why neutropenia?

[Lawand1]

anyone she’d light on why the Vclax is wiping out healthy neutrophils and T cells? It’s happening to me and has caused me to have some nasty infections. Thanks for any medical context.

[Poodle2]

It is a very common side effect. My consultant said they are just more "sensitive" to the drug (Venetoclax).

Venetoclax

[SofiaDeo]

CLL is not simply a case of rogue, defective lymphocytes starting to grow, and if we could kill all of them off we would be cured. So it's not like solid tumor cancers. There's often a defect further up the chain in certain stem cells of our bone marrow. These cells also are the progenitors of RBC's, neutrophils, platelets.

So depending on exactly where the defect in your bone marrow occurs, other cell lines may be affected. This is in addition to any problems that may happen when bone marrow is crowded with defective lymphocytes. Part of the problem with CLL, is that defective lymphocytes may accumulate in bone marrow and lymph nodes in addition to being in the blood. While not highly invasive like other cancers, there are a few reports of CLL lymphocytes infiltrating other tissues/organs. Considering that blood (carrying defective lymphocytes) gets everywhere, this is not surprising. If CLL were highly invasive, we would see many many reports, but we don't and it's not.

The drugs we use are targeted to kill off the defective lymphocytes, but can also affect other cells of the bone marrow. So some of us may or may not see dropping other cell lines before treatment. As well as, changes during treatment. We are killing off the defective lymphocytes, but also affecting stem cells in the marrow. The effects are unpredictable, varying from patient to patient. There may be other disease states/drugs, we eat different foods, water intake and the minerals in it vary, we may expend energy dealing with air pollutants/pollen, etc.

Note that in the chart, each of the steps to the various cells has a number of intermediate steps. These drugs can affect not only the bone marrow stem cells, but the various stages of all the other cells of the bone marrow.

Steps to making bone marrow cell products

[Lawand1 in reply to SofiaDeo]

make sense, and is their evidence we get thru it or does it continue to need managed with reduced dosages and GCSF?

[SofiaDeo in reply to Lawand1]

AussieNeil as well as others here have posted about neutropenia that finally got controlled, with and without GCSF.

I personally also advocate for a super healthy diet and at least some exercise plus good sleep as part of the "treatment". We need the nutritional building blocks from healthy foods to make new cells, and energy to metabolize the bad ones and remove waste products. Exercise (I did walking or seated/floor exercises when under treatment) to oxygenate tissues, exchange waste products for nutrients, and get various things moving through our liver and kidney plus maintain muscle tone. One can sit in a chair and use a can of food to do various lifting exercises while watching TV, or do stretching exercises when stuck lying in bed. There is no need to purchase special weights, and there are free videos online. PBS has a show "Sit and Be Fit" which takes one through a seated workout. We also need good sleep/not physically "pushing it" so the repair and disease fighting processes get as much energy as they want.

[Lawand1 in reply to SofiaDeo]

thanks, this is how I try to live full time since getting this disease back in 08. Appreciate your replies

[The-Man-with-a-Plan in reply to SofiaDeo]

Sofia

Your brilliance shines through again. Great explanation. Easy to understand. And the graph gives us a helpful visual.

MwaP

[thb4747]

Hi, I’ve been taking Venetoclax for almost 5 years (commenced 26.4.18) but only a half dose since November ‘18. In the early stages my neutrophil count dropped to 0.3 but some G-CSF injections got me through that. I think your system will adjust in time. Perservere! It’s a wonderful drug.

[Lawand1 in reply to thb4747]

thank you, that’s very encouraging

[ErieSailor in reply to thb4747]

I thought Venetoclax was a limited duration treatment for like a year. Is that not true in all cases?

[Lawand1 in reply to ErieSailor]

for me it is no fixed duration. I have a colleague who has been on it for six years too

[Classicaljazz in reply to thb4747]

Immune cells adaptation to venetoclax -- this concept would support your experience thb4747 and is explored in an article that contrasts short-term use and increased apoptosis vs. long-term venetoclax use with resistance of normal immune cells for apoptosis from the drug. See: nature.com/articles/s41419-...

[thb4747]

in New Zealand it’s funded for a 2-year period. I was lucky enough to get into a 2-year clinical trial which has been extended indefinitely.