Abunai update

LMD828 said:

Thanks for your updates - I

Thanks for your updates - I've been following your progress recently.  My husband was DX in December, 2016.   He had a radical neph. and has lung and bone mets. Been on Votrient since Feb with some success but tumors on spine and hip cause so much pain.  Both have been radiated, but not feeling much relief yet.  I will keep looking into "next steps" if / when Votrient ceases to be effective.  Again, thanks for the hope!

I am extremely sorry that I didn't see your post back when you first posted it. This is a very difficult (for me) discussion interface to stay up to date with.

I feel rude for not having responded.

Your husband's case does sound very similar to mine. I hope that he is doing as well as possible and that the doctors are doing everything they can to minimize his hip, leg, and other pain.

Is he still on the Votrient or did they notice progression and move him on to something else?

So, I was off systemic treatment for a month, after the docs noticed progression in my hips, and legs and took me off of the Nivo study.

They took new baseline imaging; chest, abdomen, pelvic, and femur CT scans and full body bone scans.

The new scans show my bone mets have continued to grow in size, and I have numerous new but very small mets, now, in both lungs. There are two mets of note, one in each lung, each measuring a couple of centimeters in each direction.

It was fairly shocking news, but I knew I was moving on to another course of treatment regardless. The docs say that the silver lining is that lung mets can more easily be measured to determine if the treatment is working or not. (Not much of a silver lining, but I'll take it).

So, I had my first infusion of Keytruda on Monday, and my first dose (tablet) of Cabometyx today. The docs managed to get me a free, 15 day, trial of the cabo so that I can get started as soon as possible and they are working on helping me get co-pay assistance for the $2,745.00 co-pay. Yep. Per month. That's dollars, not Pesos.

Anyway, no verified side effects yet from the cabo. I'll keep you all updated.

Although it is a far, far second place to my wife, who has stuck with me through every second of this, this discussion board is a great resource.

Thank you all for being here when I need to vent. I'm not a talker, but getting it all out here helps.

rhominator said:

Thanks for the update

Sorry to hear of the progression, but happy to learn of your Keytrudu and Cabo treatments.  I sincerely hope it works for you. I suspect that those might be an option for me in the future.

I just finished radiation of the L5 vertebrae this week. Still on Opdivo.

I hope the radiation had/has the desired effect.

Opdivo is working for a lot of people. Here's hoping it keeps doing it's job for you for a long time.

I had my first set of progress scans, for the new Cabozantinib/Keytruda clinical trial, on Friday, Feb. 2nd, and received the results on Monday, Feb. 5th.

No progression in the bone METs. However, there appears to be progression in both the size and number of METs in my lungs.

My Onc. wants to keep me on my current course of treatment for another nine weeks to verify whether or not it is pseudo-progression from the new treatment. I had to sign another liability waiver to continue treatment even with apparent progression.

The Cabo side effects are not quite as bad as the Votrient effects were, but still not fun. And the Keytruda side effects aren't bad, other than the fatigue.

Who am I kidding? I've been fatigued pretty much since I started on medicinal treatment for this cancer.

I also qualified for the payment assistance on the Cabo, which brought my copay down to $10. So, I hope the progression is only "flaring" and the Cabo ends up showing some positive effect.