Chronic Lymphocytic Leukemia (CLL) Support Group

Chronic lymphocytic leukemia (or "chronic lymphoid leukemia") CLL, is a cancer in which too many lymphocytes (a type of white blood cells) are produced. CLL is the most-diagnosed form of leukemia in adults. Men are twice as likely to develop CLL as women, however the key risk factor is age: over 75% of new cases are diagnosed in patients over age 50.

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Leukemias
/ Chronic Lymphocytic Leukemia (CLL) Support Group

Newly diagnosed with CLL

Songirl23
Songirl23

Hi all. I'm new here. I'm newly diagnosed with CLL. Well, my primary will tell me the full news tom. 5 years ago, I had pain in my right foot.Turns out it was a bone tumor. After all is said and done, I now have had 2 bone tumors, 3 external fixators, bone transplant, osteomyelitis, 12 ops and am now a below the knee amputee. The ball was dropped on pathology so I'll never know what kind of tumors they were. My primary just says in my chart that I had malignant tumors. The treatment caused bone infection which resulted in me losing my leg. I'm pretty tough, but somewhere along the way, I started feeling off, losing weight, heat intolerance and just not feeling well. I went from a healthy 135 pounds to now 98. A constant ache under ribs. Always feeling full with an alternating gnaw that I'm starving. I Also have pernious anemia(low b12) I take an injection once a week. I just got my red blood cells up to normal low and now my lymps absolute are elevated. I also have elevated MCV. For the last few weeks, I wake in the middle of the night drenched in sweat. I've known for a long time something was really wrong with me. I woke up tho morning shaking and crying. I was wondering if someone could tell me the next steps. What kind of tests and treatment am I looking at? I appreciate any help

igmaam
igmaam
God, girl, you have been put through the wringer. Did you find out anything yet? Most of the time they go for a bone marrow biopsy to see exactly what form of CLL you have and, based on what stage you are at, proceed from there. A lot of us are on wait and watch, which means they don't do anything except monitor. Others have had different forms of chemo. Night sweats are a symptom, the ache under your ribs could be one too, but it could be a lot of other things like an ulcer, for instance. Your thyroid could be messed up too. I hope they can figure it out and get you on the road to recovery. Did they say how high your WBC was?
RachRy
RachRy
Murray Hill National, a medical market research company is currently seeking CLL patients age 50 and over to participate in a 15-20 minute telephone interview about current treatments and new treatments on the horizon. We are offering $75 for your time which will payed via a mailed paper check or to a PayPal account if you have one. Payment take about 14 days to receive. Your input is extremely important to us. If you are interested or would like more information, please call Rexann at 972-598-0312 or email rexann@murrayhillnational.com. Thank you so much and have a fantastic day.
Songirl23
Songirl23
Hi igmaam,
Thank you for your reply. I don't have any answers yet. I go for my CT scan on the 7th. My white count is normal high 9.8. It has been running in the 6. range. My RBC has been low, but taking iron so it's normal on the low end now. I've thought of my thyroid, but any tests have come back within normal range. I do have several small lumps on my ribs that are sore sometimes. My left side under my ribs aches a lot. I also found out I have a gene mutation MTHFR. I have 2 different #'s that they say effect the B cells. Which is why my stomach won't hold or distribute b12. Also I heard CLL is a B and T cell problem and was told my MTHFR mutation #'s go with CLL diagnosis. Im also told when lymp absolute elevates, it can only mean chronic infection, lymphoma or leukemia or other blood cancers. I'm actually ok with this. I mean I'm not scared. I just want to get to the problem and hopefully start to feel better. Soon
igmaam
igmaam
I hope you have some answers by now and hopefully a path ahead to make you feel better. Your white count isn't very high at all, by CLL standards. I think mine was 24 last check. Anyway, I am wishing good luck your way so you can feel better soon.
Songirl23
Songirl23
Hi igmaam. I can't believe I still haven't had the CT scan. I went, but they misread it for no castrast and didn't have a radiologist there to admistister the injection. Can you believe that?!?! Anyway, I go this Friday to do the scan. I don't understand why they just don't do a simple blood smear. It would tell so much. Anyway, I've lost another 2lbs. Now at 96. I'm trying to focus on the positive. I've been casted for my prosthic leg and this Thursady will get to take my first step in years. It's just a test socket and can't take it home until they make the real one, but still so exciting. How are you feeling? I hope all is good
igmaam
igmaam
God, what a mess, I can’t believe you still haven’t found out anything. Talk about stress. I agree, the blood alone should give a lot of info, but they probably just want to cover all the bases. I recently went for a mammogram and they thought maybe they kind of sort of wasn’t sure about one area so I had to go for a sonogram which showed absolutely nothing. So they decided it was just a difference between a 3D vs my previous 2D mammogram. But they still want me to come back in six months just in case. I understand they are trying to be careful and I am sure your doctors are trying to take the best care of you they can, but lord is it tiresome. Anyway, hope they figure out something soon and you are better soon. I am fine, th e CLL is still symptomless as far as I am concerned, will have a check at the end of the month. Report when you can