Anyone have chronic lymphocytic leukemia (CLL)?

I was diagnosed with monoclonal B cell atypical CLL Trisomy 12 Kappa 6 years ago. I have been on 2 chemos and an immunotherapy drug every four weeks....started every day with the chemo. It is working fine, but I am also fatigued....and have trouble sleeping. SMiles.

@gailmarienewton
I've heard that the treatment itself (especially chemo) can cause fatigue. Hopefully that will lessen after treatment is done. I googled "monoclonal B cell atypical CLL Trisomy 12 Kappa" and that one is complicated! Wishing you the best.

@tomatack
My IGHV mutation status is "mutated", thank goodness. Cytogenetic abnormalities showed abnormal signal patterns consistent with mono-allelic deletion of 13q in 88/200 (44%) of cells analyzed. All this indicates "long survival". I just hope I don't have to live the rest of my life feeling like I have the worst hangover in history (and I haven't drank alcohol for 10 years)!

Thanks for letting me know about Dr. Sharman. I'll check for appointments there too.

@loriskt 13q mutated.....best markers you can have. Nearly 40% of mutated patients never need treatment. Not so fortunate for those of us who are unmutated. It's like 2 completely different diseases. I've interacted with a few of Dr
Sharman's patients on Healthunlocked. They all love seeing him and the Williamette clinic is evidently easy access.

@loriskt I was diagnosed 5 years ago. My numbers have steadily climbed and then will stall for a while. I am so exhausted it is unbelievable to me. I find it so frustrating that doctors continue to say it is not from CLL. A few years down the road I think that research will show that is not correct.

@joycelen
Yes, it is very difficult to accept that this level of fatigue is going to stay with you the rest of your life. Every day, I feel exactly like I used to feel when I drank too much (for me it was only two drinks, and I only drank when I went out on the weekends, and was much younger), and the hangover lasted two days.
You know, I think that just the thousands of people who have CLL stating that they have horrible fatigue is research enough. That's what I am going by. If we wait until research catches up, many of us won't be around to benefit.

@tomatack
Yes, I am very thankful for those markers. By the way, I contacted the CLL Specialist's office at OHSU in Portland, Oregon and was told that unless Kaiser gives a referral, the initial consult would be $600-$900, and she said Kaiser doesn't tend to give referrals. I'm sure it is because Kaiser considers their oncologists to be top of the line and there is no need to go elsewhere. And they may be top of the line, but I should be able to see a specialist if I want to. This might be what makes me leave Kaiser. I don't usually say things like this, but I got so upset, I said "Well, I may as well just die then!" and hung up. It just gets so frustrating! Then I felt horrible for burdening the poor woman with my anger. Oh boy.
I assume other people read these posts - does anyone know which insurance plan for old people like me (72) is a good one? I've been with Kaiser for over 20 years, so I have no idea how it compares to other companies.

Hi @loriskt

You might think about calling the facility you want to see and ask their business office about insurance recommendations. Have you considered medicare? A nurse at a Mayo facility (where I was getting an IgG infusion) said that she thought it was good. I've heard this from at least a few others (brother, also someone on CLL) as well. I just signed up for it – admittedly, it was a pain, many options to research, and now I am going to be paying 3 companies instead of just one (via my old employer). Beyond that I am expecting very good coverage and freedom to choose who I see. TBD if that'll be my reality. Maybe discussions on health insurance should be in a different thread?

I hope this helps!

Greetings! First, you are not old, seasoned well. I am only 68yo. I have Medicare and United American as my supplement. I've not had problems with either. I would also suggest that you checkout The Assistance Fund. They are lifesavers.

@mrgreentea
Thank you for your response. I'll search for a thread that specifically talks about insurance options. It's always good to be able to ask people with different insurance companies what coverage was refused and their experiences with the service. For now I am going to wait until I get the "second opinion" from the specialists at CLLsociety.org. If they tell me the same thing my current oncologist is saying (I doubt this), I will probably stay with Kaiser. The thing about Kaiser and their Medicare Senior Advantage plan is that they take over the Medicare part too so of course you have to go through them for everything. So far the Kaiser plan we are on has been great (no deductible, very few co-pays). I just want to be able to consult a specialist when I feel I need it.