Tips for First Appt at Memorial Sloan/Dr. Kemeny

[RachaelM]

My husband (41)was diagnosed with stage 4 colon with spread to the liver in April of this year. He has approximately 10 lesions scattered in both lobes of the liver in every segment. He had emergency surgery to remove the main colon mass because of obstruction.

He just completed round 8 of FOLFOX with Avastin and had CT and MRI after 6 rounds which did show shrinkage of the tumors in the liver. But not enough to be eligible for liver resection with a surgeon in DFW. The surgeon recommended Y90, HAI pump or possible liver transplant.

We already had our eye on a consultation with Dr. Kemeny about the possibility of an HAI pump before this news and she has agreed to see him and we have an appointment mid September.

What should we expect for this first appointment? We have sent over all his records for her review prior to getting scheduled. Her office has not returned messages about what we should expect for our visit so we are just trying to be flexible.

Does she typically want to schedule additional scans? How long is the first visit with her? Would an additional visit be scheduled to talk to a surgeon about installing the HAI pump?

I know it is patient specific but wondering if any recent visitors can share their experience. Thank you

[ginabeewell]

If you are traveling for the meeting and the HAI pump is something you are seriously considering, you might want to ask her office to schedule time to meet with one of the liver surgeons - Dr Kingham or Dr Angelico.

Our first appointment was just with Kemeny, but I think we had to return for a second consult that included Kingham. If you can get that scheduled now, it would be great - or don't hesitate to ask if you can meet with one before you leave; she can call for a meeting at a moment's notice and make it happen, including scans if she decides she needs new ones. The airlines all take doctor notes if you need to switch travel, so you can ask her office for that if you end up having to stay longer for any reason.

You'll want to do as much research as you can before the appointment. Kemeny's meetings tend to be short and very focused. She spends a lot of time reviewing scans prior to the meeting - and it is possible she'll want her own scan, although if memory serves, she used my Northwestern scan to determine if the HAI pump made sense. Basically, you want her to confirm eligibility for treatment and willingness to coordinate with a local cancer center if you're too far to do everything at MSK. When I went through treatment, I was there about once a month - and after flying out only to find I didn't qualify for pump chemo, we started to have me do labs the week prior to make sure it was worth the trip!

You'll want to be ready for a quick turnaround - the HAI pump works best if it is incorporated before you do too much chemo; I think I did it after 7 or 8 rounds of chemo. As I recall, they told me to expect 3-4 days in the hospital and wanted me to stick around for another week or so to make sure I was OK before flying home.

We used to joke that the average Kemeny appointment was about 72 seconds long - any longer and there was an issue! She'll spend a bit longer on the first visit, but her focus will be almost solely on the clinical side versus what the chemo will be like or how the pump will change your life. I found that Kingham was a better resource for some of that detail - along with patients here who have been through it.

Honestly, I think the more you can read about it ahead of time, the better off you'll be!

[RachaelM]

Thank you for your reply. These are all very helpful tips.

We have done extensive research/reading on both Dr. Kemeny and the pump. I’ve tried to reach out several times to her office to check on scheduling scans and possible surgeon time but no one ever returns the messages.

Trying to just go with the flow for now. My husband just completed round 8 of FOLFOX with Avastin and his labs look good so I hope we qualify and get the pump quickly.