Newly Diagonised CLL in March

What is your first name? I live in Nova Scotia where do you live? How old are you? Just curious
Drop me a note now and then if you wish.

Good Morning @sweetsuzy
I am soon to be 62 years old and I live in Maryland. When I was first diagnosed with CLL and was in the watch and wait stage with a follow up in 6 months, I started to have night sweats and had 2 episodes of a sinus infection in a month and also had internal poison ivy, I reached out to my hematologist/oncologist and let her know. At that time she asked for me to come into the office. That is where they felt a small lymphnode in my neck. That is where the head spinning began...ton of tests and blood tests to biopsies to try and figure out what is going on with my body. Still more tests this week and next and hopefully some final diagnosis. Just advocate for yourself and if you feel something is off, get in touch with your doctors.

Hi @arooney33 It’s been a couple of weeks since we last spoke and I’ve been wondering how you’re doing. You’ve been going through such a rough patch lately and I know it can feel so deflating.
Did you have your consultation with the neurosurgeon?

@loribmt still trying to wrap around what all the doctors are saying and what I actually have. Meet with oncologist yesterday. The neurologist said that clival and C5 lesions were stable. Had a lung biopsy showed non-necrotizing granulomatous inflammation. The axillary adenopathy biopsy didn't show anything either. So now I need a bone biopsy since Sarcoids ( which they feel I have ) normally doesn't go into bones and more tests with a Pulmonary doctor to see if I really have Sarcoids. My head is spinning and how can someone first diagnosed with CLL, to lymphnoma to sarcoid. I feel so unwell still with headaches, night sweats, bone and muscle pain and dry cough.
More tests will give me a complete diagnosis. Thank you for asking!

To say your medical mystery, is complicated, is an understatement! I’m sure you leave a number of doctors scratching their heads as they try to put all the clues together for a complete picture of your puzzle! From my own experience, I’ve learned just how complex blood cancers can be. There are cellular subtleties, variations in mutations, other co-morbidities that can split a diagnosis off into different directions.

CLL and Lymphoma are both blood related cancers. Leukemia originates in the bone marrow and spreads through the blood, while lymphoma originates in the spleen or lymph nodes and spreads through the lymph vessels. It is possible to have both. So further testing may have shown lymph node involvement adding lymphoma to the original CLL. They can share similar symptoms, too. And so can sarcoidosis with fatigue, fever, night sweats, bone and muscle pain, swollen lymph nodes.
Actually a friend of ours had pulmonary sarcoidosis with many of those symptoms when he was in his early 40s.
Once diagnosed he was given steroids for several months and back to normal. That was 30+ years ago and he’s a healthy, active old codger now…so am I so I can make that joke. ☺️

So hang in there. You have doctors who are taking this seriously and getting you the testing that’s necessary. The wheels can feel like they’re turning slowly but testing can be progressive as each one may rule something out or guide the doctor to another area.
It’s awful to feel so miserable so I really hope you get some answers soon. Are there any pain meds suggested to help keep you comfortable while you wait?