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by Ehut
Sun Aug 12, 2018 7:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any Stage 4 long term survivors/cured ?
Replies: 23
Views: 2847

Re: Any Stage 4 long term survivors/cured ?

I have been clear for over 6 years now. My oncologist and surgeon say I don't need any more scans, just annual CEA monitoring. I was stage 4 with 6 mets to my liver. I don't think I will be comfortable with the term "cured" until I hit 10 years.
by Ehut
Thu Jul 26, 2018 8:32 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Short course radiation? 3D or IMRT?
Replies: 4
Views: 280

Re: Short course radiation? 3D or IMRT?

The reason I chose short course was so they could do surgery sooner since my liver had responded fairly well to the pre-surgery chemo. If the cancer was not metastatic, then I would have probably done the standard course chemo-radiation.
by Ehut
Thu Jul 26, 2018 3:51 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Short course radiation? 3D or IMRT?
Replies: 4
Views: 280

Re: Short course radiation? 3D or IMRT?

Hi! I had short course before surgery. It was done at Mayo- Rochester with a proton beam radiation machine. The only side effect I had was fatigue but it could have been from the lar surgery done a couple of days after completion of radiation. It sounds like it is way easier on your body than long ...
by Ehut
Tue Jul 24, 2018 10:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: HELP.....Oxaliplatin allergy
Replies: 6
Views: 343

Re: HELP.....Oxaliplatin allergy

I had the allergic reaction to Oxaliplatin at my 5th or 6th infusion. They finished that infusion with just 5FU, Leucovorin, and Avastin. The remaining cycles were with Folfiri. The way my oncologist explained it, the 5FU does 90% of the work. The Oxaliplatin or Leucovorin only helps a little bit.
by Ehut
Thu Jul 12, 2018 9:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 6 years NED after stage IV
Replies: 23
Views: 2180

Re: 6 years NED after stage IV

Ehut, Thank you so much for posting and Big Congratulation to you!! :D It is wonderful to see members here coming back to share good News. Can I ask if you know if your tumor(s) had any mutations and/or MSI/MSS status? It's been so long I don't even remember the mutation status. I tried to access m...
by Ehut
Mon Jul 09, 2018 1:47 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 6 years NED after stage IV
Replies: 23
Views: 2180

Re: 6 years NED after stage IV

Thanks Ehut, Thats awesome information and really appreciate it. I only had one liver met, but always and still nervous about recurrence. I pray that I have your luck. I have 3 little ones that need there Dad around. I know the feeling. My daughter was only 19 months old when I was diagnosed. I rem...
by Ehut
Mon Jul 09, 2018 1:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 6 years NED after stage IV
Replies: 23
Views: 2180

Re: 6 years NED after stage IV

what kind of lifestyle changes did you make? Congrats on being ned I started out taking several supplements: Cimetidine, Coriolus Versicolor PSK, modified citrus pectin, 81 mg aspirin, vitamin C, multivitamin, and psyllium husk fiber. Now I only take aspirin, CoQ10 Ubiquinol, and psyllium husk fibe...
by Ehut
Mon Jul 09, 2018 1:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 6 years NED after stage IV
Replies: 23
Views: 2180

Re: 6 years NED after stage IV

mpbser wrote:Thank you for posting. I am curious how many nodes were cancerous as my husband is/was Stage IVa with one met to the liver but quite a high number of nodes involved.


2 of 45 nodes were positive. The liver had 6 tumors, and all were removed surgically.
by Ehut
Mon Jul 09, 2018 10:27 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 6 years NED after stage IV
Replies: 23
Views: 2180

6 years NED after stage IV

Hello all, Just thought I'd share that I had a CT scan last week and am still NED. I have been NED for 6 years now, and my surgeon suggested this be the last scan I need since nothing has been found by now. I truly empathize with the other board members with less successful outcomes, and hopefully t...
by Ehut
Thu Apr 19, 2018 10:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: PET scan result
Replies: 8
Views: 1869

Re: PET scan result

Hello SoConfused, So sorry to hear that you are dealing with a possible recurrence, especially so far out from the original diagnosis. I was diagnosed in 2011, so it is a bit jolting to see that recurrence is still possible when things are going well for so long. Hopefully your situation turns out t...
by Ehut
Sat Apr 07, 2018 9:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Fertility Post FOLFOX
Replies: 5
Views: 664

Re: Fertility Post FOLFOX

I was told to wait 2 years post chemo/radiation before attempting to conceive. However, it took around 3 years for my counts to come back to normal. They were ZERO for over a year after treatment ended. FYI, we conceived a baby around year 4.
by Ehut
Sat Apr 07, 2018 12:13 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer
Replies: 45
Views: 11817

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

mypinkheaven wrote:AllieG33 and Roscoe were both talking about getting metastatic tumors treated with proton radiation therapy.


I was talking specifically about Mayo clinic since that is where I got my treatment.
by Ehut
Fri Apr 06, 2018 4:48 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer
Replies: 45
Views: 11817

Re: Proton Therapy for Liver Metastasis from Stage 4 Colon Cancer

When I visited the Mayo Clinic in Rochester, Minnesota last year, they offered proton beam therapy. It was advertised as less harmful to surrounding tissues. Just letting people know of another medical facility that offers it. I just wonder if they would be willing to treat metastatic tumors in the...
by Ehut
Fri Mar 02, 2018 9:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any Stage IV currently in NEDville? Please share any advice or tips? P
Replies: 67
Views: 10166

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

I took several supplements after chemo ended: modified citrus pectin, coriolus versicolor PSK, Cimetidine, and Aspirin. Ehut, This is a rare combination! I have heard of Citrus Pectin, PSK and Aspirin. Can you share what are the exact benefits of Cimetidine? My Onc don't believe in supplements, so ...
by Ehut
Wed Feb 28, 2018 6:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Any Stage IV currently in NEDville? Please share any advice or tips? P
Replies: 67
Views: 10166

Re: Any Stage IV currently in NEDville? Please share any advice or tips? P

My response might be different than some... I was stage IV with 6 liver mets, diagnosed in late 2011, with chemo, radiation, surgery, and more chemo ending in 2012. I have been NED ever since surgery, which was almost exactly 6 years ago. I took several supplements after chemo ended: modified citrus...

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