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MizzouFan

g2zib

g2zib, I hope I’m not to late. These are my opinions based on my many hours of research. I was given two years, I too had aggressive Chromophobe with lymph node involvement. Aggressive or high grade 4 Chromophobe is either presarcomoid cancer , or Chromophobe that has transformed to a cancer that many believe to no longer be Chromophobe. Low grade Chromophobe does not go metastatic. High grade chromophobe does go metastatic. Chromophobe is not clear cell, And should not be treated as if it is. Important factors to be considered are the size of your original tumor, and the percentage of tumor that was high grade Chromophobe. I had a 16 cm tumor with a very low percentage of high grade chromphobe, so my prognosis was very good. In reverse if I would had a small original tumor with a high percentage of high grade Chromophobe, my prognosis would have been less positive. I was told to take dug therapy to extend my life, I was told that I was not a candidate for surgery. I refused drug therapy, I got my RPLND surgery, based on the above mentioned reasons, I highly recommend that you reach out to either or and Dr. Richard S. Foster Indiana University or Dr. Joel Sheinfeld Sloan-Kettering NY NY. Dr. Richard S. Foster did my surgery two and a half years ago. I have been NED since then. I hope this helps. 

penitent

Don't watch the calendar

My son-in-law was diagnosed with stage 4 grade 4 rcc with 60% sarcomatoid features.  The text books said 12-18 months longevity because of the aggressive nature of sarcomatoids.  Well, it has been over two years now and the last three scans are totally NED.  He is not on any meds right now except for dealing with some jaundice which is a different issue.  He started out on Votrient and then moved to Opdivo.  Now nothing.

So...bottom line is...just do what you have to do and never count yourself out.

Manufred

penitent said:

Don't watch the calendar

My son-in-law was diagnosed with stage 4 grade 4 rcc with 60% sarcomatoid features.  The text books said 12-18 months longevity because of the aggressive nature of sarcomatoids.  Well, it has been over two years now and the last three scans are totally NED.  He is not on any meds right now except for dealing with some jaundice which is a different issue.  He started out on Votrient and then moved to Opdivo.  Now nothing.

So...bottom line is...just do what you have to do and never count yourself out.

Wonderful outcome

Penitent,

So happy to read your posting. 

In my clinical trial (Checkmate 214), those people who first received angiosupression drugs (sunitinib, a bit like Votrient) and who did not show any improvement were moved onto Nivo (Opdivo) on compassionate grounds, and many showed significant benefits. 

 

JoeyZ

Don't let them give you an

Don't let them give you an expiration date! EVER!!!! If you read my profile, I probably shouldn't even be alive now. But I'm 6 months post-surgery and 6 months on Cabozantinib. It can do a lot more than "add a couple of months." I hate that anyone ever told you that. I have stage 4, and while it is not curable, I have a shot at a longer life. If Cabo stops working, there are many other combinations and things to do. Don't let them just give you grim death stats. That's BS!!! You fight and fight hard. Get 2nd, 3rd or even 4th opinions. You don't have to lay down and die because some egomaniac says so!! 

Sorry. I get carried away whenever I hear that and it just makes me crazy. We're all here for you, and so are a wonderful group of folks at smartpatients.com. They will totally steer you in the right direction and even help with who is the best in your area to see.

Sure do wish you all the best and hang tough.

g2zib

stub1969 said:

Welcome, g2zib

Hi, g2.  I'm a fellow chromie, but I didn't travel the same path on the cancer journey as you.  I'll admit, I don't understand the "high grade chromophobe" that you mention.  Can you let us know where you're being treated?  If you haven't done so already, I'd like to direct you to smartpatients.com.  There are a few stage 4 chromophobe RCC fighters there.  You can search the topic or you can join in the conversation.  They will be able to tell you about their treatments and give you some advice about where to go from here.  

I'd also like you to know that you are your best advocate.  You'll be on a sharp learning curve the first few weeks/months.  Ask and learn so you can make decisions about your care.

Blessings,

Stub

Thank you, I am in Seattle,

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g2zib

paintergrl said:

possible options

Where do you live and do you have a RCC specialist to work with? I am also chromophobe, sarcomatoid and recently diagnosed. I do not have as much spread as you as of now, so we aren't in the same situation. Smart Patients is a great place for info, which I know other people have suggested. You should look into the treatment that Mark suggested Opdivo/Yervoy and also clinical trials. I am start a trial on Thursday that is Cabo + Keytruda but it is only in Denver, CO. Sometimes people will travel for drug trials. There was another trial someone suggested. Keep looking for treatment! Thinking of you! 

I am live in Seattle, and

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