Ultra V - Cycle 2

[WDSmith]

Another quick and luckily boring update.

Husband had day 1 infusion of Cycle 2 for Ultra V today. Cycle 1 passed pretty quickly with very little side effect. He is having a bit of chronic fatigue. He is getting through the day with a few small naps (or sometimes a decent afternoon nap) and luckily with his academic job and it being summer he can work around that.

He has been able to workout throughout (avid biker / runner prior to CLL/treatment) but between the heat (we're in southeast US) , possibly age (but don't mention that to him- ha!) and the fatigue he feels he isn't getting the intensity he is used to. "There's no pop in my legs" he says. We're pretty thankful that is the worst we can complain about.

In the last few days he has a had a rash turn up on his legs and hands/arms...but again we're not sure if it might have been from heat/sunscreen and working out in the yard. Time will tell.

Today's bloodwork was perfectly normal for the first time since diagnosis (19 months ago)- we were pretty excited about that today.

Some may have seen my mention on another thread: We're still struggling with teenagers in the house in the age of covid... and how much to limit their activity and/or just lock him up in the house away from them. We're probably going to go with the "remote plan" our school district is offering since I have to think the local high school will be a hotbed of covid transmission and we're not willing to risk it.

Next appt not for another month.

Wendy

[PlanetaryKim]

Congratulations on that perfect bloodwork after just one cycle. Sounds like he's doing really well on the Ultra-V!

[Aliciag1985]

I am new to this page but searched for "ultra-v" because my partner has chosen to do this trial. He is 64 and diagnosed in may. He is already suffering from extreme fatigue, he has very low hemoglobin (7-8). Did your husband already suffer from fatigue or do you know if this Tx has caused it? He is going in for a marrow biopsy Thursday as a requirement for the trial. I am so nervous for him. I also work in a high school and here in OR sounds like we might do part on campus/part online. I am nervous about being called back to work and having my partner doing Tx and home :/

Good to hear your husband is doing well.

[WDSmith in reply to Aliciag1985]

He did not have fatigue before starting. His ALC was climbing quickly (doubled in about the last 2 months prior to starting treatment). At the time we started talking about treatments it had gone up 50% in about 5 weeks, which was the criteria that got him in the study. He had some node involvement and his spleen was getting uncomfortable by the time meds started.

[TheFlyer]

Hi what is Ultra V is this a new treatment emerging from the States ?

[WDSmith in reply to TheFlyer]

It is a 3 drug combo from TG Therapeutics. Multi-center Phase 2 trial.

Ublituximab and Umbralisib start in Cycle 1 (28 day cycle).

Ublituximab infusions only last for cycles 1-6 then stop.

Venetoclax ramps up during Cycle 4.

clinicaltrials.gov/ct2/show...

[richutchens]

Nice to read that blood looks good. I start cycle 3 tomorrow. The first month was very difficult. Fatigue rules. No rashes though. Good luck. I’m in Florida.

[Lynnibeth in reply to richutchens]

I’m thinking about starting this trial, did you have fatigue before starting it?

[richutchens in reply to Lynnibeth]

Yes I did.

[Lynnibeth in reply to richutchens]

Thank you, fatigue is the symptom that affects my life the most. It’s one thing I hope would get better after the drugs have time work.

[richutchens in reply to Lynnibeth]

I’ve been in different treatments the last 5 years and still have not been able to be the fatigue issues. Hopefully after Ultra V, it will get better. I’ll tell you in another 21 months.

[Wetumpka]

Sounds great so far. Blessings.

[kimiD]

Fantastic new about the normal labs! Hope your husband continues to do well.

Kim

[Canuck901]

Wow excellent news , has he started the Venetoclax?

[WDSmith in reply to Canuck901]

Not yet. That ramps up during Cycle 4 for this study.

[Smakwater]

Good news on the blood work WDSmith,

Do you have a trial id number for the ultra-V?

JM

[WDSmith in reply to Smakwater]

Here is the link on clinicaltrials.gov:

clinicaltrials.gov/ct2/show...

[Smakwater in reply to WDSmith]

Thanks WD,

I since found the link in your response to ThefFyer.

[Fran57]

Great to hear the word boring in the context of CLL and treatment!

Hope it continues .

Fran 😉