Is there any trial available for bowel cancer

I am 51yrs of age.in August 13 I had a perforated bowel which required emergency surgery and they found a large tumor with 4nodes affected.I had 15 cycles of oxiplatine and 5fu.followed by 25cycles of radiation therapy.and joint oral chemo .because of my perforation I also ended up with a permanent colostomy.after spending several months in and out of hospital with a bowel blockage caused by radiation treatment I spent 6wks in hospital being tpn fed as I was malnourished due to not being able to eat.i had a bowel resection and now have permanent following.that was April 15.In Oct 15 I had my yearly check and scans including a pet scan.I was then told I had the mutation gene and that the cancer was still in pelvis and had also spread to liver and both lungs.they gave me world 6mnths.only treatment scalable was chemo. I chose not to have any more.i wanted to enjoy what time I have left and not be attached to the hospital.So I chose to live in ignorance.my husband and children are devastated but respect my wishes.However 1yr on I'm still here still very healthy I don't feel ill.i don't suffer with breathlessness or cough despite both lungs having several deposits on each so I question if they could have got the results wrong.my hospice nurse says it is strange but everyone s journey is different and to keep doing what I am.they did explain I could go down hill very quickly.i feel like a fraud.I feel that everyone is suffering whilst waiting for the benefit able to happen.i would like to no if anybody has any advice on any trials available I am healthy despite the cancer and I don't feel like I'm dying.any advice or information would be appreciated.I am not even sure who or what I should be talking to and who to ask.

  • Hello tracylr,

    I just wanted to welcome you to our forum. I am pleased to hear that you are doing well and don't feel ill. I know my colleague Steph has given you some good advice on this thread on how to find out information on clinical trials that may be available to you.

    I thought I would also also mention this link which contains information on how to find trials and how to join them.

    Our nurses are also available on this free number 0808 800 4040, Monday to Friday from 9am to 5pm if you have any question for them.

    Best wishes,

    Lucie, Cancer Chat Moderator
     

  • I'm so sorry about your bowel cancer diagnosis and also to your family. 

    I would also be interested in finding out about any trials for my Father who was diagnosed April last year (18 months ago) with stage 4 incurable bowel cancer which has spread to his lungs and liver. The cancer had already spread by the time he was diagnosed. He's been having palliative chemotherapy and only recently has lost his hair. He had a bowel obstruction July last year and emergency surgery was needed to save him which meant they cut the cancer out of his bowel. But because it is in his lungs and liver and described as being like tiny grains of sand there isn't much they can do, only try and prolong his life with chemotherapy with no chance of a cure. They did ask him if he wanted to know how long but he said he didn't want to know and their reply was 'all we can say is that your life will be drastically shortened.' Well 18 months on and he's still going strong, we hope he will continue this way for a good while yet. But in the mean time we always hope a magic cure will come out and save him. I'm not sure how old your children are but I'm 27 so I was 26 when my dad was diagnosed. I also have an older sister and a brother of only 25. My dad chooses not to give up not without a fight, he's still very much active and takes manuka honey every day which we believe has really helped him and his immune system.