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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

I hope your oncologist can keep up with Neil, but I doubt it!

I didn't want to put you off what your experts wre proposing but I decided about a year ago that I wouldn't consider the old chemo combo for myself.  I'm sorry it hasn't worked for you but there are many potentially much better choices.  At stage 4 grade 4 and mostly sarcomatoid I'm doing pretty well on Votrient and I'd suggest that you at least ask about it for yourself.

The other suggestion I have is that if you're not already taking a supplement of curcumin/turmeric you should do so.  This ties in with the line of argument Neil is putting about P53 which has been a hot topic for quite a few years and remains so.  The information Neil has provided about possible combos of Kevetrin with the likes of Votrient is very exciting - so much is happening - keep those spirits up and stay in touch here to compare notes.  Maybe you could send Neil's material to your Onc in advance to give him a chance to think about it - otherwise he may die of an overdose if you drop it allon him without warning.  Smile

NanoSecond's picture
NanoSecond
Posts: 547
Joined: Oct 2012

Just to follow up on Tex's suggestion about Turmeric/Curcumin (which I heartily endorse).  If you are open to this line of attack then I would also add Resveratrol to the mix.  Recent studies suggest that Resveratrol and Curcumin work together synergystically.  That is, they work far more effectively taken together than each taken alone.

This is not the forum to get into the basic research, but just as a point of reference, in the index of the latest Proceedings of the AACR (American Association for Cancer Research) there were 16 papers presented on research about Resveratrol.  There were 11 papers dealing with Curcumin.

Cancer is a metabolic disease. In particular, RCC is a metabolic disease. It is for this reason that proper nutrition and dietary factors can play a crucial supporting role alongside the various targeted drug and immunotherapies currently avialable.

I attempt to explain how all this works in my guide.

 

texMD
Posts: 13
Joined: Jun 2013

I've been lurking on this thread for a few days thought I would go ahead and post our rather unusual situation.  My wife is a 31 y/o who presented with incidental radiographic findings revealing a kidney mass with associated lymphadenopathy.  Subsequently she did become overtly symptomatic with isolated episodes of gross hematuria--like the day after finding out about the diagnosis!  Fast forward the mad rush with getting in promptly to see the urologist and the post-op hospitalization... Now, we're about two weeks out from the open radical nephrectomy, adrenalectomy, and extensive lymph node dissection.  Given her age and gender, I was thinking there was a strong possibility this could be transolocation RCC but the pathology came back showing a 9.5 x 7.4 x 4.0 cm clear cell tumor with unfortunately 30-40% sarcomatoid component and 4/17 positive lymph nodes.  She is T3aN1aMX.  I'm a physician myself and was glued to PubMed so I immediately knew this was not the news we were looking for.  But it's so nice to see so many sRCC survivors kicking it around on the website!  I'm posting with a few questions but really, it's a form of a therapy for me, giving me some semblence of control.

My questions:

1. Obviously her age makes this highly unusual.  Anyone on the forums this young?

2. Our plan is to defer seeing medical onc if and until there is evidence of recurrence, for which she will be monitored at regular intervals.  I think CT is the imaging modality of choice but I may fight to get MRI given the cumulative radiation exposure risk vis-a-vis her age.  Anyone use MRI for interval imaging?

3. Any thoughts/advice on living with one kidney and one adrenal gland, and general thoughts on the recovery process would be appreciated...

Any other general advice or support would be great.  Good luck to all.

 

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

Hi, tex and welcome to this support network, the value of which you probably already appreciate.   Re your questions:

 

1.  Your Wife is young to have this disease, being about half the age of the typical patient.  However, there are plenty of still younger members here, of both genders.  You may have been enquiring more narrowly - about age relative to a significant sRCC component.  Again, she is unusual but far from unique.  With improvements in the number and quality if imaging modalities,  more and more cases are being identified and at a younger age - at a younger age because it is an indolent malady which in the past was often identified only when symptoms presented, which generally meant in an older patient.  Now, with the greater availability and use of imaging technologies, there are more incidental  findings when scanning for some wholly unrelated issue not limited to the older patient.  So, the larger number of younger patients is principally an artefact of the advance in technology.  Consequently, your Wife will be less unusual in the future.

2.   Lots of patients can't have MRIs due to pace-makers or other (metal) issues and are monitored with US or CT or PET.   Similarly, there are many who have to use other methods rather than CT, often due to adverse reaction to the contrast dye or, like your Wife, because they are young and will require a lot of imaging in years to come.   It's only due to her youth that the radiation becomes an issue - for most of us, the real danger is much greater from the contrast dye than it is from the small doses of radiation emitted by the latest hybrid PET/CT machines.   Some, but a smaller number of folks have a bad reaction to the gadolinium-based dye used for MRIs than the iodine-based for CT scanning.  Her docs may even suggest ringing the changes among the scanning methods, to minimise exposure to the hazards each brings.

3.  In general, the advice for sole kidney owners is no different from that for the rest of the population - just a good healthy lifestyle re diet, exewrcise etc.  Just be a bit more careful since you no longer have a 'spare'.

I hope these observations will be helpful and I wish both of you well.

 

NanoSecond's picture
NanoSecond
Posts: 547
Joined: Oct 2012

Hi TexMD,

Our other "Tex" has already given you some excellent advice.  However, based on your wife's prognosis I would opt for CT-scans (only) during the next year - having one every 3 or 4 months max.  If everything still remains clear after one year (or two) then I would consider the alternatives.  In particular I would also advise your wife to be on the lookout for any unusual pains - no matter how minor.  They may signal bone mets.  I ignored an "occasional" pain in my left thigh (consistantly - but incorrectly - diagnosed as "bursitis") for over a year before discovering that it actually was due to bone mets.

I also am a bit more "pro-active" about diet and nutrition now that I have entered stage IV.  This is because I view cancer (and RCC in particular) as primarily a metabolic disease.  I have done quite a lot of research on this topic. As such I have prepared a "guide" to what I call a "proper" diet and nutrition for cancer patients. It is based on the very latest scientific research and my own clinical trial of "n=1". (Note that Dr. Siddhartha Mukherjee, the author of "The Emporer of All Maladies", feels that Immunotherapies and Metabolic approachs to treating cancer will be the two most promising areas of cancer research and breakthroughs in the coming years.)

I am happy to share this document (56 page .pdf file) with you (or anyone) interested.  Even if you do not wish to alter your diet you may find it very helpful.  Send me an email at: n.feldman@videopost.com so I can attach a copy to you in response.

Best wishes,

 

-NanoSecond (Neil)

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

I'm reminded by Neil's post of something else I meant to say.  I have a much higher % of sarcomatoid than your Wife has, but I'm having CT scans with contrast every twelve weeks.  However, I'm 70 and she's 31.  More frequent check-ups are essential with sRCC, especially over clear cell, since it's particularly aggressive (I have sRCC over chromophobe).  It's all too easy to miss a recurrence until it's become all too obvious.

I had a nephrectomy that got all that was visible of a 9 cm. tumor (your Wife's was also a large one) but I had a recurrence and another op only 4 months later.  Then I had a further recurrence which grew in volume by a factor of ten in 23 days - sRCC has to be watched closely!

 

BDS's picture
BDS
Posts: 101
Joined: Aug 2012

First of all, I have to admit that I feel a little uncomfortable giving advice to a physician. But.. Hi, I am 53 years old and have Stage 4 Rcc with 5% sarcomatoid  - granted it a low percentage but the lower the better! And having sarcomatoid features still scares the hell out of me. I go to Fox Chase Cancer center in Philadelphia and get scanned every four months with a MRI or the abdomen and pelvis and a CT of the Chest WITHOUT contrast. I am also getting a once a year MRI of the head (So far they have found nothing in my head but my wife has been me that for years!Laughing). I would highly recommend that you at least consult with an oncologist. Do not leave this to the care of your urologist! The reason I am in this mess is because of my urologist. RCC is nothing to mess with, I consider it the terminator of cancers it always says”I‘ll be back!” Being a physician yourself you should have no problem getting/demanding MRI’s for your wife - avoid CT’s as much as possible. But as a physician you should know that first place that metastatic RCC tends to grow is in the lungs. So getting a CT or your wife’s lungs is worth the risk.

 As far as living with one kidney my doctors have told me get lots of exercise (Keep your weight down. So if your wife is not a gym rat tell her to become one) RCC tends to but not always is associated with high blood pressure. Make sure your wife’s BP is maintained at a normal level. Drink plenty/Lots of water and eat a healthy low sodium diet. You will find that a low sodium diet is the hardest thing to achieve because there is salt in everything. I now look at the sodium levels of everything I buy. Because you know having one kidney means that remaining kidney now has to work harder than ever and last a life time or at least until they can 3D print a new one.  I hope my “advice” was helpful. - BDS

http://www.ted.com/talks/anthony_atala_printing_a_human_kidney.html

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

TexMD,

Welcome to the group.  I, like texas-wedge, had "sRCC over chromophobe" that was about 5 to 10 percent sarcomotoid of my 17.5 cm tumor (t2bM0Nx).  I had a right radical with open incision about two years ago at age 58.  For the first year following surgery I was followed by the urologist who ordered MRI's of the abdomen and pelvis and a chest x-ray every six months fearing the radiation risk of CTs.  I was concerned about whether the typical chest x-ray would effectively find mets in the lungs so my GP referred me to an oncologist who ordered a chest CT as a baseline study.  I decided to be followed by the oncologist after that since I figured any mets would likely be in areas other than the urologic system.  The oncologist is more comfortable with CT's, however, and has ordered abdominal and pelvis CTs with contrast and barium and a chest x-ray for my next set of scans next month.  Although I am concerned about the radiation, I have to hope that the benefits outweight the radiation risks and trust my doctor above any partial information or hunches that I may have.  I wish you and your wife much success in her treatment.

John

I am alive
Posts: 223
Joined: Jul 2012

I second the advice to get an oncologist on board, especially given the potentially aggressive nature of sarcamatoid. And not just any oncologist. Your wife needs to connect with an RCC specialist. So many general oncologists are not familiar with the tricky ins and outs of kidney cancer, or the latest thinking on the drugs used to fight it. Do you live in Texas? There's a world class cancer center in Houston, M.D.Anderson, with, I believe, an internationally known Dr. Tannir who heads up  RCC efforts there. You need to go to a place like that. If you live elsewhere people on this forum and another - SmartPatients.com - caN recommend other doctors and cancer centers.

I also second the advice above to get scans every 3-4 months. I had followup with the urologist who performed my nephrectomy, with chest X-rays and MRIs of the abdomen and pelvis every 6 months until a metastasis appeared, then switched to an RCC specialist who ordered CT with contrast every 3-4 months. The specialist preferred  CTs over MRIs b/c he said they are better for soft tissue. When I asked about radiation concerns he said the kidney cancer was a bigger concern. I regret not going to a specialist sooner. He probably would have caught my metastasis earlier.

I'm so sorry you and your wife have to go through this. i will keep you in my prayers.

texMD
Posts: 13
Joined: Jun 2013

Thank you all so much for your help and advice.  I will keep you updated and share any new info I come across.

 

Yodaradman
Posts: 8
Joined: Mar 2013

Had more scans yesterday, and tumors continue to grow (>30%) change in most.  So Oncologist is discontinuing Temsirolimus and moving onto Sutent starting Monday (have to wait on a special pharmacy to get them).  Feeling kinda down today.  Still no pain, but fatigue is more of a factor lately.

Yodaradman
Posts: 8
Joined: Mar 2013

Had more scans yesterday, and tumors continue to grow (>30%) change in most.  So Oncologist is discontinuing Temsirolimus and moving onto Sutent starting Monday (have to wait on a special pharmacy to get them).  Feeling kinda down today.  Still no pain, but fatigue is more of a factor lately.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

I don't have much experience in this area, but I am a pretty fair cheerleader!  I  know I hear lots of people here talking about the virtues and the positive results on Sutent!  I'm hoping that it will make a sizable difference in your treatment!

Be tough!  You are stronger than this invader.  Keep kicking!

 

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

Yodaradman,

I'm just now reading your posts and have a  couple of thoughts. One, have you obtained copies of your pathology and scan reports to have on hand for further consultation? If not, ask for them. It's important for you to have and for anyone you consult in the future.

 

Also, has your doctor mentioned the possibility of trials? My husband, one putt, is currently on the Votrient/Nivolumab trial and has been on it for 15+ months. There also is a Nivolumab/Sutent arm and a Nivolumab/Ipilimumab arm. One putt (John) has done well with a 58% tumor reduction over the 15 months.

 

It's certainly understandable that you are down, but cancer thrives on negativity. Don't stay in that place. Pick yourself up and replace those down thoughts with determination to WIN this fight. Many on this board have had difficult diagnoses but are still here cheering on others and doing well. You can too. Make yourself your biggest advocate and arm yourself with  knowledge/power. You don't drown falling in a river; you drown when you remain there.  

Come here to vent, cry, scream, or just to talk. Hearts, ears, ahoulders abound here. . .

djc2
Posts: 17
Joined: Nov 2011

With a 1.8 cm clear cell carcinoma that was 50% sarcomatoid (stage 1a; grade 4) successfully removed two years ago, no one was sure what to expect.  Having just returned from my two year follow up I feel lucky and blessed to report there is still no sign of metastasis or reoccurance. I know many on this thread have not been this fortunate, but I know you well enough to realize you will still celebrate my good fortune with me.  I hope my experience to date can offer some evidence of success against sarcomatoid de-differentiation that can inspire you, as you have inspired me and others with your courage, strength and generosity.

 

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

Thanks for the update, for all of the reasons you've given! 

Maybe removal of that 'pygmy shrew' of a tumor did the job completely - it's what we hoped for (and what I had expected, based on the research literature).

You were right, of course, in thinking that everyone here will join you in celebrating your good fortune - a win for one is a win for all.  And, yes, it brings the odd shaft of light through the gloom for those of us at the worse end of sarcomatoid de-differentiation, where hope is in short supply.

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

I love to come on this board and see good news and, today, you provided it. Congratulations.  Glad you shared; it's made my heart a bit lighter.

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

It is extremely rare to have a tumor so small have the S de-differentiation and having it found so early is like winning the lottery.

texMD
Posts: 13
Joined: Jun 2013

Hi All,

Wanted to update you all on my wife's case and also shed some light on treatment options we recieved from a well regarded and large academic university-based cancer center.  

Unfortunately, since her surgery my wife developed lung mets as well as an enlarged supraclavicular node that was subsequently biopsied and consistent with RCC. Normal bone and brain scan.

Blessed again to meet with world renowned oncologist specializing in RCC this morning.  To summarize, we were offered an ongoing clnical trial comparing votrient to torisel for first-line treatment in poor-risk patients.  I was a bit hung up on how risk-stratification is actually done, ie, why she is "poor risk", and truth be told, there is no absolutely clear consenus.  (See: http://www.medscape.org/viewarticle/736621_transcript.  This is a CME event that shows why sometimes oncologists can come with valid although different treatments). Based on pure histologic features and lab markers my wife is probably poor risk based on the fact the tumor recurred within 6 weeks from post-surgery NED, elevated platelets, and a slightly elevated white count.  By the MSKCC criteria, which is what seems to be most commonly used, she is between 2-3 (anemic, normal calcium and LDH).  Her overall ECOG status is probably 1.  From my understanding, Torisel is considered first line therapy for poor-risk patients based on a retrospective analysis of patients in a trial comparing torisel against interferon alpha.  I do not know of data looking specifically at low-risk patients who took votrient.  And there is no clear answer on votrient vs torisel in poor risk patients, thus the need for the clinical trial...

We waffled back and forth, but ultimately we decided to go off-protocol and choose votrient.  However, our decision should not really be construed as a medical precedent that can be applied to others.  Ultimately the decision had mostly to do with the fact that we wanted pills and not a weekly infusion.  That and I have a hunch that votrient will have better results; certainly, the fact that torisel was found to be inferior to sorafenib as second-line therapy did not really raise my confidence in trying torisel.  There certainly is a benefit of the extra attention of a clinical trial that we are foregoing.  In any case, we'll see how it goes with votrient--it seems like several folks on this discussion board have done quite well.  

Other nuggets from the appt: I thought IL-2 may be an option given my wife's age (41) and no comorbidities to go chase--admittedly low--of durable cure.  But given the sarcomatoid features he stated this was exceedingly unlikely and the toxities may in fact preclude further treatments down the road.  It's very clear that the likliehood of durable cure from any of the mTOR or anti-VEGF medications is extremely low and that most GU oncologists are using these classes of drugs to buy time until the immunomodulators are ready for prime time, ie, anti-PD1.

I'm trying to read the boards to find some pearls on how to handle votrient side-effects.  If anyone has any wisdom to share, do let us know.

The best to everyone.

NanaLou
Posts: 69
Joined: Oct 2011

I am updating this thread. One to give new comers hope who have sarcomatoid features. Two because Tex ask me to several months back. below is my story.

 

Nephrectomy November 18,2011
11 Cm , 95% sarcomatoid, T2b, staging III (The majority of the primary renal cell carcinoma and the metastases have rhabdoid features, although focally the primary carcinoma has conventional clear cell features.)
reoccurence January 21,2012 several lymph nodes
shurnk 50% April 6,2012

stable July 2012

First rounds of HDIL2 September/October 2012

December 2012 very small shrinkage.

Second rounds of HDIL2 January 2013.

April 2013 only two spots remain both 8mm. (Not even big enough to be considered cancer)

April 2013 Third and final rounds of HDIL2.

July scans show no changes. Oncologist says I have a complete response.

October scans stable one spot may have deminished a little. No significant interval change when compared to prior study. No finding to suggest malignancy.

I get to wait until February to have more scans. Hopefully we keep going in this direction and stay stable.

Good Helth to all,

NanaLou

 

NanoSecond's picture
NanoSecond
Posts: 547
Joined: Oct 2012

I must say it is extremely impressive to read just how well you have responded to HD IL-2 - considering that most non-clear cell pathologies generally do not respond to it at all.

Have you been doing anything else to help insure such a marvelous outcome?

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Impressive indeed..!!

Ron

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

to join you Nana. I could never have tolerated that many treatments. Mentally yes. But my poor body was saying, "Absolutely not!" It is very exciting to read your post.

Jeff2159's picture
Jeff2159
Posts: 96
Joined: Feb 2012

I look back and last year at this time I was finishing my second week of radiation and chemo for my mouth cancer not realizing that for how crappy I was feeling, it was only going to get worse. July I started to feel human and I got off the feeding tube in Sept. I still cannot eat normal as I have to puree all foods and be careful when I drink liquids as swallowing is a problem due to effects of radiation and surgery. It has gotten better but pills are still a problem and that is why I have started avastin every 2 weeks rather than sutent. March 7,2011 left kidney/lymph node removed, sarcomatoid element 55% and at the end of April metasis of lung, buckshot pattern. 2 rounds of sutent 23 days each wiped most of the nodules away. Well the last 2 scans have shown a couple of the buggars starting to grow so Avastin was prescribed since I can't get sutent down at this time. No side effects with the Avastin but will find out first week of Jan with scans to see if it helps or not. Last 2 years these two cancers have taken turns trying to knock me down but all they have done is get me into fighting shape. Initially lost 115 lbs. but have gained 30 back and feel great. Only things I miss is a good steak and a glass of wine or beer. I had a small sip of red wine and it felt like acid as it burned my mouth and the taste was so concentrated. My taste buds are off the chart surprisingly, most others lose their taste. Also carbonated beverages burn my mouth too. Its like I have a babys mouth. In a ways I do as I have eaten gerbers meat jars as well as their oatmeal. Gotta do what you have to do. Everyone have a Merry Christmas and hope 2014 is better for all

Jeff

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