THE KIDNEY IS OUT

dhs1963 said:

This is where stuff gets serious

Sarcomitoid features is more agressive.  I have a sarcomitoid.  You need to get to MD Anderson, particularly if the things in the lungs are mets.

I had Sarcomitoid with a SOLITARY met to the lung.  That was removed.  I have been lucky in that I am three years NED.  

Sarcomitoid tumors will not respond well to many first line treatments, including IL2.  It seems to respond to the new drug, Opdivo.  They also respond to traditional chemo better than normal RCC tumors.

You need to go to an oncologist that has seen this before.  Make an appointment with MDAnderson.  Today.  I am being seen at Hopkins in Baltimore, mostly because of proximity to my house (60 miles).

But, the most promissing treatment, if it is an option is to cut the tumors out.  That will depend on how widespread it is.  If they are all over the lungs, that will not be an option.

Options

Removal is not an option.  Small but widespread. Our 'team leader' is an MD Anderson guy,  so we have that. We go for a test and staples out on the 19th,  biopsy of lungs soon after,  then we wait for results to proceed. 

dhs1963 said:

This is where stuff gets serious

Sarcomitoid features is more agressive.  I have a sarcomitoid.  You need to get to MD Anderson, particularly if the things in the lungs are mets.

I had Sarcomitoid with a SOLITARY met to the lung.  That was removed.  I have been lucky in that I am three years NED.  

Sarcomitoid tumors will not respond well to many first line treatments, including IL2.  It seems to respond to the new drug, Opdivo.  They also respond to traditional chemo better than normal RCC tumors.

You need to go to an oncologist that has seen this before.  Make an appointment with MDAnderson.  Today.  I am being seen at Hopkins in Baltimore, mostly because of proximity to my house (60 miles).

But, the most promissing treatment, if it is an option is to cut the tumors out.  That will depend on how widespread it is.  If they are all over the lungs, that will not be an option.

Question:

Will the mets be sarcomatoid because the main tumor was? Nothing else around it was affected,  nodes all clean,  adrenal,  liver,  colon. 

dhs1963 said:

The mets will most probably be sarcomitoid

Did they say the percentage of sarcomitoid features?  That is important too.  I have been investigating this, I have three reasons for you to be optmistic:  1) treatments are improving, 2) Some people have survived (me, for example), and 3) pessimism sucks.  

The thing you need to remember is every day you wake up is a gift.  I know it sounds corny, but if you can embed that into your mindset, it really can help.  I like to think of me being on Bonus time.  (In addition to the sarc. RCC, I have Cornary Artery Disease; I am only 52).

Good Luck.

Words of wisdom. Thanks, DHS

That's my next question for her.  The reports, etc., all get uploaded to his patient file, so we can see them as they are entered into the system.  If I don't see them in a couple of days, I'll be texting her.  I figure no sense in wigging out at the moment because we can't do anything until next week when he goes in for the staple removal and some test. The biopsy of his lungs should be soon after; I kknow they want to get that done so they can get the results back in time to start whatever treatment at the six week surgery recovery mark.

To be honest, not much about life has changed in the last couple of months.  We still did the holidays, house maintenance, work, arguing, blah, blah.  He's up and about from the surgery and wants to go back to work next week, even just on short runs. His doctor is very pleasantly surprise at how well he's doing, off the pain pills, mobile, no gastric issues, eating well, all that stuff.  All he has is a longer scar than what he had before, and I've been busier because I've been having to do all the work, cooking, cleaning, etc.  I read every label, know way more big words than I knew three months ago, and can make perfect ghee, without burning it, every time.

He gets upset at times, focusing on a limit he feel he has on his days.  He laments not growing old, watching grandkids grow up (we have none as of now), and dying in his bed at 80 like he always thought he would. It's always short-lived, and I always just kind of blow if off, partially because I'm not the over-emotional type, it wouldn't do him any good for me to be upset, and because I really don't think he'll be dead any time soon.  I tell him we're all dying every day, that every morning we wake up is a win, even without cancer.  I drive 40-50k a year; I'm not a scary driver, frantic, freaked out, or defensive.  I don't see every short brake as "OMG I ALMOST GOT KILLED!!!!", but I literally did almost get killed by a fully-loaded dump truck about two years ago.  When you can reach out and touch 20 tons coming at you at about 45mph, yeah, you can say you almost died.  I remind him of that.  I remind him of our friend who died at 19, another who died at 18, another at 38, another at 46 just months ago by suicide.

Cancer may be what kills him, but I won't let it be what he dies from.

foxhd said:

We are not dieing from cancer

We are living with cancer.

exactly.

He's still digesting, is all.

JenRen said:

Thinking of you both

I just returned to this site after a gap of 10 months. Saw your posts. Sending you both my love and prayers, I will check back often to see updates. 

Jeni 

Thank you!

Just waiting for the lung biopsy results.  It's only been six business days, not counting the day of, but it seems like forever.  No changes, he's back to work full-time with no complaints of anything other than a twinge now and then at his back.

The Keto is really agreeing with him, other than a few things he really misses but just does without.  I have him on maintenance macros because I worry about him losing too much weight on the Sutent.  Just hedging my bets.

It's strange because life seems so normal.  It's almost scary, like the other shoe is going to drop, even though there's not much left in there at this point even if the lung spots come back as sRCC.  I guess we just move to taking Sutent and hopefully minimal side effects and scans in April.

I hope all is well with you and you and YOU!

 

Bonnie

Jojo61 said:

Well it is good that the

Well it is good that the results show RCC. Now the plan can be set in place for meds and monitoring. He seems to be doing very well through it all! Great attitude and great support and care from you!

Hugs

Jojo

I agree

If it has to be a fight, at least it's a known quantity. And rcc is certainly not the death sentence it used to be, so we're going to be okay.

Got his appointment today to start- 2/23, which was the earliest the onc could get him in. He even called and acknowledged that it's further out than we all want but there's a huge backlog, so it seems everyone is being proactive.  Since there was no change in his scans from November until the CT for the biopsy, he doesn't seem too concerned about an additional two weeks.