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I have had CL for 22 years without much change from about 23,000 WBC. A year ago I began getting very large lymph nodes. Will it help?

A MyLeukemiaTeam Member asked a question 💭
Oakland, CA

Should I try this new oral remedy? I also have squamous cell lesions and will start limited radiation therapy on the skin shortly.

May 15
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FDA Approves First All-Oral Combo for Newly Diagnosed CLL Read Article...
A MyLeukemiaTeam Member

I think your overall WBC count is low? The lumps and bumps you have is an interesting development? I wonder how the lumps and bumps are doing inside your body which can only be checked with an MRI scan. I hope you are being informed about the health and size of your spleen which seems to be affected by those excess WBC? A person who has an enlarged spleen is at stage #3 CLL. I was never told this by my doctors but a new doctor saw this in an old MRI and let me know what was. happening? Currently I take medication and my blood tests are all 100% normal with WBC count at 7,600. I also know my medication is effective for 10 to 20 years or until the WBC mutate and can not be affected by the medication. I hope you are eating healthy and exercising which can benefit your health and happiness.

May 16
A MyLeukemiaTeam Member

Hi Garrett. Personal decision in regards to the pill. Also, if your oncologist isn’t pushing it or suggesting it then you may not want/need to. As far squamous cell cancers, you’re not alone! I’ve had 4 Mohs surgeries in the past 2 yrs to remove squamous cell cancer. All very successful & highly recommend. 10 plus years living with CLL, no treatments & happily still on watch & wait.

May 15
MyLeukemiaTeam

22 years with stable WBC is quite a journey — and now noticing very large lymph nodes is understandably concerning. Enlarged lymph nodes can be a sign that CLL is progressing and that treatment may be needed.

Doctors typically look for these signs when deciding if it's time to start or change treatment:

- Lymph nodes that Show Full Answer

22 years with stable WBC is quite a journey — and now noticing very large lymph nodes is understandably concerning. Enlarged lymph nodes can be a sign that CLL is progressing and that treatment may be needed.

Doctors typically look for these signs when deciding if it's time to start or change treatment:

- Lymph nodes that are very enlarged or painful
- White blood cell count rising significantly
- An enlarged spleen
- Dropping red blood cell or platelet counts

Since your lymph nodes have grown significantly over the past year, this is definitely something to discuss urgently with your oncologist if you haven't already. Regarding the "new oral remedy" — without knowing exactly what it is, it's impossible to say whether it would help. There are effective FDA-approved oral targeted therapies for CLL, such as BTK inhibitors. However, any new treatment decision should be made with your oncologist based on your specific genetic markers and overall health picture.

It's also worth mentioning that the upcoming radiation therapy could interact with your immune system, so making sure your full care team is coordinated and aware of everything you're considering is really important right now.

May 15

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