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by heiders33
Tue Jan 15, 2019 9:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 21
Views: 2567

Re: My CRC with liver mets journey

Hi Rebecca, happy to help answer your questions. I think you joined a couple of the Facebook groups, which is good because you'll get a lot more perspectives there. To answer your questions one by one: 1) I don't know the structure of Dr. K with the other oncologists at MSK. I would think if your cu...
by heiders33
Sun Jan 13, 2019 9:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSK patients with HAI pump - prep for Dr K meeting
Replies: 29
Views: 2529

Re: MSK patients with HAI pump - prep for Dr K meeting

Yes, you can eat at the 53rd St location. I've eaten entire meals, bagels with lots of cream cheese, etc. I am wary of anything that might be smelly, but as far as I know there are no rules about eating and not eating.
by heiders33
Sat Jan 12, 2019 2:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 21
Views: 2567

Re: My CRC with liver mets journey

I decided to get the pump as adjuvant therapy even though I had just one liver spot pop up after my initial stage III treatment. I decided this because: 1) I live in NYC as well, close to MSK!; 2) I am young (36 years old); 3) I have the KRAS mutation which makes certain treatments unavailable to me...
by heiders33
Mon Jan 07, 2019 8:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSK patients with HAI pump - prep for Dr K meeting
Replies: 29
Views: 2529

Re: MSK patients with HAI pump - prep for Dr K meeting

If you get the Medtronic pump, you will have to get it filled every two weeks. While in treatment, that’s chemo one week, and two weeks later saline, then repeat. But when treatment is over, you have to get it filled with saline every two weeks while you have it. I bet Northwestern will learn how to...
by heiders33
Wed Jan 02, 2019 5:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dr. D'Angelica or Dr. Kingham
Replies: 7
Views: 823

Re: Dr. D'Angelica or Dr. Kingham

That makes total sense! Definitely go with the best surgeon for your particular situation, if that indeed turns out to be the case.
by heiders33
Wed Jan 02, 2019 2:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dr. D'Angelica or Dr. Kingham
Replies: 7
Views: 823

Re: Dr. D'Angelica or Dr. Kingham

Dr. Kingham was my surgeon, but I've heard nothing but good things about Dr. D'Angelica. I don't know that I would choose a surgeon based on their geographical location, since you're really only going to see him a few times, and then for follow-up many months after surgery (unless there are complica...
by heiders33
Mon Dec 31, 2018 6:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hospitals that install HAI pump?
Replies: 70
Views: 8198

Re: Hospitals that install HAI pump?

OK, here is what I have been told: "my liver surgeon is from XYZ and he was coordinating a possible HAI pump with a colleague who does them from ABC. He looked everywhere to try get me a Codman pump and of course there are none available. I didn’t get specifics but he said they are having more...
by heiders33
Mon Dec 31, 2018 8:41 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hospitals that install HAI pump?
Replies: 70
Views: 8198

Re: Hospitals that install HAI pump?

I guess I’m just going off what Kemeny/Kingham told me. If you are concerned about it, you should definitely ask them and get their reaction firsthand. I can’t really speak from my own experience because I don’t have the Codman catheter. But my impression from Kemeny is that it’s a trial driven by M...
by heiders33
Mon Dec 31, 2018 12:24 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hospitals that install HAI pump?
Replies: 70
Views: 8198

Re: Hospitals that install HAI pump?

I have the Medtronic pump. I think I somehow slipped in before that trial started, because I don’t have the old Codman catheter. Not exactly sure how that happened. But anyways, the trial seems to be kind of a formality. It’s perfectly safe (notwithstanding the usual pump risks).
by heiders33
Sun Dec 30, 2018 1:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Hospitals that install HAI pump?
Replies: 70
Views: 8198

Re: Hospitals that install HAI pump?

They are doing that trial because Medtronic wants it, but Kemeny seemed to write it off as a bureaucratic thing when I asked her about it. I wouldn’t worry about it.
by heiders33
Thu Dec 27, 2018 4:03 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Finally....some really great news!!!
Replies: 85
Views: 24039

Re: Finally....some really great news!!!

That’s great news. Dr Kemeny and her office are the best. Just curious, I wonder why she said he shouldn’t have done FOLFOX? That’s a normal first line treatment.
by heiders33
Wed Dec 19, 2018 4:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 21
Views: 2567

Re: My CRC with liver mets journey

Ok thanks. I used to take Turkey Tail coriolus extract, which I ordered off Amazon, but I guess that isn’t as good as what you can get directly in Hong Kong.
by heiders33
Wed Dec 19, 2018 1:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 21
Views: 2567

Re: My CRC with liver mets journey

Thank you for sharing! Would you mind sharing specifically what Chinese medicine you are using?
by heiders33
Tue Dec 18, 2018 4:56 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question about platelets
Replies: 6
Views: 1040

Re: Question about platelets

Sounds like oncs differ - my platelets went down to 70 on chemo and my onc said he would delay if they stayed down, but I got them back up in time.
by heiders33
Sat Dec 15, 2018 11:15 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED - DEVASTATED
Replies: 37
Views: 3980

Re: No longer NED - DEVASTATED

Getting my appointment at MSK was exactly as mpbser described. The intake person managed the logistics with paperwork, etc., and after that was done I got my appointments very quickly. The hardest part was communicating with the other non-MSK surgeon (her office staff was terrible!) and getting my r...

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