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Sarcomatoid

NanaLou
Posts: 69
Joined: Oct 2011

Had my following up with oncologist yesterday. I do not qualify for any trials,because they were for clear cell cancers only. Mine is Sarcomatoid. He said this is an agressive cancer. We will keep a close eye on it. My first scan will be next month followed by another in 4 months then go to 6 months. There is a 50/50 chance it will never return. Not the numbers I hoped for, he told me to look at it as the glass is half full not half empty. Do any of you have this type? Can you tell me anything about it?

Merry Christmas to you All!!!

Nancy

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

But then we've got a very nice bunch of folks here, haven't we? Maybe some poor folks are wrecked by problems like cancer but those who show up here are generally rendered more, rather than less, human by the chastening experience of facing their own mortality.

I've come back from a fascinating day in our High Court in Edinburgh to find a letter advising an appointment in a renal oncology clinic tomorrow week when I guess we'll review possible options. Even with a rare form of RCC there will be some palliative possibilities so I'll doubtless soon be engaging in dialogues with others in roughly similar situations.

Thanks for the pep talks, my fellow warriors.

Hanno's picture
Hanno
Posts: 45
Joined: Aug 2012

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 

wfdesq
Posts: 1
Joined: Feb 2012

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.

Jeff2159's picture
Jeff2159
Posts: 99
Joined: Feb 2012

I just asked my Oncologist about IL-2 treatment and he told me it has not shown success with sarcomatoid. He is out of city of hope. That is why I will go back on Sutent monday.Good Luck
Jeff

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

If necessary, and so long as it's possible, I'll stay with the surgical route. The only drug therapy envisaged by my team is sunitinib. Janice Dutcher told me that she would favour the earlier chemo agents in my case. Prof. Hawkins at the Christie in Manchester has said he would be prepared, in principle, to try me on HDIL2 (subject, of course, to appropriate performance and cardio screening etc., given I'd be 70+) on the basis that you never know 'til you try and we don't know anything much about response to IL2 in a metastatic, necrotic, sarcomatoid chromophobe case (not exactly thick on the ground).

It's not really an issue of who you believe. It's rather a case of how each doctor appraises the very small amount of information we have on the subject - it isn't enough so far for anyone to draw safe conclusions from the tiny corpus of data that's been accumulated.

DMike's picture
DMike
Posts: 239
Joined: Nov 2011

Interesting article on sarcomatoid RCC from a radiology perspective. There is even an interactive section to scroll through a CT scan like we've all seen. Maybe, with a few viewings,it will help me understand when my doctor scrolls though my scan.--David

http://www.radiolopolis.com/index.php/radiology-journal-radiology-case-reports-radiology-review-articles.html?id=976

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Bruce wrote:

Tue, 08/28/2012 - 12:49pm

"I had my tumor removed on 8/8/2012. It was 11x12cm in size. I was told it was a rare form of Sarcomatoid type cancer. Not sure of what's next. I see oncologist in 2 weeks."

Stick around Bruce. Hope your recovery is on course. Sarcomatoid isn't good news (me too) but we can beat the rap and beat the crap out of this cancer. Only some of us get to have sarcomatoid RCC and we need to hang out together.

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

Amen Tex,

Those of us with sarcomatoid issues need to hang-out together. I met with an oncologist for the first time yesterday. I put more details under Bruce's post. The oncologist took the time to slowly go through my pre and post op scans and explain what I was seeing. I can't believe my good fortune of finding a doctor who is so interactive.

John

David, thanks for the link to scan interpretation.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

And now we have Jeff as well things are looking up more than ever.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Bruce, maybe you could post on this thread rather than the newer, duplicate one? That way we can avoid fragmenting the topics and losing sight of all the useful info and contacts on this thread. John could have read your reply to him here just as well. Even if it takes longer to load, it keeps all the material together about this, the most slippery of RCC slopes!

I hope your oncologist has good news for you tomorrow.

Bruce1955's picture
Bruce1955
Posts: 7
Joined: Jul 2012

Apparently the oncologist at the local VA Hospital doesn't understand Sarcomatoid. He treatment options are " lets wait and see in 6 months" and do a localized CT then. I've made plans to see aa Oncologist in Richmond,Va's VA Hospital where I had my surgery done.
I'm a little frustrated, maybe because they almost wrote me off and didn't do the surgery, thinking it was so large and too advanced. But I'm not giving up.

Bruce1955's picture
Bruce1955
Posts: 7
Joined: Jul 2012

Well I finally got to see another Oncologist. My tumor was a stage 2, grade 4, completely sarcomatoid. I've been told that there will be no further surgeries should another tumor should show itself. Any further treatment will be done with chemo, etc.
The CT Scan showed that I have a cysts on my remaining kidney and one is hyperdense, but to small to biopsy.
I'm in mild kidney failure. The Dr's believe that that will get better over time. The body getting use to only one kidney now.
Another CT scan in 3 to 4 months.
Thanks for the ear.
Merry Christmas!

angec's picture
angec
Posts: 626
Joined: Mar 2012

So far so good Bruce! Sounds like you can relax a bit. Please keep us updated and enjoy the rest if the year!

angec's picture
angec
Posts: 626
Joined: Mar 2012

So far so good Bruce! Sounds like you can relax a bit. Please keep us updated and enjoy the rest if the year!

Bruce1955's picture
Bruce1955
Posts: 7
Joined: Jul 2012

Had a bone scan done before my last Oncologist visit but just got the results. I have a spot on my rib. Going for another CT and X-Ray for confirmation.
My wife is going out of her mind, cuz our daughter may have Lymphoma. Her biopsy scheduled for the 26th Dec. 10 days for confirmation.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

That's very tough luck Bruce. Praying that it turns out not to be lymphoma and that there is an easy cure for your rib met.

I am alive
Posts: 224
Joined: Jul 2012

I'm praying for your family, Bruce. Hugs to you all.

DMike's picture
DMike
Posts: 239
Joined: Nov 2011

Hi Bruce,
Just wanted you to know I'm thinking about you, your daughter and your wife and wishing you the best.
--David

Bruce1955's picture
Bruce1955
Posts: 7
Joined: Jul 2012

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!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Keep us posted Bruce, about all three of you and we'll keep praying for good outcomes for you all.

Bruce1955's picture
Bruce1955
Posts: 7
Joined: Jul 2012

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

 

 

 

 

Jeff2159's picture
Jeff2159
Posts: 99
Joined: Feb 2012

Completed my bucket list items of playing Pebble Beach and going on a 11 day cruise to the Baltic Sea but in the mean time had to stop the sutent for the second time after 23 days as it was ripping up the previous surgical site in my mouth. The skin graft from June 20 just dissolved and I have a gash in my mouth again which is painful but tolerable but makes eating food challenging. The good news is from my CT Scan from thurs and my ONC says I can stay off Sutent for as long as I need to get my mouth to heal (and as long as I continue to get good scan results). Will get the full info tomorrow but he wanted to give me the early good news. Sutent and the power of prayer have sure worked for me

Jeff

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Good for you, hanging in there Jeff and getting that second opinion. Did they tell you your eGFR measure of kidney function? You and I are in the same boat of no more surgery.

We'll both need close continuing surveillance and I suppose that goes for most on this thread.

Any news to be had from Nancy, Rae, David, John, Jeff .... ? Wishing everyone well, or, at least, better! TW

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

So far, so good here. I joined a gym and have been working on getting my stamina back. Breathing has improved. Pain has not but increasing ab strength has been good. I'm here reading and praying for all almost daily. Just have my hands full with my mom who is not expected to live much longer, though she's been proving them wrong for some time now. I think of you all often and wish everyone a blessed holiday season

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Thanks for the reassurance that you're doing well, Rae, and I hope your Mom keeps on defying the odds.

NanaLou
Posts: 69
Joined: Oct 2011

I am doing good I guess. I am waiting to get my scan on the 9th and the results on the 12th. Then we will know if the IL2 worked. It has been a long wait. I had my last treatment on 10/7/12. I am starting to get the cancer crazy's. Wondering about every little pain. Lately I have had some small pains in my back. They worry me the most. Hopefully all will be good news on the 12th. Just wish it was here. Best wishes for good health to everyone. Will let you know after the 12th.

Nancy

DMike's picture
DMike
Posts: 239
Joined: Nov 2011

I'm doing well too. I actually feel better than I have in a LONG time. I have my 2nd post-op CT scan on December 20th. I've been okay about it until recently. Now that it's December, those pre-scan jitters are creeping in.

I also have my 1st anniversary of my surgery next Thursday, December 6th. I plan to celebrate with a long bike ride.

It's really good to hear from everyone!

Take care, David

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Hi David,

If I've missed recent posts, my bad. But I've been hoping to read about your last Dr. visit. Everything okay? Any plans for next step? Anxious to hear!

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

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

djc2
Posts: 17
Joined: Nov 2011

Dear Survivors,

I am convinced all cancers, like all of us, are different and that each of our stories is unique, but the inspirational (not to mention informational) benefit we receive from sharing our experiences is indisputable. To review, I was diagnosed with a "pygmy shrew" (Thanks, Tex) of a tumor in July of 2011---1.8 CM clear cell, but grade 4 due to it being 50% sarcomatoid. Successful open partial nephrectomy on August 16, 2011 was followed by more or less three month CT scans for the last 18 months. Friday's result, like the others, showed no evidence of disease and needless to say I am feeling much relieved. We will go to six month checks from now on and the next one will be with an ultrasound since my doctor is now more concerned that the risk of overexposure to CT scans is greater than the risk of getting less than optimal information from the ultrasound. (We will go back to a CT scan in a year.) I know most of you with sarcomatoid de-differentiation have a higher stage than I did on initial diagnosis, but I think it is still encouraging that, in this case, a tumor with 50% sarcomatoid features has not resulted in any spread or re-occurance for 18 months. Perhaps sarcomatoid de-differentiation is more associative than causal in understanding spread or reoccurance, like having red hair, instead of brown, and should not be as alarming a characteristic as most think.  In any case, I just wanted to add my unusual experience to the wealth of information you all have provided here and to thank everyone for your inspiration and information.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

That's a great share and good news for anyone familiar with sarcomatoid to any degree. Really happy for you.  We never  get enough of this good news stuff!!!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Some more good news stuff.   You may think it's not, because the figures may look depressing, but I'll deal with that preception in a moment.  The good news is that it has been thought, until very recently, that having sRCC is unalloyed bad news, with a dismal prognosis and no treatment likely to be of much use, other than the old, untargeted cytotoxics, with their nasty cardiac and other SEs.  

This paper (link to the Abstract is below) shows that even the oldset TKI (Nexavar - sorafenib) improves the prognosis for sRCC  and both Sutent (sunitinib) and Votrient (pazopanib) look like doing the same and probably appreciably better, especially when the dosage level, titration, cycle length and chronology of administration are further fine-tuned.

I expected (and, of course, hoped for) this finding.  The hypothesis favouring the old chemos was that they attack rapidly proliferating cells and sRCC histology is one in which the aggression involves a high mitotic rate.  However, that histology also features a need for rapid angiogenesis to feed the tumor.  The aggression of sRCC is so great that the cell multiplication outstrips the angiogenesis it needs so that the centre of the tumor becomes necrotic (that is, it dies) but the outside, close to the developing blood supply, continues to thrive.  By attacking the source of blood supply to the tumor, those new targeted therapies that are designed to halt angiogenesis will hit that thriving peripheral part of the tumor so that, with luck the entire tumor will be killed off.  The early signs are that this is happening.

Outcomes of patients with sarcomatoid renal cell carcinoma: The Mayo Clinic experience.

http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=134&abstractID=106327

For those who can only see the less attractive figures quoted, I'd say that if you've done any investigation into sRCC, which you probably have, you'd already be familiar with the unattractive prognosis anyway.   So, the newly recognised discovery of the effectiveness of the TKIs should come as good news. 

Add to this people like John who is doing very well on Votrient + nivolumab and others who are faring similarly on Sutent + nivolumab and it looks better still.  Then consider ground-breakers like Nancy for whom HD IL2 is yielding good results and the news is better yet.

Above all, keep constantly in mind the recognition that all of the studies, even the most recent, are based on historic data and remember that great manifesto statement of Donna Lee's (can't believe Donna has joined those of us in our 8th decade!) - which rings forever in my ears:

"When you get into Statistics, remember we are the crew that is changing those numbers-by days, months and years-so think positively. And there are so many more options available today that weren't even in trials 6 years ago."

 

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

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...

Yodaradman
Posts: 8
Joined: Mar 2013

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.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

 

Yodaradman
Posts: 8
Joined: Mar 2013

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).

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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:

http://www.cancer.org/cancer/kidneycancer/overviewguide/kidney-cancer--adult--renal-cell-carcinoma-overview-what-is-kidney-cancer

 

Yodaradman
Posts: 8
Joined: Mar 2013

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

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

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,

Mikeyswife
Posts: 31
Joined: Mar 2013

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!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

I too am sarcomitoid....our jobs are to prove that the statistics are wrong.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Right on brother, let's kick them figures into the long grass!

Yodaradman
Posts: 8
Joined: Mar 2013

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.

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Good luck with the continuing treatment and do stay in touch annd keep us posted on how you're getting on.

NanoSecond's picture
NanoSecond
Posts: 562
Joined: Oct 2012

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.

Yodaradman
Posts: 8
Joined: Mar 2013

Nothing additional as of yet.

Yodaradman
Posts: 8
Joined: Mar 2013

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?

NanoSecond's picture
NanoSecond
Posts: 562
Joined: Oct 2012

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"

http://www.nytimes.com/2012/12/23/health/new-drugs-aim-to-make-cells-destroy-cancer.html?pagewanted=all&_r=0

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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