I was diagnosed in 2019 with CLL & told to watch & wait. Blood counts not too bad. My symptoms till recently: a tendency to infections (solved by drinking the juice of 3-4 limes/day in lots of water) & a slightly enlarged spleen.
Recently, my hematologist found a big mass in lower-mid abdomen. He & I could no longer palpate my enlarged spleen & I happily thought it had returned to normal! But the mass turned out to be my spleen—so big it dropped way down, confusing everyone. It makes it eating a biggish meal uncomfortable & there is danger of rupture or blockage of another organ.
I'm going in a few days to a Clinic. My options may be 1) Ibrutinib, Acalbrutinib or Zanubrutinib, or Obinutuzumab plus Venetoclax (following NCCN guidelines) or 2) removing my huge spleen (8 x 3.5 x 5.5") , a surgery not done as much now as in the past.
The meds reduce the spleen, but are super-expensive. My portion could be $118/day and I'd take them a long time! If I have to become a pauper to use the meds (which have other side effects besides poverty), I don't think I'll do it. Surgery seems far preferable.
If any of you have feedback or ideas, I'm eager to hear them.
Thank you.
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LadyLuckyLuna
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Ask your haematologist if localised radiation therapy could be tried. The NCCN guidelines do allow that for SLL and it can be used to shrink enlarged spleens. You don't really want to have a splenectomy if you can avoid it.
For less severe damage, modern thrombostatic surgical or radiological techniques can sometimes permit partial preservation such that the entire spleen need not be removed.
It might help the group to better understand your situation if you add more info to your bio. Your mention of Medicare tells us that you're in the U.S., but we don't know what your genetic markers are. CLL treatments are usually tailored for the specific type of CLL (13q, 11q, 17p etc., along with IGHV mutation status). The more info you can add to that bio will help others help you. Even including your approx age can help, since some treatments can be hard on older people.
I'm also in the U.S. and have been researching Medicare. I was completely overwhelmed by its complexity. It turns out that there are free counselors who can help navigate this stuff. Each state has its own system, so if you want info about what U.S. state you're in (even in a private message), I'd be happy to help you find someone. Another great resource is the finance dept at your hospital. My CLL specialist's research nurse had them call me, and I was AMAZED by all the info and resources! Are you seeing a CLL specialist or just a regular hematologist?
I'm an auditory learner, so I found some youtube videos that helped me to better understand the Medicare system. Medicare Specialist Stephanie Abt of Abt Insurance Agency has several videos that I found really helpful. I'd been reading this stuff for a month, but after hearing it out loud, it just clicked. youtube.com/watch?v=sshK1P7...
Hi Neurodervish. Thanks for this. When I go to the well known M Clinic in a couple days I'll see a CLL specialist. I will update my profile about Medicare. It does have my age, 75. I don't know what gene deletions I have. but I suppose I'll know soon. I did find that free Medicare advice service in NC, which you mentioned. I'm a visual learner, definitely not auditory! But I'll check out the video. Thanks so much for your encouragement.
The Leukemia and Lymphoma Society (LLS) here in the US just announced grants last week for those with CLL. I had some tech issues with their platform to apply and so I called and this absolutely lovely woman worked to get me applied over the phone -- and while still on the phone I got approved! The Co-Pay Assistance grant is for $4,500 for one year and can be used for medical expenses and prescriptions related to CLL and even for monthly health insurance premiums. I'm young so I don't quite know what eligibility is for those on Medicare or other benefits, but I highly recommend reaching out to them. They have other grants available too for $100-500 at one time. Once you are in the portal, it's incredibly easy to apply to other grants as they become available. I just checked my portal and I already have 2 of my claims approved that I submitted last week.
Health insurance in America is a byzantine pyramid scheme (how's that for merging two ancient references!). I hope this helps.
You might also consider clinical trials for new drugs/new combinations of drugs. Some of the trials underway are working with medicines close to approval from, or already approved by, the relevant US authorities. They're not all completely unknown drugs with unknown side effects.
One advantage of clinical trials is that the sponsoring drug maker usually picks up most if not all of the trial costs. You also are getting newer treatments that might be a good fit for your situation.
One disadvantage of clinical trials is that they tend to take more patient time and energy -- lots of testing and monitoring involved. You also are getting newer treatments that might not ultimately be a good fit for your situation.
I'd ask your oncology team about options that might make sense for you.
Hi Scryer and thanks for this info. Sounds like the most efficient thing to do would be ask my care team about trials. I looked at a US government site a while back and it seemed a bit difficult to navigate, although not bad. Thanks again for your reply.
You still need to ask about costs as I hear some US trials you pay for the drugs that are not under test. If randomised to standard of care they might only pay for tests.
Thanks again for all the replies & I hope people who replied can read my update here.
I just got back from the well known M Clinic (hematology/oncology area). Everyone was welcoming and efficient. Beautiful campus.
Staff called me a day or two before with questions about records I'd sent—good to know they were preparing. My visit took less than 2 hours. There was no talk of removing my spleen—that doesn't address the underlying disease, I was told. When I said my co-pay (Medicare Part D) for targeted therapy was huge, the doctor suggested a Chinese product, Brukinsa, aided by a program that makes it inexpensive or free, myBeiGene.
When I returned home I learned about a study comparing the targeted therapy Nemabrutinib with FCR and BR that pays for everything. Problem with that is I don't want to take the FCR or BR (chemo) due to severe side effects, so if I don't get put into the Nema arm of the study (randomized) I won't want to participate. The URL for the study is below.
So I'm ping-ponging between these two options and hope to start shrinking my spleen soon!
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Anyone know if CLL 10 trial (FCR v Ibrutinib+R) is open for recruitment anywhere in UK?
Stomach heavy is due to a swollen spleen? 
Do I trust that my onc will choose the best treatment for me, ask for a list of alternatives to research, or resist treatment altogether?
Need your help on out of pocket cost for treatment plus to say hi to everyone
CT scan of abdomen pelvis and chest is that a basis for starting treatment?
