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Cabo?

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

No one talks about cabo or cometriq. Not recently anyway. It is promising when many other kidney cancer drugs have failed. With it comes the SE's of diarrhea, etc. The bigger question is why would I be asking?

Srashedb
Posts: 482
Joined: Dec 2013

Did you have scans this week and have you been put on Cabo? Have been checking to see if you posted. 

Sarah

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Fox

I don't know about carbo, but how are you? Does the new drug work for you? Are you happy with the result?

Thinking of you

Forough

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Or, did you get sick of the pain?

APny's picture
APny
Posts: 1933
Joined: Mar 2014

Yes, Fox. Please let us know how you are doing.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I was at a kidney cancer support group at Cedars Sinai on Monday. A representative from the pharma company that makes cabo was there visiting us. Cabo and Opdivo were both mentioned. It was a talk on new drugs available. One of the guys there had tried it before. I think he's on Nivo now.

I remember you were on the trial and they took you off for some reason. It had been working well for you. Are you going to try it again? I don't think it's quite approved yet, but it's supposed to be soon? It's approved for some other cancers, though, so I'm sure it can be used off label.

Please let us know. We're on pins and needles!

Todd

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

I'll see my onc tomorrow to discuss our new plan of care. Soft tissue mets remain stable. Bone mets are not. Spinal mets are affecting senasation and strength in my left arm. I'll also have SBRT scheduled next week. I'll have to look at my scans tomorrow but evidently the nivo did not work as anticipated. Cabozantinib is another TKI plus a couple of other benefits including being effective against bone mets. I'll have to find a patient assistance program as I think this stuff is outside my budget.....and the beat goes on....and the beat goes on....

Srashedb
Posts: 482
Joined: Dec 2013

We were told that there was no effective treatment for bone mets and that radiation (the high beam kind) was he best treatment other than surgery so it is good to know that Cabo is good on bone mets.

Fox, am I missing something here? The soft tissue mets are stable (Nivo worked) buy the bone mets progressed. Stability is good so why are they switching to another drug? 

Sarah

rja3d's picture
rja3d
Posts: 35
Joined: Mar 2016

Not much i can offer being a rookie, but I'll be praying!

 

Jay 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Let us know how your meeting goes. I admit I'm terrified about getting optimistic about Nivo. So far I've managed to avoid hope with the other treatments.

Hesiod had it right in the 7th century BCE: When all the other evils had escaped from Pandora's jar the only one left was optimism. 

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Hang in there. Please update us when you can. 

And thru it all you still manage to keep your sense of humor. You're a great example. I love ya man!!

Donna~

APny's picture
APny
Posts: 1933
Joined: Mar 2014

Thinking of you today. Hope you get some promising answers from the onc regarding cabo.

donna_lee's picture
donna_lee
Posts: 892
Joined: Feb 2009

You're supposed to last forever.  What can I say, other than CRUD!!  Hang in there and if anyone can find something that works, you will.

Luv ya,

donna_lee

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Fox,

There are some studies combining Nivo with a TKI. Are there? I've heard at a few meetings recently that while you can't combine TKI's because the side effects are additive, that the side effect profile of Nivo is different enough that it could be combined. I also heard they were doing some studies like this.

Since Nivo is working on your soft tissue mets, just wondering if you might be able to add the TKI like Cabo?

Sending you good thoughts.

Best wishes,

Todd

APny's picture
APny
Posts: 1933
Joined: Mar 2014

While the article doesn’t address RCC specifically, cabo’s effect on bone mets sounds very promising.

“Researchers also found that bone metastases either partially or completely disappeared after treatment for 59 out of the 68 patients with bone metastases. Treatment with cabozantinib also greatly reduced bone pain for these patients.”

http://www.cancer.net/cabozantinib-helps-manage-several-advanced-cancers-and-shrink-bone-metastases

It would be great if you could have a combination of Nivo (works on soft tissue mets) and cabo for the bone mets. Working for 59 out 68 people is an amazing result. I would imagine it would also work for RCC mets to the bone.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hoping for the best for you, Foxy!! I wish I could offer you more experience and knowledge. But I can send my good thoughts, vibes and karma your way. Please let us know how it went.

Big hugs

Jojo

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

After my 3 months on nivo I've had nothing but new growth in my lungs and my spine. Only a couple belly nodes remained the same. Absolutely stunned. I completely expected excellent results from the nivo. Instead it worked like starter fertilizer. My upper extremity strength and sensation is diminishing again. We discussed multiple options available. And it was up to me as to the next step. So I'll get more radiation and begin cabozantinib. My tumors just aren't growing in places that we can do much about. Surgery is out of the question. So despite a reputation for severe SE's, cabo is my choice. Maybe this time I'll get lucky again.

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Thinking of you and sending you my best wishes. You've done a miracle before and it's not odd to expect it again

Keep in touch

Forough

Srashedb
Posts: 482
Joined: Dec 2013

Is there any chance that the growths are pseudo progression? From the folks on Smart Patients, I have read that Nivo can do this sometiimes.

Sarah

BellaBinksMom's picture
BellaBinksMom
Posts: 78
Joined: Sep 2014

Fox - I had similar results with Opdivo - not quite the miracle my oncologist thought it was going to be.  It resolved some soft tissue tumors I had, however, everything else has progressed, including new mets to my hip bone and, of all things, a new met on my gluteus maximus (just proving this crap is a pain in the ***!), and a "watch and see" issue in my splenic vein.  IMO, it allowed things to spread like wildfire.  I have been discussing Cabo with my oncologist and, in the meantime, am back on Votrient which at least was helping me stay stable.  

Sending you lots of good wishes and prayers. 

njkate07's picture
njkate07
Posts: 19
Joined: Aug 2016

Same for my hubbie!! PET after 5 treatments of Opdivo, the mets in his lungs progressed.They are now in the pleural cavity cauding it to fill with bloody fluid that needs draining every other week. Votrirnt made him way to ill, next up in 2 weeks is Cabo.Keeping my fingers crossed.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Kidney cancer is such a complex and multi-faceted disease. Why does one medication work for some, but not for others? It is a frustrating puzzle. Praying that your latest choice is the answer you have been searching for, Foxy. Loving your incredible attitude.

Big hugs

Jojo 

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

So sorry for you, hope Cabo will be the right one and you can manage sides effects. 

... ... 

Take care

Dave

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Was hoping when I saw this subject you were going to suggest we all say "F THIS" stupid disease and head to Mexico. 
Cabozaninitunb is sounding promising. Then maybe some fun in the sun. . . 

APny's picture
APny
Posts: 1933
Joined: Mar 2014

That really sucks about the Nivo but hopefully the Cabo will do it. And perhaps for you the side effects won't be bad for you. That also varies so much between people. I can imagine how disappointing the news were but I guess Nivo wasn't the right drug for you. Hugs xo 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Sarah, you made me laugh out loud at your Mexico statement. I agree!! Cabo for Foxy and then Mexico for everyone!! I am in!

Srashedb
Posts: 482
Joined: Dec 2013

Jojo: it wasn't me who connected Cabo to Mexico; that would be sblairc who made the comment. I agree with you about this disease and the many paths the cancer follows, all seemingly different for every patient.

i think the promise lies with immunotherapy and although Nivo is an immune drug, there are others just around the corner if only patients can hang in lo enough.

my husband is currently playing wacka-mo with sporadic mets; had a small one on the spine which got zapped and a tiny one on the opposite adrenal gland which will also get zapped. After a CT scan and MRI, they cannot make an absolute finding that it is even cancer.

our strategy is to avoid drugs as long as possible with the hope that a good one will come up; uscf has an immunotherapy center which is showing promise in early testing.

hope you are well, JoJo

Sarah

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Sorry for mixing you up....I believe I have mixed you two up before. Foot in Mouth

I have been well - retiring in a few months!! - and husband is still not smoking Laughing and my health has been as good as can be expected. I noticed that you are not posting as much, and hope that it is because you are enjoying Hawaii (or any other lovely place) as much as possible. Missing your posts, though!

Hugs

Jojo

Srashedb
Posts: 482
Joined: Dec 2013

I have been reading posts but working a lot; I haven't posted much. We are planning a trip in July to Hawaii. Last time, our youngest son and fam joined us for 3 days and it was wonderful to have our granddaughters (3 and 2) enjoy the places their dad had once enjoyed.

my husband had 5 radiaton treatments to a spot on the spine in March and is scheduled to see a radiation oncologist for a 1.3 cm spot on the Left adrenal gland. A CT and an MRI could not definitely say it is a met but it doesn't look benign and apparently it is not uncommon sinxe  adrenal is highly vascular.

wgen do you 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Well it is very good to hear that you have been to Hawaii with your family and plan to go again in July. Sounds absolutely perfect!

Sorry to hear that some mets have popped up for your husband. It does sound manageable at the moment, though - and no medications so far...impressive. But I know it can't be easy for this to keep showing up. I have recently had 2 little scares and biopsies and they were fine....and I know what I went through emotionally for those....so I can imagine what a scare these things are when they show up positive. But I know your husband is in good hands - yours!

Don't work too hard!!

Hugs

Jojo

 

PonyWave's picture
PonyWave
Posts: 33
Joined: Apr 2016

I'm new to this board and can't add much except for my best and most sincere wishes to you. It sounds like you're proactive and well informed. All the best!

pony 

Allochka's picture
Allochka
Posts: 861
Joined: Nov 2014

You are not going to give up, we know it! Cabo will work for you!

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Maybe a combination of Cabo & Cabo will do the trick? If that's an option...lets go!!

Whatever it takes to restore Fox's health. In the meantime, sending good thoughts & wishes & of course, prayers.

Donna~

mrou50
Posts: 389
Joined: Mar 2013

Sorry you did not get the news you were hoping for.  So far I have been disappointed with NIVO but I have another scan in three weeks and the ONC and phase IV study nurse said sometimes you have to cycle through a couple of times (each cycle being 8 weeks worth) befor it catches, hang in there sir.

 

Mark

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

cabo and mexico? I'm no world traveler. Or is it some kind of female drink?

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Think "Spring Break" shenanigans. . . 

Ree_Maryland's picture
Ree_Maryland
Posts: 157
Joined: May 2014

I am deeply sorry for your troubles. I do not write much on here, because I never know what to say, except hope all goes well and i am thinking of you.

Jan4you's picture
Jan4you
Posts: 1317
Joined: Oct 2013

Aww Foxy baby, sending you healing thoughts, KINDNESS and HOPE

for whatever is best for YOU!

I just love you more... and more...and more... and more... and more...

Jan

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

sweetheart.

angec's picture
angec
Posts: 923
Joined: Mar 2012

So sorry to hear this foxy! How about the link I sent you? I really think you should look into it. I have bought some for  mysefl and for my son with ASD. He has shown some great results.  There are all kinds. One you can inhale in a nebulizer for the lungs mets.  Drops you can take orally, creams you can rub on and even injections. I cannot name the product here or i will be banned.  You know what i  am talking about.  Please, give it some thought, others have great results with it.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Do you two need a room?

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

Doc called this afternoon. Tumor board discussed my case again. Bottom line is that any and all options are available and up to me. I am arranging radiation at 8 am. Then I am going to stay on nivo for 6 weeks more. Then scan. I have support that the tumor flare is inflammatory and not growth. So,I may still be ok. If no improvement then I'll change course. The bottom line is that I am reaching maturity for a stage 4 kidney cancer patient who stabilizes for a while but then has progression. I have managed to get to 5 years and another 5 just is not likely. So I gamble a little differently now. My chips are on the table.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

But would anti-inflammatories be of any help?  Not necessarily a medication, but diet?  Again, I apologize for my ignorance on this topic, just a thought.

Hugs, thoughts and prayers,

Donna~

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

I am currently on steroids for inflammation and it has relieved all pain. As to adding a diet componet of anti inflams, it would be a drop in the bucket. Besides it is far to late to use supplements to affect my prognosis. Living pure from day one is too difficult because of the chemicals we have absorbed in our life time. Our body is an enviornmental filter damaging our dna and random cell mutation happens. I exist at the stage of managing symptoms for as long as I can. And hopefully with as few side effects as possible. 3-4 years ago I said,"Bring it on!" Now I say, "Lets hang on as comfortably as I can."

But NEVER count me out. I have remarkable healing powers. There is a loss from the battles but I tolerate a lot.

Airie
Posts: 45
Joined: Mar 2016

Fox

During the last few days I was in the hospital in Feb after my nephrectomy I read ALL the posts on this entire site. You have been through hell and back my friend. But you always come back. You are a inspiration to me to keep dredging through the mouth sores diarrhea insomnia nausea etc. I have no great words of wisdom for you. Just continue posting with your updates. You're important to more of us than you may realize. 

Eliezer2
Posts: 85
Joined: Aug 2012

they gave me diabetes and caused shoulder pains

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Well said!! Foxy is more important to all of us than he could possibly realize!

Airie....wishing you a smooth and seamless recovery!

Hugs

Jojo

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Fox....you're a keeper!

Kiss Donna~

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

You guys too. Donna keep the faith. Jojo, You know where my head is at. Keep defying the odds. Airie, that's a lot of reading. Even if you just read mine. You must know stuff I've forgotten. I have an ability to let things go so that I don't dwell on them. So I forget things like esophogeal sores, skin peeling and sensitive hands and feet, etc. I couldn't imagine how many tumors I've had. Or the amount of radiation. And here I am. Out in the garage working on an old motorcycle. This ones for you Ron. I'm cleaning, painting, and rebuilding a vintage Honda. Doing it the way a kid builds a model car. Nothing fancy. Just bigger pieces. I'm having a ball.

angec's picture
angec
Posts: 923
Joined: Mar 2012

Fox... that is great that the growth is inflammation. That just might be the case.  So, was there also new growth or they think those nodes are just reactory? I am not going to count you out by any means. There are still too many other things to do.  

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

my scans lit up everywhere. Everywhere. Bones, lung, nodes. Like a field of dandelions.

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