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Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Hi Everyone,

I haven't been on the boards in a while (shame on me).  It's been a tumultuous year.  Diagnosed in Nov 2013 with RCC in left kidney, I had a left kidney nefrectomy in Dec 2013 with 10 surrounding nodes removed.  CT/MRI every 3 months since.  My wife's father sadly passed of esophogeal cancer August 17, 2014.  We then had our first baby, Alexander, Oct 2nd.  Just two days shy of our first wedding anniversary.  Over the summer of 2014 some micronodules were discovered in the regular CT/MRI.  We tracked it over the next three months and continued to see growth, very small, but growth.  The largest of the micronodules hit 15mm.  We did a lung biopsy last week, suffered a lung collapse, and just had our biopsy results provided to us yesterday.

It is confirmed the grade 4 cancer has spread to the lungs.  My oncologist is in Northwestern Memorial Hospital in Chicago.  She will have me on Everolimus and says I will be on it indefinitely.  That last word struck me down like a hammer.  I'm 36, previously healthy, 205lbs <10% body fat, 5'11".  I eat organic and knowledgeable about nutrition.  Heart rate low from running distances and an avid weightlifter.  I guess what I'm saying is, my family was dumbstruck with the series of events which has led me now to be held to "indefinite" use of chemotherapy.  

That's my backstory and I am currently pretty raw.  Dealing with perceptions of how long I have to live, what will happen to my family, what will treatment feel like.  My doctor says I should feel 85% like myself on Everolimus but we will take it one step at a time.  I am curious what others have heard as to the drug of choice recommended for someone in my similar condition.  Some of you have said you have a 'wonder drug' of choice and I was curious what that might be as we look to source second opinions.

Thank you for your time and consideration.

Best,

Joe

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

Joe. I am sure that this has all come as a shock to you.  But hang in there.

How large was your primary tumor?  What was its histology (i.e. clear cell; papillary; chromophobe; etc.)?

Is your oncologist experienced with metastatic renal cancer?  I ask because Everolimus is not usually suggested first line therapy.  I would have thought he might first want you to try Votrient or Sutent instead.

Have you considered getting a second opinion?

Best wishes,

 

-Neil

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Hi Neil,

The surgeons removed the left kidney with sizeable 10.4cm growth and 10 lymph nodes via open radical nephrectomy on December 4, 2013. The cancer cells were clear cell deemed grade 4, stage 2B (T2,N0), encapsulated in the kidney.

We are unsure if our oncologist is experienced in metastic renal cancer.  She wanted to be aggressive and changed the assignment from Sutent to Everolimus given a stain test on the biopsy from the lungs.  We are looking at getting a second opinion and tomorrow will call Memorial Sloan Kettering in NY for a consultation.

You've got us thinking about our current prescription, which we appreciate.  Thank you.

Joe

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Neil,

Thanks again for the recommendation to look for an oncologist with metastic renal cancer experience as well as the need for second opinions.  I have scheduled an appointment next week at Memorial Sloane Kettering with a doctor with that exact specialty.  Getting all of my results mailed to them immediately for the consultation.  We feel much better getting another informed opinion.  Thanks for that direction.

Joe

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

You are most welcome, Joe.

Ironically, I too went to Memorial Sloane Kettering for a second opinion several years ago.  I met with Dr. Voss.  He was extremely competent and helpful at the time.

Best wishes,

 

-Neil

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

That is wonderful to hear!  We meet with Dr Voss on Friday.  My wife will be so pleased to hear a review like this.  Thank you.

jason.2835
Posts: 337
Joined: Nov 2014

Joe,

There's just no easy way to look at it.  It's nonsense.  I'm 35 myself and while I certainly haven't always lived like my body was a temple, I also haven't been more than 20-25 lbs overweight at any point.  Relatively active, healthy and normal 35 year old and suddenly Xxx BAM xxX your whole world is turned upside down.

In my case, my tumor was caught early, was only 2.8 cm and grade 2 so I am in a perpetual holding pattern which I hope to be in for 50 years.  I don't have a ton of advice when it comes to the drugs.  However, in second opinions and such, I have a VERY strong opinion that you should talk to doctors until YOU and your family feel comfortable about the course of action beng presented.  Your lung collapsed after the biopsy?  That would likely set you off of surgery as an option but has it been presented/or is it an option in your case at all?  I guess that as it has already metastasized the main thing is destroying as many cells both in the nodules and the bloodstream as possible.  

Hang in there, man.  Remember that kidney cancer research has come a LONG way in just 10 years; imagine what will be out there in 5 years.  More technology, more options.  Keep fighting and a final answer may come along for all of us.

Best wishes. 

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Thanks Jason.  Really appreciate the motivating words.  Our first 24 hours since diagnosis were the worst.  We're far more forward thinking now and things are in motion.  Really behind the second opinion thing, especially after being asked if my oncologist specialized in metastic renal cell.  We had no idea that was even a thing to specialize in!  Really opened our eyes early to be assertive in how our treatment goes.  Thank you all!

Joe

thaxter's picture
thaxter
Posts: 124
Joined: Jan 2014

My story is similar. I was stage 4 after my Sept 2013 nephrectomy since they found a secondary tumor on my adrenal gland. January 2014 they found several lung mets. Since I was relatively healthy at age 64 I was a good candidate for IL-2 which I underwent last Spring and Summer but this Fall more growth was discovered so I am now on Votrient. It sounds like you are healthy enough for IL-2 which gives long term durable response about ten percent of the time and partial response about 20 percent. Not every hospital does this treatment but even though I was not one of the lucky ones I am glad I took a shot. Don't know much about Everolimus but Votrient and Sutent are no picnic. I am glad to have been able to work part time in Nov-Dec and to have retired last week

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Hi Thaxter,

I will take that IL-2 into conversation with our oncologist and second opinion.  Thank you. I'm not familar with the "long term durable response" measures but will educate myself further.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hey Joe....so sorry that you had reason to come back here. Not nice news for you at this time in your life. I can't offer much information, but I wanted to let you know that I am thinking about you and hoping you find the right medication to help you.

Hugs

Jojo

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Thanks Jojo!  Appreciate the welcome and thoughts.  Hope you are well.

Joe

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Joe, I don't have any advice on the drug therapy, but your story is very moving.  You have had a lot of good and bad things happen to you in the space of one year.  I tend to always think on the bright side, and I look at your situation this way-- your body is in outstanding condition, and this should help you weather what you have ahead of you.  That may be a small consolation, but keep your mental and physical energy up.  I am sure you heard about the passing of Stuart Scott this week--one thing that was very admirable and motivational about his situation is he never stopped living his life to the fullest, and he kept going with positive thoughts and exercise.

My sitation pales in comparison to yours.  I was diagnosed in April with a small tumor that was removed in July, which was found to be stage 1 with no margins.  Lucky me-for now. Coincidentally, I lost a good friend last year to esophogeal cancer at the age of 43.  He had been diagnosed 3 years earlier with only 2-4 months to live, and he put up a valiant fight and lived life to the end.  2014 was a strange year with my diagnosis, my friend's passing and my business office being destroyed by a huge fire in our building.  At 47, I had been living a charmed life, with not so much as a ripple, and I hit choppy waters.  Hopefully, your drug therapy is successful and you will be able to help others on here for many more years.  Good luck.

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Thank you very much for sharing your experience and kind thoughts of motivation.  I would say there is no better situation because, as your name states, it is mental.  Having the right frame of mind can make you a depressed/unhappy stage 1 or a vivacious/outgoing stage 4.  Everyone has had a year they've looked back at and said, "where did it go?"  Some people have had decades like that.  If you can make every day seem like a memorable year, an additional 6 months, 1 year, 5 years can satisfy a lifetime of happiness.  Keep your chin at 90degrees as you have been doing and your life will remain as charmed as it always has been.  Maybe even more so.  Take care!

APny's picture
APny
Posts: 1998
Joined: Mar 2014

Keeping you and your family in my thoughts and prayers. As others have said, the fact that you’re young, fit and in good physical shape will definitely be a huge asset in your treatment and recovery. Sloan Kettering a wonderful hospital with a great staff. That is where I had my surgery. If you can opt to be treated there that would be great. I can’t say enough good things about it. Wishing you the very best.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

I second what APny said about Sloan Kettering.  The first urologist who looked at my scans said I would likely have to get a radical nephrectomy.  From the moment I called to get my appointment at Sloan Kettering on May 1 today, they have been nothing but a first class organization to work with.  Caring, competent, and compassionate.    One thing I should add is that be careful about taking too much of what you read on the internet as correct.  I remember a day or two before my surgery reading people's accounts of the problems they had after their surgeries, and I was in tears and fearful.  My experience with the surgery was very positive and relatively easy, but I consider myself lucky. Hoping it works out for the best for you.

Darron's picture
Darron
Posts: 310
Joined: Jun 2013

glad you are getting a 2nd opinion.

I have been stage 4 since October 2012 and completely understand how you feel. I am 45 with two kids. IL-2, Sutent, votrient, and many triala are out there that are much better options. Read my bio. 2nd opinions are great and there are many drug options oit there.

Durable response means you shrank your tumor and don't have to take medication anymore for the tumor to stay that size. often, IL-2 is termed a partial response because the tumors don't disappear, but they don't grow. So that would be a partial, yet durable response. A complete durable response means you are in remission. Another term you will hear is NED or "No Evidence of (radiological) Disease. This meana you can't see the tumor on a scan. These are both the terms you want to hear! 

As you read up on trials an effectiveness of medications you will hear those terms a lot.

Your fight is just starting, focus on the battle, not what you think will be the end if the battle. 

I am currently NED, but not comfortable that the response is durable, so I continue treatment. I too was frustrated with the thought of being on meds "forever", but once you have lived normally on meds, you realize it is OK. I may go off drugs and be fine, but no yet..

Good luck and keep us posted.

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hey Joe,

I am so sorry to see you back on here and to read your news, but you are right on the mark when you talk about coming at this with the right frame of mind. Staying positive no matter what you are hit with makes all the difference. As others have said you are young and strong, add to that a good dedicated doctor and the right treatment you can beat this. 

You probably don't recall but I became stage four around the time you joined, so I understand how hard it is to come to terms with such a bomb shell. I was placed on Votrient March 2014, according to my last scan in December the tumours in my kidney, lung Mets and lymph have stabilised. We are now looking for shrinkage, I am so looking forward to hearing that word. 

I hope your appointment went well yesterday with Dr Voss, I am sure he will come up with a good plan of action for you. We are all thinking of you and wishing you the best:)

 

Djinnie x

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Hi, my story seems very similar to yours. My tumor was 10 cm,clear cell and confined to kidney, i was 35 at the time of diagnosis. We got it five months ago so I really don't know what future holds for me!! I don't know about the drugs but I just wanted to tell you, you and your family are in my thoughts and prayers.

Boleyn-Fitz
Posts: 12
Joined: Oct 2013

My only suggestion would be to get a genetic test. When kidney cancer happens early and to someone who is otherwise healthy, I would be suspicious of a genetic cause. Since you also had a lung collapse, I would be suspicious of Birt-Hogg-Dube syndrom, since it causes both. It caused my kidney cancer and has given my brother several lung collapses. The good news is that if it is BHD, affinator/everollimus is the drug that you should start off with.

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

I'll ask about the Birt-Hogg-Dube syndrome question.  Thanks for the insight!

Joe

myoung790
Posts: 75
Joined: Sep 2014

Nothing else to really add here.  Hopefully you get a good plan moving forward that you are comfortable with.

I was diagnosed early at age 40.  I was a division 1 collegiate lacrosse player and in great shape.  Makes absolutely no sense.  

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Yes, it is hard to find a reason behind all of this.  We are very active with our nutrition, but aggressively reviewing our contaminants and intake levels.  Staying active is also a key to keep a positive mental attitude.  My brother played lacrosse at Syracuse but is a a few years younger. :) Good luck to you!  

mrou50
Posts: 389
Joined: Mar 2013

Joe sorry to hear about your situation it sounds like you and your wife are attacking this with careful thought, good for you.  I am facing something similar I went from one nodule to six in three months, my oncologist is having a biopsy ordered next week but he and his partners are very sure that it is Metatastic.  He did tell me that I am an excellent candidate for IL-2 and he had me research it with my wife.  He did say I would not be able to teach anymore the rest of this year if I do it now, however he said I could do the Votrient or Sutent and still teach, teaching means a great deal to me and I don't want to upset my students. By summer time I would begin the IL-2 treatment which he said is very intense.  Regardless of what you do stay strong and positive and stay in touch, we can compare notes as we go through this.

 

Mark

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Hugs to you and yours, Joe! Glad you came back here. If you want us to, we'll walk along this journey along side you!

Sorry for all you have been going through..but as you can appreciate, there is a silver lining, sometimes. Not all have been revealed. But I am happy you have a little guy to keep you focused and motivated!! Nothing like a baby's love!!!

And I am sure this brought you only closer to your wife. My hope is that you share whatever may be bothering you, with your wife, if you choose. She, along with us, can take some of that burden off your precious heart. Let us...

Keep in touch. I will be cheering you forward!!

Warmly, Jan

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Thank you Jan for your kind words.  My wife and I are learning to do what some of you have learned to do over the years and take in every day as a win.  

Joe

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Hi Mark,

Sorry to hear of another member in this same situation.  We have been looking at IL-2, just based on curiosity, but wil know more about our options after our consultation next Friday.  May I ask what your doctor said were the reasons you were a good candidate for IL-2?

 

Joe

mrou50
Posts: 389
Joined: Mar 2013

He said primarily my age, IL-2 is very intensive he said and the younger and stronger a person is the more they can tolerate it.  He said he very seldom has he seen an older person (and I am taking his word on this) do all of the treatments because it is so invasive.

 

Mark

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Now the old ball game changes. I have had the 2 best treatments so far. First I was a part of the study using nivolumab.(it was called MDX-1106 at the time. It was easy and nearly cured me. From more than 20 mets to a "few". I say look for any clinical trial with this drug. They are using this in combination with other drugs. The important thing is that for many of the clinical trial drugs, one has to have not recieved any other treatments besides surgery. If you tried votrient even for 1 day, then you lose eligibility for most trials. Keep that in mind.

After a great 18 months, I got bumped from the study due to some minor growth. Then it was off to Il-2. I jumped at the chance. It is the most difficult thing to ever do in this lifetime. It was for me anyway. I tried to keep regular posts describing the treatments. Look back to my posts around  July and october 2013.  It may offer some insight.

mrou, I think you meant "intensive" not invasive.  But thats just me. For 5 days of no eating, not sleeping, constant diarrhea,  and vomiting or dry heaving. There is more. But I would encourage attempts with other drugs or a clinical trial drug before trying Il-2. Try Il-2 after everything else has failed.

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Thank you foxhd!  My wife and I find your responses filled with hope.  I will look into nivolumab with Dr Voss this week.  I'll take a look at your previous posts to gain more intelligence on the experience of IL-2 as well.  Appreciate your direction for IL-2 as a later option.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

My doctor recommended it on the grounds of my youth (52) and the stage of my cancer when diagnozed - I scored 4 in all the columns. It was, he said , the only chance for a cure. The first treatment went well and halved my tumours. The second treatment didnt go so well. 

I have nothing to compare it to so all I can say is the following. The fear is worse that the treatment. Its administered in the ICU so you will get excellent care. You will itch, but you can live with an itch! You will be weakened, but you can live with that. I had a nurse steal an exercize bike for me so I could exercize in my room! The worst thing about it was the hospital food.

 

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

You know, I remember the hospital food after the nephrectamy.  The morphine (and fasting) made it the best thing ever to hit my lips...until day 2...then the tongue coiled back into my head. :)  Thanks for the prespective and sharing your hope in the drug.  

angec's picture
angec
Posts: 924
Joined: Mar 2012

Hey Joe, sorry to hear about you situation. I feel positive though, that you will do just fine.  You are young and i think looking into the IL-2 would be a great option.  Sometimes if it works, it can offer a cure.  Also, it can help other treatments work for you if it should fail.  I agree with the others, try also for the immune based drugs.  There has just been FDA approvals on Nivolumab and Keytruda, one of which is also called opdiva... I think i spelled it wrong. Those drugs have very little side affects, can be very affective and they are not chemos.

I too am  surprised they wanted to start you with Evormelis (again spelling is off, sorry).  Especially when there are so many other drugs available that are newer. Votrient is a very good drug, if it works it works well.  My mom who was 79 at the time of her diagnosis went on Votrient. She was stage 4, had about 8 or 9 different areas all over her body, could only tolerate 200 mgs of Votrient and is now NED.  So, think about that drug if the IL-2 and the other immune drug is a no go.  My mom went to sloans and saw dr. Motzer, he recommended the votrient while her local oncologist wanted her to take Sutent or Torisel.  At least at Sloans they are very up on all the new treatments.  Please keep us posted. 

I know you are afraid, but you are young and you have a lot to live for and a great, positive attitude, from what i can tell.  Don't even think of life expectency, just think about taking one day at a time and finding the drug that is going to work well for you.  In todays day of kidney cancer, people are living with it and are managing it as a chronic condition. Congrats on the new addition!

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Thank you angec!  We are very interested in learning more about the immunotherapy drugs as well.  Now that I've engaged for a few days on these boards, I see clearer and clearer that everolimus may not be the most appropriate first course of action.  And I am so greatful to everyone's responses to encourage a second opinion.  To my (our) attitude, it's a choice.  Simple as that.  But that way of behavior is independent of cancer.  We can choose to respond to things the way we want.  It is the one thing we have control on in life.  I cherish that ability/gift and do not take it for granted.  So yes, this sucks.  It sucks for all of us and those around us.  But there is opportunity in even the bleakest moments (even hell has a fire to cozy up to :) )

oh yeah, and the bouncing baby boy is cooing and smiling enough to light up the darkest times...best drug in the house.  Good luck to you as well and I'll keep everyone posted!

Billy&#039;s Wife's picture
Billy's Wife
Posts: 52
Joined: Jan 2014

Hi Joe,

You are too young to be here, I am so sorry you re going through this.  I just wanted to add some clarity you may not have yet.  If you do already forgive me.  IL 2 is not offered by all Cancer Hospitals.  Memorial Sloan Kettering will probably not recommend it.  I would suggest that you check back here with any questions after your visit there.  They are of course one of the best.  You are right to seek out their knowledge.  The folks on this sight have been through it all so check back in with them.  IL2 has the potential for total cure where metastatic RCC is concerned and it should be explored by someone as young as you are.  I think explored is the right word because as others have said there are lots of drug choices now and they should be looked into in order for you to make the most informed choice possible. Always remember that you are the captain of your ship so take it all in and ask all the questions you can until you find a team that will work with you to your satisfaction.

National Institute of Health -NIH- is also a good resource should you choose to seek more opinions.  I am pretty sure they still offer IL2.  You can contact them by email and a nurse will answer your questions. 

You can be a success story and we are all pulling for you and your family.  I will be saying prayers, good luck!! 

Arleen

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Arleen, thank you for your prayers.  I share them with everyone in this fight. I've never been very emotive in life, and am more puzzled by the anomoly of age/health in this diagnosis.  But, outliers exist everywhere; though I'm sure there are thousands like me as well.  I am writing down your recommendation on NIH and we will look into.  IL-2 seems like something I can tough through but would like to hear the best recommendation from Sloane first, then perhaps a follow up 3rd opinion.  Though I will bring back Sloane's recommendations to this team of experts.  You have all proven to be more than qualified to answer and generous with your time. I cannot thank all of you enough.

Joe

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

that when I had Il-2, I was totally prepared. I was fit and strong. Pulse in the mid 50's. I knew about the side effects inside and out. My pain tol. was pretty high. Many people like to say they have a high pain tol. And most people don't want to hear about it.  I told my surgeon before my nephrectomy that I tolerated treatments well. So, get in there and do what ever you need to, because I will heal from whatever you do to me. I got the old, "Yeah, ok."

So anywho, the next morning, I was sitting up in bed reading the newspaper. Surgeon comes in. Pauses. Sits in the chair and says to me. " I have got to tell you that never in my life have I ever seen a patient post radical nephrectomy look as good as you."  He just shook his head. The rest is history. I was exercising, running, golfing and riding my hog in comfort in 2 weeks. maybe 3. 

I was just as prepared for the Il-2. I looked forward to it. There was lots of testing prior to treatment. I did so well in the cardiac stress tests that they didn't bother with some tests and into the hospital I went.

Now I know it was easy for some people. One guy I happened to know had just finished the Il-2 treatments. He said, "No big deal." He got up everyday and took a shower. Sat outdoors (it was july). He ate well, had some slight reddening of his skin. He even went back to the gym within a week of treatments. There was nothing I wasn't prepared for.

So I thought.

The rigors were like grandmall seizures. The loss of reality was real. I didn't know the president or the year. Every inch of skin was bright red as if left naked on a raft in the ocean with no protection. and felt like it. Then it all peeled off,flaked off, fell off. When I took off my shirt, dry skin flew around the room like a pound of baby powder. I remember it being like Pig Pen in the Charlie Brown cartoons where he always had clouds of dirt circling his body.

Mentally I was broken. A pathetic mumbling destroyed soul. I lost something like 25 pounds plus another 10-15 pounds of fluid they keep running during treatment. The IV's are done to keep the fluid volume high. This is to avoid hypotensive episodes which are common and force abortion of the Il-2.

Picture this. I started as a 59 yo male. 6' 200# decent build. Alert, oriented, and picture of health. I finished as a pathetic man, down 30-40 pounds, skin just hanging off and peeling. Needing assistance to transer to standing. Psychotic with disorientation. Not really sure if I wanted to be alive. Definitely unsure if I could ever return to pretreatment status.

So it has now been 15 months.. By spring 2013 I returned to my pretreatment status. I have not had any other treatments except zometa to keep my bones healthy. Would I do it again? In a minute. It was the most inhuman thing one could do to another person. That is why it is done in an ICU or as Yale does it in a special high dose chemo unit.

So what I am saying is, find an immunological trial before using drugs. Then if they don't work, you will have the Il-2 always available to fall back on. I suggest trying what is available to you. Anything to by time. Because advances in renal cancer are becoming frequent. Il-2 will always be there to fall back on.

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

I laughed when I was diagnosed in 2013 ("what are the odds!") and thoroughly enjoyed the time off with the nephrectomy and was in the gym doing squats within four weeks.  But I've been mentally unconformatable since this recent diagnosis of mets.  It's a totally different field.  The care of my boy and wife has been the only thing I've thought about.  Pain wise, I can take quite a bit for quite a long time.  Emotionally, I've recently struggled, so I have to keep my head in order.  I have taken down your direction to go the immunological trial route first and see IL-2 as the fall back option.  I'll update on what the doc says.  Thanks for sharing part of your story.

vinnyc
Posts: 19
Joined: Jun 2011

Similiar to you, left kidney, 10 lymph nodes, grade 4 feb 2011, healthy lifestyle.

Il2 failure, drug failures, and continue progression. 6 months Everolimus, dramatic

response, major shrinkage. Not typical, response rate is low and average response

time is 5 months. Indefinate is not forever.  Mouth sores and fatigue is typical.

Check on getting PD-1 clinical trial, or off label. Try insurance. Some people get it

approved, even though its only approved for melanoma now. 

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

I've written down the PD-1.  Thank you vinnyc.  Appreciate the "indefinite is not forever" comment.  That blew me away at the time and it took me a good day to get a positive mindset again.  Thanks for the tips.  Will let you know how the consultation goes.  

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Hi Everyone,

This past Friday I met with Dr Martin Voss at Sloan Kettering.  Couldn't be more impressed and say better things about this guy and team.  Full 2 hour consultation from an RCC metastasis specialist and he made me feel like I have an advocate.

The decision by my oncologist at Northwestern to prescribe Everolimus was verified by Dr Voss.  Apparently a genomic test was run at Northwestern from my original surgery one year ago which found two inhibited portions of my cancer cells which caused increased cell production.  Everolimus would attack just that.  However, Dr Voss felt this should be my third option.

The next option he gave us is IL-2.  He recommended one of his colleagues, Dr McDermott, at Harvard.  The third option was a phase III clinical trial he was running which used Nivolumab combined with Ipilimumab. As phase III, the study is randomized, meaning there is a 50% chance I could get the immunotherapy or get Sunitinib.  He believes there is opportunity for this combination to see see even greater long term durability than IL-2.  
 
This brings us to next steps.  There was some confusion between Northwestern's Pathology department on my RCC classification so Sloan is confirming whether I am clear cell.  If so, we intend to start the clinical trial first.  Always the option of IL-2 next; and the card up the sleeve will be Everolimus.  You were all involved in giving me direction and support to get to these options so I wanted to thank you for your care of a stranger like myself.  I hope some of this information could perhaps help someone else out there in a similar situation today.  Looking toward the next few weeks for final decisions on first treatment.  
Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Joe C, thanks for the update and I hope your trial is successful.  I can't stop raving about how great everyone is at MSKCC. 

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Was wondering about you, Joe! Now I know you are in good hands.

Thanks for the update. Isn't it great to know you came here and as a result

were perhaps, more prepard for your consultation?

Keep us informed..we'll walk this journey along side you!

Gentle hug, Jan

strongmind
Posts: 34
Joined: May 2012

My husband had IL2 treatment in Beth Israel Boston under Dr McDermott and Dr Mier. Wonderful nurses and doctors and staff.

It worked really well for him. He was 32 years old when diagonosed with stage IV..( 3 years back) so far so good..

All the best and hope any option you use works as wonder.

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Hi,

Was IL-2 your family's first treatment or did you do other treatments before?  How long did the treatment go?  1-2 months?  I appreciate your thoughts on the matter.

 

Joe

danbren2's picture
danbren2
Posts: 311
Joined: May 2013

Joe,

     Good luck with your trial and please keep us informed of how things are going for you.  I was diagnosed in 2011 and have had my right kidney removed, lower portion of my right lung, and a brain tumor.  I have been NED for a year in November and I am hoping and praying for another great year.  I have never had to take any medications, but I am very interested in all the clinical trials! I am wishing for the greatest results for you as you begin your clinical trial!

                                     Prayers for good health!

                                       Brenda

                                             

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Hi Joe, 

Sounds like you now have a good game plan. I am so glad to hear it. Please post back when it is determined whether or not your RCC pathology gets confirmed as clear cell OR identified as a different pathology (e.g., pappilary, chromophombe, or others). Non-clear cell RCC is very different than clear cell. While they are both located in the kidney, they are very different beasts, so to speak.  

The reason why I say this, is because you will get good input here on what the next step may entail for you if indeed you do not have clear cell pathology. My husband did not have clear cell RCC so I am somewhat familiar about what certian differences this entails when treatment options are presented. Immunotherapy is still a valid option for non-clear cell, it's just a bit of a different ball game to obtain it from what I understand. Clinical trials for it tend to be predominatly for clear cell, but not exclusively it may require some leg work to find. It's unfortunate, but they have to do what they can to get the drug to market which means use the majority of the cancer population (which is clear cell) .Once it's there, doc's can prescribe it as they see fit. 

Nanosecond (Neil) is a good resource here on this topic. I hope he sees this and can chime in to add (and correct me if needed!)

NanoSecond's picture
NanoSecond
Posts: 653
Joined: Oct 2012

I am here but I could not say it better than you just have.

Billy&#039;s Wife's picture
Billy's Wife
Posts: 52
Joined: Jan 2014

Sounds good Joe.  Thank you for letting us know.  I have been thinking about you and sending prayers your way.  I am so glad to hear that the doctor at Sloan suggested IL2.  That was not my husband's experience in 2008.  As time marches on so do the advancements.  Hang in there.  I hope you have nothing but success.  I will keep up those prayers. 

Arleen 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Joe,

It sounds like you are in very good hands, indeed. It is amazing how everyone's cases are different. Kidney cancer is an odd duck.

I am keeping you in my prayers and wish you much success with the trials!  Your attitude is admirable and will get you through this.

Hugs

Jojo

Joe C's picture
Joe C
Posts: 37
Joined: Dec 2013

Big news today!  Dr Voss confirmed I am Clear Cell!  He also said it was 'translocation RCC (sp?)' which his team is looking into further.  But the clear cell opens us up to trials.  I am still going to schedule time with Dr McDermott to discuss IL-2, but am strongly considering the trial. 

Dr Voss informed me of another trial as well.  A Phase 2 study of MPDL3280A (an Engineered Anti-PDL1 Antibody) as monotherapy or in combination with Avastin (Bevacizumab) Compared to Sunitinib.  Dr Voss recommended this 3 arm phase 2 trial over the phase 3 nivolumab + ipilimumab combination because if I did get the Sunitinib in the 3 arm trial, and results did not show, I would automatically get the antibody treatment.  Whereas the nivolumab ipilimumab combination has a 50/50 chance of getting Sunitinib and if gotten, there is no chance to get the antibody treatment.

Given the risk and what anyone knows about these therapies, do you think the 3 arm study is the 'best' option?

Thanks for your help!

Joe

 

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