CLL disease burden and neupogen

[SurfSurf]

I am on V & O trial 20-044 and reading about CLL trial CLL14. Can anyone outline or define what is “high disease burden?”

So far little side effects, just started cycle 3 - but have had a total of 3 neupogen shots during cycles 1-3.

1. Do the neupogen shots give any prognosis for how the V &O May work? It’s my front line treatment after 9 years watch and wait.

2. What is high disease burden ?

thank you for any input, this forum is incredible

[lankisterguy Volunteer]

Hi strothmann,

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Neupogen & Neulasta (see: goodrx.com/classes/leukocyt... & verywellhealth.com/neulasta... ) are used to stimulate the bone marrow to produce more white blood cells, especially neutrophils.

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I've never read of any prognostic connection with the efficacy of V&O

Depressed neutrophils is a common side effect of both V and O,

Neupogen is used to counter that side effect.

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High disease burden usually refers to a high ALC / Lymph#, large lymph nodes and/or enlarged spleen. All of these indicate a large number of CLL cells in the body.

When venetoclax /Venclexta is started - there can be a sudden kill off of those excess cells causing TLS Tumor Lysis Syndrome. This can also happen when starting obinutuzumab / Gazyva.

Close monitoring & frequent blood tests are used more often with high disease burden.

Some patients need to be hospitalized to receive IV fluids and have the frequent tests completed often to prevent the TLS from getting severely life threatening.

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Len

[DriedSeaweed]

Hello. If you lock your post you may get more replies.

Needing neupogen is normal during the ramp up. I don’t think you can infer long term how your body will do making neutrophils based on needing the growth factor now. I wouldn’t take it as a bad omen or anything. I needed neulasta during my venetoclax ramp up but haven’t needed it for the past 3 months. Hopefully things are just a little turbulent right now and your body will adjust to making the appropriate amount of neutrophils as the months go by.

[SurfSurf in reply to DriedSeaweed]

It’s my first week post ramp up - this is why I’m nervous — am past the ramp up phase. Had a shot today will see how it goes. Thank you for your quick reply

[Poodle2 in reply to SurfSurf]

I had to have the shots throughout my treatment, started with my neutrophils on 0 in week 1. I was never bothered by them, I actually felt safer when I knew I had them. It's just something about 50% of those on O+V have to deal with. Don't focus on that too much. Better to have a shot than to end up in A&E with neutropenic sepsis.

[Jmiah717 in reply to SurfSurf]

Just like Petra, I also had to get shots through my whole treatment almost. The last 2-3 cycles now, I haven't needed any and my neutrophils have been steady.

Once your marrow recovers from the disease and the treatment, the idea is that your body will start doing its thing again on its own. I was hospitalized quite a few times when they dropped really low and I got fevers so definitely better to have them if you need them.

But I've never heard anything about prognosis though. And disease burden is how high your cell counts are, how big your spleen and nodes are, how high the counts are in your marrow, and essentially how much the disease is impacting you.

Jeremy

[SofiaDeo in reply to SurfSurf]

"Ramp up" is referring to the Venclexta initiation, and there are 4 steps. The package insert states what is considered the various risk levels for TLS/level of tumor burden. Netrophils can drop at any point while on treatment, it's just more common shortly after starting a drug/dose increase.

My pet theory, is that during induction when we are killing off a lot of CLL cells most of our energy is going towards metabolism and excretion of those cells. We need extra nutrition at this time, otherwise we can't make new neutrophils and other cells. Plus as the drug gets into our marrow, as CLL cells are getting killed and removed, the marrow will preferentially repair itself. So dips in various cell lines aren't unexpected. Your body may spend a few days resting/repairing marrow here & there, instead of cranking out new cells, even if you are eating extra to have new cell building blocks on hand.

[SurfSurf in reply to SofiaDeo]

Thank you very much. I was at infusion center for 12-14 hours once a week and returned early the next day, all to monitor or potential TLS. You’re spot on re eating, I think my system is needing more nutrition during this time of shedding the CLL. Appreciate and value your input.