lymphocytes/neutrophils

[Kimsome]

Hello everyone,

My name is Kim and I’m a 57 year old female with CLL. I was diagnosed 13 years ago and underwent aggressive chemo as a result. After 5 of 6 of fludarabine

cyclophosphamide

rituximab

I went into semi remission and now after many hospitalizations with infection have IVIG once a month that works quite well at keeping me out of the hospital. My question: my absolute lymphocyte count is now high again and my neutrophils are low. Since the first line of chemo has been used, I understand there’s newer treatments, but I wonder at what point those treatments start and what success you all have noticed. My oncologist says I may never need that treatment but I’m so tired and I noticed my lymph nodes under my chin are quite hard again, and also under my arms. The under arm lymph nodes, that are larger were found on a mammogram, but on the return visit, they checked both sides and found both sides were the same so I assumed it was my CLL.

My oncologist doesn’t say a lot except for me not to worry and realize I may never have to have treatment, but rather deal with the side effects. Just wondered what experience any of you might have and what you think of that.

Thank you in advance,

Kim

[AussieNeil Partner Administrator]

Hi Kimsome,

Basically the triggers for a second treatment are unchanged since your first treatment as explained here, healthunlocked.com/cllsuppo... You'll see (among other things discussed in that post) that it's your lymphocyte doubling time and enlarged nodes and spleen that are triggers for starting treatment. Neutropenia isn't a treatment trigger.

Given you have a lot of living yet to do, I'd recommend you ask for a second opinion. Thankfully you live in the USA, so you can arrange a free video consultation with a CLL specialist through the CLL Society's Expert Access program:

cllsociety.org/programs-and...

Neil

[wmay13241 in reply to AussieNeil]

Following a 2016 CAR-T, my wife's IgA and IgM are <5, and her IgG drops below 400 every 2-3 months requiring an IVIG infusion. As I understand, since her bone marrow does not produce B-cells she cannot get a B-cell lymphoma.

[AussieNeil Partner Administrator in reply to wmay13241]

There are unfortunately T cell lymphomas, but they are much less common than B cell Lymphomas. There may be some long lived memory B cells that could develop into a lymphoma. Plasma B cells can cause myelomas. (I'm not sure what can survive CAR-T.)

[neurodervish]

Hi Kim, It's fair to say that this entire forum is filled with the shared experiences of all our CLL journeys, side effects, and what we think of them.

I looked thru your profile and read some of your previous posts, and my biggest concern is that you don't seem to be seeing a CLL specialist. Non-specialist oncologists are notorious for prescribing "off-the-shelf" remedies and "one size fits all" treatments to all CLL patients, very often to their detriment. They read somewhere that FCR is the gold standard and then they stop reading. But one size does NOT fit all with CLL. Most every case (presentation) is different. FCR has been shown to be effective for 13q/mutated patients, but not for other genetic mutations. Did your onc do a FISH test and mutation test? You mention getting a bone marrow biopsy, but that's generally only done for clinical trials, and certainly isn't done in lieu of FISH and mutation testing.

In your post healthunlocked.com/cllsuppo.... you mention being in Portland, but you are seeing an oncologist at Providence. There is a CLL specialist a few miles away at OHSU (Dr. Stephen Spurgeon). I see Dr. Spurgeon even tho I live a couple counties away. Insurance allows people to go outside a provider if the provider doesn't offer the specialty needed. This is life and death stuff.

[Mumu1]

Hello Kim,

The previous replies said it all: go get a second opinion (and do not feel bad about it), and do it now.

Just to show you how important a second opinion is: I also had chemo treatment 10 years ago (BR) which worked fine for me for about 4 years. I was lucky to have been referred to someone who keeps up on developments: Rather than doing another chemo, the “gold standard” had been modified by then and I was put on Ibrutinib and then Alcalibrutinib (BTK inhibitors). When that did not work anymore after another 4 years, I was put on O+V protocol (Obinutuzumab and Venetoclax, started end of last year, still on Venetoclax). It controlled the dire situation at the time. But I again reached a point where the condition is becoming very unstable but the current oncologist keeps telling me “not to worry” despite the immune system being very depleted, bringing me back to the stage where it all started (pneumonia with hospitalization). I checked with my GP, and she immediately recommended a second opinion from a specialist.

I wish you all the best!

Let us know how it all worked out for you!