Positive_Mental_Attitude said:

Joe C, thanks for the update

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. 

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

Joe C said:

Update: Sloan Kettering consultation

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.  

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 said:

Update: Sloan Kettering consultation

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.  

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

Billy's Wife said:

Sounds good Joe.  Thank you

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 

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 said:

Big news today!  Dr Voss

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

 

HI Joe~

You sound hopeful that you are now eligible for these studies.

I know nothing of which you speak (sorry) but others here will.

Also, are you also on Smart Patients forum too? Neil would know more.

I am just happy for you!! YAY!!! Now go hug that little baby of yours.

Keep us informed. Tell me, are you feeling more hopeful now?

Hugs, Jan

Joe C said:

Big news today!  Dr Voss

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

 

your trial carefully. If you choose one, and it doesn't go well, you may have disqualified yourself from many other available trials. It could be a BIG mistake.

My brother too is 36 years old and have Stage IV kidney cancer.  He has been taking Sutant for 11 months.  There has been some shrinkage and the side effects have been toterable.  He is on the medication indefinately.  I often wonder if there is anything else we should be looking into...other meds...therapies.  Keep us posted on your progress.

My thoughs and prayers are with you and your family.  Hang in there Joe. My borther told me that after the worst day of his life became the best year of his life.  That is because he has seen so much love and suppport from strangers.  He has discovered the beauty of the human spirit.