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mrou50 said:

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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

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

foxhd said:

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.

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.

angec said:

Hey Joe, sorry to hear about

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!

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!

foxhd said:

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.

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.

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.