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Anyone have chronic lymphocytic leukemia (CLL)?
Blood Cancers & Disorders | Last Active: 1 hour ago | Replies (305)Comment receiving replies
@loribmt
An MD was covering for the NP we see. The MD communicated with my husband via Mychart about his yearly bloodwork even before our physical appointment on 5/5 and said she wants him to see hematology/oncology. We have an appointment for 5/12
I was wondering, could you tell me what to expect at this first appointment? Do they do their own labs there? Do you think we’ll have answers at the first appointment. This is weighing heavily on us. Thanks in advance.
Replies to "@loribmt An MD was covering for the NP we see. The MD communicated with my husband..."
@rimmy2 depends on the bloodwork- what were the WBC and AL numbers? Or others outside range? CBC and CMP are the basic tests to start with
@rimmy2 hi I cannot answer your question sorry but what I can do is tell you to make a list of questions you would like an answer to regarding your situation. Look on the machines site for info about CLL. I made up a list of questions for when I went to see the Hematologist and it helped me
Hope this helps
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Good morning, @rimmy2 I’d take this as a positive sign that an MD snagged your husband’s case ahead of time. This doctor sounds very proactive and wants your husband evaluated by an hematologist oncologist without you having to jump through hoops to get an appointment with the NP.
After this MD saw the blood results and noticed the same upward trend in absolute lymphocytes that you did, it was a no brainer to have the referral. Again, it doesn’t mean anything alarming. Just that doctors look for trends and there is one pesky result that is slowly creeping upward.
Not knowing anything about where you live or the clinical setting, I don’t know how your husband’s first appointment will go regarding blood work and such. From my personal experience my hematologist oncologist office is connected to a hospital. Blood work is drawn there and all the results are usually available within a half hour. So basically, I have labs drawn and a consult within the hour with my doctor.
I’m not sure if that will be your husband’s experience. But the first meeting will be a good start for him. Again, as I mentioned before, if this is CLL, it is one of the more commonly, successfully treated diseases and most people have long, healthy lives. Many people who are diagnosied only find out through blood work such as your husband’s because there aren’t always obvious symptoms. They can have developed CLL years before and aren’t even aware.
When symptoms become more pronounced, such as night sweats, low grade fevers, unexpected weight loss, fatigue, drastic changes in blood work their doctors may suggest that it’s time for treatment.
My younger neighbor (now in his 40s) developed CLL about 15 years ago and began treatment about 5 years ago. He has a wife, 4 kids and is outside doing yard work, playing football, jogging, bikes, etc. His life hasn’t changed except for a daily pill and occasional blood tests. He and I chat sometimes because I had AML, which is really aggressive and a bone marrow transplant coming up on 7 years ago the end of June. I’m 72 now, super active and really feel most days like I’m still in my 20s. (Hah, my brain included). Anyway, what I’m trying to get across, is that news like this doesn’t have to lead to the worst case scenario.
Mayo’s website on CLL has some good questions as prompts to ask the doctor: For chronic lymphocytic leukemia, some basic questions include:
Do I have chronic lymphocytic leukemia?
What is the stage of my chronic lymphocytic leukemia?
Will I need more tests?
What are the treatment options?
How much does each treatment prolong my life or increase my chances of a cure?
What are the potential side effects of each treatment?
How will each treatment affect my daily life?
What treatment options have shown the best results?
What would you recommend to a friend or family member in my situation?
The doctor will also as your husband if he has any symptoms, such as the ones I noted about about night sweats, fatigue, swollen lymph nodes, unexpected weight loss, that type of thing. Just relax, bring your list of questions and don’t hesitate to get clarity on things the doctor talks about. Both of you can go to the consultation appointment. In fact, most doctors appreciate the extra set of ears. Often when we patients are listening, the conversation moves from one thing to the next so quickly that we forget some of the comments. So it can be helpful for the spouse to jot down notes. My husband did that for me. Then we had key notes to discuss later.
Ok, take a deep breath and exhale slowly! Cuz I know you’re holding yours! Right? Been there, done that (and I still wear the shirt! LOL ). 😅Let me know how the appointments turn out, ok?