41yr old, new to this

[FoxAngelus]

Hi all. Cll patient here, lymph nodes in neck increase in size then go back a few weeks later. It pushes my throat and can make it difficult to swallow. Do we all get this? No treatments 6 months watch and wait, So far

[Youngen]

Hi

Can only share my experience- diagnosed at 35. After 5.5 nerve wrecking years of W&W I was borderline but bad numbers were climbing and good numbers were decreasing. I could’ve waited another 6 months, maybe even 12, but it was inevitable. The swollen nodes were starting to be uncomfortable (specifically popping in my ear due to a lot of swollen necks in my upper neck) and together with my specialist, I decided not to postpone any longer. I started Ibrutinib 14 months ago (peak of pandemic and decided skip the G&V and have minimal hospital time and schedule disruption). Thrilled with my decision and just sorry about all the anxiety I had over it. Nodes shrunk in 3 days. CLL Numbers back to where they were 6 years ago and, hemoglobin, platelets and immunoglobulins all in range for the first time in forever.

While the CLL numbers are what the treatment is aimed at, the other improvements are not trivial and my specialist believes that it may partially be because we didn’t let them get too low before starting treatment so they had a better chance of recovering

Bottom line- I was more scared of the treatment than I was of the CLL and postponing treatment was my goal for much too long at the expense of quality of life.

Discuss with your specialist but know that many of us are thriving on treatment and I am in a much better place now than I was before starting

[LeoPa in reply to Youngen]

This is what Sushibruno needs to read. Thanks for sharing a positive experience and good luck!

[ScruffyDuck]

Nodes will go up and down depending on things like infections. I have had instances where they get bigger in my neck and then go down again. I think if they go like that then something non CLL related is in play. I had one instance of them getting very enlarged and was eventually diagnosed with an infection. Took them a while to go down but they did eventually.

Jon (In Wales)