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by Mastan
Mon Apr 11, 2016 8:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need advise and experiences please...NED no longer!
Replies: 9
Views: 2001

Re: Need advise and experiences please...NED no longer!

I would be inclined to ablate first and do chemo second simply to reduce the tumor load. However since you have metastic disease ( like me) you will also want to know if the chemo can arrest it. If it can't arrest the growth then it won't matter that you had ablation because it will come right back....
by Mastan
Sun Apr 10, 2016 9:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: There is hope-Nivolumab
Replies: 4
Views: 1322

Re: There is hope-Nivolumab

Consider yourself as one who won the lottery. Lynch syndrome represents only 3-5% of CRC cases and is characterized by MSI mutation. This mutation is the only known CRC mutation known to respond to targeted PD-1 therapy. For the rest of us (overwhelming majority) there is no currently effective targ...
by Mastan
Thu Mar 31, 2016 10:11 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Patty Duke: Actress Dies at Age 69 ruptured intestine
Replies: 6
Views: 1920

Re: Patty Duke: Actress Dies at Age 69 ruptured intestine

There has been no info put out there on the cause of the rupture. It could have ulcerative colitis (UC), Chrons disease, colon cancer etc..
by Mastan
Tue Mar 29, 2016 8:42 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Need help or suggestions please....
Replies: 8
Views: 1644

Re: Need help or suggestions please....

Your husband is going to have to start wanting to help himself in order to deal with the treatments that he will ultimately require. Is he taking something to slow his bowels? Also he should just embrace the need for depends and get on with the testing. I had to use them for a while after radiation ...
by Mastan
Sun Mar 27, 2016 10:00 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Preparing for 1st FOLFOX infusion on Monday - what to eat?
Replies: 12
Views: 2268

Re: Preparing for 1st FOLFOX infusion on Monday - what to eat?

Looks like most of the responses are concerned with nausea. However diarrhea is a very common side effect. Generally one is given atropine to deal with that side effect. I prefer not to eat prior to the infusion to avoid diarrhea. I have had many cycles of FOFLFOX and found that food in my stomach p...
by Mastan
Sun Mar 27, 2016 9:48 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 2nd Surgery Done - Chemo next?
Replies: 11
Views: 1996

Re: 2nd Surgery Done - Chemo next?

Yep secondary bowel in both lungs. Surgery to remove two nodules in right and one in left lung. I was stage 1 no node infection 3 years ago so didn't have post operative chemo back then Keep on top of the lung mets as best you can and watch your CEA level. The faster you deal with issues the better...
by Mastan
Sat Mar 26, 2016 10:29 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: 2nd Surgery Done - Chemo next?
Replies: 11
Views: 1996

Re: 2nd Surgery Done - Chemo next?

Hi all, I've just had my second lung surgery in six week to remove secondary bowel cancer and whilst I'm recovering well my attention has moved to whether I should now undergo a course of mop up chemo. Has anyone had follow up chemo or opted for 3 month checks instead.? Views or thoughts welcomed I...
by Mastan
Sat Mar 26, 2016 10:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Severe Constipation After Colectomy Please Help
Replies: 18
Views: 5934

Re: Severe Constipation After Colectomy Please Help

Thanks for the responses. I am going to give them a try. I am miserable. I was up all night, stomach hurts, and there is no action in my bowel movements. Instead I have started to throw up. I do not have a fever so I assume I still just have to try to go to the bathroom but this is horrible. I thin...
by Mastan
Tue Mar 22, 2016 9:11 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Rising CEA, clear scans for 6 months
Replies: 7
Views: 5064

Re: Rising CEA, clear scans for 6 months

This article has some info about CEA levels during surveillance periods, including this comment "Studies have demonstrated a lead time of 1.5 to 6 months between elevation of serum CEA levels and detection of recurrent disease by other means." Notably, it also says "False positive el...
by Mastan
Mon Mar 21, 2016 10:11 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Side effects calf cramping and painfully tight
Replies: 23
Views: 4391

Re: Side effects calf cramping and painfully tight

I did 8 cycles of FOLFOX 5 years ago after the resection. I stopped at 8 because of severe cramping in my back that affected my breathing. The cramps always happened about 36 hrs post infusion. Well the Onc did not put 2 and 2 together at the time. Since then I have had a recurrence and I am back on...
by Mastan
Sat Mar 12, 2016 6:40 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Follow up protocols
Replies: 21
Views: 2843

Re: Follow up protocols

Based upon my experience, I would be watching the CEA closely. (Prior to any treatment I was staged at T3N0M0 but I had perineural invasion) If the CEA starts to creep up then I believe a scan is needed at some point. My CEA crept up over a span of a yr. and then held study and just fluctuated about...
by Mastan
Sat Mar 12, 2016 11:25 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Oncology and hiding info
Replies: 27
Views: 5791

Re: Oncology and hiding info

I hope you have a better tolerance for Xeloda then I did. I was on it for about 3 mos. At first no problems but gradually the hand foot syndrome symptoms began. The irriatation in my feet became so bad that I developed an infection on one of my big toes that ended up with a surgery to remove part of...
by Mastan
Fri Mar 11, 2016 3:37 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Difficult decision: ULAR or APR?
Replies: 15
Views: 3736

Re: Difficult decision: ULAR or APR?

FYI APRs often result in sexual disfunction. I am proof of that. Of course I had .my family many years ago so... Regarding lifestyle issues with an APR, I was very active with cycling, downhill skiing, and mountain climbing. So no big restrictions except for heavy lifting. You will always be prone t...
by Mastan
Sun Feb 07, 2016 12:08 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: I thought it was over...wrong
Replies: 25
Views: 3867

Re: I thought it was over...wrong

In my experience as long as one gets chemo the problem will not go away. One can learn the cycles of the bowel as it goes between the extremes of constipation and diarrhea during chemo and take meds to manage them fairly well. Because I have an ostomy I will always error on the side of loose stools....
by Mastan
Fri Jan 29, 2016 2:15 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What were your symptoms like before you were diagnosed?
Replies: 15
Views: 17510

Re: What were your symptoms like before you were diagnosed?

Instead of letting your imagination run away. Please go see a GI doctor and get some facts. This site gets bombarded with people who are worried but have not done due diligence to actually find out if they have a problem. This site is a community of welling meaning people who are not physicians. If ...

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