Cabo?

APny · April 2016

sblairc said:
We're not all going to Mexico? Well CRAP.
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. . .

That really sucks about the

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

Srashedb · April 2016

foxhd said:
Well here's the thing.
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.

Nivo

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

PonyWave · April 2016

I'm new to this board and

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 · April 2016

PonyWave said:
I'm new to this board and
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

You are not going to give up,

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

Jojo61 · April 2016

sblairc said:
We're not all going to Mexico? Well CRAP.
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. . .

Cabo - Sarah

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

hardo718 · April 2016

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

I was thinking Mexico too!!

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~

Srashedb · April 2016

Jojo61 said:
Cabo - Sarah
Sarah, you made me laugh out loud at your Mexico statement. I agree!! Cabo for Foxy and then Mexico for everyone!! I am in!

Not me

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

mrou50 · April 2016

Hang in there Fox

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 · April 2016

mrou50 said:
Hang in there Fox
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

What is

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

sblairc · April 2016

Cabo St. Lucas, Mexico

Think "Spring Break" shenanigans. . .

Ree_Maryland · April 2016

Fox

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.

Jojo61 · April 2016

Srashedb said:
Not me
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

Sarah

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

I have been well - retiring in a few months!! - and husband is still not smoking 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 · April 2016

Jojo61 said:
Sarah
Sorry for mixing you up....I believe I have mixed you two up before.

I have been well - retiring in a few months!! - and husband is still not smoking 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

Not in Hawaii yet

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 · April 2016

Srashedb said:
Not in Hawaii yet
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

Sarah

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

Jan4you · April 2016

Ree_Maryland said:
Fox
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.

Aww Foxy baby, sending you

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 · April 2016

Jan4you said:
Aww Foxy baby, sending you
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

Thank you

sweetheart.

Footstomper · April 2016

Jan4you said:
Aww Foxy baby, sending you
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

Errm?

Do you two need a room?

foxhd · April 2016

Footstomper said:
Errm?
Do you two need a room?

UPDATE!!

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 · April 2016

foxhd said:
UPDATE!!
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.

Excuse my ignorance please

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 · April 2016

hardo718 said:
Excuse my ignorance please
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~

Donna

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.

Cabo?

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