help with three choices of treatment Venetoclax,Imbruvica or a clinical trial with Ublituximab + Umbralisib in Combination With Venetoclax

[michaelmac]

I everyone

I am a 73-year-old male, trying to choose second line treatment. I am currently receiving my treatment at Moffitt Cancer Center in Tampa Florida.

My front line treatment was a clinical trial, and I finished the main part of the clinical trial five years ago, but continued to take Redlamid (lenalidomide), which I stopped taking three weeks ago. The reason for stopping is that I started to have enlarged lymph nodes (CT) indicating the drug was not working any longer.

Now, I need to choose between the above three options. I have done a fair amount of reading on Venetoclax, and Imbruvica but have not found anywhere that people have chose one over the other ,,,,, and the reason why they might have done that.

I have also done reading for information on the clinical trial that includes ,Ublituximab + Umbralisib in Combination With Venetoclax , but I've not seen anywhere that people have talked about using/choosing it over Venetoclax, or Imbruvica.

Another question I have which I may need to ask again separately, but I'll throw it in here to see about getting some answers.

In this clinical trial that I've been offered which includes ..Ublituximab + Umbralisib in Combination With Venetoclax. I've been told that the drugs , Venetoclax, are not paid for. Now I assume that any IV ( infusions) will be paid for under Medicare part A. But,I do need to recheck that. I've done lots of googling trying to find other clinical trials where the drugs were not paid for ,but have had no luck whatsoever. So, I'm assuming that this is fairly unusual. There seems to be three or four research institutions that are carrying out this trial. So, I guess they are getting patients. My experience, and that of other people who have participated in clinical trials is that ,,,, .... They require lots of extra testing, monitoring which puts an extra burden on the patient. I like the idea of clinical trials but, I'm not sure that I want to pay 10 or $15,000 ( witch is what my insurance company is telling me the cost of the Venetoclax will be) on top of the substantial amount of extra hours dedicated to CT, bone marrow biopsies, and other general Lab work in monitoring that is involved with a clinical trial.

Anyway all in any comments would be very much appreciated. I hope that everyone is having good results from the treatments that they have chosen.

Michael

[Spacee]

Hi Michael, You definitely seem more knowledgeable than I (to start with).

But putting my 2 cents in. And BTW, my hubby is starting a Clinical Trial at Moffitt but not with those drugs. One that is similar immunomodulator. Starts with a P and ends with the mab. I will look it up later. And Ibrutnib.

He is 71 yo and treatment naive, and really no symptoms except his white

count doubled.

It seems to me that while the clinical IS a a hassle with all the testing, it would give you a chance at being in remission, possibly for the rest of your 70’s. And if you choose to not be in the trial, from my reading, I think they would have you on Venetoclax. Or even both Venetoclax and Ibrutinib. Quite pricey. At least you are only paying for one on the trial. And it does

surprise me that you would have to pay for the IV. Because that is the main ones on trial. The Pharmaceutical Company should pay for those.

Anyway, personally from my reading, we would have chosen Ibrutnib first and Venetoclax second. And I can’t give a good reason here. Just from reading the boards for a couple of years. But we would have switched them around IF our doc had a good reason for doing so.

If you do not do the trial, I am concerned you will get into the Richters Transformation. And that would be bad news.

I am not well. I am like most CLL patients in that I look perfectly healthy.

My quality of life depends on my husband feeling well. I like living in Florida, in our home. My son would want us to move to Birmingham into an assisted living place. I do not tolerate flourescent light and any kind of

sounds for very long. But that is our reason for the trial. I know you must

weigh the options for you.

Wishing you the best.

Linda (Spacee)

[michaelmac in reply to Spacee]

Hi

thanks for the reply, it really helps to hear from others

I would be very interested in hearing about the trial that your husband is on. However it sounds like he may be a frontline/first time treated patient. So, his trial would not apply to me.

I believe, and I have not checked this that IVs/intravenous medication is covered by Medicare A,,,but I'm having problems with his Medicare be part. Which would be the Venetoclax ,,, that is what I'm thinking I'll have to pay for and as I said insurance company says around $12-$15,000 ,,, this is by the time you do the co-pay, the doughnut hole, etc.

the 10 or $15,000 I can handle ,,,,,the problem is if I understand properly I would continue to take the Venetoclax for years ,, and over the 10 year period.... that could be $150,000.that I can't do.

as I said the first time around I did the clinical trial, my doctor was excited about it and I knew that it might help people down the road ,, and all costs were paid for. I know from doing that trial that I spent lots and lots of extra time at Moffat, which is fine. Even with the 2 1/2 hour drive each way. During infusions this meant getting up at 330 in the morning and not getting home until nine o'clock ,,,,,some days. But, I'm afraid this time around I'm going to have to pass if I'm required to pay for the drugs,unless the new trial that I am being offered is what my doctor strongly prefers.

It's kind of a shame that we have to make medical decisions based on dollars bu there it is ,,,, and that's not going to change soon.

I do have the alternative of going to the VA however,,,,,,,,,,,,,,,,

anyway lots to think about

I hope your husband does very well ,,, my feeling is that Moffat is a great place to get treated ,,, not good but great.

thanks again for your reply

m

,,,

[Spacee in reply to michaelmac]

Yes, I agree MDA probably a great place but Moffit is good. Wow, I really do not know how you did those very long days. Yes, hubby’s trial is for the treatment naive. He is 17p- and the TM53 thing so they have wanted him for a trial for a while. We had to turn it down a couple of years ago because of his work.

IF your trial could put you into a remission that would let you not take the Venetoclax. Then I would consider it. But I do understand $150K over 10 years. I had forgotten about the donut hole thing. Ugh.

So, it would be a gamble. Hope for complete remission after the trial.

Or not do the trial. You see, you could do a year on the Venetoclax in the trial. And see what happens. Hoping for the best. Meaning no more Venetoclax after trial. Even though the docs say you would stay on it.

They might be wrong. Those would be some good IV’s coming your way. Just my thoughts.

Linda

[Hoffy]

I don't know these details trials but combo's with Venetoclax have done well.

Venetoclax is a very good drug for CLL,

I am on the Captivate trial of I plus V and I have done well so far,

Be well,

Hoffy