SARCOMATOID CHROMOPHOBE RCC

Texas_wedge

I'm looking to compare notes with anyone who has Chromophobe RCC that has become sarcomatoid. I don't want to be knocked down in the rush, so please don't all flock here at once

In the event that there's anyone out there who has heavily necrotic, metastatic, sarcomatoid chromophobe RCC I'd be happy to make contact sooner rather than later.

We already have threads for non-sarcomatoid Chromophobe and for non-Chromophobe sarcomatoid so I'd appreciate it if this thread is limited to messages where both of these histological features apply.

There is a small amount of relevant data on Cancer Compass and on KIDNEY-ONC but almost nothing recent. A current paper indicates that Pazopanib (Votrient) may hold some promise for such cases but I'm keen to garner all the information i can on this very rare and aggressive, de-differentiated cell type.

lbinmsp

HMM
Seems like you're the the Lone Ranger here - thinking Kidney-ONC@listserv.acor.org might be the place to find kindred souls. Although the rest of us aren't where you are, we can be your 'Kemosahbees'.

myboys2

Close match
Ok so my son has Mucinous Tubular Spindle RCC which is a parallel to Chromo. It is also supposed to be indolent. He does have a 10% sarc feature or less. I have found that if you go to the chromo site on other blog locations and post this, you will find folks meeting this description. I have recently farmed his case out to a friend very high up at Mt Sinai. My reason for concern is he will be doing IL2 on 6/11 and I want to be certain that this is the correct path knowing that its all a guessing game to some extent. As you have read he also has mets to bones and down from 4 to 2 liver mets thinking from sutent not sure (or was a response to debulking again guessing game). I do know that some take chemo (gemcitabine flavor) for sarc feature and get a CR from it hence my continued probing.

myboys2

interesting video
http://www.youtube.com/watch?v=hoUXFDioVtg

This is from the kidney cancer 2012 symposium. About 21 mins into it there is discussion on chrom w sarc

Texas_wedge

myboys2 said:

interesting video
http://www.youtube.com/watch?v=hoUXFDioVtg

This is from the kidney cancer 2012 symposium. About 21 mins into it there is discussion on chrom w sarc

Video
Rather frustratingly that link pulls up the appropriate screen but the You Tube video won't play - it comes up without the controls so I can't start it. I've had this problem before and haven't cracked it yet - must ask my geeky Wife and Daughter - either of them will make me feel a fool by demonstrating how easily I should have been able to sort it!

Can you remember who was talking, Gail? It's just possible I've already seen it. If not, of course I'd be keen to.

Like many here, I'm dying to hear that Cody has been declared NED - roll on that day. It's good that he's done so well on Sutent and is young and tough enough to take IL2. Will that be at the Roosevelt? I spoke very briefly with Jan Dutcher on Friday with a view to a telephone consultation if it seems desirable (or even a trip to NY). She's obviously a wonderful lady. Has she been involved much in Cody's treatment?

I believe that the de-differentiation that results in sarcomatoid histology sometimes renders it vulnerable to the older chemo treatments, notably gemcitabine (Gemzar) with cisplatin (for other cancers?) and doxorubicin (Adriamycin) for renal cancer. Unfortunately in the case of Chromophobe --> sarcomatoid, as was highlighted in Saturday's day-long conference at MDA down south, there is no known successful treatment aside from surgery.

I had a call from my first surgeon today, reporting on the outcome of his colleague's operation on me a couple of weeks ago. It was discussed at a board meeting yesterday and apparently the second op achieved clear margins all the way round, albeit only very narrowly at some points. That's better than had proved possible in the first op in December and so I might just get lucky. Clinic in the next few weeks and then another CT, followed by close surveillance (probably indefinitely). It is a very agreeable surprise since the tumour volume had increased by about 16 times in the not very many days between recent scan and op! My original chromophobe tumour was indolent and I may have had it unwittingly for 20 to 30 years. They really mean it when they say things liven up when it goes sarcomatoid. My recent specimen was 5.5cm by 3.5cm with a hard nodule of 2.5cm which was not visible even visible at the first open surgery in December.

If I'd had to wait another week or two for the latest op, the possible situation doesn't bear thinking about!

Please tell Cody I was asking for him and tell him more power to his elbow with both his health and his studies. I can't begin to guess whether you're prouder of him or he of you. All the very best to you all Gail.

Texas_wedge

lbinmsp said:

HMM
Seems like you're the the Lone Ranger here - thinking Kidney-ONC@listserv.acor.org might be the place to find kindred souls. Although the rest of us aren't where you are, we can be your 'Kemosahbees'.

HMM
You're right again Liz. I'm not finding anyone else who has mostly sarcomatoid chromophobe still active on the threads at the present time. Good to have the kemosahbees instead :-)

garym

Texas_wedge said:

Video
Rather frustratingly that link pulls up the appropriate screen but the You Tube video won't play - it comes up without the controls so I can't start it. I've had this problem before and haven't cracked it yet - must ask my geeky Wife and Daughter - either of them will make me feel a fool by demonstrating how easily I should have been able to sort it!

Can you remember who was talking, Gail? It's just possible I've already seen it. If not, of course I'd be keen to.

Like many here, I'm dying to hear that Cody has been declared NED - roll on that day. It's good that he's done so well on Sutent and is young and tough enough to take IL2. Will that be at the Roosevelt? I spoke very briefly with Jan Dutcher on Friday with a view to a telephone consultation if it seems desirable (or even a trip to NY). She's obviously a wonderful lady. Has she been involved much in Cody's treatment?

I believe that the de-differentiation that results in sarcomatoid histology sometimes renders it vulnerable to the older chemo treatments, notably gemcitabine (Gemzar) with cisplatin (for other cancers?) and doxorubicin (Adriamycin) for renal cancer. Unfortunately in the case of Chromophobe --> sarcomatoid, as was highlighted in Saturday's day-long conference at MDA down south, there is no known successful treatment aside from surgery.

I had a call from my first surgeon today, reporting on the outcome of his colleague's operation on me a couple of weeks ago. It was discussed at a board meeting yesterday and apparently the second op achieved clear margins all the way round, albeit only very narrowly at some points. That's better than had proved possible in the first op in December and so I might just get lucky. Clinic in the next few weeks and then another CT, followed by close surveillance (probably indefinitely). It is a very agreeable surprise since the tumour volume had increased by about 16 times in the not very many days between recent scan and op! My original chromophobe tumour was indolent and I may have had it unwittingly for 20 to 30 years. They really mean it when they say things liven up when it goes sarcomatoid. My recent specimen was 5.5cm by 3.5cm with a hard nodule of 2.5cm which was not visible even visible at the first open surgery in December.

If I'd had to wait another week or two for the latest op, the possible situation doesn't bear thinking about!

Please tell Cody I was asking for him and tell him more power to his elbow with both his health and his studies. I can't begin to guess whether you're prouder of him or he of you. All the very best to you all Gail.

Clear margins!!!
TW,

THAT'S GREAT NEWS! I know its only the first small step, but what a start.

Congrats,

Gary

Texas_wedge

garym said:

Clear margins!!!
TW,

THAT'S GREAT NEWS! I know its only the first small step, but what a start.

Congrats,

Gary

Outcome still marginal
BUT, as you say, a good start and we're a lot happier than we were. Thanks Gary.

myboys2

Texas_wedge said:

Video
Rather frustratingly that link pulls up the appropriate screen but the You Tube video won't play - it comes up without the controls so I can't start it. I've had this problem before and haven't cracked it yet - must ask my geeky Wife and Daughter - either of them will make me feel a fool by demonstrating how easily I should have been able to sort it!

Can you remember who was talking, Gail? It's just possible I've already seen it. If not, of course I'd be keen to.

Like many here, I'm dying to hear that Cody has been declared NED - roll on that day. It's good that he's done so well on Sutent and is young and tough enough to take IL2. Will that be at the Roosevelt? I spoke very briefly with Jan Dutcher on Friday with a view to a telephone consultation if it seems desirable (or even a trip to NY). She's obviously a wonderful lady. Has she been involved much in Cody's treatment?

I believe that the de-differentiation that results in sarcomatoid histology sometimes renders it vulnerable to the older chemo treatments, notably gemcitabine (Gemzar) with cisplatin (for other cancers?) and doxorubicin (Adriamycin) for renal cancer. Unfortunately in the case of Chromophobe --> sarcomatoid, as was highlighted in Saturday's day-long conference at MDA down south, there is no known successful treatment aside from surgery.

I had a call from my first surgeon today, reporting on the outcome of his colleague's operation on me a couple of weeks ago. It was discussed at a board meeting yesterday and apparently the second op achieved clear margins all the way round, albeit only very narrowly at some points. That's better than had proved possible in the first op in December and so I might just get lucky. Clinic in the next few weeks and then another CT, followed by close surveillance (probably indefinitely). It is a very agreeable surprise since the tumour volume had increased by about 16 times in the not very many days between recent scan and op! My original chromophobe tumour was indolent and I may have had it unwittingly for 20 to 30 years. They really mean it when they say things liven up when it goes sarcomatoid. My recent specimen was 5.5cm by 3.5cm with a hard nodule of 2.5cm which was not visible even visible at the first open surgery in December.

If I'd had to wait another week or two for the latest op, the possible situation doesn't bear thinking about!

Please tell Cody I was asking for him and tell him more power to his elbow with both his health and his studies. I can't begin to guess whether you're prouder of him or he of you. All the very best to you all Gail.

I just watched all 8 hours today!!
The video I was trying to send was Dr Haas which you probably saw in person maybe, or not. Dr Dutcher was excited by our diagnosis and was almost excited to do IL2. I worry it's not scatter shot. I also have a doc at Mt Sinai reviewing his entire case, he is a friend of my bro's. He is going to farm it out to all his favorite contacts to get more eyes on it. I worry that he needs to get the right treatment and in some cases for him chemo might be a solution. Where was the second I don't see that. The reason I ask is there is a lady from one of my other rare sites that has had chrom w sarc for over 10 years and has taken no treatments other then surgical. She says its a nuisance but has only had 2 other locations in that time. If you private message me I would be happy to share her contact info and perhaps she could give you a specific earful on your brand.

adobe

myboys2 said:

I just watched all 8 hours today!!
The video I was trying to send was Dr Haas which you probably saw in person maybe, or not. Dr Dutcher was excited by our diagnosis and was almost excited to do IL2. I worry it's not scatter shot. I also have a doc at Mt Sinai reviewing his entire case, he is a friend of my bro's. He is going to farm it out to all his favorite contacts to get more eyes on it. I worry that he needs to get the right treatment and in some cases for him chemo might be a solution. Where was the second I don't see that. The reason I ask is there is a lady from one of my other rare sites that has had chrom w sarc for over 10 years and has taken no treatments other then surgical. She says its a nuisance but has only had 2 other locations in that time. If you private message me I would be happy to share her contact info and perhaps she could give you a specific earful on your brand.

The Battle Continues
Hello Tex -- my first time back for many weeks, and I always look for your informative and encouraging posts. I was gone celebrating my 50th wedding anniversary.

I do not know about all the different kinds of RCC. I know I have Clear Cell RCC. I will ask more questions to define when I see my doc this week. I have had RCC for 13 years, starting with removal of left kidney, and adrenal gland. During this time I never had any medications, only ct scans. Then it went to my pancreas last year. I started on Vorient, the drug you mentioned. It is supposed to be Very effective. However, my liver could not handle the drug. Doc changed me to Nexavar full dose, problems with severe rash. Nexavar reduced to half dose and I am doing well, some tolerable side effects. You gave me good advice when I first posted, so am just hoping you stay with the battle, and let us know your results.

adobe

adobe said:

The Battle Continues
Hello Tex -- my first time back for many weeks, and I always look for your informative and encouraging posts. I was gone celebrating my 50th wedding anniversary.

I do not know about all the different kinds of RCC. I know I have Clear Cell RCC. I will ask more questions to define when I see my doc this week. I have had RCC for 13 years, starting with removal of left kidney, and adrenal gland. During this time I never had any medications, only ct scans. Then it went to my pancreas last year. I started on Vorient, the drug you mentioned. It is supposed to be Very effective. However, my liver could not handle the drug. Doc changed me to Nexavar full dose, problems with severe rash. Nexavar reduced to half dose and I am doing well, some tolerable side effects. You gave me good advice when I first posted, so am just hoping you stay with the battle, and let us know your results.

Your Treatment
What are you taking as drug therapy?

Texas_wedge

adobe said:

Your Treatment
What are you taking as drug therapy?

50th Anniversary
Congratulations adobe - I trust you and your husband both had a great time celebrating a milestone that at times you probably thought you'd never live to see. Now just make sure Mr. and Mrs. iceman don't catch you up.

I take it you're now back down on the farm and that you're still getting on fine with the benefits of Nexavar. (By the way, in case you're interested, it's a drug also much used with e.g. metastatic melanoma - maybe not surprisingly, since renal cancer and melanoma seem to be more closely related than with most of the numerous other cancers.)

I'm not on any medication and will try to emulate your past achievement of holding it at bay for many years without needing meds. I may not have much option anyway since my condition is one in which apparently no therapies work and the only weapon is the scalpel. However, if that does the job i won't have much to complain about.

Once again, congratulations to you both!

lbinmsp

Texas_wedge said:

Video
Rather frustratingly that link pulls up the appropriate screen but the You Tube video won't play - it comes up without the controls so I can't start it. I've had this problem before and haven't cracked it yet - must ask my geeky Wife and Daughter - either of them will make me feel a fool by demonstrating how easily I should have been able to sort it!

Can you remember who was talking, Gail? It's just possible I've already seen it. If not, of course I'd be keen to.

Like many here, I'm dying to hear that Cody has been declared NED - roll on that day. It's good that he's done so well on Sutent and is young and tough enough to take IL2. Will that be at the Roosevelt? I spoke very briefly with Jan Dutcher on Friday with a view to a telephone consultation if it seems desirable (or even a trip to NY). She's obviously a wonderful lady. Has she been involved much in Cody's treatment?

I believe that the de-differentiation that results in sarcomatoid histology sometimes renders it vulnerable to the older chemo treatments, notably gemcitabine (Gemzar) with cisplatin (for other cancers?) and doxorubicin (Adriamycin) for renal cancer. Unfortunately in the case of Chromophobe --> sarcomatoid, as was highlighted in Saturday's day-long conference at MDA down south, there is no known successful treatment aside from surgery.

I had a call from my first surgeon today, reporting on the outcome of his colleague's operation on me a couple of weeks ago. It was discussed at a board meeting yesterday and apparently the second op achieved clear margins all the way round, albeit only very narrowly at some points. That's better than had proved possible in the first op in December and so I might just get lucky. Clinic in the next few weeks and then another CT, followed by close surveillance (probably indefinitely). It is a very agreeable surprise since the tumour volume had increased by about 16 times in the not very many days between recent scan and op! My original chromophobe tumour was indolent and I may have had it unwittingly for 20 to 30 years. They really mean it when they say things liven up when it goes sarcomatoid. My recent specimen was 5.5cm by 3.5cm with a hard nodule of 2.5cm which was not visible even visible at the first open surgery in December.

If I'd had to wait another week or two for the latest op, the possible situation doesn't bear thinking about!

Please tell Cody I was asking for him and tell him more power to his elbow with both his health and his studies. I can't begin to guess whether you're prouder of him or he of you. All the very best to you all Gail.

WHEW!
That is very good news! If they can cut it out and get clear margins, it's a very positive outcome. Yes, you'll get scans and followup regularly - just a PIA mostly - coupled with a few days of OH 'S***' waiting for the results - but worth it to stay on top of this stuff. Maybe they will start you on one of the drugs that might help hold it at bay. PRAYERS ALWAYS!

LizB