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by mpbser
Sat Dec 15, 2018 12:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED - DEVASTATED
Replies: 37
Views: 1586

Re: No longer NED - DEVASTATED

Yeah, I was fortunate to already have had copies of pretty much everything so I could send them directly myself to MSK. I keep on top of that because I know how important record-keeping is (the lawyer in me).
by mpbser
Sat Dec 15, 2018 6:04 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED - DEVASTATED
Replies: 37
Views: 1586

Re: No longer NED - DEVASTATED

I don't know what you mean by "Was it difficult to get the appointment?" The intake person at MSK is wonderful and very helpful. She is the only person you deal with at first until MSK receives all the records it needs, reviews them, and decides you are a candidate to see Dr. Kemeny and ag...
by mpbser
Fri Dec 14, 2018 6:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED - DEVASTATED
Replies: 37
Views: 1586

Re: No longer NED - DEVASTATED

We got an appointment with Dr. Kemeny for right after Christmas. What a relief! Might just have a peaceful Christmas knowing we will be in good hands.
by mpbser
Fri Dec 14, 2018 1:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Still NED!! Bit curious about surveillance scans
Replies: 8
Views: 336

Re: Still NED!! Bit curious about surveillance scans

First off, congrats on the NED status! It's interesting to see that you have separate MRIs for the liver and pelvis. My husband only gets "Abdominal MRIs" done. So, initially, the oncologist said he would have every 3 months CTs (chest and upper body) and MRIs, alternating. Then, after his...
by mpbser
Fri Dec 14, 2018 7:43 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED - DEVASTATED
Replies: 37
Views: 1586

Re: No longer NED - DEVASTATED

Thanks, gravelyguy.

Could you tell me how many nodes were positive in your case? I notice you have a somewhat similar profile to my husband but did more chemo than my husband did. My husband's weak chemo regimen so far definitely has me a bit concerned.
by mpbser
Fri Dec 14, 2018 6:57 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED - DEVASTATED
Replies: 37
Views: 1586

Re: No longer NED - DEVASTATED

I believe Dr. Kemeny is definitely worth consulting although I still have yet to meet her. I have heard many stories on here of people deemed incurable by their oncologists, with numerous liver mets, who have gone to her and are still alive and kicking. HERE IS THE MOST LATEST UPDATE: We went to Mas...
by mpbser
Wed Dec 12, 2018 5:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question for Dr. Kemeny's patients
Replies: 3
Views: 182

Re: Question for Dr. Kemeny's patients

Good to know, thanks for the input. And CONGRATS on your NED status!
by mpbser
Wed Dec 12, 2018 4:57 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question for Dr. Kemeny's patients
Replies: 3
Views: 182

Question for Dr. Kemeny's patients

Does she allow chemo to be done at local cancer centers?
by mpbser
Tue Dec 11, 2018 4:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED - DEVASTATED
Replies: 37
Views: 1586

Re: No longer NED - DEVASTATED

I just found out that a good family friend of ours father has been a patient of Dr. Kemeny. Family friend had been recommending MSK to us in the early stage of our journey but our preference had been Mass General or Dana Farber at the time. She credits Dr. Kemeny for saving her father's life. Appare...
by mpbser
Tue Dec 11, 2018 4:35 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Heartbroken
Replies: 12
Views: 527

Re: Heartbroken

So sorry to hear about your loss. I am really awful at giving condolences, but my heart goes out to you.
by mpbser
Tue Dec 11, 2018 2:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED - DEVASTATED
Replies: 37
Views: 1586

Re: No longer NED - DEVASTATED

Thank you all for your input. My husband's surgeons at MGH were phenomenal and we are very glad he had his colectomy there. Switching to MSK after this experience feels like a no brainer to us. We are on track with MSK to get in to see Dr. Kemeny. We live equidistant to both Boston and NYC, so MSK i...
by mpbser
Tue Dec 11, 2018 6:54 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED - DEVASTATED
Replies: 37
Views: 1586

Re: No longer NED - DEVASTATED

Just to be clear, the night we got back from Boston, I faxed the hospital a request for records to their records department that my husband signed. Mass General is a massive machine and they will just send out records when authorized by the patient.
by mpbser
Mon Dec 10, 2018 3:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED - DEVASTATED
Replies: 37
Views: 1586

Re: No longer NED - DEVASTATED

My husband loves his liver surgeon at Mass General, so I think that if he is going to stay st Mass General for surgery, he can't leave his oncologist. I want him to go to Dr. Kenemy at MSK, as I have heard so many wonderful things about her, but I just don't know what he is going to want to do. I ha...
by mpbser
Mon Dec 10, 2018 3:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: No longer NED - DEVASTATED
Replies: 37
Views: 1586

No longer NED - DEVASTATED

Good lord am I upset. I got my husband's MRI report in the mail today, one week after going out to MGH to have it done. No one called us. I just finished reading the report. He has new mets. At least one, maybe two. HE SHOULD HAVE DONE MOP UP CHEMO! I am PISSED at his oncologist. I am PISSED I got t...
by mpbser
Fri Dec 07, 2018 6:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rectal cancer diagnose with isolated tumor cells (ITC)
Replies: 22
Views: 2081

Re: Rectal cancer diagnose with isolated tumor cells (ITC)

Oh, wait, I forgot he did Xelox... The OX would have worked on the CTCs. Silly me. It's been a long week.

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