Lymph Node Resurgence

[filmcaptive1]

Hello Everyone!

I started my treatment last December. Completed my last Gazyva in June and am still on my Venetoclax through the end of the year. Some of my lymph nodes that went down are starting to get a bit larger again.

My doctor says all of my labs look great! He said it can happen sometimes with stubborn disease still being destroyed and that he has no reason to think just yet that I am rejecting the therapy. He scheduled a PET scan to make sure there is nothing else underlying but he doesn't seem to think there is. I am taking Zarxio shots for my low neutrophils, but other than that, treatment has been going pretty well. In my paranoia and nervousness nonetheless, I was wondering if anyone has ever experienced this with their treatment? If so, what was the outcome?

Thanks in advance for your time and hope everyone is doing great!

Sylvia

[MaxSmart]

In my treatment things got worse before they got better, I bet that that’s what’s happening with you.

[filmcaptive1 in reply to MaxSmart]

Thanks. What got worse and how long did it last?

[MaxSmart in reply to filmcaptive1]

My white blood cell count got much worse, but then it got much better. Now it’s normal.

[filmcaptive1 in reply to MaxSmart]

Thx so much!

[MrMidnight]

Having been a CLL patient for 10 years, with a tendency to catastrophise, I decided a few years ago that if the docs weren't worried, I wasn't going to worry.

Easier said than done sometimes but it has helped me as a strategy.

[filmcaptive1]

Thank you!

[WittyApricot]

hi Sylvia,

I am noticing my lymph nodes are a bit palpable again. The disease for me showered more as SLL before seeing it in my blood. I started V last September. My bloodwork looks great is what I am told all the time too, but I am now starting to experience low grade fevers 99.2 to 99.9 at night and waking up with night sweats and I am starting to notice a couple of nodes again. My fatigue has never gone away and some days it is so unbearable.

My doc noticed a couple of nodes too. Saw her in June and she said if still feeling them we would redo scans in September.

I can’t help but feel a bit nervous too. My journey to diagnosis was a tough one. Sending you a big hug as I can relate to your concern and wishing you well. Do your best at staying positive and try not to focus on it. I know easier said than done. I hope your doc will be able to provide you with better answers that will ease your mind. I also appreciated Max smart’s words about it getting worse before getting better.

[filmcaptive1]

Thank you so much for your response!