less experienced with CLL and don't recognize that as an issue.
The excellent CLLSociety.org has a good rundown on care team building here: cllsociety.org/newly-diagno... That site also maintains a log of US experts who are open to initial consultation.
My specialist is a couple hours from my home, and my hematologist is a five minute drive. That has worked out well for me. I've switched back and forth depending on treatment stage and symptom need. And my CLL specialist got me into a clinical trial, appropriate for my particular CLL subclass, that my hematologist was not aware of.
Good luck sorting your treatment options. Treatments have progressed quite a bit and you have several good options.
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.
Thank you cajunjeff
Would it be worth posting my last two or three lab reports?
Yes, I think if you post some previous labs there are people on here knowledgeable enough about cll to give you better feedback on if you are headed to treatment based on their experiences and any observable trends in your labs. Of course your doctor is in the best position. You might be able to post you previous labs in this thread by just attaching them to a response you make.
I think your platelets might be the biggest concern based on this one lab. If your platelets have been hovering around 90 for a year or more, they are low, but stable. If you have seen your platelets going from well over a 100 to 90 in the last year or so, I think you doctor would be more concerned that trend will continue and you don't have a whole lot lower to go.
While 90 is below normal, you are still in a safe range, particularly if you have been stable there for awhile. My platelets stayed around 100 for a couple years before dropping to 50 rather suddenly on me. Now that I am treating, they stay up around 120 which is low, but doesnt put me at any unusual bleeding risk.
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
Thank you
That’s interesting to hear. What’s the iwCLL please?
The International Workshop guidelines for the management and treatment of CLL (iwCLL) is the maintained, published wisdom of the best accepted practices of managing CLL by CLL specialist researchers from around the world. It's referenced in our pinned post on When Will I Need Treatment... healthunlocked.com/cllsuppo...
Neil
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.
Thank you DriedSeaweed
How do I lock my post?
You mention drugs for free; surely the NHS covers my treatment …?
Spondonhouse, you can set your post to be only shared with this community, as explained here. Just edit your post via the 'More v' under your post and select 'Edit' as is shown in the reference replies.
healthunlocked.com/cllsuppo...
Also, this is an international community and not all countries provide drugs at greatly subsidised cost, as does the NHS.
Neil
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