HAI pump

mom_2_3

PhillieG said:

Mike
Mom 2-3, Get outta town! A hug? Are you sure the woman didn't say that someone tried to MUG her? It is NYC after all :-)

I have gotten her to smile and almost laugh so miracles can happen...

Mike, she's not warm and fuzzy but she's not mean either. She doesn't mince words and is brilliant and that is what you are after. Her staff id great, Trish is a wonderful assistant Doctor and Sandra is great as her main nurse. Usually you will meet with Sandra, then Trish, then Dr Kemeny in that order. Many times I will go over the scans visually with her when something is going on. If it business as usual I do not ask to see the scans.

It never hurts to have questions written down which you probably do anyway. There have been times where I've used a small portable MP3 player/recorder that I have to record the meeting so I can go over it later. I did that more in the beginning, at this point I rarely do it anymore. I got over the shock of cancer a long time ago.

Hope you get great news at the meeting. Please do keep us posted.
-phil

Phil
Phil,

I did ask the woman to clarify two times the word "hug" and also confirmed our definitions of the word were the same. So there was definitely physical contact involved. I think in 5 years if I am clear then I am going to give Dr K a kiss (whether she likes it or not....)

all the best,
Amy

menright

PhillieG said:

Mike
Mom 2-3, Get outta town! A hug? Are you sure the woman didn't say that someone tried to MUG her? It is NYC after all :-)

I have gotten her to smile and almost laugh so miracles can happen...

Mike, she's not warm and fuzzy but she's not mean either. She doesn't mince words and is brilliant and that is what you are after. Her staff id great, Trish is a wonderful assistant Doctor and Sandra is great as her main nurse. Usually you will meet with Sandra, then Trish, then Dr Kemeny in that order. Many times I will go over the scans visually with her when something is going on. If it business as usual I do not ask to see the scans.

It never hurts to have questions written down which you probably do anyway. There have been times where I've used a small portable MP3 player/recorder that I have to record the meeting so I can go over it later. I did that more in the beginning, at this point I rarely do it anymore. I got over the shock of cancer a long time ago.

Hope you get great news at the meeting. Please do keep us posted.
-phil

Warm & Fuzzy she's not!
I really had to force myself on Dr. Kemeny to get my questions answered. She did so up until she politely kicked me out of her office.

Are wait time long at MSK? I had an appointment with Dr. Jarnigan at 1:00pm on Tuesday and did not see him until 3:00pm for exactly 5 minutes.

Then on Wednesday, I had an appointment with Dr. Kemeny at 3:00pm and did not see here until 5:30.

Is the high demand because they are that good or is it simply big city (20M people) and too few doctors?

I hope I am not signing on to multiple hour waits for each appointment. Comments????


Mike

abrub

menright said:

Warm & Fuzzy she's not!
I really had to force myself on Dr. Kemeny to get my questions answered. She did so up until she politely kicked me out of her office.

Are wait time long at MSK? I had an appointment with Dr. Jarnigan at 1:00pm on Tuesday and did not see him until 3:00pm for exactly 5 minutes.

Then on Wednesday, I had an appointment with Dr. Kemeny at 3:00pm and did not see here until 5:30.

Is the high demand because they are that good or is it simply big city (20M people) and too few doctors?

I hope I am not signing on to multiple hour waits for each appointment. Comments????


Mike

Waiting times at MSK
They work in their own time zone. Be prepared to wait. And wait. However, if you want to go down to the deli next door or wander the bookstore, or something in the area, the front desk will take your cell number and call you when you need to come back.

Did I mention that you'll have to wait?

My surgeon there (Dr. Paty) is notorious for his extremely long waits (2-3+ hours....), but no one ever complains because he's well worth the wait. My onc (Dr. Chung) is not as bad - only about an hour wait.

At least the waiting rooms are comfortable, have snacks, computers, etc.

Bring a good book with you.

Emmett20

I know you can also use the

I know you can also use the hai pump as adjuvant therapy.  That is what I am using it for when I have my surgery at the National Institues of Health this summer.

Butt

Mark Bloomston in Fort Myers, FL is an excellent internationally recognized surgeon who does pumps.Great stuff, too. 

PhillieG

VERY old post 2010

This post is practically 9 years old. I don't have a list of places that do the HAI pumps but I know I've been the specimen for at least 5 visiting doctors/nurses where they show how to refill the old Codman pumps. It's being used more and more because of its effectiveness. Dr. Kemeny has a 10-year survival rate somewhere between 60-70%. I just celebrated 15 years in February. Pretty f-ing good.

Unfortunately, due to the lack of profits that Johnson & Johnson were getting on the Codman pump, they've decided to STOP manufacturing it. They are now using a more complex pump that needs to be refilled every 2 weeks instead of every 2 months when it's not being used for administering drugs. Additionally, when people get a CT scan (or other types of scans) they need someone on the premises to "restart" the pump since it's electronic. The old one had NO moving parts.

We certainly don't want to disappoint J&J's shareholders, do we? 

Msboop15

mom_2_3 said:

Lisa
Lisa,

During the HAI chemo period one is typically also receiving systemic chemo, albeit not the same week. A usual schedule is:

Day 1: systemic
Day 15: systemic
Day 22: pump

Day 45: systemic
Day 59: systemic
Day 66: pump

So one would have systemic chemo every 2 and every 3 weeks.

With regard to having lung mets...I have met people that had lung mets that still had the HAI pump installed so lung mets didn't preclude HAI.

I have never heard of an "HAI-like" pump for the lungs.

Amy

Juicing

I read your bio and noticed that you have taken a juicing and exercise approach. I exercise but I am wondering if I need to change my approach. What is it that you find that helps you? I know nothing about juicing so just wondering if you have any suggestions as to where to start. 

I am new here so wasn’t exactly sure how to get the question to you other than this way. I hope to hear back from you! Thanks!

Trubrit

Msboop15 said:

Juicing

I read your bio and noticed that you have taken a juicing and exercise approach. I exercise but I am wondering if I need to change my approach. What is it that you find that helps you? I know nothing about juicing so just wondering if you have any suggestions as to where to start. 

I am new here so wasn’t exactly sure how to get the question to you other than this way. I hope to hear back from you! Thanks!

old post

I do hope Mom23 sees your post and answers, becasue this thread is nine years old. 

If you don't get a reply, you could send her a message via CSN. I am sure she will be happy to respond.

Tru

Butt

I know Bloomston in Fort Myers now does a new pump and I know it got disconnected.I have an old one. My mets went into lungs in a few months. I believe it is not that uncommon. Honestly, I don t see accomplishing that long surviving rate. I wish I could.... Butt.