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by ginabeewell
Wed Jul 01, 2020 12:02 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Girlfriend wants to come to appointments
Replies: 12
Views: 788

Re: Girlfriend wants to come to appointments

Are you sure you’ll have that decision to make? Most medical centers are not allowing anyone but the patient (unless the patient is near death). I think if I were in your shoes I would just discuss what you want her role to be and not be. I rely on my husband to be the note taker and the hard questi...
by ginabeewell
Mon Jun 29, 2020 11:23 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PET scan after CEA rise...
Replies: 4
Views: 398

Re: PET scan after CEA rise...

I too did Vectibix - once with FOLFOX and about to restart with FOLFIRI. The rash is no joke. My onc referred to it as “treatable” but a very Christian fellow patient told me that being on it was as close as she ever came to losing faith in God. She had a very extreme reaction, but even so, it pays ...
by ginabeewell
Thu Jun 11, 2020 1:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 344
Views: 73410

Re: My CRC with liver mets journey

Kemeny finally saw my scans and I had my first Telehealth appointment. One spot was smaller; the other stable. Between size and position, she says they aren’t operable or an option for ablation. She wants me to add Vectibix back into the mix in the hopes that the more aggressive treatment will help....
by ginabeewell
Tue Jun 09, 2020 6:06 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Well, its been a minute
Replies: 15
Views: 1856

Re: Well, its been a minute

He won't return to Cleveland clinic. For anything I feel like he's looking for and excuse to quit now I forgot you guys had an experience there already. It's University of St Louis who is doing this new test, but sounds like he may not be in the right frame of mind to explore? I'm sorry. It's so, s...
by ginabeewell
Tue Jun 09, 2020 11:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Another clear CT, again!
Replies: 13
Views: 1797

Re: Another clear CT, again!

Good for you! And what a relief. Enjoy breathing a little easier the next few months!!
by ginabeewell
Tue Jun 09, 2020 11:00 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Well, its been a minute
Replies: 15
Views: 1856

Re: Well, its been a minute

I know a few patients who were on FOLFIRINOX so it’s not without precedent - not sure about that AND Vectibix however, that sounds like a lot. A friend of mine is working with the U of St Louis which is apparently doing tests for live liver transplants. Early on this was something I explored at the ...
by ginabeewell
Thu May 28, 2020 7:53 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Dr. K patients-what’s the plan?
Replies: 4
Views: 1071

Re: Dr. K patients-what’s the plan?

Last week they called to ask me to book my scans locally and then have a telemedicine conference with Dr K. I’m in active chemo treatment right now, and I wish I felt better about the coordination between MSK and my local center, Northwestern. I think things will be ok, but I will feel a lot better ...
by ginabeewell
Thu May 28, 2020 6:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 344
Views: 73410

Re: My CRC with liver mets journey

Hi there I was reading your journey and had a few questions. My husband was diagnosed in 2016( age 45) with CRC Stage 2B and had surgery and then did Xeloda for 6 months after. All scans and bloodwork have been normal until 1 month ago. On his last scans the noticed a 7cm spot on his Liver but noth...
by ginabeewell
Tue May 26, 2020 6:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 344
Views: 73410

Re: My CRC with liver mets journey

Teenagehood is a difficult period to start with - even without the added struggles of cancer. Your stepdaughter is probably very scared, and because of the situation (mother available as an alternative place to stay), she has the opportunity of going away - by not seeing you, she can block somethin...
by ginabeewell
Tue May 26, 2020 3:30 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 344
Views: 73410

Re: My CRC with liver mets journey

Gina, you have been managing your cancer stress very well to have done it for 18 mths. Its ok to let whatever emotions out for your own well being without apologies. The fact that family is stressed out is a whole other issue. Some selfishly take advantage of a loved ones dx and others have those t...
by ginabeewell
Tue May 26, 2020 10:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 344
Views: 73410

Re: My CRC with liver mets journey

Cancer is never a dull moment. I had a bad night about a week ago. I got sad / mad and sort of lost my shit - not at anyone, just at the cancer itself. This recurrence has really been difficult to process and between it and work stress (20% pay cut anyone?) and Covid, I just hit a wall. Anyway, my h...
by ginabeewell
Tue May 19, 2020 11:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSK friendly lodging in NYC
Replies: 8
Views: 1141

Re: MSK friendly lodging in NYC

Oh, and there is also the Hope Lodge. That is free but can be hard to get into. If your friend is having trouble affording accommodation, please encourage them to reach out to an MSKCC social worker. I have heard from people in the waiting room how wonderful they are at helping with lodging, someti...
by ginabeewell
Mon May 04, 2020 7:39 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSK friendly lodging in NYC
Replies: 8
Views: 1141

Re: MSK friendly lodging in NYC

There is a Courtyard by Marriott that is literally in the same building practically. We liked to stay at the Maxwell, which is a few blocks walk. Sunday nights usually cost $125 or so. And I bet prices are even lower these days!
by ginabeewell
Mon Apr 13, 2020 10:38 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 344
Views: 73410

Re: My CRC with liver mets journey

I think the shift to Folfiri is just to shake things up a bit. Folfiri is a strange beast - some people find it much easier to handle than Folfox, others are miserable. I needed Atropine during each Folfiri infusion for abdominal cramping and diarrhea. But I didn't have HFS like with Folfox and Xel...
by ginabeewell
Fri Apr 10, 2020 2:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: My CRC with liver mets journey
Replies: 344
Views: 73410

Re: My CRC with liver mets journey

Dr Kemeny reviewed the scans and agreed the lesions represent new activity. She wants to keep me on Vectibix and start me on FOLFIRI (previously had done FOLFOX) as well as pump chemo. Not sure I expected anything different, but worried about the shift to FOLFIRI - what that means in terms of them f...

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