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Back from Slaon Kettering

katefm's picture
katefm
Posts: 112
Joined: Oct 2006

Hi Everyone-

I thought I'd give you an update on our trip to NY. We got back late Wednesday night, but it took us the rest of the week to get everything organized - that's why I haven't written until now!

Our visit with Dr. Kemeny was a success. Jim's scan went well on Monday. We met with her yesterday morning to review the results of the scan.

As you know, Jim has multiple tumors on his liver and some implanted on his omentum. He's also got a tumor further down in his colon. One of the tumors on his omentum is gone! The tumor in his colon has shrunk! There are several tumors on his liver - we think around 7. Some of those tumors shrunk! Three of the tumors on his liver, the three biggest, actually grew. The good news is that Dr. Kemeny agreed with our oncologist that the biggest tumor doesn't look...right. Meaning it could be dead!

They tested Jim's CEA level at Sloan Kettering, and once they get the results, they will work with our oncologist to decide what to do. If his CEA level rises, they are going to put him on a different chemo regimen. If his CEA is lower or the same, they are going to stay the course and see how he's doing in a month. Jim has another scan next month to verify improvement.

We were delighted to hear that Dr. Kemeny agreed with literally everything that our oncologist said.

Jim goes back to NY in April for another scan. We got the impression that Dr. Kemeny wants more improvement - faster. Jim is very young and otherwise very healthy - he's the ideal scenario for kicking Stage IV cancer and I imagine he's an interesting case for any doctor because he is so young.

Okay, that's the end of the medical portion of the report. Here's the rest of it:
Our visit with Dr. Kemeny was a totally different experience than the last time. In October there were hundreds of people in the waiting room, we weren't seen until around 12:00, and our appointment was at around 9:30 or 10:00. We had to meet with a ridiculous number of people including Dr. Kemeny's fellow, nurse, assistant and several visiting doctors from Japan that spent the day following Dr. Kemeny around. Dr. Kemeny was extremely curt and it was hard to get her to answer questions. She didn't go over the scan results with us in detail, and although she agreed with our oncologist's recommendations, she didn't seem happy with the fact that we wanted Jim to have treatment in Wisconsin rather than fly to Manhattan for treatment every other week. I practically had to hang on her leg to get her to stay in the room and answer the few questions we had.
This time there were around 30 people in the waiting room. They started our appointment (which was at 9:30) at 10:00, after bloodwork. We met with her Nurse Practitioner, her nurse and Dr. Kemeny herself. And that was it. Everyone was friendly and took time to talk to us. Dr. Kemeny SAT DOWN ON A CHAIR to review the scan results with us. She got on the phone with our doctor and said "he's nice - I agree with his recommended treatment". He's NICE? This was not the same brusque eccentric that we experienced in October. She even told Jim he had the right attitude for beating cancer.

All in all it was a good trip. We'll see what happens tomorrow.

Also, I have a personal blog that documents our journey to Jim's complete healing. If any of you are interested, the site is http://marventano.blogspot.com

Glad to be back!

Kate

hopefulone
Posts: 1048
Joined: Jan 2007

Hi Kate. welcome back. It's great that your meeting went so well . It sounds very promising and hopeful!. We are going back to the primary oncologist this tues to make decision regarding chemo. We've decided to go for it. Bob has 6 or seven tumors, of which a few are very small,and one tumor, the surgeon says is in a "precarious" position, however he is not ruling out resection, rfa, cryosurgery, hai pump in future, depending on what effects the chemo has on tumors, so we are praying and hoping for shrinkage down the line so that one of these becomes a viable option . We are anxious to get started and hope for the same promising results. Please keep us posted. Many positive vibes and prayers coming your way! God Bless.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi Kate,
What uplifting news. I bet you and your husband feel much better now. I guess that first trip, maybe Dr. Kemeny was having a bad day....maybe she was stressed out with those visiting doctors, etc. etc.. I'm glad you had a good experience this time around and good such encouraging news.
Take care,
Susan

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