Sarcomatoid
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Just got diagnosed this weekdhs1963 said:When I saw that abstract, I realized there is possibility
The long term numbers are bleak. But, they are finding treatments. That is encouraging. Personally, I am at the find a met, cut it out stage.
As for statistics, I am approaching my 1 year cancerversy. At that point, I exceed the median for Sarcomitoid features. I plan to be an outlier at first, but hopefully, a typicial patient in the end....
Did I mention I hate cancer...
Just got diagnosed this week with this sarcomatoid (8x10x9 cm) w/ mets in liver (12x5x8 cm) and lungs. 48 yo relatively healthy male (or was). Was told theres no cure, but would be given Temsirolimus (Torisel) to try and inhibit it. Was also told "that I would unlikely survive a year". Just had a brain MRI and bone scans to check for more tumors, brain just came back clean).
Oncologist just told me that hes been consulting with a guy in Seattle and someone back east about the possibilites of a duo chemical but it would be much harsher on my body and one of the major side effects is the weakening of the heart (not sure if he said it was guaranteed or not...nor did I write down/remember the names of the 2 chenicals).
I understand there arent many people out there with sarcomatoids, so thought I'd add my name to the list.
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Sarcomatoid and treatmentsYodaradman said:Just got diagnosed this week
Just got diagnosed this week with this sarcomatoid (8x10x9 cm) w/ mets in liver (12x5x8 cm) and lungs. 48 yo relatively healthy male (or was). Was told theres no cure, but would be given Temsirolimus (Torisel) to try and inhibit it. Was also told "that I would unlikely survive a year". Just had a brain MRI and bone scans to check for more tumors, brain just came back clean).
Oncologist just told me that hes been consulting with a guy in Seattle and someone back east about the possibilites of a duo chemical but it would be much harsher on my body and one of the major side effects is the weakening of the heart (not sure if he said it was guaranteed or not...nor did I write down/remember the names of the 2 chenicals).
I understand there arent many people out there with sarcomatoids, so thought I'd add my name to the list.
Welcome to a club we join under protest but are then glad we did.
Have you been told what underlying sub-type of RCC you have/had, that has been turning sarcomatoid?
Sarcomatoid cases are actually not that uncommon.
The chemo combo they're talking about is almost certainly doxorubicin (Adriamycin) and gemcitabine (Gemzar). Doxorubicin damages the heart and only a certain limited number of doses is given for that reason.
Have you been told why Torisel was chosen over e.g. Sutent, Votrient, Inlyta?
I would lay money that you'll be around for a lot more than a year.
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I guess I dont understandTexas_wedge said:Sarcomatoid and treatments
Welcome to a club we join under protest but are then glad we did.
Have you been told what underlying sub-type of RCC you have/had, that has been turning sarcomatoid?
Sarcomatoid cases are actually not that uncommon.
The chemo combo they're talking about is almost certainly doxorubicin (Adriamycin) and gemcitabine (Gemzar). Doxorubicin damages the heart and only a certain limited number of doses is given for that reason.
Have you been told why Torisel was chosen over e.g. Sutent, Votrient, Inlyta?
I would lay money that you'll be around for a lot more than a year.
I guess I dont understand what sub-types are, I dont see anything similar to those words in the pathology report. I dont know why hes chosen Torisel. Ill get my chemo port on Monday and the plan to start treatment a week from Tuesday (19th).
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Just now reading this thread...angec said:Ok, now I am in tears! That
Ok, now I am in tears! That was very sweet! Let's all keep our prayers going and pray that TW is going to get the treatment that will help him. I know it is out there!Talk about get my emotions reeling. What a thread. I feel very privileged to be explording these posts. All the stories. The journeys. Each that has walked before me in so much pain and uncertainty, yet i read so much hope and determination to be victorious.
You all feel like family x
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A MESSAGE TO EVERYONEYodaradman said:I guess I dont understand
I guess I dont understand what sub-types are, I dont see anything similar to those words in the pathology report. I dont know why hes chosen Torisel. Ill get my chemo port on Monday and the plan to start treatment a week from Tuesday (19th).
and a source of information for Yodaradman.
I'm pretty sure that many members will, like me, have by-passed the main ACS site when they found this forum. If they haven't explored more widely since then, they will have missed out on enormous riches of information, answering very many of the questions that are asked here and where the answers are already available from an authoritative source.
I've just completed answering a survey for the Society in which I suggested that much more prominent display of the Site Map would be a good idea. I think most people here will be amazed by the wealth of instant information sitting waiting. The Site Map is to be found here:
http://www.cancer.org/aboutus/sitemap/index
If you drill down from there you can find an Overview of Kidney Cancer, which gives a full answer to Yodaradman's question about types and sub-types of kidney cancer, here:
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Sorry, I accept theTexas_wedge said:A MESSAGE TO EVERYONE
and a source of information for Yodaradman.
I'm pretty sure that many members will, like me, have by-passed the main ACS site when they found this forum. If they haven't explored more widely since then, they will have missed out on enormous riches of information, answering very many of the questions that are asked here and where the answers are already available from an authoritative source.
I've just completed answering a survey for the Society in which I suggested that much more prominent display of the Site Map would be a good idea. I think most people here will be amazed by the wealth of instant information sitting waiting. The Site Map is to be found here:
http://www.cancer.org/aboutus/sitemap/index
If you drill down from there you can find an Overview of Kidney Cancer, which gives a full answer to Yodaradman's question about types and sub-types of kidney cancer, here:
Sorry, I accept the admonishments. I have actually seen that on mutliple sites, but I still dont know the answer yet (my wife took notes when we met with the doc so ill look at her notes). Although the DR did use different terms (he said something that ended with "showing sarcomatoid tendacies') than the pathologist did but my brain has been so numb the last 2-3 weeks while trying to digest all this that im so overwhelmed with data and unable to process all of it. ----looked at her notes we think he said Clear Cell
The reason I joined here is that ive seen more detail as to what treatments and the responses to those treatments have been AND the support between the people on here. Just talking/writing about it helps, and the feedback helps understand some of the details. My first response when he told me no cure and just gonna use an inhibitor was to search the web frantically and found many people here talking about trying different things and how they were working out for them. My initial take from my Dr felt like, So Sad,sorry, take 2 aspirin and call me in the morning because there's nothing we can do about it. Now just a few days later he seems to have changed his outlook (after consulting some others) so at least we can try to put up a fight. Sorry for the ramblings
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HD IL2wfdesq said:Good to find this subgroup
I was diagnosed with RCC in April 2010, unclassified with 40% sarcomatoid. Mets to lung and lumph system found in June 2011. Rollercoaster ride for the last year. A lung met now stands at 6 cm x 6.5 cm and a lymph node is now 2.3 cm, and a 5+mm suspicious area in right front cortex of brain. Sutent from June 2011 to May, 2012, tried inlyta for 20 days in June but got severe headaches and leg cramping. Now on Nexavar for past 8 days.
I am interested to hear that some with sarcomatoid have tried HDIL-2. I was disqualified because of the sarcomatoid. Anyone else have info on who may treat sarcomatoid with HD IL-2?
Went to KCA National Conference in Houston in April - Dr. Nazir Tannir basically said that no current FDA approved drug has shown as being effective with Sarcomatoid. My oncologist says that is plain wrong. Who does one believe, a nationally known expert in non clear cell from MDAnderson or a wonderful caring oncologist at a highly respected university with ties to another world class facility?
Any thought or comments would be appreciated.We were told when my husband underwent testing to qualify for HD IL2 was one of the disqualifiers was Brain lessions or Tumors..since he had not had a Head MRI it was one of our biggest worries... Because of the way HD IL2 works it can cause fatal swelling and brain bleeds(if Cancer is Present)...So I would be very careful if you have any suspicous places in your brain.. I have read of someone undergoing HD IL2 after brain tumors/lessions were treated by other methods...and were gone..I will have to check my research.. because it was not here that I read that.. and can not remember the exact site as I read it after nothing was found in Chuck's brain so it was just and interesting side bit of news... I do not know much about your form of Cancer.. My Husband has Clear Cell with Rhabdoid features...I hope you find the best most effective form of treatment for you.. please keep us posted!! Hugggsss
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ApologiesYodaradman said:Sorry, I accept the
Sorry, I accept the admonishments. I have actually seen that on mutliple sites, but I still dont know the answer yet (my wife took notes when we met with the doc so ill look at her notes). Although the DR did use different terms (he said something that ended with "showing sarcomatoid tendacies') than the pathologist did but my brain has been so numb the last 2-3 weeks while trying to digest all this that im so overwhelmed with data and unable to process all of it. ----looked at her notes we think he said Clear Cell
The reason I joined here is that ive seen more detail as to what treatments and the responses to those treatments have been AND the support between the people on here. Just talking/writing about it helps, and the feedback helps understand some of the details. My first response when he told me no cure and just gonna use an inhibitor was to search the web frantically and found many people here talking about trying different things and how they were working out for them. My initial take from my Dr felt like, So Sad,sorry, take 2 aspirin and call me in the morning because there's nothing we can do about it. Now just a few days later he seems to have changed his outlook (after consulting some others) so at least we can try to put up a fight. Sorry for the ramblings
No apology needed from you for anything at all. I certainly didn't intend any admonishment, far from it. I was hoping it would help you to get a handle on the matter of sub-types of RCC if I pointed you to that material.
I was also making the general point to everyone who hasn't explored CSN much that there's a host of pieces of valuable information which they may not be aware of, not least because the ACS site is so rich that it seems like a bit of a rabbit warren. The latter problem is why I've suggested to ACS that they make the site map a more prominent item that newcomers won't miss and that will help all who come to the site to navigate more effectively.
It's good to hear that your spirits are on the up and please keep visiting and we'll try to ensure that as you both go forward the only way is up.
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TreatmentsTexas_wedge said:Apologies
No apology needed from you for anything at all. I certainly didn't intend any admonishment, far from it. I was hoping it would help you to get a handle on the matter of sub-types of RCC if I pointed you to that material.
I was also making the general point to everyone who hasn't explored CSN much that there's a host of pieces of valuable information which they may not be aware of, not least because the ACS site is so rich that it seems like a bit of a rabbit warren. The latter problem is why I've suggested to ACS that they make the site map a more prominent item that newcomers won't miss and that will help all who come to the site to navigate more effectively.
It's good to hear that your spirits are on the up and please keep visiting and we'll try to ensure that as you both go forward the only way is up.
fromdr from what I cen tell, the preferred treatment for metastatic RCC with sarcomitoid features is to cut out the mets if you can. With luck, after surgery, no cells will be lurking. That s what I am hoping for. Otherwise, there are various things that have shown promise. Oh, and if my dr told me I would die within a year, and I felt ok, I would find another doctor,
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My Husband Has Sarcomatoid RCC
Hi everyone,
I have been reading the discussion board for approximately two months now. It is the only thing that has kept my sanity. My husband urinated blood on January 24th and we went the the ER. This is where the rollercoaster ride began. Hubby is 52 and was very strong and healthy. He had been having some night sweats and had lost a few pounds but nothing major. The ER doctor told us they were seeing a 13 cm mass on his right kidney. He was admitted and we were expecting surgery. Oncologist advised she was sending him to Cleveland Clinic as the tumor was in the vena cava and he also had a pulmonary embolism. Looked like lymph node involvement also.
Radical open right nephrectomy February 11th. Final diagnosis 12 cm clear cell with 30% sarcomatoid, 11 out of 43 lymph nodes involved, necrosis present. Scans did not show any clear distant metastasis. From the path report it looks like the margin in the renal vein was not clear:( Follow up with urologist on the 28th and back to the oncologist that is supposed to be one of the best in the country for kidney cancer April 10th. Praying for the best outcome!
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Welcome to the club...Mikeyswife said:My Husband Has Sarcomatoid RCC
Hi everyone,
I have been reading the discussion board for approximately two months now. It is the only thing that has kept my sanity. My husband urinated blood on January 24th and we went the the ER. This is where the rollercoaster ride began. Hubby is 52 and was very strong and healthy. He had been having some night sweats and had lost a few pounds but nothing major. The ER doctor told us they were seeing a 13 cm mass on his right kidney. He was admitted and we were expecting surgery. Oncologist advised she was sending him to Cleveland Clinic as the tumor was in the vena cava and he also had a pulmonary embolism. Looked like lymph node involvement also.
Radical open right nephrectomy February 11th. Final diagnosis 12 cm clear cell with 30% sarcomatoid, 11 out of 43 lymph nodes involved, necrosis present. Scans did not show any clear distant metastasis. From the path report it looks like the margin in the renal vein was not clear:( Follow up with urologist on the 28th and back to the oncologist that is supposed to be one of the best in the country for kidney cancer April 10th. Praying for the best outcome!
Hi Mrs. Mikey,
I am sorry that life led you here, but as I'm sure you already know this is a very supportive group and we'll help you anyway we can. If you are not yet familiar with Texas Wedge, one of our more prominent members, I encourage you to read his story and follow him closely, his dx was similar to Mike's, but worse and he is doing very well at present. He is well versed and heavily entwined in the discussions about sarcomatoid RCC, I'm sure you will hear from him. Not long ago your options would have been very limited, but there are now drugs and trials available that are showing promise and more in the works. Keep us posted, we're here when you need us.
Good luck and Godspeed,
Gary
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Welcome...garym said:Welcome to the club...
Hi Mrs. Mikey,
I am sorry that life led you here, but as I'm sure you already know this is a very supportive group and we'll help you anyway we can. If you are not yet familiar with Texas Wedge, one of our more prominent members, I encourage you to read his story and follow him closely, his dx was similar to Mike's, but worse and he is doing very well at present. He is well versed and heavily entwined in the discussions about sarcomatoid RCC, I'm sure you will hear from him. Not long ago your options would have been very limited, but there are now drugs and trials available that are showing promise and more in the works. Keep us posted, we're here when you need us.
Good luck and Godspeed,
Gary
I too am sarcomitoid....our jobs are to prove that the statistics are wrong.
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Sarcomatoid shmarcomatoiddhs1963 said:Welcome...
I too am sarcomitoid....our jobs are to prove that the statistics are wrong.
Right on brother, let's kick them figures into the long grass!
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First week of chemoTexas_wedge said:Sarcomatoid shmarcomatoid
Right on brother, let's kick them figures into the long grass!
Well, got my first treatments yesterday, Doc went with Doxorubicin and Gemcitabine (as Texas_wedge said it would be) wasnt so bad. I thought the 2nd day Id be sick all day but they chemically took care of that too, just tired about half way through the day. Did also find out that I had another met site on a rib (so that makes kidney, liver, both lungs and a rib bone now).
Keeping in touch.
And both sorry to see more people, but good to share with more.
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First week of chemoYodaradman said:First week of chemo
Well, got my first treatments yesterday, Doc went with Doxorubicin and Gemcitabine (as Texas_wedge said it would be) wasnt so bad. I thought the 2nd day Id be sick all day but they chemically took care of that too, just tired about half way through the day. Did also find out that I had another met site on a rib (so that makes kidney, liver, both lungs and a rib bone now).
Keeping in touch.
And both sorry to see more people, but good to share with more.
Good luck with the continuing treatment and do stay in touch annd keep us posted on how you're getting on.
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Bone MetYodaradman said:First week of chemo
Well, got my first treatments yesterday, Doc went with Doxorubicin and Gemcitabine (as Texas_wedge said it would be) wasnt so bad. I thought the 2nd day Id be sick all day but they chemically took care of that too, just tired about half way through the day. Did also find out that I had another met site on a rib (so that makes kidney, liver, both lungs and a rib bone now).
Keeping in touch.
And both sorry to see more people, but good to share with more.
They are putting you on either Xgeva (Denosumab) or Zometa (Zoledronic Acid) for that newly discovered rib bone met, right?
It's important that you get on one or the other.
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BoneNanoSecond said:Bone Met
They are putting you on either Xgeva (Denosumab) or Zometa (Zoledronic Acid) for that newly discovered rib bone met, right?
It's important that you get on one or the other.
Nothing additional as of yet.
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ScansBruce1955 said:Bone Scan
Thank you all for your prayers and emotional support. I know I was an emotional wreak when I first found out that I had cancer. I couldn't talk about it with anyone except my wife at first.
I'm worried about our daughter's emotional state. She doesn't live with us, but does live close by, but she lives alone. She knows we're here for her day & night.
My wife is a 49yr old full time college student, getting ready to start her final semester after Christmas. I fear she will take a break and never finish, should our daughter's prognosis be positive.
Thanks for letting me get this off my chest.
Hope everyone to become CANCER FREE!Well daughter's scan went well. Not lymphoma. Dr's not sure what it may be. She is doing better, thank you all for your support and prayers. As for me, well as everyone knows the left kidney is gone and I'm feeling better. Can't wait to hit the golf course.
Had an ultra sound done on the right kidney.Now my right kidney has cycsts and I'm slowly going into kidney failure.
Autosomal dominant polycystic disease is what the technician called it. Going to see specialist later this month.
Wish everyone well.
Bruce
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8 Week (4 Treatment) UpdateYodaradman said:Bone
Nothing additional as of yet.
Just got the preliminary results of my first SCANs since the start of chemo. Not good, "cancer is eating by the chemo" and everything has continued to grow. So will be change to Temsirolimus startin tomorrow. I'll see the full details in the morning. So DoxoRubicin/GemCitiibine combo didnt work at all. Any suggestions?
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SuggestionYodaradman said:8 Week (4 Treatment) Update
Just got the preliminary results of my first SCANs since the start of chemo. Not good, "cancer is eating by the chemo" and everything has continued to grow. So will be change to Temsirolimus startin tomorrow. I'll see the full details in the morning. So DoxoRubicin/GemCitiibine combo didnt work at all. Any suggestions?
I am going to suggest something that may be a bit of a stretch. Also, you may not fully understand all the research that backs it up. So you might want to print this out - along with the studies in the links that I cite - and take it with you to discuss with your oncologist.
1. Test a biopsy of one of your mets for the overexpression of the protein p53. p53 is a tumor suppressor protein that is encoded by the TP53 gene:
"Mutations of the p53 Gene and p53 Protein Overexpression Are Associated with Sarcomatoid Transformation in Renal Cell Carcinomas"
http://cancerres.aacrjournals.org/content/55/3/658.short
2. As above, you must first ascertain if the p53 protein is a potential culprit. If so, then refer your onc to this article:
"Drugs Aim to Make Several Types of Cancer Self-Destruct"
This article gives the details behind various attempts to "re-enable" the p53 tumor suppressor functionality. However, when that NY Times article was first published (back in December 2012) it immediately received flak for not mentioning the drug Kevetrin which was already in Phase I clinical trials and way ahead of the crowd (read the comments that follow the story).
But now it is May. In the months since that article was published there was this PR from the manufacturer of Kevetrin, Cellceutix:
http://cellceutix.com/cellceutix-reports-in-vivo-tumor-shrinkage-in-renal-cancer/
"Research by BIDMC combined Kevetrin™ with sunitinib on cell line 786, a drug-resistant renal cancer. Cellceutix was advised by the researchers that “the Kevetrin/sunitinib combination is the first we’ve used in which actual tumor shrinkage is noted.”
Per protocol, Cellceutix has formally notified BIDMC that it has a strong interest in further collaborative efforts to develop combination treatments with Kevetrin and multikinase VEGF receptor antagonists, particularly VEGFR2 inhibitors. Cellceutix has provided the requested information that will be used to investigate a Specialized Programs of Research Excellence (SPORE) grant for a phase 2 clinical study."
So, to sum up, and put this all together...
If your sarcomatoid mets show p53 overexpression then I would have your onc (or you directly) contact the manufacturer of Kevetrin to see if it is available or if there are any clinical trials planned or in the works, etc.
Note that this suggestion will only be of value if p53 overexpression can be ascertained.
Hope that helps.
-Neil
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