I am currently under treatment for my sll with obinutuzumab and Venetoclax.The O infusion is going quite well, but I can't tolerate the Venetoclax even at the minimum of 20. My Anc numbers drop too low. Is it possible that I simply can't take it, and only do
the infusion. I have not consulted my Doctor yet. Has anyone had this issue?
I have been on the same treatment and just finished infusions last week. What have been your ANC numbers since just before you started treatment? Its normal for Neutrophils to drop with this treatment. Then typically they start to recover as you get further along.Mine dipped to 1.0 and have now recovered to 1.8 at the last preinfusion draw last week. Took two months from 1.0 to 1.8.
You mention Venetoclax reactions, not reaction. So are you having other intolerable side effects beside low Neuts? What is your ANC trend?
By the way, welcome to our group. Great place to bring questions.
John
My ANC was 2.0 at the start, but each time I start taking the Venetoclax it drops to .05
That is dangerously low. So I stop and it goes up to 2.0. This has been repeated 3 times. Over the past weeks. I guess I am losing my patience.
Venetoclax really does a numer on my body.
For one, you are not alone in these side effects. O & V has been quite unpleasent for me with a ton of side effects. Although all are tolerable. Some us get no side effects and some do. Its a bit of a roll the dice.I started at 3.2 and the 1.0 was my lowest. My Neuts were slowly declining all through Obin infusions. But starting at infusion #7 they started to recover.
The Obinutuzumab is what walloped my ANC.
Typically there is a lot less neutropenia after Obinutuzumab is finished.
You can look on the Genetec website under the protocol and side effects. They have a graph on side effects while on O and V and then after O is completed.
Thank you! It is hard to go from being a Very active 72 year old--to being on a roller coaster of fatigue and assorted pain. I have been lucky to have had good health all my life. This too shall pass. Thank you.
Keith
Say a prayer for me. I need all the strength I can muster.
Hi Lisbon2022,
Neutropenia is a known side effect of Venetoclax treatment. I’ve been on V mono therapy since April 2018. By September that year, my ANC was 0.3. V was paused, dosage reduced to 300mg and I had G–CSF injections for a week. By November,. I was back down to 0.4 but I was clinically in remission. Another pause, G-CSF injections and my dosage was reduced to 200mg. I’ve stayed in remission ever since! My ANC bounces between 0.4 and 1.0. I’ve also had IVIG infusions every 28 days since 2013. I did get Covid last year but I haven’t had a cold or flu outbreak since 2013.
Stick with it and go well.
Thank you for all the info. I was hoping theV would just be o.k. time will show us.
Actually, I should add that I had pneumonia twice during this time. October 2019 and May 2020. First time definitely caught at the local bridge club. I gave up my membership immediately! Not hospitalised on either occasion though my neutrophils were 0.6 and 0.4 at the time.
I don’t believe that is that unusual. My neutrophils dropped to 0.2. Had G-GSF and IVIG and neutrophils rose to above 1.0. This was before I even started Veneto ramp up. Had my last Obinutimab a couple of days ago. Neutrophils in blood test prior were down to 0.7. Will see what happens next blood test but not something I am losing any sleep over.
Thank you all of this support. It is makingthis cancer voyage more calm sailing.
Hi Lisbon, it is a known side effect of this treatment. If I'm right, about half of patients experience neutropenia. I was neutropenic for the whole duration of my treatment. Sometimes I needed 5 GCSF in a row, sometimes just 1 or 2 a week. I stopped taking them a month after I finished treatment as it seemed my body was able to make a sufficient number of neutrophils without the help of the GCSF injections. This was in July. I'm having another blood test in September and I hope that this trend continues. You might need a regular dose of GCSF to keep your neutrophils in a safe range. Your neutrophil numbers should slowly improve even when on the V tablets but from experience, they might dip again around months 9-10. As long as they manage your neutropenia, you should be able to continue with the treatment. It would be also advisable to discuss if starting to take other drugs to prevent infections (e.g. prophylactic antibiotics and possibly acyclovir) might be helpful to you. All the best and I hope you can continue 🙏🏻
Petra ❤️
Thank you for all this, Keeps me going.
Don’t give up. I was hospitalized 5 times ramping up. Developed tumor lysis syndrome..thought it was a no go. I now take 3 pills each day, with a meal and lots and lots of water,
Thank you, we all react so differently.Glad you have reached some tolerance
Of V.
Hi Keith. Many of us have experienced severe neutropenia during treatment, when ANC crashes to the floor.
One really important thing is to maintain close contact with your specialist team.
Another is to watch for early signs of an infection, especially raised temperature. Because with neutrophils gone AWOL, bacteria can have a field day and rapidly swamp your body's other front line defences. In a matter of an hour or two, neutropenic sepsis can have you fighting for your life. I hope that your specialist team has given you the safety protocol to do with this, so you know when and how to press the panic button and speedily get yourself to the unit where they'll infuse you with antibiotics.
As others have noted, GCSF can temporarily boost neutrophils, and your specialist may determine that's appropriate for you.
Best of luck.
Are you eating at least 25% more full grams of protein & micronutrients since starting treatments? We need extra to make extra cells, because much of our bodies' energy during induction is being used to metabolize & excrete the dead CLL cells. Plus our body needs to make even more than the usual number of neutrophils, platelets, whatever else may also be affected by the drugs. So unless you are protein/calorie restricted, some extra cell building blocks can help. You body will likely "adjust" to making extra, if it has the extra nutritional building blocks on hand.
If you are eating what you usually eat, with energy going to metabolize/excretion, I can see why you may have problems making new cells. I remember the nurses on oncology teams I have worked with talking to "standard chemo" patients about how important extra nutrition is during treatment. I assume it is the same for us.
I ate 60-70 gm protein daily during induction, weighing about 135 & with 37 grams recommended minimum. So I ate double the minimum. Not everyone can tolerate doubling their protein, especially all at once, so a 25% increase isn't a huge amount. If it seems to help, you can increase it more. I make a protein smoothie to get this much in without lots of calories. I like egg white protein, but whey is also popular. Vegan options need to be "complemented" since brown rice or pea proteins don't have the same amino acid profile as egg, and can't make the same amount of muscle unless supplemented with the amino acids they are lowest in. So a 12 gm serving of pea protein actually has about 6 gms of "totally matched amino acids" to build with, one needs to add a source of tryptophan and sulfur containing amino acids, methionine and cysteine. With methionine being the initiating amino acid in the synthesis of virtually all proteins of our cells, if one is vegan or choosing vegetable proteins, I would recommend eating Brazil nuts especially. And try switching to quinoa instead of rice as a side dish, since quinoa has a close completely balanced amino acid profile like meat, chicken, fish.
Good advice I do try to eat more, and have always had a very nutrition based diet.
I found it difficult to just eat a lot of extra food, making a protein shake did it for me. I don't like the sugar and chemicals in commercially available products but it would be better than nothing, if your body is OK with them. The flavorings, etc. set off my fibromyalgia so I can't purchase pre made protein shake products. But it's easy to put the powder & some frozen berries with water in a blender, just a few minutes and voila!
Great advice, thank you.
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