Ultra V - Cycle 4

[WDSmith]

Hi, all,

I wanted to give an update on my husbands progress in the Ultra V trial (3 drug combo:Ublituximab, Umbrilisib, & Venetoclax) . (For reference - ha - this is his first treatment, 13q, unmutated, Notch1)

He is almost done with Cycle 4, which is the cycle where Venetoclax is added/ramping. This week he went from 100 to 200 mg. Next week (day 1 of Cycle 5) he will go to the full 400 mg dose.

We are super excited that he has experienced minimal side effects during the ramp up so far. Mild fatigue similar to the early days of the trial has returned but it doesn't keep him from working out or yard work - he just takes an extra catnap during the day. Still enjoying a bourbon or homebrew at the end of a good workout / long day.

He is fanatical - hehe - about drinking the recommended water plus some. He was already a super-hydrater pre-trial, though.

The CT scan at the end of Cycle 3 showed all nodes and spleen were resolved. His blood work has remained in normal ranges for every marker they are tracking.

So far he is still taking all of the trial meds in the morning (the clinic asked that he do that at least for now) but he does take the umbrilisib and venetoclax an hour after breakfast. He has moved the dapsone (antibiotic) and allopurinol to the evenings. We're hoping in another month or so they will let him drop the allopurinol as he is at next to no risk of tumor lysis at this point.

[Psmithuk]

Sounds really good! Hope this continues smoothly.

Cx

[cllady01 Former Volunteer]

So good to hear. I may have spoken with your husband in the infusion room on Tuesday. If that was him with whom I had a conversation, I must say he is looking quite well. I enjoyed meeting him (we didn't even exchange names--I should have at least shared my user name) but, now I have.

The conversation we had around his treatment, CLL and its complexities, and this site were the first time in my 20 years with CLL I have talked with anyone else face to face who has CLL. ---even in waiting rooms over those years, I had conversations but none with CLL patient.

While I am not being treated, I was taken to the infusion room (my first time to see the infusion room) to wait for a blood draw result specific to platelet levels for a procedure to be done on my slowly degenerating back at another facility and not related to CLL.

Thank you for the report here and best wishes for continued good results. These new trials seem to be very promising especially for the younger, fit CLLers. I do hope all will continue--as he described his day--he had gotten there at 7:30 and was to leave at 2:30, but he was busy working on his laptop when I first sat down, so he does let moss grow under his feet it appears. Good on him!

[WDSmith in reply to cllady01]

Hi!

Yes, that was him! He was charmed to meet you and told me all about it. I pointed out to him that you are probably the first person he has actually spoken to with CLL in real life too. Wish I could get him to do it more often! hehe Sorry I didn't reply here sooner - we were away on a short getaway and so we 'put all of this down' for a time.

It is funny that in such a short encounter you pegged him correctly as not letting any moss grow on him. haha. In fact he is back over there again as I type (and I'm in a nearby Panera - thanks, Covid!) for his Cycle 5, day 1 infusion and the last step in the Venetoclax ramp up - going to 400 mg. We've sure been appreciative of the care he has gotten over there.

Best wishes for your upcoming back procedures. Hopefully you will have a great outcome!

[cllady01 Former Volunteer in reply to WDSmith]

Hello and thank you for getting back to me. It is so good that you two got away for a bit and that he is doing well on the treatments. I had not thought about your not being able to be there with him, though it should be obvious with the waiting room being less populated at my appts. now. I've never had anyone with me for my appts., because of my indolence.

I was quite impressed with his overall demeanor and willingness to converse for the short time we had-- and so happy to hear he can continue with his work--happy for the recipients of his work also.

It is amazing that we see so many patients join here and that I have gone 20 years without knowingly having a face-to-face with another patient.

There is a CLL group that has met at the hospital facility, but I have never been able to make the meetings. I would assume they are not meeting with Covid now. Below is a link to the latest announcement with the pertinent info you can bookmark to keep in mind, if there is a time either or both of you might want to join---it says Virtually now and the date is 2021--I haven't read all of the site, to see what that may mean.

But, just for your information if it might help you as the caregiver if he is not one who would want to do such. (I am not a virtual member either; somehow I can't get excited to learn about how to virtually connect for a meeting.

cllsociety.org/event/nashvi...

I agree with the care given and it so helpful to have all the RNs available because their training makes them carers in helpful listening and relating that many Drs. do not get--and it frees the Drs. to concentrate on the disease and research, at least in Dr. Flinn's case. He is such a nice gentleman, I do appreciate him, too.

Thank you in regard to the back situation. I will have a first epidural caudal steroid (I hope) on this coming Thursday--I had to cancel last Thursday with a last minute ride being unable to take me. I have it set now and this one will be able to make it--barring covid, of course. We live in such a tenuous time.

[sllincolorado]

This is all great news - especially for those of us just a few steps behind on this same trial. I am on Cycle (month) 4 Week 2 just started 50 mg Venetoclax. No tumor lysis issues - lots of water, lots of blood tests (at my request). So far no side effects from venetoclax.

Someone else on this trial has had very, very low neutrophils during cycle 1 , week 2. Not an issue I had. They are addressing the issue and the person remains on the trial.

Good to remember that each of us will react to these trials very individually. Some with minimal side effects, some with notable side effects and at different points in the process.