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Now Stage 4:(

Posts: 31
Joined: Mar 2013

My husband's scans are now showing three small  mets to lungs.  He will start Sutent as soon as it arrives.  I am very concerned that with the 30% sarcomatoid that it will not be effective.  He is not eligible for any clinical trials that his doctor feels would be beneficial due to a pulmonary embolism released by the primary tumor before being removed.  He may be eligible in a few months because it has to be six months from a pulmonary embolism.   Praying the Sutent is effective!

AprilandChuck's picture
Posts: 110
Joined: Feb 2013

So sorry hun...definitely not a club we want others to join...it sounds like you all are up on it..remember...hope and faith are important..sending lots of hugs, prayers and well wishes your way

Texas_wedge's picture
Posts: 2799
Joined: Nov 2011

Please appreciate that this is just a layman's impression, not a qualified medical opinion, BUT:

It seems to me that there is some reason to be more optimistic about the prognosis for sarcomatoid cases than used to be justified.  The outlook was, and is, regarded as far worse than for non-sarcomatoid histologies.  However, that's on the basis of old data.  It has long been considered that there is no treatment for sRCC, except possibly with the older, nastily toxic, chemo treatments.  However, as long as a decade ago, that great authority Steve Dunn observed that it responds well to IL2 and many new drugs have also become available recently.

sRCC is much more aggressive than other forms but along with that seems to come greater vulnerability to intervention with drugs that appear to do well in combating a condition of rapid mitosis (cell multiplication).  Now (admittedly in part because of having little to lose) sRCC is being treated with a variety of the new targeted therapies and showing some good results.  I have sarcomatoid chromophobe which is still regarded as the worst of all RCC conditions, with a median survival of less than a year from diagnosis.  From my nephrectomy onwards, my pathology has been more than 50% sarcomatoid (and probably much closer to 100% but we regard that estimate as pretty pointless).  I've had two ops and recurrences in four different spots within 6 months of my nephrectomy.  I'm currently on Votrient  (5+ months) and 18 months from diagnosis, aged 70, and seem to be doing well (next scan in two weeks time will confirm this, we hope).

 I chose Votrient over Sutent but they are similarly effective and I guess your Husband's docs had a good reason for going for Sutent. So, all in all, I don't think you should be too despondent.


Limelife50's picture
Posts: 476
Joined: Nov 2011

I see you mentiomed cRCC as being the more aggressive form of renal call which in a way none of this really matters but through my own personal research i have found that Collecting Duct RCC to be in my own opinion to be the most aggressive,but i guess just like****** we all also have our owm opinions.

Texas_wedge's picture
Posts: 2799
Joined: Nov 2011

Hi for high intensity?!   By the way, I like your new pic but I hope you've kept the family group pic handy as well.

Mike, I hope it won't sound as if I'm lecturing you but perhaps you'll let me bring you up to speed on this.

I didn't refer anywhere to cRCC and I don't know what that would designate. The more common types of RCC are ccRCC (clear cell), pRCC (for papillary types I and II)  chRCC (chromophobe) and sRCC (sarcomatoid).  There are quite a few other, even rarer, kidney cancers and it now seems as if they are not really sub-types but distinct diseases. 

You're correct in saying that collecting duct carcinoma is aggressive, compared with clear cell and even more so compared with chromophobe (the most indolent - slow-growing). 

However, you'll see that I was referring to sRCC which is more aggressive by orders of magnitude!  It's now appreciated that sRCC is not a discrete type but is a highly aggressive form that any of the RCC types can turn into, if their cells de-differentiate back to a more primitive form.  At that point, even chRCC becomes extremely aggressive.  For some as yet unknown reason, chRCC is rather more likely than other types to undergo sarcomatous change and when it does it becomes 'completely incurable' (to quote the leading expert, Dr. Nizar Tannir of MDA, Texas).   However, because chRCC is very rare, there has only been a small number of cases reported.  The same goes for sarcomatoid collecting duct.  

The type is not as important as the extent of sarcomatoid change.  The more change the worse is what has been believed to be true, with a very short life expectancy (this was confirmed yet again at the KCA Conference at MDA not many days ago) although I believe that that is now out-dated information.  Our Nancy is an example of someone with near 100% sRCC who has done brilliantly on HD IL2.  Others of us in the same category - mostly sRCC - are doing OK on other drugs (like myself on Votrient).

Glad to see that you're continuing to do well yourself.

Posts: 31
Joined: Mar 2013

Thanks April for your kind words.  If I have to be part of a club that I don't want to be in, at least it is with caring strong people!

Texas_wedge, best of luck with your upcoming scans.  I will be praying for good results.  I appreciate your words of wisdom.  My husband's doctor did not seem to be as concerned about the sarcomatoid as I am.   He said we will not know how his cancer will respond until he gets on the Sutent. He said since Mike's tumors are small and not causing him any issues at this time, if we get stable disease for several months or longer he will be happy.  At that time maybe Mike will be eligible for a clinical trial.  If not, he assured us there are still lots of options! 

I am going to make it a point to be more positive!


alice124's picture
Posts: 898
Joined: Mar 2012

As Tex pointed out, both Votrient and Sutent have good track records. John (one putt) also is stage 4 with sarcomatoid features.   Prior to John going into the trial, his doctor discussed options and one of them was Sutent. At that time, the doctor mentioned a Sutent patient who had been stable (no growth) for nine years after a late RCC stage diagnosis that had metastasized to the lungs.

I understand being frightened with the growth to the lungs and the word sarcomatoid, but both Sutent and Votrient are valuable fighters in RCC, particularly in addressing lung issues. One word of caution, don't google sarcomatoid randomly. Scary OLD stuff out there! Here's to positive thinking.

vdm13's picture
Posts: 47
Joined: Jul 2012

My Stage 4 / Grade 4 tumor presented with sarcomatoid features. I've been on Sutent for 4 cycles with great success. Check out my post from earlier today. My oncologist said they are surprised how well I have done with Sutent considering the aggressive flavor of RCC I have. I credit this to the Sutent, positive thinking, and Geral White's MAARS program.

Good luck, stay positive and I hope to hear great progress reports from you!


1 Correction and 1 Addition: First, I either mistyped this 5 days go or posted it several months ago, but I just finished my 8th Sutent cycle, not my 4th. Second, to Alice's reference (or someone else, maybe?) above to the 9 year Sutent survivor having had mets to the lungs. When originally diagnosed they characterized the mets in my lungs as "innumerable nodules" - meaning, of course, too many to count - with 2 additional lesions or masses. As of my last scan one week ago my lungs were classfied as "normal", meaning clear. There is no sign of metastatic disease in my lungs. This isn't a death sentence anymore. This is beatable and we will prevail. Period.

Texas_wedge's picture
Posts: 2799
Joined: Nov 2011

Now fully qualified for Team Fox.

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