V&O treatment

[Stavrou1]

Hi all I am now over 7 months of my years treatment with , V&O and doing OK after several bumpy rides. Just wondering when they will start decreasing the dose of Venetoclax and over how long does it take .

😊

[lankisterguy Volunteer]

Hi Stavrou1,

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I don't think there are any protocols or practices where venetoclax / Venclexta doses are reduced unless the patient is experiencing side effects. So if your "bumpy rides are over or controllable, you will likely continue at the standard dose of 400 mg venetoclax / Venclexta per day.

By now you have probably had your last obinutuzumab / Gazyva infusion. If you have side effects that are not tolerable, you should discuss those with your doctor/consultant.

See this page for the dosing schedule: venclextahcp.com/cll/dosing...

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Len

[Stavrou1 in reply to lankisterguy]

Thank you lankisterguy for your reply.. I had my last Obinuzumab /Gyva infusion in May . I had very tricky start for several weeks.. Tolerating the Venetoclax on it's own well .

The end of my years treatment on Venetoclax should finish in Dec !! . I thought they would have to decrease the dosage slowly before coming off it ! . I will bring it up on my next appointment in 3 weeks .

If it does stops how often are we monitored monthly !! . Does any one know .

Hope am making sense. Am not good at explaining.

😊

[lankisterguy Volunteer in reply to Stavrou1]

Hi Stavrou1,

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Unlike drugs like steroids / Prednisolone, the targeted therapies for CLL are usually stopped without a tapered dosing. There are very few reported cases of a withdrawal reaction or tumor flare from venetoclax.

What you may experience is a blood test for MRD - Minimal Residual Disease, and if the test cannot find any CLL cells, called MRD-U, you may have a long time until your CLL returns. Your medical team might even discharge you back to your GP for monitoring on a 3 month or 6 month basis.

Your consultant would be the best source to explain what the NHS does in your area.

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Len

[Stavrou1 in reply to lankisterguy]

Thank you so much , you have explained it so well . Fingers 🤞 I will be lucky . Am not usually. Have to be positive

[mickimauser11 in reply to Stavrou1]

I did shortly before the end of therapy but fast always 4 days inbetween dose reduction It is not necessary but I think it is better for the immunesystem in order to adjust otherwise it is like a jumpstart.

[Skyshark in reply to mickimauser11]

Reducing the amount of food Venetoclax is taken with will affect the uptake. The unfed uptake is 30% of the normal fully fed uptake.

Venetoclax uptake v's calories

[Stavrou1 in reply to mickimauser11]

Thank you for your reply. Everyone has been so helpful.👍😆

[Stavrou1 in reply to mickimauser11]

Thank you , I would of thought the same better for the immune to adjust , regardless of age !. The experts know better. 😊

[Poodle2]

I finished my O+V treatment in June. First check up post treatment was 4 weeks after my last V tablet. Had another test 2 weeks later to check my neutrophils as I have suffered with neutropenia the whole time. My next check up is 3 months post treatment with UMRD testing done at that point too. I stopped the V tablets at the full dose, just finished the cycle.

The frequency of your blood tests post treatment is probably very individual, depending on your numbers and how well you responded I would say. If my next blood test is fine, I will go to 3-monthly blood tests.

[Stavrou1 in reply to Poodle2]

Hi Poodle Thank you so much, once again everyone has helped me to understand more . I know you have had a tough time bless you . I hope your do well 🤞 .

I have been lucky with my neutrophenia , only had a problem at the beggining , bit scary at the time. I was admitted 3 times for several days and all good after that . Really hope you do well. 😊

[Poodle2 in reply to Stavrou1]

Thank you, I hope so too but I try not to think about it too much. I'm feeling much better now and that's enough at this point. It has to be. Hope you get through the next few cycles fine 👍🏻🙏🏻

[Stavrou1 in reply to Poodle2]

Thank you Poodle . I hope so too . I am terribly anxious , haven't not slept through the night since being diagnosed in September 2020. Got out of hand ,. Am under phcylogist and have been diagnosed PTSD. I kind of knew that . But was good to hear a professional say it. Have to try and stay positive. 😊

[Poodle2 in reply to Stavrou1]

It is not an easy thing to go through. I feel much better mentally now, once things calmed down during treatment and my blood numbers improved, I started to feel more positive although it is still hard, I know I have finished treatment and that I'm better but I also know it's the beginning of another w&w and waiting for things to get worse again. I liked how someone else on here worded it once - when you finish treatment you know you won just one battle but the war is not over...I'm very sure you will continue going through the rest of the treatment well and I'm glad you are seeing someone to keep you on track mentally 👍🏻 all the best ❤️

[Stavrou1 in reply to Poodle2]

Thank you Poodle , so glad you feel more at peace . Who ever worded you won the battle but the wars not over !!.how true is that ! . ❤️

[mickimauser11]

I knew this they did an MRD test twice during my therapy and after the second one it was possible to discontinue therapy so I downramped Venetoclax because I’m older and I didn’t want to jumpstart my immunesystem (that is our main issue because other cells of the immunesystem are affected by the disease as well.)

[Stavrou1]

Thank you mickimauser. That makes sense if your older to downramp the Venetoclax. Hope your doing well. 😊

[Classicaljazz]

I took 400mg for the full year. There were no side effects when I just stopped the venetoclax when the last bottle of pills ran out. It has been a little over a year now. for the first 9 months I had a CT scan, labs and a clinic visit at 3 month, then labs and telephone visits at 6 and 9 months, and will have a telephone visit followed by labs next month (so 6 months from my last phone visit). Every 6 months seems fine now as I have no new symptoms. It will be interesting to see if my B-cells have returned at all from the effects of the obinutuzumab, since there were still zero in February, measured by 0% CD19 cells on a lymphocyte panel. It will make a difference in deciding on getting vaccinations or postponing them and just continuing to work from home.

[Tabbytabby in reply to Classicaljazz]

What test is used to measure your B-cells? How often is the test done? I would like to know what my B-cell count is. I have finished O and have 5 months left of V. Thank you.

[Poodle2 in reply to Tabbytabby]

I think it's called the immunodeficiency panel, at least that's what my immunologist requested and he explained it was to check the B and T cells.