Clinical Trial

[Crafting43]

I'm new here, first post. Is any one on this clinical trial Ultra-V with Ublituximab in combination with Umbralisib and Venetoclax? I had a second opinion with a CLL specialist. My first oncologist, stated I was a stage O and to keep in watch and wait. With my new doctor he states I am stage 2, just based on my symptoms, not so much my numbers and he wants me to start treatment and possibly do this trail. Any thoughts?

[Smith123456]

if a trial involves venetoclax-which seems to be the heavy lifter-in most trials- i would say yes

[Crafting43 in reply to Smith123456]

Okay, thank you for your reply.

[AussieNeil Administrator]

There are a few of us on this Ultra-V trial per these posts:

healthunlocked.com/cllsuppo...

[Lynnibeth]

I am doing this trial now, just completed cycle 1. I decided to this one because I felt like it was best for me at this time. I would research your options so you can make the best choice for you. This definitely isn’t an easy decision to make. Do a search for Ultra V, I think there are 3-4 people more here that are on it.

[Crafting43]

Thank you for your reply. This was the only trial he offered. If I don't go with the trial. He still wants me to start on the Venetoclax. Are you having any side effects? My worries are the side effects and will I still be able to work.

[Lynnibeth in reply to Crafting43]

The biggest side effect I’m having right now is fatigue, I’ve had some stomach upset but manageable. I had already reduced my work week to 2 days a week before my numbers took another big jump. I was trying to reduce my Covid exposure. My job is very active - I work with kids doing PT. I am really exhausted on the days I work but I’m hoping this will improve over the next little while. Depending on your work schedule and what you do you may end up having to take a few extra days off in the first and fourth cycle. Did they give you a copy of the study details?

[Crafting43 in reply to Lynnibeth]

That's what I worry about most. Being even more fatigue. That is what I am dealing with now. It is horrible most days. I only have to go in the office 2 days a week. The rest is from home. With Covid, I was aloud to work from home. Which has been a blessing. Yes I have all the info on the study guide.

[Smakwater in reply to Crafting43]

I was treated with Obinutuzumab plus Venetoclax, and I found it very tolerable. I was able to function normal with the exception of having to be near a bathroom due to the hydration requirement (64 plus ounces during the day).

You may need some time off in the beginning until you adjust to the G.I track issues and mild nausea. With me, I was able to overcome the nausea by taking Venetoclax after dinner and just before bedtime.

I suppose that it will depend mostly on your overall health and the requirements of your occupation.

All the best,

JM

[Crafting43 in reply to Smakwater]

Thank you for your response. I am healthy otherwise. So hopefully mild side effects only.

[sllincolorado]

Hi Crafting. I am sorry that you need to join us but glad you found this site. It has been a great resource for me.

I am on this trial but I have not started Venetoclax yet. I think the first issue is whether it is time to start treatment. I would separate that decision from the type of treatment.

Do you agree with the specialist that based on your symptoms you think it is the right time to start treatment?

I would normally defer to the CLL specialist if they said to start treatment but I am a bit skeptical these days and it would actually depend on the specialist.

[Crafting43 in reply to sllincolorado]

Yes, I do believe it is time. My first doctor tried to tell me that my enlarged lymph nodes and my fatigue was probably not coming from my CLL. He was a joke. I have worked in the medical field a long time and I was very disappointed in this doctor.

I was just shocked that my new doctor wanted to start me on something. This doctor sees 60% CLL and the rest Lymphoma patients.

I have a friend who is a NP and she worked at the Cancer Center and she recommended him and is really helping me in making my decision.

I think my biggest issue is taking time off of work and the side effects.

What side effects are you experiencing ?

[sllincolorado in reply to Crafting43]

The short story: Reaction to first infusion, ended up in the ICU. The two U drugs caused high bilirubin numbers (liver problem indicator); decreased dosage, things are fine.

The novel length story:

healthunlocked.com/cllsuppo....

[Crafting43 in reply to sllincolorado]

I read your story, you have been through a lot. I have not any meds yet. So hopefully I won't have that kind of reaction. I'm praying for you for a better outcome after all you have been through.

[sllincolorado in reply to Crafting43]

Thank you - I continue to improve each day and I do believe that we have many good treatment choices so if this one doesn't work for me something else will. I agree that you are unlikely to have that type of reaction. Whatever decision you make will be a good one.

[newyork8]

Is this your first treatment? What are your cytogenics? 11q del etc. Why not start with Ibrutinib. Works great for most including me. I'm unmutated mixed karyotype. No major side effects, no fatigue...some GI issue and bruising initially...no big deal. Perhaps being cynical...is he trying to get more trial participants?

[Crafting43]

Yes, this is my first treatment. I have not had my cryogenics test yet. That is in 2 weeks. I don't think he is. Because he stated that if I don't do the trial he was going to start me on Venetoclax with Gazyva. I have not had the work up yet to see if I'm even a candidate for they trial. Just getting input, like yourself.