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And off we go...

Bermudagirl
Posts: 120
Joined: Jun 2012

Hello everyone,

I just wanted to update you on how Dave and I fared at Hopkins yesterday, and what we have decided. First, we were blown away by the compassion, knowledge and expertise of the doctors and clinicians on this team. They truly are some of the countries' brightest and best, and we feel blessed to literally have them in our backyard.

The day started out with a meeting of 3 other patients and their families besides us, where we met with the nurse practicioner and coordinator of the program. She gave an overview of cancer in general, and lung and esophogeal cancer. We then met with one of the doctors on the team who took a history, did an exam, and answered our questions. We then left for lunch, at which time the "team" comprised of a medical oncologist, radiation oncologsit and surgeon all gethered and discussed each of our cases. We then met with each of them from 1:00 to 4:00 and they suggested a course of treatment.

Specific to Dave it was determined that the endoscopy done the middle of June doesn't quite give them enough comfort to say whether this tumor is at the GE juncture or a little more in the stomach, so it will be repeated on Tuesday. Once they have that data, we will then plunge full steam ahead. Their "gut" feeling, no pun intended! is that it is GE. If it is GE then they will test for a CHFR Methylation status in the cells that they biopsy, and if he has that mutation he will be entered into a clinical trial that Dr. Ronan Kelly at Hopkins is just starting. Ladies, Dr Kelly is adorable! He is from Dublin, has that lovely Irish lilt, and I just fell in love with him! :) Maybe 35, dark black hair.. but I digress! :) But seriously, he is very passionate about EC and is working hard to get more research into it and get the pharmaceutical companies interested, right now they aren't as EC is more of the step child to more prominent cancers like breast, colon, lung.

If the cancer presents more as stomach then he would not have the chemo/radiation combo, but chemo and then surgery, then more chemo. But as I said, they are hopeful for GE and have even gone as far as setting up a time next Friday for the radiation simulation work.

If Dave is a candidate for the clinical trial it would be "A Phase 2 Study of Paclitaxel with Cisplatin vs Fluorpyrimidine with a Platinum Agent for NeoadjuvantTherapy in Operable Esophogeal Cancer Based on CHFR Methylation Status in Diagnostic Biopsies". Whew! I'm sure some of you know what that means, and I'm sure we will soon enough if we participate.

Now the surgery component. I know that many of you (William especially) really advocates for a second opinion. And I think that that is very wise, but we have decided to go with this team, and Dr. Stephen Yang is the head of thoracic surgery at Hopkins. He has done thousands of THE's. We asked about the MIE, he's done a few, but his comfort level is THE. His partner does the MIE, he said he'd be glad to have her consult with us, and we may go that route for a second opinion on how to best operate. He also knows and likes your guy Dr. L at Pittsburgh, William. But for us we feel that Hopkins will deliver superior care and is 25 minutes away. So that is a little up in the air for now, but we want to get going on the chemo and radiation once all the details are in place.

We also know that the long term statistics are still grim, perhaps as low as 30 to 40% for a 5 year survival rate, but as my daughter pointed out, that's 30 or 40 people out of 100 who are still living 5 years out. We'll take that. Heck we are trying to just take it one day at a time for now.

That's all I can think of at the moment. I just wanted to share how things are progressing, and to thank you all for your support. I hope that some of what I have written will help someone else.

Sandy

BMGky
Posts: 666
Joined: May 2010

Sounds like you've got a great team and great plan. Go for it and best of luck!! BMGky

Sally.L
Posts: 40
Joined: May 2012

Sounds like it went well. So glad you are comfortable with the way things are going. Hoping for the best for you both.

Sally

monica_sss
Posts: 57
Joined: Dec 2011

Hello,

My Mother's oncologist was Dr. Kelley (he's a sharp dresser with nice shoes, yes) and her radiolotist was Dr. Hales. Our thoracic surgeon was Dr. Mark Duncan. I hope the best for you in this journey. My Mom was diagnosed as a stage 3 and had the THE through Dr. Duncan (in early April) at Bayview Campus. Her chemo/rads was at the Broadway campus. Feel free to message me if you have any questions.

captdave's picture
captdave
Posts: 168
Joined: Feb 2012

Sandy, Sounds like you got the full meal deal all in one day. A lot of information to take in and process. Overwhelming is how I remember feeling about it all and I was somewhat prepared for the inevitability of EC and surgery. As for the THE over the MI, William has his preference from his personal experience which I cant dispute. However, having had the THE and being in the same age group as your Dave I found it not as difficult as I had been prepared for. One thing that I and my surgical team agreed on that my "stellar" recovery was the result of an excellent surgeon (Michael Mulligan at the University of Washington), being in very good cardiovascular shape prior to surgery and attitude. I don't know what kind of physical shape Dave is in but encourage him to start walking if he doesn't exercise. If he does exercise encourage him to ramp it up and push himself. He is training for the fight of his life! Ask the surgeon about what he can do to physically prepare for surgery, it is important. Attitude is really important to recovery. My surgeon attributed my rapid and total recovery to attitude and drive. Keeping your eye on the prize and being willing to do what ever it takes to win and doing just a little more then the Doc's ask. FYI, I was 50 when I had the surgery and was back to work on ships exactly two months after surgery without any restrictions.

Best wishes and continued prayers for you and Dave,

Dave

NikiMo's picture
NikiMo
Posts: 346
Joined: Jul 2011

Hi Sandy,

We sought chemo and radiation at University of Penn since we live in Philadelphia. But, we traveled to Hopkins for the surgery so that we could have Dr. Yang perform the procedure. Jeff had to have an Ivor Lewis because of previous surgery and we wanted one of the best in the country to do it. I have to say I am very jealous of your Hopkins experience though. Wish we had been walked through the same type of thing at UofP.

All the best,

Niki

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Sandy, Stats are just that--- stats. I also was given grim stats after my Stage three diagnoses. That was 4 1/2 years ago and I'm still testing cancer free.
Dave has given some excellent advise. I wish someone had told me how important it was to exercise. I had worked a job where I was very active so I put other exercise on the back burner.After my Ivor Lewis surgery, I got very weak and suffered a little from depression. One day my daughter called and said she was on her way to get me. She had joined the gym and I was going to join also. It was slow going to begin with, but in no time I was feeling 100% better. So, if not all ready, start exercising now.It does wonders for our physical and mental well being as we fight the beast.
Sandra

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Me again--While reading another post, I read you are a librarian. You might be in a position to really spread the word. Ecan has some great pamphlets that can be handed out. Go online and contact them. They have sent me kits free. EC is now rampant in the US. A few years ago it was more of a mid eastern desease and also very rare in women. Doctors are starting to realize how much research is needed.
Sandra

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