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by Maelleous
Wed Jan 25, 2017 3:36 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What supplements
Replies: 23
Views: 3194

Re: What supplements

Someone also sent me a study (I can't figure out how to attach it here) that said Grape Seed Extract is great for colon cancer, might want to add that to your list. Turmeric (curcumin) as he mentioned is supposed to be great, and if you are not eating garlic, might want to add it as a supplement as ...
by Maelleous
Wed Jan 25, 2017 10:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Not allowed to do chemo / nervous
Replies: 19
Views: 3806

Re: Not allowed to do chemo / nervous

Thanks Maria. I spoke to several doctors about clinical trials, the ones I emailed forwarded my email to a few other people that have some. The only thing I would have to pay for is the flight. I am still waiting (should be a week or two) before I am able to get into Moffitt which is only 3 hours aw...
by Maelleous
Tue Jan 24, 2017 8:39 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Not allowed to do chemo / nervous
Replies: 19
Views: 3806

Re: Not allowed to do chemo / nervous

Thank you very much for the advice and input Maria. It has been extremely helpful, I emailed both places, not sure if I can qualify for either but will keep pushing forward.
by Maelleous
Mon Jan 23, 2017 12:44 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Not allowed to do chemo / nervous
Replies: 19
Views: 3806

Re: Not allowed to do chemo / nervous

I finally got some information on this, saw the cardio-oncologist today and they are near certain my cardiac arrest was from the 5-FU in chemo. Rectal adenocarcinoma, stage IIIc,pT 3, pN2 B, p.M0. Microsatellite stable, K‐ras, NRAS, BRAF testing shows no mutation. That is what his notes read. Please...
by Maelleous
Fri Jan 20, 2017 2:05 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Radiation / j-pouch
Replies: 3
Views: 1039

Re: Radiation / j-pouch

I've been reading up on it and it seems like radiation is a very bad idea for a j-poucher. Going to have to wait to see if I can do a different chemo, immunotherapy or just go all alternative treatment and pray.
by Maelleous
Fri Jan 20, 2017 8:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Radiation / j-pouch
Replies: 3
Views: 1039

Radiation / j-pouch

Today I am having a consultation with the Radiologist at Cleveland Clinic. Originally they stated that they would not recommend radaiation because of complications with the created j-pouch and ileostomy (temporary) but the oncologist wants me to explore it since I can't do chemo. Has anyone done rad...
by Maelleous
Fri Jan 20, 2017 8:10 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Not allowed to do chemo / nervous
Replies: 19
Views: 3806

Re: Not allowed to do chemo / nervous

Thanks Beans. I have done a bunch of research on statistics for surgery with chemo and without and I am surprised that the odds of reoccurrence/survival isn't as huge of a difference as I would have expected so that eased my mind a little bit. Yes I would still rather do it and have the peace of min...
by Maelleous
Fri Jan 20, 2017 5:45 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Not allowed to do chemo / nervous
Replies: 19
Views: 3806

Re: Not allowed to do chemo / nervous

Coyote, what chemo did you get put on? I am starting to think I need to look somewhere other than Cleveland Clinic as they don't seem to be giving me any options, they said all chemo' have some from of FU in them, which I found a little hard to believe.
by Maelleous
Fri Jan 20, 2017 5:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Immunotherapy trial for those NED
Replies: 16
Views: 4390

Re: Immunotherapy trial for those NED

Thank you Maria, I am def going to look into this, as this has a lot of potentail. Going to email them now!
by Maelleous
Fri Jan 20, 2017 5:33 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Continued problems from chemo 7 1/2 yrs after completion
Replies: 14
Views: 2537

Re: Continued problems from chemo 7 1/2 yrs after completion

I most likely had cardio toxicity that almost killed me from Folfox, at least that is what the doctors think. I am seeing a Cardio-Oncologist on Monday to find out. I have been doing a ton of research and after surgery, the odds of 5 year reoccurrence/survival is not a huge difference with or withou...
by Maelleous
Mon Jan 16, 2017 5:25 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Back to NED again!
Replies: 17
Views: 3023

Re: Back to NED again!

Congratulations! Stories like these give us all hope!
by Maelleous
Mon Jan 16, 2017 5:24 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Not allowed to do chemo / nervous
Replies: 19
Views: 3806

Not allowed to do chemo / nervous

I posted here last week. I had Cardiac Arrest on Dec 30th and it was speculated based on all available evidence it was from the chemo. The oncologist and cardiologists I have met with all believe it was from the chemo and the 5FU to be specific. They state that it would be too dangerous for me to ge...
by Maelleous
Mon Jan 16, 2017 7:56 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Colon Cancer (?) in a 19 year old
Replies: 11
Views: 6585

Re: Colon Cancer (?) in a 19 year old

That is great Mr Kane and I am really happy for you! I felt like I was reading my own story reading yours ---- almost exactly the same thing, since I am only 35 Drs keep writing it off as hemmoroids and I waited almost a year to get my rectal bleeding checked because I was young and it was unlikely....
by Maelleous
Mon Jan 16, 2017 7:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Chemo Nausea
Replies: 16
Views: 2741

Re: Chemo Nausea

Emend did not work for me (on FOLFOX) but I had a newer drug called Varubi that everyone told me I loved. My insurance would not cover it because it is newer and it is $320 a pill, but I thought it was still worth it. I had Sudden Cardiac Arrest on my 3rd treatment 2.5 weeks ago so I do not remember...
by Maelleous
Mon Jan 16, 2017 7:33 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Scared Newbie
Replies: 12
Views: 2238

Re: Scared Newbie

My dr told me almost immediately he suspected it was cancer. You likely caught it much earlier than I did, and while none of us can say for sure, if all you have to have a few extra polyps removed, consider yourself very lucky. Also like others have said, stay off google, you will terrify yourself n...

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