What can happen with V+O in 3 months

[Rico49]

I understand we are all different and our our experiences are different. I am writing this to share what has transpired for me as an potential example for those considering V+O.

After only 10 minutes of my first infusion I had a reaction that really scared me but the nurses jumped in and got everything under control very quickly. My blood pressure crashed to 70/30 .I learned that a reaction during the first cycle is not uncommon. At the end of that first treatment I got a rash on my skin and they slowed down things again. So I thought well this isn't going to work for me.

Fast forward, they slowed down the infusion rate and I never had another reaction for the next 6 cycles.

My results so far have exceeded my expectations. When I began treatment on 6/13 my marrow was 95% infiltrated-wbc-25, plat 68, Hgb 9 and ANC- 0.9.

After my first dose of O on 6/13 my blood was checked on 6/16, only 3 days later : WBC 1, Plat 30, HGB- 7.4 Anc -0.6. I thought -yikes!

I was given a unit of blood . On 6/20 my ANC dropped to 0 .4 so they would NOT do the treatment. Was given Udenyca for my ANC and one more unit of blood on 6/25.

Everything from then on has ben smooth sailing. I started venclexta on Sept 1.

On Sept 12: WBC 3, Plat 169, HGB 11.6, ANA 2.2 (IN 3 Months) all other blood results good. Basically my blood returned to where it was 3 years ago in 3 months. I never expected that. I had a large swollen lymph node under my left arm that went a way in a month.

Except for mild constipation with venclexta ,solved with mira-lax, I have had no (ZERO) side effects. I did have a weird reaction 3 days after each infusion (jitters and restlessness for 2 days) but we concluded that was a reaction to the Compazine I took for 3 days after each infusion as a precaution for nausea. I stopped the Compazine and have had no issues and no meds for nausea. I'm very lucky!

I still have a long way to go but so far it has been amazing. I'm not tired all the time (HGB staying around 11.7) and I'm playing golf again. Amazing.

I know there is always the but.....

My Dr is very pleased and a recent PET showed significant improvement with my liver, spleen and lymph nodes all over . I still have a long way to go with two more O infusions and 11 months of V . I wanted to post this so those considering this protocol can hear a story of what can potentially happen. As I said I know I am an example of one and a very lucky man !🙏🙏

[Stamphappy]

Rico49, thank you for posting your V+ O experience. I do appreciate everyone posting their journeys...even though I'm dreading when my w&w comes to an end. Your post gives us all hope. 😊 I hope you continue to have great results and feel well enough to golf whenever you please. Best wishes and prayers for your continued success.

[Rico49 in reply to Stamphappy]

Thank you and good luck on your journey! There are several options and more on the way so try not to dread the treatment possibilities. Remember about a third of the people diagnosed with CLL never have to get treatment.