Mayo Clinic

Scott and I went down to Mayo last night to easily make my 7:00 checkin time at Mayo.  Sue stayed home as we decided Scott would ask better questions and listen better and had lots of information about trials.  We had a low key night walking a bit to get the lay of the land, eating at Chester's and then walking along the river.  7:20 blood test and 8:00 CT test.  Process slowed as they tried to figure out if they could use my port for the CT.  Turns out the card I carry did not have enough info and eventually we went with an IV.  I was a wreck since my last IV experience was awful but I decided it was Mayo and they should be good at it.  Chelsea was great, both in trying to figure out the info they needed for the port so I will have it in the future and in putting in the IV.  After that I was only a little nervous about the dye going in but Jason was great and all went well.  We were hungry by the time we got to breakfast in the small Eisenberg building cafeteria   Bought sandwiches and cookies (we are related) for lunch and went back to  the room to rest.

Walk and picnic lunch before 1:20 oncologist appt.  Dodged the rain and arrived early.  Met with a physicians assistant first who said the doc would be in to talk about the diagnosis and treatment.  Treatment sounded good.  Turned out he had three options-trials rather than treatment.  An immunology trial for which I have to have a positive MSI to participate.  Hopefully the Foundation one test Dr Dan has ordered includes this so I could know soon.  The other is an agent added to gemcitibine which I did with Dr Dan first.  Third option wait and see.  The CT did not show any radiological growth, a good thing but is active bio-chemically as shown by the CEA.  This matches Dr Dan's "the cancer is active, we just don't know in what ways."  CT showed that.  Mayo Dr Yoon was patient, forthcoming, protective when Scott's questions were too direct--making sure I was comfortable and wanted the answer before continuing.  He thinks immunology is the way too go, there just are not a lot of pancreatic cancer trials with that.  He also cautioned about using two agents as some of the second agents have severe side effects.  He is cautious about quality of life, and trials that are far away with difficult regime timetables.  He is much like Dr Dan in thinking about what is important and where we are now, different words and manner but re-affirming what Dr Dan has been saying.  At this point success in trials is measured by adding three months lifespan.  Some immunology trials for 2-15% can add more but they don't know who, why or when,  and he could not point to any.  His best hope is the MSI trial if I am eligible, then if foundation one turns up anything interesting.  I think he was at a draw between the other and waiting/watching.  No silver bullet, no secret that Dan does not know about but glad I went.  He said, as everyone does, that I look great and am otherwise healthy.  I keep holding on to that and in spite of reality I told him I wanted to live 5-10 years, just not sure how to do that!

Next Dan appointment is Monday the 15th.  Next trip--Vancouver and Mayne Island Tuesday the 16th!

Cancer Update

Hi there. Thought we would give you a little update. The blog posted before our Japan trip gave you a the status on where we were with Nancy’s cancer. Numbers up and re use of same treatment pretty well eliminated.
So we are at the what is next place. 

We returned a week ago today from Japan. A nice little trip. Right before we left we decided that now would be a good time to see what was cooking at Mayo Clinic. We had talked with Dr Dan about this some time ago and we all had decided to hold it in our back pocket for later. We think later is now so we called and talked to them before we left. We left them with info and headed off on the trip. Just before coming home we got a message from Mayo Clinic in Rochester saying to call as they would accept Nancy for a consult. We did that and have an appointment for August 9. Have no idea where this will take us but here we go. Nancy’s brother Scott is going with her as he is such a great question asker and listener. Sue’s idea. She will impatiently wait for a report when they return
Dr Dan is looking for alternative treatments or trials and we hope to hear something from him this week.
Most likely if alternatives are found they will be elsewhere and we will have to go there for treatment. He also sent a sample of her tumor off to a group that is looking at it for what types of cancer cells are in her tumor in hopes that it might give some clues as to next treatment types that would be recommended.

So thats where we are right now. Kinda limbo. Nancy handles it with grace and Sue hates limbo!!!!!!!

Nancy was a trooper in Japan. Long days and hot and humid but she held up very well. The group we traveled with was very nice and supportive. They could not believe what she was doing and how well. Me too!!! We will do a blog posting but wanted this to get out so you are not wondering what is happening.

So the plan was to travel to Mayne Island in BC to our home  in late August. As of last night we still do not know if we will . Our focus needs to be on whats next and getting it going. So lets say we are still thinking about it and if it works that we can, we will. 
Terri (our niece) and her daughter Lauren and friend are here from Milwaukee. Lauren is grown up. They drove her car (we bought it for her) up to show us and to do a visit to the University of Minnesota as a possible school for Lauren.
And then there was the all day shopping to the mall. Terri and Nancy and I went to an art fair and home.

So Japan blog and pics soon.