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by heiders33
Thu Jan 31, 2019 6:21 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 5FU infusions
Replies: 20
Views: 2789

Re: 5FU infusions

Yes, MSK absolutely lets you disconnect on your own. They sent me home with detailed instructions and all the supplies I need. I get connected on Wednesday and disconnect on Friday morning. It takes me about ten minutes to disconnect. You just have to follow each step in order to prevent infection a...
by heiders33
Tue Jan 29, 2019 6:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Happy Post- Rectal Metastatic to Liver, now cured
Replies: 14
Views: 2356

Re: Happy Post- Rectal Metastatic to Liver, now cured

Wow, your signature is VERY similar to mine! I am in the middle of HAI treatment and hope to be where you are one day.
by heiders33
Sun Jan 27, 2019 4:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Coping at work while on rectal cancer treatments
Replies: 10
Views: 1856

Re: Coping at work while on rectal cancer treatments

Dear all - thanks for sharing your work situation while coping with the treatment ! It gave me an idea of how best to manage my expectations and work place responsibilities over the next few months ! I'm sorry to hear that some of you are in an employment situation that is less than ideal, it sucks...
by heiders33
Fri Jan 25, 2019 6:02 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Coping at work while on rectal cancer treatments
Replies: 10
Views: 1856

Re: Coping at work while on rectal cancer treatments

1) How long were you off work in order to recover for the surgery ? 2) Did you continue going to work while on the mop-up chemo ? 3) And if you did continue going to work, how did you cope with the fatigue and all ? 4) Were you able to resume work as per normal after the chemo ended ? 1) I took two...
by heiders33
Fri Jan 18, 2019 10:46 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: This chemo is knocking me down
Replies: 13
Views: 1916

Re: This chemo is knocking me down

I agree on the steroids. I don’t think I realized until later how much they made me feel not like myself. I would sit on the couch in a sort of catatonic state. I would watch funny stuff on TV and not even laugh. It was weird, but it did go away.
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: 385
Views: 120171

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: 37
Views: 6887

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: 385
Views: 120171

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: 37
Views: 6887

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: 1632

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: 1632

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: 73
Views: 17789

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: 73
Views: 17789

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: 73
Views: 17789

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: 73
Views: 17789

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.

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