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Abunai update

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

I should have thought of having just one thread for myself to keep updated as my journey progressed, but I must have had other things on my mind when I first joined this forum.

After being dxed in Sept. of 2016, I had a radical nephrectomy to remove an 11.5 cm tumor on my left kidney. Several other mets were missed and/or not scanned for at that point, and I ended up the ER a week later with no lower extremety function due to a large met on my T6/T7 spine that had compressed my spinal cord. After emergency surgery from a cocky, strange, initially off-putting, but brilliant neurosurgeon, I was eventually able to walk again (with a cane, for moderate distances). I also had all of my remaining mets located and baselined.

The remainder of the T6/T7 tumor was radiated away, then I was initially placed on Votrient as my first course of medicinal oncology treatment.

Despite the nasty, demoralizing side effects, the Votrient didn't work for me.

In March, I was accepted to a clinical trial that paired up Nivolumab (Opdivo) with CB-839.

I found out last week, in the midst of recovering from cancer related hip surgery which I wrote about elsewhere on this board, that the Nivolumab is working for me!

Only one of my tumors, which was not considered a "target" tumor as part of the study, showed any growth. All of my other mets were contained and there was no progression.

I get to stay on the Nivolumab for now.

I'll post any further updates of my personal progress on this thread.

Thanks for listening, and thanks for your support, everyone.

BoondockSaint's picture
BoondockSaint
Posts: 242
Joined: Mar 2017

Excellent news!!

glad you are getting some results.

stub1969's picture
stub1969
Posts: 868
Joined: Jul 2016

This is good to hear.  I'm hopeful for more positive results.

Stub!

lobbyist0724's picture
lobbyist0724
Posts: 428
Joined: Sep 2016

Congratulations, have been following you since last year and understand that you have been through alot. Please keep us posted with all the future good news. Best wishes!

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Encouraging news for those of us on Opdivio. I'm very happy the treatment is working for you! Smile

 

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Hey there, Abunai, thanks for taking the time to update us! Remember WE are on YOUR journey if you want us to be LOL.

WE care about YOU! WE want to support you in any way you may need.

But a big WHEW.. glad your treatment is working!

Gentle, healing hugs,

Jan

sandy23
Posts: 143
Joined: Jan 2017

That's great news, Abunai.  How are you feeling?

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Mentally, I 'm feeling pretty up-beat, knowing that the Nivolumab appears to be working for me.

Physically, I'm feeling beat-up from the hip surgery still.

Up-beat, beat-up...wow. sorry for that play on words.

Max57's picture
Max57
Posts: 168
Joined: Mar 2015

Spread the good news ! Thanks for the update 

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

Good news!  Glad that you've shared it.  I'm happy for you.  Keep it going!

Dutch

APny's picture
APny
Posts: 1988
Joined: Mar 2014

That's very good news! So happy for you!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Many people are going to live longer and better due to nivo. I'm happy you got to respond to it. Share your secret with BDS. If you have any areas that can get radiated, go for the abscopal effect. Your timing might be right.

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

I had to look up "abscopal effect".

Hadn't heard of it, but love that it exists. My immune system is in high gear right now.

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I hope it keeps working for you for a long time!

I'm not sure why they don't investiage us more often when they find a kidney tumor? I think it's because those initial docs are urologists and they are just focused on doing their kidney surgeries? I'm not sure. I had a lung xray, but no chest MRI until after my nephrectomy. I also didn't have any tests on a suspicious spot on my right hip (no nuclear bone scan) until after the nephrectomy and no brain MRI until after the surgery either (done by my oncologist as a baseline).

Glad they are figuring things out and you're making progress now.

Best wishes,

Todd

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

Thanks for all of the kind thoughts!

LMD828
Posts: 26
Joined: Dec 2016

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!

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

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?

Nekocat's picture
Nekocat
Posts: 11
Joined: Apr 2017

Thank you truly for sharing what has been going on with you it truly makes me feel not alone.

I hope that your success and progress keeps moving forward and thank you again.

 

Deanie0916
Posts: 332
Joined: Nov 2016

I hope this works well for you. Prayers and hugs to you.

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

My second set of progress scans while on the Nivo/CB-839 study shows no new mets and no progression in the existing mets!

My left foot and lower leg are jacked up and still in intense neuropathic pain two months following my hip surgery. They must have tweaked my sciatic nerve pretty good. I'll keep working the PT on that leg and hope that the pain eventually subsides.

I'll bask, for now, in the good scan news. :)

Forger's picture
Forger
Posts: 20
Joined: May 2017

   ...From someone further down the Opdivo Road that I am, and that you're seeing progress.  I just had my first infusion Monday after being on Votrient for 6 months.  I look forward to your updates.

sandy23
Posts: 143
Joined: Jan 2017

I have been wondering how you were.  I can feel your sciatic pain.  One thing that helps me is to stand on a wooden box (or big book) with your "good" leg and let the "bad" one softly swing back and forth.  Don't force it, just get it started and sort of let it pendulum at your hip.  You can feel it release.  It works well for me so I wanted to share in case it might help ease your pain a it as well.

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

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

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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

Bellafelice
Posts: 57
Joined: Sep 2008

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

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

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's picture
foroughsh
Posts: 779
Joined: Oct 2014

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

AnnissaP's picture
AnnissaP
Posts: 632
Joined: Sep 2017

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

stub1969's picture
stub1969
Posts: 868
Joined: Jul 2016

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's picture
rhominator
Posts: 233
Joined: Nov 2015

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

 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's picture
Abunai
Posts: 173
Joined: Oct 2016

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's picture
Abunai
Posts: 173
Joined: Oct 2016

How did your appointment go?

Did they find anything treatable with radiation?

Are you still on cabo for systemic?

Abunai's picture
Abunai
Posts: 173
Joined: Oct 2016

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's picture
rhominator
Posts: 233
Joined: Nov 2015

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's picture
Abunai
Posts: 173
Joined: Oct 2016

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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's picture
Abunai
Posts: 173
Joined: Oct 2016

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's picture
rhominator
Posts: 233
Joined: Nov 2015

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's picture
Retcenturion
Posts: 240
Joined: Mar 2017

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
Posts: 489
Joined: Aug 2017

You must be in a spin

good news on the bone so pray the rest follows 

 

Annie

Angiebby75's picture
Angiebby75
Posts: 208
Joined: Aug 2017

Prayers for good progress on treatments.

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