Anyone have chronic lymphocytic leukemia (CLL)?

@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.

@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 @slats I just wanted to check in with you to see if you caught this reply from me the other day. It contains a link to CLL (chronic lymphocytic leukemia) discussions so you join in the conversations with other members who have CLL. https://connect.mayoclinic.org/comment/1565636/

You mentioned that your primary doctor diagnosed and is monitoring your blood counts. Primary care doctors can be terrific caring for our general health needs. However, if you’ve been diagnosed with CLL, it would be in your best interest to have be seen and followed by a hematologist oncologist. This is a specialist who is focused on blood related issues and blood cancers. Most people who are diagnosed may go years without requiring any treatment but it is important to note the stage and type of your CLL. It’s not a ‘one size fits all’ condition.
Have you gotten a referral to a specialist?
What does your primary doctor intend to do about your CLL?

@loribmt I know htat this is not encouraged, but I quit seeing the hematologist. I asked my PCP to follow and she agreed. That particular doctor minimized every symptom I told him, never checked my spleen or lymph nodes, and seemed so irritated that I was not sicker and wasting his time. Then he charged a huge sum to my insurance company. Since being diagnosed in 2020, my health has rapidly declined. I just felt like such an annoyance to him. Since dx, my white cells and lyphocytes have slowly increased. They will increase, then hold steady for awhile and then increase again. He seemed so terribly aggravated with that and literally threw my lab reports on the desk at one visit. Sorry, not sorry, but I felt my PCP could do just as good a job and so I asked her to follow me. My markers are good so I really just do not worry about it at all.

@loribmt I know htat this is not encouraged, but I quit seeing the hematologist. I asked my PCP to follow and she agreed. That particular doctor minimized every symptom I told him, never checked my spleen or lymph nodes, and seemed so irritated that I was not sicker and wasting his time. Then he charged a huge sum to my insurance company. Since being diagnosed in 2020, my health has rapidly declined. I just felt like such an annoyance to him. Since dx, my white cells and lyphocytes have slowly increased. They will increase, then hold steady for awhile and then increase again. He seemed so terribly aggravated with that and literally threw my lab reports on the desk at one visit. Sorry, not sorry, but I felt my PCP could do just as good a job and so I asked her to follow me. My markers are good so I really just do not worry about it at all.

@loribmt I know htat this is not encouraged, but I quit seeing the hematologist. I asked my PCP to follow and she agreed. That particular doctor minimized every symptom I told him, never checked my spleen or lymph nodes, and seemed so irritated that I was not sicker and wasting his time. Then he charged a huge sum to my insurance company. Since being diagnosed in 2020, my health has rapidly declined. I just felt like such an annoyance to him. Since dx, my white cells and lyphocytes have slowly increased. They will increase, then hold steady for awhile and then increase again. He seemed so terribly aggravated with that and literally threw my lab reports on the desk at one visit. Sorry, not sorry, but I felt my PCP could do just as good a job and so I asked her to follow me. My markers are good so I really just do not worry about it at all.

Hi @joycelen I completely understand why you said ‘good bye’ to your hematologist. You need to feel comfortable and be able to trust the doctor you’re working with! I’m so sorry you had that feeling of being an annoyance!
I had the similar experience with my PCP who dismissed my incredibly rapidly deteriorating health over a 3 week span. Seeing her weekly, she kept telling me I looked great and to go to Florida. The sunshine would do me good! LOL Well, that ‘lack of sunshine’ look I had was from leukemia and a hemoglobin of 4.7… 🙄 I was barely clinging to life with like a cup of red blood. Needless to say, she’s out of the picture!
Your experience with your PCP sounds like a very amicable and trustworthy partnership. She’ll have your back and if there are noted changes in your labs, she’ll give you the heads up. And it looks like, from a recent comment, that you have found an alternative Hematologist whom your son has seen. It’s nice to know you would have a better option than your previous hematologist if needed.

What was the cause of your son’s elevated red blood count?

@loribmt Two years in a row his RBCs were elevated. We were not told the first time. The second time he had to go back in and get retested and sure enough they were elevated again. That is when we saw they had also been the year before. His PCP sent him to a hematologist/oncologist because of the possibility of polythemia vera. He tested him thoroughly and did a JAK2 test which was negative. In a short period of time, his blood work was normal. The Hematologist said he thought the blood had been left out on the counter too long before being sent to the lab that the PCP 's practice uses. We were relieved and accepted that explanation. (But two years in a row! ) He does tend to get headaches so when he had a severe one I did not hesitate to take him to the ER. They diagnosed migraines.