Question about V & O

[bonbeat]

I am close to finishing 1 year treatment with V&O. Does my year of treatment end 1 year from the first dose of O or 1 year from the first dose of V? Also, I have daily nausea, diarrhea, insomnia, hair loss and bone pain. When do the side effects stop? Immediately? Does it take a while for blood work to go back to normal? Thanks!

[Poodle2]

They say the treatment takes one year but it is 12 cycles, each lasting 28 days. That comes up to roughly 11 months. I had very similar symptoms to yours and I'm sad to report that my diarrhoea stopped about 4-5 months after I took my last V pill - it wasn't as frequent and definitely not as painful as when I was on the drugs but it took a while for my body to get back to normal. That's not to say it will be the same for you.

My blood work was basically back to normal after a few cycles with the exception of neutrophils. I had a severe neutropenia during treatment. My first blood test after a stopped the V pills (one month after I took the last pill) - my neutrophils were back to normal and have stayed there since.

[bonbeat in reply to Poodle2]

Thanks . The end is in sight

[AussieNeil Partner Administrator]

Similarly to Poodle2 , it took about 3 months for the, without warning, occasional diarrhoea to cease. My clnical trial nurse confirmed that it was usual for side effects to take a few months to resolve. My platelets and neutrophil counts took 3 to 6 months to recover, with my platelets only making it to around 130 or so. After treatment, my neutrophil and haemoglobin counts have been the best since from a couple of years before I was diagnosed.

Be aware that it takes up to a year or more after your last obinutuzumab infusion before your B cells recover. Until then, you won't be making much in the way of new immunoglobulins/antibodies. Also, until your B cells recover, you might experience Late Onset Neutropenia, where your neutrophil count can take a sudden dive for an indeterminate time. That's more likely if you have needed G-CSF shots into your abdomen skin to boost your neutrophil count enough for your infusions to continue.

Neil

[bonbeat in reply to AussieNeil]

Thanks. I know what to expect.

[NaturalWaze]

For me, it was a year from the ramp up to 400mg of Venetoclax. (I was bummed because I had calculated from the first pill!)

[Sewster]

I am also experiencing hair loss - although my doc said it’s not a side effect. Hoping it doesn’t take too long after I am finished with V (November) before it stops falling out!

[JerrysGirl3 in reply to Sewster]

I was told (I am taking azacitidine infusions and venetoclax ) and was told that the hair doesn't fall out it gets thinner!! Well for someone whose hair just started growing in. 1/2" and has thin hair to begin with I might just start seeing barbers for a "trim"!

[Sewster in reply to JerrysGirl3]

😄

[JerrysGirl3 in reply to Sewster]

😂

[bonbeat]

How about the bone pain? Did anyone experience that? I sure hope that goes away quickly as it seems to be getting worse instead of better. I thought I would be getting used to the effects by now but I have to remember that the medication effects are probably cumulative. I don't mean to complain but I feel like I am getting weary of it all although I am extremely grateful and I know many others have it much worse.

[AussieNeil Partner Administrator in reply to bonbeat]

Do you mean pain in your bones or joint pain? A possible side effect of G-CSF infections to boost neutrophil counts is bone pain, which can be countered by acetaminophen/paracetamol (marketed as Tylenol, Pandadol or APAP) and perhaps an antihistamine. I never experienced this, but I did have occasional hip joint pain, such that it was painful to sit and stand in the mornings in particular. That gradually improved as treatment progressed and went away when I finished treatment.

Neil

[Big_Dee]

Hello bonbeat

My V&O went from Sept to Nov the following years or 14 months. My blood test came down with in one months to close to normal. As far as the nausea, diarrhea and vomiting goes, I was affected 3-4 times a week. Now that I am 6-7 months past treatment the nausea, diarrhea and vomiting is diminishing. Blessings.

[Shefflass]

Hi Bonbeat. It seems to depend on the individual consultant's interpretation of the Venetoclax protocol as to whether the treatment time is measured in 4 weekly cycles or calendar years. I was on the 2 years Venetoclax and Rituximab regime and there was much discussion as to whether that meant 24 cycles of 4 weeks or 2 calendar years, a difference of about 8 weeks. In the end we went for 2 calendar years. And measured it from the first day I had ramped up to 400mg. I was fortunate to not suffer from joint pain, nausea or vomiting and am now so happy that the frequent diarrhoea I had for the 2 years disappeared within about 10 days of stopping Venetoclax. What joy 😊!