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g2zib
Posts: 3
Joined: Jun 2018

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stub1969's picture
stub1969
Posts: 793
Joined: Jul 2016

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

g2zib
Posts: 3
Joined: Jun 2018

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Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Hi g2, sorry you have to be here, but welcome.  Everything stub said above makes sense.  Read, but verify and definitely do the same with what your doctors tell you.  If possible, get a second opinion. Here and at smartpatients you will get a lot of good advice and shared situations.

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

I am very sorry about your situation. I am sure you are trying to process the news. On June 5th I met with my oncologist who told me I had an extremely aggressive grade of cancer - not Chromophobe - but unclassified with sarcomatoid features and I had maybe a year to live. He explained that this cancer would not respond to traditional therapies, however, the newly approved first line treatment of Opdivo and Yervoy (immunotherapy) have shown positive results in patients with poor risk adv RCC to slow and potentially shrink mets. Did your doctor discuss this as an option?

APny's picture
APny
Posts: 1939
Joined: Mar 2014

I am so sorry you have to be here. It must have been devastating to be told you 12 months. While I'm not a physician, I don't think anyone, not even an oncologist can predict how long anyone has. Medicine and approaches change rapidly and what seems impossible today may very well be a solution next month. There are people on this forum who were told 10 years ago that they didn't have long, yet here they are. I also agree that you should sign up with Smartpatients. My thoughts are with you!

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Hi APny.  Hope you are well.  Are you in Florida? I have my 4 year follow up, not with the rock star, but with a nurse practitioner on August 1.  I always look forward to my visit to MSKCC.  A fun and scenic ferry ride to the city, and nice lunch and hopefully good news.

APny's picture
APny
Posts: 1939
Joined: Mar 2014

Hi positive! Hoping for best news for you. I haven't seen the rockstar since surgery and hope never to again :)

lobbyist0724's picture
lobbyist0724
Posts: 383
Joined: Sep 2016

Welcome here but I am sorry to hear your news. Have your doctor suggested a potential clinical trial. Below is a study targeting Non-Clear Cell RCC and I am sure there are other ones as well. Please check with your doctor. All the best.

Study of Atezolizumab + Bevacizumab in Patients With Advanced Non-Clear Cell Renal Cell Carcinoma

https://clinicaltrials.gov/ct2/show/NCT02724878

 

Allochka's picture
Allochka
Posts: 866
Joined: Nov 2014

Hello,

please don't give up and get more opinions from oncologists that specialize on RCC. Our Donna here was told about 10 years ago that she has 6 montsh to live. She even has no evidence of disease  (NED) now!

 

Alla

paintergrl's picture
paintergrl
Posts: 47
Joined: May 2018

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! 

g2zib
Posts: 3
Joined: Jun 2018

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donna_lee's picture
donna_lee
Posts: 894
Joined: Feb 2009

Ask more questions, get a referal, and ask some more questions.  Twelve years ago, I received a 5-7 month sentence...and here I am today.  I've had several surgeries. no drugs or radiation; but that was before so many new threapies have been developed.  There are so many options out there that you really do need a specialist who has treated Renal Oncology patients.

What have you got to lose?  Well, you know!

Hugs in your journey,

donna_lee

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 204
Joined: Oct 2017

About your recent diagnosis.  Medicine is changing everyday new research and drugs to help fight RCC.  I hope one finds its way to you-Best of luck-June

Justinb40y
Posts: 21
Joined: Jan 2018

Many chromo are stable with this combination.please check on SP

CRashster's picture
CRashster
Posts: 230
Joined: Mar 2017

Don't let them.

Anjas
Posts: 7
Joined: Apr 2018

true

 

cheatinlil's picture
cheatinlil
Posts: 191
Joined: Jun 2014

g2zib,

I'm sorry they told you that.  I would get a second opinion at a facility far far away from that one.  I don't have the answers but I know we have to advocate for ourselves.  Welcome here and keep posting!  Live every day like it is your last.  That is how we should live anyway!  If you live another 30 years but live every day like it is your last what a great life you will have!!

Patty R's picture
Patty R
Posts: 7
Joined: May 2017

Hi g2zib. -- Did you get a second opinion from MD Anderson yet?  Don't accept the death sentence. Chromophobe is so understudied, there would be no way of knowing, especially with the new options occurring everyday.  I would also go online and look for medical trials for Chromophobe.  

jas75
Posts: 11
Joined: May 2017

There is a closed Facebook group, "Chromophobe Kidney Cancer Support Group" where members have been exchanging information on some of the latest developments with this RCC type, including when it has metastasized. Research on treatment options is moving forward all the time and there are members here on CSN who are still with us, long after their physician had initially predicted they had left to live. Please let us know how you are doing.

Anjas
Posts: 7
Joined: Apr 2018

mu husband has an operation and lose his kidney with chromophobe in june 2016. He has metastases in his lymphnodes and liver. BUT he is still alive. He had several medicins since then and the true is nothing really helps but so far . when this immunotherapy nivolumab does not work also he gets Cabozantinib. Any one experience with this medicine?

good luck for all of you

ps we live in Amsterdam

paintergrl's picture
paintergrl
Posts: 47
Joined: May 2018

I'm chromophobe with sarcomatoid features. I'm taking Cabo (plus keytruda) and had some very good results recently. 37% tumor shrinkage. Lots of people taking Cabo on smart patients. Lots of info there.

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

Wow... That's a lot to take in. I am sorry they told you this news. I would definitely get a second opinion. Not every doctor, surgeon or specialist is the same. I really hope you find the best option for you and your health xo.

MizzouFan
Posts: 10
Joined: Nov 2015

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
Posts: 79
Joined: Jun 2016

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's picture
Manufred
Posts: 239
Joined: May 2017

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's picture
JoeyZ
Posts: 205
Joined: Mar 2018

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.

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