Newly Diagonised CLL in March

Don’t wait until September. Go see a CLL expert NOW!

Hi @arooney33. I’m still in shock over reading you have internal Poison Ivy that affected your lungs! I can’t even… I hope that’s been resolved. But you are in a world of hurt with the sinus infections, headaches and other symptoms you’re experiencing with your CLL.

Chronic lymphocytic leukemia or CLL affects the development of white blood cells called lymphocytes. They are an important part of your immune system. So if their production is diminished that can make you more susceptible to illnesses and infections, which you’re already finding out. I’m so sorry to hear you’re practically having to live on OCT pain relievers…that’s miserable!

I found an informational article that might be helpful in explaining how CLL impacts the immune system. Here’s the link:
https://www.medicalnewstoday.com/articles/cll-and-immune-system
The CLL society provides a great deal of information on their site too. Since you are recently diagnosed and in the ‘watch and wait’ period this is a relevant link for you:
https://cllsociety.org/cll-sll-patient-education-toolkit/watch-and-wait-active-observation/
Were you having the same symptoms of night sweats and headaches when you were first diagnosed? Is this what led to the discovery of your CLL?

Thank you for your response and the links. I had headaches awhile before I was diagnosed but the night sweats started about a month ago.

I realize you were recently diagnosed with CLL just a few months ago. Even though your doctor has you in active surveillance with no appt for 6 months, it doesn’t mean you can’t contact them in the meantime. Any time you’re feeling a possible change in symptoms or concerned about your health you can certainly schedule an appointment, call or write a message in the patient portal to your oncology office.

We have some active CLL discussions in Connect. Here’s a link to a conversation started by @hikerny, who was recently diagnosed.
https://connect.mayoclinic.org/discussion/anyone-have-cll/
Other discussions can be found by typing in CLL or Chronic Lymphocytic Leukemia in the top search bar!

Having a weakened immune system is challenging any time. I’m there myself. So do what you can to boost your immunity with foods rich in antioxidants and vitamins. Drink around 64 oz of water daily and if you’re feeling up to it (and even if you aren’t) try to take walks daily. It helps reduce inflammation in the body.
Sinus infections can really drag a person down too. What are you doing to treat those?

Antibotics, Musinex, Allergy Medication, and Flonase

UPDATE: I went and saw my doctor and discussed my concerns. She felt a raised lymph node in my neck and ordered a Cat Scan with contrast. In the mean while I had my annual mammogram and received an abnormal reading. I had an auxiliary lymph node concerning. Ultra sound is scheduled. Received my results yesterday for the Cat Scan and there are numerous nodules in the lungs, multiple shotty lymph nodes in the pelvis and shotty lymph nodes along the cervical chain. Schedule Pet Scan and then biopsy to see what stage and what source of treatment. Seems like a lot is going on and have read many articles but time will tell.

PT showed that I have a lesion at the end of my skull, lungs nodules and right Aux Cord, pelvis and C5. The oncologist said it is every where and was surprised that I did not have any pain because of the size of the lesions. Scheduled next week with a nuero surgeon and waiting for a lung specialist. Two more MRI's tomorrow

Hi @arooney33. Oh my goodness, this is really quite an update in just a month’s time. I could tell, then, that you were having serious concerns and questions about your health. I’m so glad that you followed your instincts and decided to check in with your doctor now instead of waiting until September.
This news must feel pretty overwhelming for you. But at least now you’re in the position to get answers and move forward towards treatment and getting your life back to normal. From my own experience, feeling stuck in limbo with my doctor ignoring my obvious symptoms was the worst! Once I had a diagnosis and was able to move ahead with treatment, there was a huge sense of relief and hope. You’ve gotten the proverbial ball rolling now…
Please keep me posted with your updates!
Do you have family members nearby as a support system?

I know it is very over whelming and my doctor feels that it is DLBCL but until the biopsy we won't have the correct diagnosis. Everything has moved along really quickly and I haven't really had time to let everything sink in. Yes I have my daughter near by and my husband at home. Thank you for asking and I am grateful that there is a support group on line

Good morning, @arooney33 I’m so glad you found Connect, too. I think you’ll find you’re never alone here, so please consider us as part of your support team along with your daughter and husband. ☺️ No matter the diagnosis, we’ve got your back.

If your test results do point to DLBCL, we have several members who also have been diagnosed with this type of lymphoma including, @j0318 @emmiet @fwpoole, to name a few.
Wishing you well with your MRIs today. I know you’re having a flurry of activity with all of these rapid-fire tests. It can be dizzying! But in my experience, it brought a sense of relief to know that there was speedy forward action in getting diagnosed so that I could heal. You’ve been miserable for several months. So hope is now on the horizon. Sending a hug!