New here - freshly diagnosed, glad to find this resource. My only real concern (more like terror, actually) is financial. I'll get to that in a moment...
So, I've been self-watching my condition for a while now. In the fall of 2017 I suddenly developed a WBC of 13.5 and abs lymphocytes of 8250 at age 62.
Recently in March of 2019 I was 22.8 on WBC and Abs Lymphocytes of almost 15.
I maybe had a different reaction than some people. I'm in pretty good health but have given myself up for dead a couple times in my life, one serious accident and a couple health scares which turned out to be not as bad as first thought. So I was pretty calm about the whole thing. You could think of a lot of things that kill a lot quicker and more spectacularly than CLL.
As soon as I googled and realized how complicated the management of CLL was, I made an appointment at Moffitt Cancer Center which seems to be the best choice locally.
At Moffitt I met with Dr. Pinilla-Ibarz who gave me the initial tentative diagnosis of CLL stage 0-1 (no lymph swelling or other major symptoms) pending the Flow and Fish tests. (He is a great doctor from what I can tell and I was very pleased with Moffit overall.)
The Flow and Fish were mostly pretty good news. No 13q, but negative on everything else too. IGHV is mutated.
From a little light reading I gather this is a fairly good progistics indicator, except I didn't hit the jackpot and get 13q?
Funny thing is, I'm more concerned about the financial drain than the disease itself. I live in the US, so the quality of your treatment is largely dependant upon your ability to pay for it or beg for charity. I make too much to for the later...
I'm still working but hoping to transition to retirement before I'm 65.
Fortunately my corporate insurance is fairly good, and if I retire before 65 as I have planned Florida has a pretty good Obamacare exchange, albeit off the charts expensive, as in $3500 monthly for a couple our age. (There are some cheaper plans but they relegate you to the second tier of providers.)
But, to my horror, even at $3500 a month, speciality drugs are 50% coverage after your $7500 deductible, so something like Ibrutinib would quickly start to mangle our retirement plans.
So I guess I have to work till 65 afterall or move to a state with better ACA plans.
(Fortunately it sounds like I won't need treatment for years, or at least until I make it onto Medicare.)
Hopefully the Medicare Part D plans in Florida aren't as evil and draconian as the Obamacare ones. (I'm not really griping about Obamacare as prior to 2012 I realize I would not have been able to purchase any plan, at any price, so at least it was an improvement.)
Anyway I wonder if other people took the news of CLL the way I did, obsessed with the financial implications and not the disease itself. I am in the worst possible spot in the US healthcare system - make too much to qualify for anything, but not rich enough to prevent financial ruin unless I plan very,very carefully.
And maybe not even then.
I realize from reading that many people here are really sick, so mere financial concerns about what I may or may not experience years from now sounds silly and of no import, which is why I waited until now to post this.
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TampaSteve
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It is bad enough to hear you have a incurable disease. Then you hear how much it is going to cost to keep you alive. That's the really bad news. And given all the threats to take away coverage for pre-existing conditions, it seems like the deck is stacked against you.
My best advice is to carefully look at your options. Make sure you have the right numbers. Also, do everything you can to prolong your Watch & Wait interval. The longer you stay off treatment, the lower your costs. Plus, if you work on improving your overall health, your overall prognosis is better. Also, there are financial assistance programs available. These are largely based on financial ability.
Finally, the emerging treating protocols are trending toward limited duration non-chemo regimens. It looks like a 24 months ( or less ) period of treatment, followed by a long remission. This means you might only have to pay some heavy costs for a couple of years followed by a multi-year remission at much lower costs.
I take imbruvica and am on medicare part d. a years worth of Imbruvica will cost me 10,000 dollars(actually 9999.77) .
I too worry about the cost of treatment. If the ACA is found unconstitutional by the courts that leaves existing conditions unprotected and I will never get insurance if a change is needed. Plus my husband would like to retire but I am not old enough for Medicare for 3 more years so that would leave me high and dry! My other option is to pay $2000 per month for COBRA but still need to pay about $25000 per year for meds!
The other option will be to hold off treatment no matter what until I can get on Medicare. None of these are great options so there is a lot of worry about it. Especially since I have already started having symptoms.
Your numbers and rate of rise in WBC and ALC may scare you now, but even with a "Normal" mutated profile (None of the usual CLL deletions were detected), you probably will be on Medicare for a while before your symptoms drive you to treatment. Many of us had WBC and ALC number about 10 x your current before we needed treatment.
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You may want to read this pinned post to learn more about the usual factors leading to treatment. healthunlocked.com/cllsuppo...
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And this pinned post about what you can do in the mean time to improve your lifestyle while you are waiting for that "other shoe" to drop:
As for the financial aspects, there was a recent discussion about the cost of Ibrutinib- most likely the first treatment that would be suggested in the near future (better and shorter treatments may be proven and available in a few years- when you need them). healthunlocked.com/cllsuppo...
i was on the ACA for 2 years before i retired. I paid 7000 dollars a year for a single with 6200 dollar deductible. our income was too high to qualify for subsidies.
there are also 2 parts to the aca. if your income is low enough not only do they subsidize your premium they also subsidize your co-pays and deductibles.
Thanks everyone for your replies! Those costs I quoted are unfortunately are the costs in Florida, and even a $3500 a month gold plan is pretty crappy compared to my (only average) corporate insurance which costs about half that and would cover Ibrutinib for $100 a month vs a 50% copay for ACA. Florida Blue Cross is a non profit (sort of) but the risk pool that they have to insure is apparently older and sicker. I know in some states the costs could be a lot lower.
There are cheaper plans here as low as $1700 (for 2 of us) a month but they are narrow networks that won't cover specialized hospitals like Moffitt Cancer Center or travel out of state to Boston where we tend to go if somebody has a really bad or complex health scare.
Because of this disease I have decided to work an extra year and a half until I am eligible for Medicare! Even though I *hopefully* won't need treatment for a while, if I fall off the normal curve I don't want to take the risk.
If you are currently on corporate insurance - ask your specialty pharmacy about any grant programs that are available. I'm 62, and because I have corporate health insurance - I qualified for a program in which my co-pay for Imbruvica is $10 per month. My pharmacy is Diplomat Pharmacy, and they found me this program 3 years ago. I've been fortunate and have had very few side effects on Imbruvica - allowing me to work. I plan on working until I can't - and taking advantage of corporate health insurance.
We have had the same concerns and continue to. My husband was diagnosed in March 2013 and had six cycles of FCR beginning in November of that year. He was and is on my health plan at work, which is VERY good. We had almost NO out-of-pocket costs despite VERY expensive treatment and complicated follow up care due to dire consequences of the chemo on his bone marrow (he is, thankfully still in remission). That said, the sword of Damocles hangs over our heads as it is reasonable to expect a recurrence some day. We would like to have me retire this year (at 57) so we can enjoy more time together (since we learned no one can be sure how much time they have) but the insurance complications are TERRIFYING. Ever determined, my husband keeps trying to puzzle out decent coverage. The U.S. medical system is a horrible mess, shameful.
Hi Steve, I hear you about the conundrum you have found yourself in. It is stressful to worry about how much a life-sustaining drug like Imbrutinib costs- this issue is something I really worry/obsess about, too. One action I take has been to meet with my member of Congress to outline my situation and share my concerns about the prohibitive costs of this medicine and to hammer home the gut- wrenching feeling of having an an incurable cancer and to hear politicians talk blightly about overturning the ACA, etc. it is important for our representatives to know how their decisions totally impact people. They are not mind readers and hearing from you helps flesh out their knowledge. Be sure to take a typed-up summary of the costs you predict to have once you are on Medicare. I wish you well, Steve. Carolyn
Thanks Carolyn that is great advice about talking to your congressperson. Unfortunately not helpful in my case as mine is a complete idiot barely capable of anything beyond grunting his party line that anything tainted by Obama has to go. I exchanged several emails with him and while he did respond personally without staff they just sort of have a religious belief that anything other than a purely free enterprise healthcare system is no good.
No amount of evidence or persuasion is useful because they just don't look at evidence based analysis.
Not to say Obamacare is perfect it needs a lot of fixes. But my daughter had a near fatal cancer at 2 and was cured. I can say cured because she is 34 now. Previously we were unable to obtain insurance - at any price - because of her pre existing condition.
Nowadays she has ACA compliant insurance for a very reasonable $650 a month.
For older folks with serious conditions though in many states (like mine) its inadequate.
I feel like I have paid hundreds of thousands into insurance during my life and it's not fair to deny me coverage now that I am going to need it.
Steve, I am so happy learn that your beloved daughter is well. Likewise, I feel my Representative doesn't listen but at least he hears from me. Meanwhile, try to enjoy the sunshine today.
In the uk we have to pay national insurance from our salary. Im so grateful that I can have treatment without paying. We can only have treatment that is available on the nhs and dont have the choice you have. Because Im relapsed I can have ibrutinib. Firstline it is chemo fcr or hope to get on a drugs trial.
Though we try to stay away from politics it has a drastic affect on our health care. Trump has called for complete end to the ACA, with no replacement plan in place.
There is a discussion about ending coverage for pre-existing conditions, capping Medicare coverage and many other scary things...
It's an ugly world out there right now- protect yourself!
My husband and I are in a 33% tax bracket. We were on my teachers BCBS before Medicare.
At age 65, i kept BCBS as a Supplementary insurance, not secondary.
First, Medicare says what’s allowable. Then, Whatever Medicare doesn’t pay...BCBS picks up the balance of what Medicare allows...in other words our 20%.
As the Medicare Part D is for your pharmacy only( it’s seperate from Medicare A and B...we have Aetna for Part D. His D plan covers his Ibrutinib and other RX mostly. There is a grant type thing that pays like 2500.00 up front for Ibrutinib, depending on your income bracket. We pay almost $600 a month for our part of Ibrutinib and then Aetna pays the balance, about $11K monthly.
YOU pay for Aetna insurance out of your checking account
You pay your part for Ibrutinib out if your checking account.
You pay for Medicare out of your SS check before you draw benefits.
So far, this is affordable and we haven’t been bankrupted. Yes it’s expensive but what’s the alternative?
Oh and the BCBS comes out of my retirement check from teaching.
Having the BCBS allows us to choose our doctors. We are not having to allow Medicare to choose one for us.
I don’t know who or where Medicare is... or Obamacare... it’s kind of like the ICloud, somewhere in outer space you’re not sure of.
I like having the BCBS SECONDARY. I know where their office is and can drive there. We didn’t have to leave our favorite Oncologist because someone on a satellite in outer space decided that for us. Yes it costs more but we have adjusted and are humbly grateful for the newer drugs that offer life and the ability to get them.
God bless you in your journey.
By the way my hubby is p53 and 17 and Ibrutinib is a blessing from God.
TampaSteve, actually the financials in USA are enough to make you sick, so your concerns are justified. With all the debate on health care in upcoming 2020 elections, it is hard to tell where we will end up. Hang in there, you should have plenty of time to get this sorted out.
Scott, I hope your body is accepting the Imbruvica and you will soon be able to shake that extreme fatigue....that is awful to deal with while trying to work. I have been on Imbruvica 420 since the first part of January and I am feeling great....the best I have in years!
To be totally honest I didn’t think I felt bad but I guess the fatigue just creeps in and is just soon becomes the new normal....boy was I ever wrong! You are so very young and I can’t imagine how you are dealing with it.
Please know that I do care and I am wishing you the very best. Have you had many side effect with the Imbruvica? 🙏💕☘️😍
I think you are my CLL twin. I'm exactly where you are - age wise and count wise and years til Medicare. I'm not going to retire until I'm 65 especially after being diagnosed last summer. I too have no symptoms and hope it stays that way for a long time. I have actually stopped reading a lot of posts because they frightened me so much, but I will follow the replies that you are getting.
When my window of opportunity came and because I an IGHV unmutated, I chose to enroll in a clinical trial that provided me with a drug that that was previously proven more effective than the current approved therapies. I kept my private insurance rather than trying to qualify for medicare or medicaid because the later would not participate in paying for trial therapies.
It is my guess that if I would have chosen the offered therapy at my local provider, I would at this time be experiencing a sub standard response and filing a medical bankruptcy.
As it turns out, I paid significantly less for a more effective treatment. My insurance covered most of the costs not paid for by the trial sponsor, and although I had to travel, much of my lodging and travel expenses were tax deductible.
At this time I am responding as expected, my quality of life has improved greatly, and I need to give less energy to the concern of financial stress.
I am so happy to hear you have no side effects....I have also noticed my hair a tad curlier and I am I fine with that...I am hoping it will thicken a little as it has become so thin due to the Leukeran I have taken in years past.
I am drinking 3 1/2 L.of water or about 119 ozs. And it is a struggle....I make myself chart it....I am not fond of water. I had to drink a lot of water while on Leukeran, however, when not taking Leukeran I drank far too much coffee. I now am drinking only 12 ozs. of coffee each morning. My kidneys are working but one is a lot smaller then the other.
I have my labs, doctor’s appt and IVIG infusionthis coming Tuesday I am actually anxious to see how my numbers are doing. My WBC was down to 62.2 from over 90. So slowly headed in the right direction.
They told me to flavor my water by adding Gatorade but I don’t like that as it reminds me of the colonoscopy preps. So I have been using some tart cherry juice and apple cider vinegar. I don’t want anything with sugar. If you come up with any ideas how to take the curse off the water drinking I sure hope you will share!!! Good Luck! 🙏💕😍☘️
Im in uk and I buy lemon and lime flavoured sparkling spring water. Inexpensive in 1ltr bottles. Has small amount of sweetener. Very refreshing. I imagine you can get similar. Makes a change.
Thank you...I do try to mix it up with infusion of fruits and some vegetables...I avoid any carbonation, sugar and all sweetners. I too get IVIG every 4 weeks and that along with the Imbruvica I am in a very good place. Ideally appreciate you reply as we are all in this together! All the best to you! 🙏💕☘️😍
I try to keep food natural as well but I have trouble with a sweet tooth. No will power.
I have ivig and ibrutinib is being organised now. They are looking at my meds and may have to alter things. I take epilepsy meds. No fits as its controlled. Im glad you are doing ok. Anne
How long have you had CLL? Have you had any treatment thus far?? They adjust my meds a tiny bit but it is working great...I hope they are able to get you on Imbruvica.....it has really made a difference for me...I have been on it going four months and the numbers are slowly dropping. All the very best to you! 🙏☘️💕😍
Iv had cll for 18 years. I was 43 when diagnosed. It was in early stage and was 9 years before I had chemo fcr. That was the best at the time.
I had 5 years remission. It has been coming back for 3 years. Consultant said to start Ibrutinib when I went Tuesday. I just have to wait for appt in about a week when they sort out the meds I take.
Im 61now. I will definately have it. Im really hoping I get more energy. Its midnight here in uk. Think Id better go to bed! Anne
Scott I couldn't stand plain water either and the thought of drinking as much as they told me I needed to drink I started looking for flavored water. I bought a selection of different brands and finally found that I liked Nestle's. I don't know about sugar but it had zero calories. But THEN I found another brand that I actually like. It's Propel and I really love it. Again I don't know if has any sugar but it has zero calories. My favorite flavors are Berry and Grape. Sometimes I mix in some Kiwi/Strawberry in with them.
"Stur" brand flavor drops are good. All natural no sugar but has a bit of good stevia sweetener. Can get in US at Walmart & think Amazon too. Lots of flavors & zero calories.
Steve, since you're in the US, I would highly recommend the National Institutes of Health in Bethesda, MD. Yes, going to a local doc and getting Ibrutnib is more convenient, but when I started treatment in trial for Ibrutinib at NIH, they literally took care of everything. Flights, per diem, medication, labs, etc. There are no charges for any of it + you have the added benefit of having access to some of the best specialists in the country. Even now that I'm off the trial and Ibrutinib, I still call my doctor there to get her guidance on the next steps I should take with CLL treatment. Visits up front can be a bit of a pain, but eventually, they were quarterly and my wife and I used them as opportunity to explore the nation's capital/visit with friends. Best upfront treatment experience I could have hoped for.
DoNorth that's great advice. I have a vague idea what the NIH does but always considered it pure research and such and not something a patient interacts with. I am keenly aware that where you go to get treatment predicts your outcome. When my daughter was 2 we were told there was not much chance of saving her from an aggressive cancer at a university hospital in a small city. We stole her back from the hospital and went to Brigham and Women's in Boston where she was treated successfully and she is still cured 32 years later. We ended up spending about 4 months in Boston.
Right now I am on watch and wait and hopefully will be for some time. Moffitt is rated as one of the best cancer hospitals in the South and is nearby. Dr. Pinilla-Ibarz is enormously personable as well as apparently quite respected in the CLL field, so I have the intersection of local convenience and quality care.
But no matter how highly I think of him and Moffitt I was always thinking that when it comes time for treatment I will be looking at all options, and I'll definitely remember to check out NIH as well!
(Hence my preoccupation with keeping an insane level of insurance that will allow me to consider every facility, at least in the USA)
Sorry I haven't been in touch lately - have breathing issues - COPD not related to CLL. I'm really glad you seem to be doing well. Try to keep fit (walking, treadmill or anything that gets you moving). Keep me in your loop. Jay
When the time comes for treatment clinical trials are also an option. My husband’s drugs are 100% covered and we are only responsible for the medical apts and labs.
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High WBC and it does matter to my doctor
PAN Foundation has Reopened its CLL (chronic lymphocytic leukemia) Financial Assistance Fund
CLL/Enlarged Lymph Nodes
Five-year results for the iFCG regimen: first-line treatment of CLL patients with mutated IGHV and without del(17p)/TP53 mutation
New To CLL and I had Covid in March 2020.
