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Anyone have chronic lymphocytic leukemia (CLL)?
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (276)Comment receiving replies
@loribmt Hi Lori
I have been in contact with a hematologist for a few years due to blood tests not being normal. No one has actually said I have CLL but I just happened to read it on my clinic notes so I want to prepare myself. I have bouts of tiredness, night sweats and bones which ache and ache. There are times when walking is very difficult because of back issues but recently I have begun to walk again with poles to help me for stability and I breathe through the pain because it is important to do some exercise so I push myself. I also do Chi Chong and Feldenchrist so am not a couch potato! November cannot come soon enough for a proper diagnosis. Due to the situation here in my country, my clinic has been sending my blood results to the hematologist and they have relayed the outcome to me all is well. Now that doctor wants to see me in person. Are there any questions I should ask I feel as if I am missing something?
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Good morning, @mcconachie. You seem very positive and disciplined, which is really giving you some healthy coping skills. Because knowing, only from a chance reading of your medical notes, that you have CLL but have never gotten any information from your doctor or confirmation, has to be nerve wracking and frustrating! I’m glad you have the determination to take action to regain your stability with exercising and mind/body exercises to gain a level of control over your pain. Very commendable!
With your hematology appointment coming up it will be helpful to have your list of questions and concerns handy. Time is always limited at these appointments, so notes can really be useful in keeping the conversations on track! Especially with waiting months to get your appointment! Yikes.
To help get you started I found 2 good sources with potential questions to ask your hematologist about CLL.
This is an article from Mayo earlier this year:
~ Living with chronic lymphocytic leukemia: Here’s what to ask your healthcare team during your next appointment
https://mcpress.mayoclinic.org/managing-cll/living-with-chronic-lymphocytic-leukemia-heres-what-to-ask-your-healthcare-team-during-your-next-appointment/
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~From the American Cancer Society:
Questions to Ask About Chronic Lymphocytic Leukemia (CLL)
https://www.cancer.org/cancer/types/chronic-lymphocytic-leukemia/detection-diagnosis-staging/talking-with-doctor.html
I also tossed in this discussion on meeting with a new specialist:
~Your tips on how to get off to the best start with a new specialist:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
You mentioned your blood numbers have been off for several years. Were these results never discussed with you?