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Anyone have chronic lymphocytic leukemia (CLL)?
Blood Cancers & Disorders | Last Active: Jun 22 7:21am | Replies (368)Comment receiving replies
@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.
Replies to "@loribmt I know htat this is not encouraged, but I quit seeing the hematologist. I asked..."
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?
@joycelen I realize that some doctors; even specialists can be BAD. I am seeing my PCP tomorrow. She has put aside an hour to go over latest blood tests and what is next step. I think that I will see the hematologist oncologist that I have chosen and see if he is knowledgeable and attentive to me. If not and no symptoms yet; just stay with my PCP. Will keep you posted with my progress if it will help anyone else.
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@joycelen I do not encourage or suggest anyone else do this. But it works for me in this small area and with that doctor. We have a new hematologist/oncologist who just moved into the area. He followed my teenager who seemed to be having too many red blood cells and he was pleasant, thorough and excellent decision making. If I ever do need treatment, he is the one I will see. I just do not need an unpleasant experience with the other doctor.