Cycle 8, Day 1 OSU Obin/Ibrutinib/Venetoclax Trial Update

[thompsonellen]

I hope everyone relaxed during the holiday season, and that you are all enjoying getting back to your daily routines.

This past Tuesday, I had my 8th and final obinutuzumab treatment. In addition to having no more day long visits to Clinical Treatment Unit for the foreseeable future, I’m also just past the half way point of the trial. As of my December test, cancer cells are down to .1% of my white blood cells (down from 82%+).

I’ll have a bone marrow biopsy (BMB) and full body CT scans on my next visit which is the 31st. Then, I’ll have just 5 more trips every four weeks and one more trip back a few weeks after that for yet another BMB and set of CT scans.

While the treatment was uneventful, the week wasn’t without challenges. I had, and am just now slowly getting over, a massive cold that made me a stuffed up oozing mess for more than a week. I likely caught it over the holidays from one of my 8 nieces or nephews who are under 10. In addition to feeling nasty, I was working overtime to cover people who were on vacation and to top it off, fighting with my son over getting his college applications (which I understand is a universal challenging experience).

My BFF trial friend (and fellow CLLSA member), who is a month behind me, had neutropenia (low count of neutrophils – white blood cells that fight infection – same thing I was fighting last month) and was denied treatment, which was just awful. They shot her up with Neupogen which is supposed to stimulate neutrophil production, and her count went down. She is still sitting in Columbus hoping she can resume treatment next week. I’m happy to report that as of today (Saturday) her counts have recovered and she should good to go.

I’d like to share an interesting tidbit I learned about uric acid and gout. When I was growing up, this was referred to as the “rich man’s disease” and in fact, too much rich food, e.g. seafood, meat and beer can cause gout. One of the byproducts of my chemo is one of my counts is off and it’s never the same one, so I’ve had to make dietary changes several times to raise or lower the numbers.

Last month, my uric acid was a little high (byproduct of killing cancer cells is uric acid), so they handed me a low purine diet (because purine+oxygen=uric acid). What was fascinating to me was a lot of healthy/super foods that are staples in my diet were on the restricted list. These included lentils, beans, broccoli and spinach.

The good new is I was able to get my uric acid number back to normal range, so I am going to ease back into a more normal for Ellen diet, though I am going to continue to minimize the consumption of seafood and meat.

Now that you’ve learned something new, it’s time to wrap this. As always, thanks for your support and let me know if you have any questions.

[wroxham-gb]

Good news Ellen. Especially the travelling less. Take care. Sue

[newyork8]

Thank you for the detailed update. Can you comment if you had any of the infusion reactions from the Obin they talk about?

[thompsonellen in reply to newyork8]

The first day I have obin was the only time I had a reaction. They give you numerous premeds, but notwithstanding them, I got very bad chills and felt nauseous. The nurse was great, and it turns out they have heated blankets for the occasion which were very soothing. I was on the verge, but never started to shiver, so I made it through without them pausing the treatment. The reaction lasted less than a half hour so it wasn't that bad and I was fine by the time I left the hospital later that day. After the first time, I've had no reactions and I think that is typical.

[newyork8 in reply to thompsonellen]

Thank you as I will be starting G.

[thompsonellen in reply to newyork8]

You'll be fine. Good luck, and keep us posted!

[UK-Sparky]

Thanks for heads up Thompsonellen, great news! Hope you continue the great recovery

Marc

[Peggy4]

All sounding good. I really want to improve my diet to include more anti inflammatory food but am so lacking in wilpower.

Peggy

[thompsonellen in reply to Peggy4]

I am otherwise disciplined, but not so much when it comes to willpower with sweets, so I can relate!

[db601]

The Light is at the end of your tunnel !!! Happy for you. I know it has not been easy but you have done a wonderful service to your community with your detailed reports. Many thanks!

Interesting uric acid info - thank you. So much to learn. Appreciate your input.

[SandiC]

Great news all in all Ellen... glad it will get easier from here on in! Rooting for you all!

[thompsonellen in reply to SandiC]

Everything well with you?

[SandiC in reply to thompsonellen]

Yes! Thanks. Just had my 6 month assessment (blood, ct, bmb and flow).. I am having a terrific response. Almost a complete response. WBC's and ALC's down to normal. All but 3 pesky nodes below 1.5 cm (internally), bm much less involved. Fingers crossed. Dr. Weistner is very, very pleased

[thompsonellen in reply to SandiC]

That's awesome! You must feel a lot better, too.

[SandiC in reply to thompsonellen]

Getting there.. Thanks Ellen

[Gweidema]

Thanx for keeping us informed. All the best from The Netherlands!

[thompsonellen in reply to Gweidema]

My son and I spent Christmas week mostly in the Netherlands a couple of years ago. Amsterdam, Utrecht and The Hague. Loved it! Can't wait to go back with an adult.

[maggiesgrandmom]

Good news Ellen and thank you for giving a complete picture plus added details. Keep us up to date on yourself and your bff/cller. Good luck with your son, I will be in the same boat soon with mine. Of course there could be a little inside thought in his head that he doesn't want to leave his mother who he knows has a cancer that is supposed to be not too bad but is still bad. (I can never tell how worried my teenager son really is or is not).

[thompsonellen in reply to maggiesgrandmom]

He's worried. He recently announced I'm going to die soon. I realize that is just his fear speaking, but it does rattle you. I told him he will have plenty of warning and until the meds stop working, he need not worry.

[maggiesgrandmom]

Oh boy that is hard. Atleast he said something and you know he is worried. This week I was told my early breast cancer had become invasive by the radiologist, had to see the surgeon again but miraculously the biopsy turned out to be benign. Lots of upsetment and asking God- like how many more things are going to crop up here? But I didn't tell my 16 year old son. But then he later heard that everything was ok because he was in the car with me when the doctor called with results. So I had to tell him what was going on. But even the good news is just more for him to have to think about. It is hard enough being a teenager.

[thompsonellen in reply to maggiesgrandmom]

What a rotten journey, but I'm glad you got your miracle. I think you did the right thing to wait to tell your 16 year old. If it weren't for the ill timed phone call, he'd be no worse for the wear. The only really, really horrible thing for me is dealing with my son's anxiety over this, but it's also my biggest motivation to do everything I can to kick this.

[maggiesgrandmom in reply to thompsonellen]

I agree with that totally! I only have to think of him when I feel sorry for myself and he keeps me going!

[Hidden]

When I started ACP-196 I was put on Allopurinol for the first month to counteract the increase in uric acid.

Are the researchers/doctors confident that you will be able to go off all medicine when the treatment is completed? What are the expectations?

[thompsonellen in reply to Hidden]

I was on allopurinol and they took me off about 3 months ago. My uric acid was .7 above normal, so not sky high, and I was able to manage it down with diet.

The original trial expectations were to get us off meds, but that isn't clear for me. As a 17p deleted CLLer, my body doesn't kill off cancer cells, so even if I'm MRD-, it doesn't mean I'm cancer free (I think they can't detect less than 1 in 10,000 which leave a lot of room for cancer cells to still be hanging around) and if there is one cancer cell, it will double and I'll be back in this position sooner rather than later. There is talk about keeping me on ibrutinib assuming of course I don't become resistant to it.

[Hidden in reply to thompsonellen]

See if you can get in an ACP-196 drug trial. The second generation BTK has fewer side effects. Worth a try... If I remember correctly, AbbVie makes both Venetoclax and Ibrutinib. Use of ACP-196 would probably not be well received.

[thompsonellen in reply to Hidden]

If this fails, that might be a plan B. At the time, this trial was viewed as the state-of-the-art option for a 17p patient and I still feel that I make the right choice for me (though others I know are doing great on ACP-196 trials). I am at OSU with Dr. Byrd and I feel like I can't be in better hands. I basically I will do whatever he tells me to. I tell my friends if he told me to walk the plank, I would.