neutropenia back again

[lisakc1]

My husband encountered Neurtropenia right before his last O infusion. Protocol was one week off venetoclax, blood test, no improvement, GCIF injections which brought his levels up to normal. His Venetoclax dosage was cut from 4 to 3 pills daily. Now, embarking on cycle 10, we are in the “what’s next” phase and it hit again. Since his blood work is now only monthly, we have no idea how long he’s had this, so it’s one week off the venetoclax, then GCIF and he will be dropped to 2 pills daily. Just wondering if this is the standard protocol and if this is a common occurrence. Many thanks to all!! He’s come so far, I don’t want the reduced dosage to affect his remission. His other blood levels normal, absolute Lymphocytes very low, .75, neutrophils .39.

[AussieNeil Administrator]

You can confirm that your husband's specialist is observing the dose reduction protocol as recommend in tables 4 and 5 of the dosing information specified in this document, rxabbvie.com/pdf/venclexta.pdf which is available from the venclexta.com website.

I hope he sees his neutrophil counts lift soon, though you know how to be extra careful about infection risk now. I well know how you and your husband feel while waiting for the time to pass for the next blood tests, then nervously waiting for the results.

Neil

[lisakc1 in reply to AussieNeil]

Thank you always for your informative and thoughtful replies, I must admit, we are getting treatment weary and so ready for umrd. With side effects from treatment , edema, bowel issues, constant fatigue, followed by Neurtropenia, skin cancer and now more neutropenia, it just wears on you. So many people experience even more severe reactions, I don’t mean to complain. We are literally counting the days, praying for a long remission and eventually a cure. Thank you again. His last blood work was March, he was doing so well, his specialist put off labs for 2 months, I want to see minimally, monthly labs to insure his neutrophils are 1 or greater. We’re back in our bubble for a couple of weeks, We both got our Covid booster a week ago for protection. Perhaps this strained his fragile neutrophil count. Thank you again for your help!

[Pacificview in reply to lisakc1]

Hi,I will tell you that I blood tested a week ago prior to my 6th obinutuzumab infusuon. I had full dose 400mg Venetoclax for over a week just after the Venetoclax ramp up.

My WBC was 2.4, ANC was 1.5, platelets 171, RBC 4.58, HGB 12.8, ALC 1.1

Because of the low ANC, ALC, WBC. It was decided that I would have bloods every two weeks instead of four. This is at UNC hospital facility Hemo/Oncology dept here in NC.

I was not asked, I was told....every two weeks.

Now UNC has protocols, I suspect I tripped theirs or the Pharma Companies etc.

Hope this helps

John

[SofiaDeo]

Sorry to hear he is having problems. Re:the reduced dose, there are a number of people who end up on what is now considered a "reduced dose" of 200mg. Since the drug is so new, it's difficult to say if this will affect their overall PFS or not. But the thinking in cancer treatment overall is to "not overdose" when neutropenia keeps occurring. The Venclexta package insert dose modification recommendations illustrate this concept. In other cancers, using standard chemo agents, I saw docs modify the dose for patients regularly due to persistant neutropenia. One person told me their CLL specialist stated about half his Venclexta patients were on 200mg. Their doc is a well known clinician and researcher, so sees a fair number of CLL folk. IMO it's not super unusual.

With his absolute lymphocytes being so low, it seems the drug is indeed getting into his marrow and affecting the CLL. So it doesn't seem like the dose is too low to be working. The neutropenia staying too low for extended periods of time, is likely a larger overall risk for him, than staying on a lower dose of Venclexta.

[lisakc1 in reply to SofiaDeo]

Thank you so much SofiaDeo, I'm not sure when our emotional state transitioned from "its only a year" to "counting the days"... one thing I didn't add was, a horrible case of vertigo, accompanied by much nausea and more fatigue, which I do not attribute to CLL or the treatment plan, just one more thing! Thank you again!

[Pacificview in reply to lisakc1]

Shoot, I am counting the days and I have 10 more months! So I totally understand how you feel. I have just completed two weeks of 400mg Ven. These drugs all have side effects, so its no wonder we count the days....well, months for me...:)I am counting down the infusions, 3 left. I have not been a fan of the side effects after infusions. They last about 4 or 5 days, the worst of it. The amount of water I have to drink to stay hydrated is rediculous.

[Poodle2]

We are all different but I have had neutropenia from day 1 of the treatment (my neutrophils were 0 on the day I was meant to start)and I'm on a maintenance dose of the GCSF injections. I was having 5 of them in a row - based on blood results - during the initial couple of months (ramp up). From about cycle 3 I had them 3x a week, dropped to 2x a week, around Christmas dropped to 1x a week. Stayed on that dose till cycle 10 it think (or 11) when I became severely neutropenic again (0.3) so back to 2x a week. I'm staying on 2x GCSF a week till the end of cycle 12. Then back to 1x a week for a month and then we will see. It was never suggested to lower the V dose, my consultant always preferred using the GCSF regularly to keep the neutrophils in a safe range. Not sure what makes them go one way or the other - just sharing my experience.

[AussieNeil Administrator in reply to Poodle2]

Hopefully you won't exceed my 200+ G-CSF injection count, though most of my use was from before I needed treatment. Unlike you, my G-CSF requirements reduced when I began my obinutuzumab infusions and I breezed through the venetoclax ramp-up. Some have bone pain from G-CSF shots, which can usually be handled by Claratin (loratadine) or Tylenol/Panadol (acetaminophen). Thankfully I had no side effects, provided you discount the occasional bruising and times I hit a nerve.

[Poodle2 in reply to AussieNeil]

Hopefully I won't, Neil!!!🙂my consultant thinks once I stop, they will recover although she also mentioned they would need a bit of time. I do have bone pain from them but it doesn't happen every time and it's not too bad, I'm aware of it but I can function with it. It is what it is, I'd rather take them. When I was on them 1x a week and my neutrophils were hovering around 1.1, 1.3 - for a couple of months, I suffered with 3 infections that required antibiotics (one of them puzzled my GP and he didn't have a clue what was going on)...so I would rather take them as I can see it helps. Only 15 days of V left now, unbelievable.

[lisakc1]

Thank you so much for your reply. At some point we are all at the mercy of our trusted specialists, and we just have to pray that they have the correct treatment plan for us. The link that Aussie Neil says, does indicate lowering the V dosage, but everyone is different. Since my husband's absolute lymphocytes are low and we are on the final cycles of the treatment, I'm not as concerned. I just felt that he should have been monitored more frequently, since we have no idea when the neutropenia began. I suspect, that since we are basically wiping out both healthy and unhealthy B cells, scrubbing the bone marrow, that its not unusual for Neutrophil counts to be impacted, but everything I know, I learned from the true experts in this group. Claritin will be our new best friend if he requires injections next week! Thank you again, and hoping all of your blood levels return to normal range very soon!

[Mandy56]

I had FCR, so can’t comment on the treatment, but I was neutrophenic after every treatment. The GCSF always helped, but I also googled food that boosts neutrophils and so ate a lot of beans, broccoli, green leafy veg and pumpkin seeds. Worth a go?

[Steffi50]

OK this post was some time ago so may not get an answer. I am on V&O. My neutrophils tanked from 1.9 to 0.37 in just 10 days, WBC 1.5, so my last O was cancelled today and I am off V for a week. I injected G-CSF yesterday and am hoping for some recovery by next week. I am practically isolating as I am febrile and do not want to get any worse. How long should it take after injection for things to improve.

[AussieNeil Administrator in reply to Steffi50]

Hi Steffi,

I don't know if you saw lisakc1 's reply?

healthunlocked.com/cllsuppo...

Going off V for a while and having a G-CSF injection should help, but we are all different. You might need more frequent G-CSF shots until the obinutuzumab does its work on you bone marrow. At least you can be encouraged that your neutropenia is being well managed.

Neil

[lisakc1]

Hi Steffi! Hang in there! My husband was asymptomatic with his neutropenia, but I feel it is important to lay low until your neutrophils are >1 since you are more susceptible to just about everything. The biggest thing we learned is to take Claritin BEFORE your injection. He had severe bone pain without it. He had injections for about two weeks, and things improved rapidly. These are very powerful drugs, and everyone reacts differently. The good news is your body is responding to the medication, just a little too well. The injections will help tons, and I hope you are feeling better very soon. Be sure to inform your specialist about ALL of your symptoms so they can properly care for you. Hoping you are feeling better soon, and try not to worry. My husband had neutropenia twice, once before his last infusion and the second time about 3 months before the completion of his treatment. He only required GCSF injections the first time. I hope this helps!