Newly Diagonised CLL in March

Hi @arooney33,

I am so sorry to hear of your experience to date. I was diagnosed with Diffuse Large B-cell Lymphoma (DLBCL) in December of 2023 after being ill for many months. By the time of diagnosis, I had multiple tumors in my body as well (stomach, lungs, brain). Because of the brain tumors, mine was also classified as CNS lymphoma.

I received 4 rounds of R-Chop therapy and 4 Matrix treatments at Mayo Clinic to target the multiple tumors. I had great results with this treatment and have been in remission for a year now.

I know it can feel overwhelming at diagnosis with so many areas in the body affected. I remember how initially overwhelmed and exhausted I felt with the information after being so sick for many months before diagnosis. But I also had an immense feeling of relief that someone knew what was wrong and that there was a treatment for it.
So try to remember it can get better with the right treatments.

Please know I am wishing you all the best with your treatment and recovery. We are all here supporting you.

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!

Hi @arooney33,

It sounds like your medical team is working hard to get you a thorough diagnosis so that is good news. Hopefully you will get a treatment plan in place and get started soon to relieve some of the pain you are experiencing. I know I had headaches and balance issues before diagnosis and felt relief as my treatment progressed. Your doctors can hopefully find something to help relieve your headaches and other pain once you have a diagnosis and begin treatment.

If you do receive either of the treatments I received, I am happy to share my experience from a patient’s perspective if that would be helpful in any way. And @loribmt is a great mentor in the blood cancer group and can offer a lot of helpful information and support as you proceed.

And you are already helping yourself with such a positive attitude so that is a great beginning. Take care and my best wishes to you for the best possible outcome.

Thank you I am grateful to find this group. The MRI’s did show secondary
bone cancer. Hopefully I will get some answers soon for treatment.
Headaches, clavicle pain and lower back pain have started. Wonder if there
are any medication that will help. Right now they only want me to take
tynenol unless I have neurological issues and then head to the ER. Have a
nice weekend

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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!

Hi arooney33 - I also was just diagnosed with CLL. I also have a dry cough lymphoma (large lymph node in stomach and both groins). I have my 2nd appointment with my hematologist in September. She is doing tests on me and will tell me more in Sept. You are going through a rough time I will pray that your health will get better soon. Best Wishes.

I hope everything goes well with you as well. The best advise I can give you, if you feel something isn't right with your body, let your hematologist know