CT and Flow test

[Tchapman]

I have question- I just had CT scan and all my lymph nodes have decreased in size the scan reader said I was responding to treat well ( I’m not currently in treatment) good thing? But my white count has gone from 80k to 130k in 3 months my other markers are no loss of the 11 or 17 or loss of p53 is that good? I started following the carnivore diet low protein high fat lots of energy haven’t been sick for a year but now the rise in wbc is a bit concerning. The doc says I don’t have markers that would have me do a combo medication not sure about either he didn’t give any details. I knew I could ask you sweet people and get an answer!

[Poodle2]

If your lymphnodes are smaller and your lymphocyte count is higher, the lymphocytes might have been "pushed" out of your nodes into your blood stream. I do understand that you feel the increase is concerning but try to flip it, it is expected of this disease, we know it will eventually rise so maybe try not to focus on that too much if possible. Focus on things you can control - what you eat, how you exercise. Hope you are feeling well? If you are, there is no reason to be concerned about things.

[Tchapman in reply to Poodle2]

Yeah, I’m feeling very well over all. Okay that makes sense thank you so much for the reply.

[AussieNeil Partner Administrator]

Not having 17p del, 11q del or missing or mutated TP53 is what we all want

A month ago you mentioned you were about to start Z+V treatment and I take it that decision has been deferred? You need to track your absolute lymphocyte count to see whether it doubles in under 6 months. Rapid doubling should result in your specialist checking for other indicators for when to start treatment.

(It would really help community members better help you, if you noted your markers and treatment status in your bio, per this short cut link healthunlocked.com/profile/... )

Neil

[Justasheet1 in reply to AussieNeil]

Neil,

Actually 11q- is not considered a high risk marker anymore. It is undesirable, as it predicts bulky disease and an early time to treat.

But aside from that, it responds generally just as good and for just as long as if not having 11q- at all.

This is because of the new treatments.

It was definitely high risk with chemo.

I do not have any links for this but it is what was just told to me at my last appointment with Dr. Wierda.

Jeff

[Justasheet1 in reply to AussieNeil]

Also, locking the post helps.

[Tchapman in reply to AussieNeil]

Yes, treatment was the plan before all the other tests came back that I didn’t qualify for Z/O my doctor told me he was sure that I would need treatment but he changed his mind when the fish test and the CT scan came back with positive results as in I’m not needing treatment like he thought. I will post my numbers as well. Thank you so much for the reply.

[PennyLane2024]

My WBC increased at a similar rate to yours earlier this year. WBC doubled in 4 months and I started treatment in the hospital due to tumor lysis risk in May. Ask your CLL specialist if you can have monthly blood tests so that they can carefully monitor your WBC and RBC. Many of us started treatment AND feel great. Starting treatment a few months early is far better than starting treatment a few months late. Have you had IGVH test?

[Tchapman in reply to PennyLane2024]

Yes my IGVH just came back a bit low.

[PennyLane2024]

IGVH is not high or low. It is mutated or unmutated. One of two most important tests.