Hi everyone! Hope you doing well ..
Since my diagnosis 2 months 1/2 I lost already 25 pounds I’m on W&W “stage 0”
It’s been like 3 days that Im feeling pain in my bones.. I also have Lumbar Stenosis , My legs my arms are killing me .
CT Scan came out good ... Doctor says doesn’t have to do with CLL... losing the strength from my right arm.
The weight loss is concerning and could indicate you need treatment, regardless of other "numbers". Plus the weakness/bone pain. I had bone pain early in my diagnosis, and still do to some degree. Your CT came out "good"...but you don't say if there are ANY nodes at all that could be pressing on a nerve somewhere. Just because a CT shows a "small" amount of growth, Murphy's Law says there will some patient, somewhere, that will be very sensitive to any lymph node changes regardless of whether or not "most patients" don't react to a small change. I have intermittent sciatica-like pain that correlates somewhat to when my disease is active. And as you lose weight, especially if it is the abdominal area, if an internal lymph node moves somewhat it could affect a nerve.
Thank you sooo much!!😊
They found some 0.6cm and less Left para aortic and Interaortocaval Lymph nodes ... Hematologist says nothing to worry about ..
Working on looking for second opinion
Pauli, Have you been given a definitive diagnosis of just what your Blood situation is?
It is difficult for me to understand just what your situation is and I am hoping you have gotten the care you need to get to have a definite diagnosis, so we might better help you.
Your pain, I assume is from your back situation? Is there anyone suggesting that you might see a Physical Therapist to help you with your back issues. I have been in physical therapy for many months (just had my last session yesterday) and it has helped me to know what I can do
in the way of exercise to keep my balance (not fall) or injure my back with improper exercise and it will AND HAS gotten me pain relief.
It is now my job to maintain the exercises and to begin a walking schedule to keep myself from pain and to enable me to live a full life.
Please do let us know how you have done with a new hematologist and a definite diagnosis.
Paulibiris,
Pain can make us feel like there is no end to it--but, finding the source and getting the help we need to find relief can get you through it and make you stronger, giving you more of a feeling of being in control.
If you have seen the following link, I apologize, but I do think action in regard to your health will help you to begin thinking about how you will take charge of your health situations by getting the help you need from a GP or an Orthopedic for your back.
If you need something for your anxiety for a short term, tell your GP or his/her nurse how you are feeling and ask for help.
If the 2nd hematologist you have seen is not communicating either, if he/she has an RN, you might get better communication from them.
CLL is slow moving, so you have time to get in control of your general health and not worry about CLL, until there is something to worry about. Please do ask any questions that arise from reading the following and, if your hematologist will record the information he has given you, let that happen---we all have difficulty hearing when we are frightened and filled with anxiety. Give yourself a break and ask for the recorded information so you can play it back when you are calmer. And you can share with this forum what your Dr. has recorded.
healthunlocked.com/cllsuppo...
Best wishes as you find your way to getting the pain from your stenosis taken care of. Hopefully, that will help you to feel more confident and able to get the 2nd Dr. (if you haven't done so).
Thank you so much!! The recording part he was just being sarcastic.. so sad
🙏 Praying for you, Paulibiris, that whatever is going on is discovered soon. Has a doctor in a different field of medicine been suggested? I would ask about that. Sandra😊
Hi no they haven’t suggest no Doctor
Thanks so much!!
Hello All - This is my first post. I'm 72 yo. I lost 40 lbs in the period before/during/after my initial diagnosis (2 years ago) of CLL. My weight has since stabilized. I'm in W&W with many small enlarged nodes. I have a generalized "achiness" & some days of heavy fatigue. My Dr says that I'm too early in the disease for the fatigue to be associated with the CLL. I try to keep up an exercise routine (yoga & running) no matter how I'm feeling. I find the exercise helps with symptoms & mood. I do have a question - does anyone else have frequent sinus infections? And, is there a correlation between CLL & sinus infections? Thank you! Judy
I disagree with your doc...disease activity can and does cause "achiness" or bone pain. I had extreme fatigue early in my diagnosis, it took time for my body to "adjust" and become able to function somewhat. Initially I was knocked off my feet at lower ALC, normal hemoglobin. I think my body adjusted somewhat to the condition, & I can do some things I struggled with during disease emergence.
We have a lot of lymph nodes in our head, near the sinus area. We (me & oncs) theorize my MRD is mainly in the sinus area because I have a number of "head issues" I didn't have before CLL, and when blood/bone marrow were clear of CLL & I was in a long remission, I still had head symptoms. Even millimeter size changes in sinus tissue or sinus nodes could affect sinus drainage, contributing to infection risk there. I know my tinnitus & some other "head symptoms" are in flux during this current treatment.
Thank you - that is very helpful. I often have a sore, achy neck...
Strange dizziness - anyone else get this?
L-lysine Supplements 
Venetoclax+Rituximab OR Acalabrutinib - What is the best choice?
Pain in lymph nodes..normal? 
CLL and abdominal pain or digestive issues
