RCC Chromophobe bone metastasis...

PK_Chicago · April 2013

My one year post kidney surgery CT scan showed a bone lesion on my pubic bone. I was then given an MRI, followed by a bone scan, followed by a biopsy of the pubic bone and one of another lesion in my shoulder - they confirmed that they are RCC cells.

I am a male, 48 years old, my diagnosis was in January 2012, stage 4, my tumor was encapsulated in my left kidney 14cm, USA, white (Austrian), AB positive. I've had the following surgeries - Radical nephrectomy (1/17/2012), Colon Resection (1/17/2012), Thyroid removed (9/18/2012).

The Oncologist I am currently seeing is suggesting Torisel - he feels it has the most data around success in treating the chromophobe subtype.

I am very healthy otherwise with no symptoms of the bone lesions (pain etc.) and no fatigue related to the thyroid being gone.

Has anyone else with the chromophobic subtype been treated with Torisel? What other treatments have been used?

Any feedback would be great!

Thanks all!!!!

PK

NanoSecond · April 2013

Bone mets

Hi PK,

I have chromophobe and only bone mets. However, I am taking Sutent. I have had "dramatic" (positive) response so far. This after 7+ months on it at maximum dosage and with no significant side effects. I just had my latest CT and full-body nuclear bone scans this past Friday and will hear the results on Wednesday. Speaking about scanxiety... but I digress.

Whatever drug you end up taking please make sure you discuss also taking either Xgeva (Denosumab) or Zometa (Zoledroic Acid) along with it. This is absolutely essential when you are taking Sutent and with all the other TKI's. I am not sure about the mTOR's though. I have to research that but I suspect it is also the case.

PK_Chicago · April 2013

NanoSecond said:
Bone mets
Hi PK,

I have chromophobe and only bone mets. However, I am taking Sutent. I have had "dramatic" (positive) response so far. This after 7+ months on it at maximum dosage and with no significant side effects. I just had my latest CT and full-body nuclear bone scans this past Friday and will hear the results on Wednesday. Speaking about scanxiety... but I digress.

Whatever drug you end up taking please make sure you discuss also taking either Xgeva (Denosumab) or Zometa (Zoledroic Acid) along with it. This is absolutely essential when you are taking Sutent and with all the other TKI's. I am not sure about the mTOR's though. I have to research that but I suspect it is also the case.

Doh! Spelling! Bone metastasis!

The oncologist mentioned Sutent as a possibility - do you know the reason that your oncologist decided on Sutent?

He also mentioned the bishosponates - but mentioned the jaw bone deterioration.

There are so many paths - he even mentioned waiting a month and taking a new set of scans! I feel I should do SOMETHING!

Thanks

PK

I am alive · April 2013

Non-clear cell clinical trial

I am in a clinical trial specifically for folks like us who have non-clear cell RCC (as opposed to the more common clear cell). It's administered out of Memorial Sloan Kettering Cancer Center in NYC and is open to people who have not had previous drug therapy. I take a daily 10mg pill of everolimus (also known as Afinitor) and every two weeks get an infusion of bevacizumab (also known as Avastin). You need to be able to get to Sloan for the infusions. Are you in Chicago? Does your oncologist specialize in kidney cancer? That would help a lot because chromophobe is rare. Historically, chromophobe hasn't responded to as many drugs as clear cell. On the plus inside, if it isn't sacromatoid, it is usually slower growing. Sutent is a go-to drug for chromophobe. A fellow chromophobe poster on this board is in the midst of a good run on Votrient. All this is wildly confusing at first, but you're in the right place to educate yourself. Take a couple of days to troll these postings and also check out another helpful site, SmartPatients.com. There are folks dealing with chromophobe there, too. Between the two sites you'll gain a lot of knowledge about available drugs, how they work, their typical side effects, new drugs in the pipeline, and how people are coping. I'd be lost without these sites. Good luck!

NanoSecond · April 2013

PK_Chicago said:
Doh! Spelling! Bone metastasis!
The oncologist mentioned Sutent as a possibility - do you know the reason that your oncologist decided on Sutent?

He also mentioned the bishosponates - but mentioned the jaw bone deterioration.

There are so many paths - he even mentioned waiting a month and taking a new set of scans! I feel I should do SOMETHING!

Thanks

PK

Why Sutent

PK,

I had a radical nephrectomy in May 2010 after the discovery of an 11cm tumor in my left kidney. It was fully encapsulated and there was no spread. I was then declared NED for the next 2+ years. Bone lesions were onlhy discovered on my sacrum (base of my spine) and left femur (thigh/hip) this past July 2012. So I now see an oncologist and a bone cancer specialist. They both agreed that Sutent + Xgeva would be the best therapy in my case. I cannot comment on why your oncologist might be choosing an mTOR as a first line therapy for you.

Both Xgeva and Zometa carry a small risk of ONJ (Osteonecrosis of the Jaw). It just goes with the territory. However, these drugs work differently. Xgeva seems to work faster and a recent peer reviewed paper showed that it may be slightly more effective than Zometa for long term success. It is also a newer drug and is more expensive. However, it does not put any stress on the kidney at all (Zometa can) and it is administered as simple shot in the arm once a month. On the other hand there is some speculation that it could slightly weaken the immune system. So for those contemplating undergoing HDIL2 it might not be the first choice.

Regardless, my last visit with my bone cancer specialist was in November 2012. At that time he also took X-rays of the affected areas (just as he had in July). These show more resolution than a CT and/or nuclear bone scan. At that time he told me that my sacrum now looked to be "normal" and that all the activity on my left femur was only new bone growth. He said that my response had been "dramatic" and it was just what he had hoped to see. He was so pleased that he told me not to come back for another 6 months. Well, that 6 months is now up. So I will visit with him one week from tomorrow and he will repeat taking X-rays in those areas for comparison. Meanwhile I will meet with my local oncologist the day after tomorrow to hear the results of the CT Scan and full-body nuclear bone scan done this past Friday.

That's my story so far. Except to add that I have also done extensive research on nutrition and diet and have changed mine accordingly. I also take a few carefully considered supplements (all this is based on SBM - science based medicine). It is for this reason, I am convinced, that I have had no significant side effects while taking the maximum dosage of Sutent (50mg/day - 4wks on / 1 wk off).

I am happy to share the results of my research with you or anyone else. It is a 65+ page .pdf document. If that is of interest email me at: n.feldman@videopost.com and I will be happy to email a copy back to you.

-NanoSecond (Neil)

Texas_wedge · April 2013

I am alive said:
Non-clear cell clinical trial
I am in a clinical trial specifically for folks like us who have non-clear cell RCC (as opposed to the more common clear cell). It's administered out of Memorial Sloan Kettering Cancer Center in NYC and is open to people who have not had previous drug therapy. I take a daily 10mg pill of everolimus (also known as Afinitor) and every two weeks get an infusion of bevacizumab (also known as Avastin). You need to be able to get to Sloan for the infusions. Are you in Chicago? Does your oncologist specialize in kidney cancer? That would help a lot because chromophobe is rare. Historically, chromophobe hasn't responded to as many drugs as clear cell. On the plus inside, if it isn't sacromatoid, it is usually slower growing. Sutent is a go-to drug for chromophobe. A fellow chromophobe poster on this board is in the midst of a good run on Votrient. All this is wildly confusing at first, but you're in the right place to educate yourself. Take a couple of days to troll these postings and also check out another helpful site, SmartPatients.com. There are folks dealing with chromophobe there, too. Between the two sites you'll gain a lot of knowledge about available drugs, how they work, their typical side effects, new drugs in the pipeline, and how people are coping. I'd be lost without these sites. Good luck!

Drugs for chRCC

Hi, PK - haven't seen much of you for a long while. Sorry you've got new problems to sort out. You've received good advice above.

Thanks for the data, which I've put into my chromophobe database. Did they give you a grade? Also, I take it you didn't have any sarcomatoid component - is that correct?

I've looked at my database re drugs people are on. I'm awaiting data from a few but most of us aren't on any drug treatment! It's a bit of a guessing game. I am alive is on a trial with Avastin + Afinitor, I'm on Votrient, two are on Sutent and one has gone on from Sutent to Nexavar. An honorary member of the database (Cody, Son of another member here) who has an even rarer condition, closely related to chRCC, is only 21 or 22 and has had Sutent, then IL2 and is now on cabozantinib.

I've not come across information suggesting the suitability of Torisel for chRCC. Has your doc told you where he got this from? I'd like to read such a source and I'm sure others here would too.

PK_Chicago · May 2013

Texas_wedge said:
Drugs for chRCC
Hi, PK - haven't seen much of you for a long while. Sorry you've got new problems to sort out. You've received good advice above.

Thanks for the data, which I've put into my chromophobe database. Did they give you a grade? Also, I take it you didn't have any sarcomatoid component - is that correct?

I've looked at my database re drugs people are on. I'm awaiting data from a few but most of us aren't on any drug treatment! It's a bit of a guessing game. I am alive is on a trial with Avastin + Afinitor, I'm on Votrient, two are on Sutent and one has gone on from Sutent to Nexavar. An honorary member of the database (Cody, Son of another member here) who has an even rarer condition, closely related to chRCC, is only 21 or 22 and has had Sutent, then IL2 and is now on cabozantinib.

I've not come across information suggesting the suitability of Torisel for chRCC. Has your doc told you where he got this from? I'd like to read such a source and I'm sure others here would too.

Drugs for chRCC...

They've never really "graded" me - and no sarcomatoid component. According to the oncologist - he said there is more data (no source given) that the Torisel has a more positive response when dealing with the chRCC. He said Sutent is also a possibility - but Torisel is what he feels is best at this point.

I'm not fooling myself - this lousy thing has spread! I will pursue this path for now - but will investigate other options (second opinions, etc.). I know I need to get started - fortunately I live in Chicago where I have access to many top notch cancer centers.

The odd thing is I've never had ANY symptoms - my initial tumor was discovered during a CT scan for diverticulitis issues, the thyroid nodules at my six month scans, and the lesions during my one year scans. I've had now fatigue, weight loss or gain, etc.

I will check back often on the progress of the list - it would be a great thing to share!

PK

PK_Chicago · May 2013

Texas_wedge said:
Drugs for chRCC
Hi, PK - haven't seen much of you for a long while. Sorry you've got new problems to sort out. You've received good advice above.

Thanks for the data, which I've put into my chromophobe database. Did they give you a grade? Also, I take it you didn't have any sarcomatoid component - is that correct?

I've looked at my database re drugs people are on. I'm awaiting data from a few but most of us aren't on any drug treatment! It's a bit of a guessing game. I am alive is on a trial with Avastin + Afinitor, I'm on Votrient, two are on Sutent and one has gone on from Sutent to Nexavar. An honorary member of the database (Cody, Son of another member here) who has an even rarer condition, closely related to chRCC, is only 21 or 22 and has had Sutent, then IL2 and is now on cabozantinib.

I've not come across information suggesting the suitability of Torisel for chRCC. Has your doc told you where he got this from? I'd like to read such a source and I'm sure others here would too.