Abunai update

ImNotDeadYet

Very encouraging news!

Very encouraging news! Reading this was the best way to start my day today!

 

foxhd

Geeze,

sorry about the pain. I think I understand. Good luck with therapy.

Bellafelice

Thank you for sharing Todd

Thanks so very much for posting this great news about Nivo!!

Abunai

Well, I'm back

The Nivo was good while it lasted. Many fewer side effects than the Votrient which didn't help me at all. My tumors were kept in check for a while with Nivo, but just came back with a vengence.

I was taken off of my clinical trial today.

I'll be getting radiation treatment (my fourth) to my L4, L5, S1 vertebrae, starting tomorrow, to try to kill of a tumors there that are pressing on my nerves and crippling my left leg.

In a month (required wait time after Nivo) I will hopefully be accepted into a clinical trial with Keytruda (yay?) and Cabo (boo).

Not looking forward to the Cabo side effects, but it's time to move on to the next option.

I'll try to keep you all posted.

foroughsh

Very good news I'm happy for

Very good news I'm happy for your good response to Nivo. Here's to best luck with new treatment options

AnnissaP

So sorry to hear your last

So sorry to hear your last update. Hoping these news options work brilliantly for you!!! Looking forward to your next, positive post!!!!!!

stub1969

Back

I'm glad you checked in Albunai.  Also hopeful that the next treatment last longer than a few months.  Take care and keep us posted.

Stub

rhominator

I hope Keytruda works

Sorry to hear that Opdivo stopped working for you. But I'm glad there are more treatments in the pipeline.

Re: Radiation treatment. Me too. I just got some new alignment "tats" this week in preparation for radiation on L4, L5.  Interesting.

foxhd

Abunai,

 I'm so glad that you've checked in. I was preparing a search for you. My situation is similar except it is my arms and hands I'm losing use of. The cabo has not been as bad as the votrient. I don't like it but I could live like this. I'm not interested in changing drugs if progression is slow. I have an appt. with my  rad. onc. this week. We'll see.

Abunai

foxhd said:

Abunai,

 I'm so glad that you've checked in. I was preparing a search for you. My situation is similar except it is my arms and hands I'm losing use of. The cabo has not been as bad as the votrient. I don't like it but I could live like this. I'm not interested in changing drugs if progression is slow. I have an appt. with my  rad. onc. this week. We'll see.

Thanks, Fox

Yeah, I'm hoping the cabo is better than the votrient. Thanks for letting me know your experience.

Let me know how your appointment goes.

Best wishes.

Abunai

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!

Dang!

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?

Abunai

foxhd said:

Abunai,

 I'm so glad that you've checked in. I was preparing a search for you. My situation is similar except it is my arms and hands I'm losing use of. The cabo has not been as bad as the votrient. I don't like it but I could live like this. I'm not interested in changing drugs if progression is slow. I have an appt. with my  rad. onc. this week. We'll see.

Update?

How did your appointment go?

Did they find anything treatable with radiation?

Are you still on cabo for systemic?

Abunai

Back again

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

Abunai said:

Back again

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.

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.

Abunai

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

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.

 

foxhd

Abunai,

Contact the drug company. They covered my cost for over a year now. There are lots of assistance programs out there. look around. my wife is looking into grants.

I'm a month out from my back/ribs radiation. It has been pretty tough. I've had tumor flare in all my bones and need to sleep 14ish hours a day. Not as easy as the old days when I'd ride 80 mile round trip for 2 weeks of radiation. My next scans will be pretty stable because it is as if all my previous treatments come back to life after radiation. I just get so weak . I don't bounce back so easily anymore.

Abunai

Back again...

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.

rhominator

Hi Abunai

Thanks for another update.

The pseudo-progression determination stage is tough. That's pretty hard mental battle to fight for the next nine weeks.

I'm sure glad the co-pay came down from $$$$ to $10. Whew!

I'm praying for you and your wife.

Retcenturion

Good luck

Hope you get good news on your treatments. Financial worries during treatment can't help either glad you got good news there. Positive thoughts to you and your wife.

Wehavenotimeatall

Praying for you

You must be in a spin

good news on the bone so pray the rest follows 

 

Annie