I am 64, Stage 0, unmutated, W&W on 3 month visits since diagnosis 2/18. I am considering skipping my visit due now and waiting until April when I have Medicare since there has been no real change in my numbers thus far. Let’s just say I was much worse now (which I doubt), would a theoretical 3 month delay in treatment be a big deal (worst case scenario)?
The reason I am considering this is financial.
Great question. How do you feel?
If it was me I would ask my doctor. Keep us posted, and good luck!
- Bobby
I have severe fatigue but that is not new - dates back before diagnosis
Is Medicare much more reasonable taking care of CLL related claims - especially regular checks?
I do not know anything about Medicare yet
If it helps .... I have "original Medicare" and a good supplemental plan (about 6 months now). My out of pocket costs since I have been covered by medicare (mostly lab tests and specialist visits) has been $0.
I thought I would hate Medicare - but it is very inexpensive and pays out very well on claims - especially if you can get a "Supplemental F" plan. The costs for supplemental plan F vary from state to state. I'm just lucky it is very inexpensive in California. Good luck.
F is the most expensive and it is being phased out in 2020. Plan G is identical except there is a deductible of $185. annually. Plan F people will be grandfathered in, but no one will be able to get it after 2020. "G" is excellent and less expensive. I would be concerned that with a dwindling pool of members, Plan F will really go up in price.
Of course you need to get a prescription plan D, and there are lots of options -- none of them any good for the newer drugs to treat CLL. Very, very expensive.
Ugh ... I have just started exploring all the Medicare stuff - seems complicated. 65 in April. In TX. Right now I have to pay out of pocket and then get reimbursed. No med coverage. Workable short term only. Hate to pay that $1000 for labs and visit if all is the same.
I think about half the supplements sold are plan “F”. In California, it is about $130. Per month. So, it depends on where you live.
Its all very complicated. It drove me crazy. It works, though.
+1
Personally I think you can wait 3 more months. They kept seeing my husband every 3 months but finally went to 6 months. If you are only
having fatigue and had that prior then why go in. Now, if something were to change, then go in. My hubby is 72yo now and has all the bad mutations. But doing just fine. Doesn’t want to do yard work anymore but still golfs 2times a week. I have Chronic Fatigue Syndrome. So I know what it is like to be tired all the time. Wish you well.
Linda
Thank you Linda. I either have CFS or fibromyalgia or both ... who knows. Sorry you do as well. I am leaning towards waiting because it costs about $1000 per visit.
I just started Medicare 1/1/19. I had great insurance before, but this past Fall I needed an MRI (unrelated to CLL) with and without contrast and my insurance denied coverage. But when I found out Medicare (and supplement plan) covered it 100%, I waited 3 months. Just had the MRI, no problem. Hope you are able to do the same!
FYI - I went with Supplement G because with F phasing out I figured G will get tons of takers and keep premiums lower.
Just for grins (not on treatment yet) I asked my drug plan how much Ibrutinib would cost; quoted US $2,200/month.
- Bobby
Yikes on the Ibrutinib! Is that out of pocket or covered somewhere? Also, I heard that an IV infusion is covered but a pill is not.
Hi Bobby - $2200 seems a little steep. Are you sure that it's not that amount for the first month only while you go through the donut hole? After that it should drop down to a more "reasonable" $600. Most people that I've talked to say that it averages out to $800 per year. Double check with your Plan D insurance.
I believe you are correct, hhk50. Yearly would be about $9,000.00.
Currently W&W but having talks for taking part in CLL17 trial being offered through CUH Cork.Ireland.
Horrible cramps
CLL FLAIR trial
Covid Antibody result opinions sought
Beta 2 Microglobulin
