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by Rikimaroo
Fri Sep 06, 2019 11:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: CEA jump from 2.8 to 33 in 6 weeks -- what to make?
Replies: 21
Views: 1768

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make?

I don't want to scare you but my CEA gradually went up from .8 to 22. Over a course of six months and the pet scan showed clear, then after six months the pet scan showed something in the pelvic region. My CEA has been a good indicator for me. They put me back on Chemo FOLFIRI and now my CEA is 1.5,...
by Rikimaroo
Fri Aug 30, 2019 11:25 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Diagnosed while working abroad
Replies: 33
Views: 1839

Re: Diagnosed while working abroad

This place from what I heard is one of the top institutions around the world and big on cancer treatment. https://www.heidelberg-university-hospital.com/home/ I am not sure how far you live from there, but I would assume there are other places. Give them a call and as about colorectal surgery, neoad...
by Rikimaroo
Wed Aug 28, 2019 5:28 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Did anyone ever decide to go back to ileostomy after reversal
Replies: 34
Views: 4816

Re: Did anyone ever decide to go back to ileostomy after reversal

Your right Stu and I agree wholeheartedly. I sent a message to my oncologist and he said it like this bluntly, rikimaroo stop going off on tangents and messing around this is your life we are talking about and you already made a mistake before don't make it again. He is right, these guys know what t...
by Rikimaroo
Wed Aug 28, 2019 9:16 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Did anyone ever decide to go back to ileostomy after reversal
Replies: 34
Views: 4816

Re: Did anyone ever decide to go back to ileostomy after reversal

Update - So currently the pelvic recurrence based on MRI states lesion with Fibrotic Signal. Typically that means dying tissue, or nothing. However Cleveland Clinic here in Weston is referring me to the CC in Ohio and I spoke to there Dr. Scott Steele. He suggested I do surgery with Intraoperative R...
by Rikimaroo
Wed Aug 28, 2019 9:01 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Different treatment in Germany
Replies: 22
Views: 1268

Re: Different treatment in Germany

My source in regards to Carbon-Ion not being available in the USA is a pretty seasoned Radiation Oncologist. You can look him up, Dr. Marc Apple. He has been doing this for a long time and mentioned to me that Carbon-Ion is the way to go, extremely targeted method of killing tumors. He mentioned Ger...
by Rikimaroo
Mon Aug 26, 2019 10:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cleveland Clinic ?
Replies: 8
Views: 593

Re: Cleveland Clinic ?

Maelleous,

Who was your doctor and oncologist. My surgeon is Dr. Wexner and oncologist Dr. Nagarajan. How is life post reversal?
by Rikimaroo
Sat Aug 24, 2019 2:14 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Different treatment in Germany
Replies: 22
Views: 1268

Re: Different treatment in Germany

Germany has one of the TOP radiation centers in the world with new carbon technology. It's better then US radiation treatments and less damage from it. US is the slowest from all the other countries when it comes to cancer treatments and advancements. https://www.heidelberg-university-hospital.com/d...
by Rikimaroo
Fri Aug 23, 2019 3:58 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Cleveland Clinic ?
Replies: 8
Views: 593

Re: Cleveland Clinic ?

I go to Cleveland Clinic in Weston and from what I have read they are a TOP hospital for CRC (Colorectal Cancer, Surgery and Treatment). There staff is so nice and patient and friendly. The doctor's take there time with you and do not rush you out. The Radiation Oncologist Marc Apple who use to work...
by Rikimaroo
Tue Aug 13, 2019 5:42 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Questions about Health Insurance
Replies: 2
Views: 387

Questions about Health Insurance

So I currently have Myblue HMO with BCBS...Through Healthcare.gov as I own my own business and its more cheaper, but a hell of a good plan, myblue Silver, i pay $200 a month for it. It's actually really great. The only downfall is that it doesn't cover out of state, it doesn't have the bluecard opti...
by Rikimaroo
Sun Aug 11, 2019 1:45 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: ULAR + ileo tips welcome!
Replies: 16
Views: 1557

Re: ULAR + ileo tips welcome!

Rock I never took Imodium with ilestomy. It will get thicker soon, just be patient. You don't need the Imodium, just let it flow naturally and empty it when needed. My output at beginning was watery as well but started to get thicker as the days went along. It becomes really easy to switch out the b...
by Rikimaroo
Sat Aug 10, 2019 1:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Quick question - chemo and reversal surgery
Replies: 14
Views: 867

Re: Quick question - chemo and reversal surgery

Yeah its the 2mg but prescribed, I will take a look and let you know.
by Rikimaroo
Thu Aug 08, 2019 10:33 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Quick question - chemo and reversal surgery
Replies: 14
Views: 867

Re: Quick question - chemo and reversal surgery

Wow that's quite a surgeon. My surgeon is Dr. Steven Wexner Clevenald Clinic. He is the director of the Colorectal Surgery Dept here in South Florida Weston, Cleveland Clinic brand. He is world renowned. Glad you have a capable surgeon. You know I am doing good mostly, have the recurrence MRI schedu...
by Rikimaroo
Thu Aug 08, 2019 3:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Quick question - chemo and reversal surgery
Replies: 14
Views: 867

Re: Quick question - chemo and reversal surgery

Rock, I waited a month after chemo for surgery. CRguy hit the nail on the head. Risk of infection is very high with low WBC/Neutrophils. Also healing is an issue. Your surgeon is tripping if he thinks a week out of chemo is a good time to do surgery very surprised he said that, but he is not an onco...
by Rikimaroo
Thu Aug 08, 2019 3:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Introducing myself, to a club I didn’t think I’d ever be a member of.
Replies: 9
Views: 951

Re: Introducing myself, to a club I didn’t think I’d ever be a member of.

Mike, get ready for a rollercoaster of pain, annoyances and then recovery and back to your normal self, well close to your normal self. Let me explain. I had rectal cancer 9cm from anal verge. The first thing they do is what they did to you. Biopsy find out if its benign or malignant. Once that is d...
by Rikimaroo
Sun Aug 04, 2019 11:29 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Can we please talk about colostomies/ileostomies?
Replies: 13
Views: 970

Re: Can we please talk about colostomies/ileostomies?

It’s very intimidating the first 2 weeks then after you find it a breeze to change manage and your good to go. I was nervous I had temp ileostomy for six months. I miss my bag cause I didn’t have to worry about unpredictable bathroom trips, 30-40 minutes on toilet only to think your done then boom y...

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