New to bowel cancer!

Hi

Just want to welcome you to the forum . 
Hope your treatment is going ok !

So pleased to hear your offer to answer questions . It’s so good when people share like that and it comes from experience. It’s what makes the forum such a valuable resource to others  

Take care ,

Court 

Hi. I was diagnosed with small bowel cancer back in December. Had op but not successful. Having 12 rounds of chemo. Next is sixth then scan of small bowel to see how things going. Very worried bout weight loss. Started at 55 kgs down now to 52kgs. Dietician has me on supplements.n

Hi Debbie R

Like you I was diagnosed in January and had surgery in March.  It was found in 7 out of 20 lymph nodes hence I begin 12 cycles of two weekly Chemo, plus 48 hour pump, on Tues 11th.

Best wishes with your remaining treatments.

Nettie123

You say your op was not successful. why not? Did they not manage to remove all the cancer?

Hi Debbie R. 

I had the operation on a Wednesday afternoon and then I was left back in ward with nobody telling me how op went. When I came around of course I assumed all had went well and started telling my family and friends. I was heartbroken when the surgeon came around the next morning and told me it had not been successful as he said it was to spread out was the words he used. He then told me I would have to go down the route of chemotherapy and if that did not work  it would be very serious. 

The Dietician spoke to me on Friday past and is putting me on supplements including Cal shake and Pro cal shot. I know the first one is a powder and you blend it with milk. My weight loss is my main problem and I have been told that tumours in the bowel do take calories away from any food you eat. If the weight keeps coming of me I will end up 7 stone by end of May. Also weight loss reduces energy which is depressing. 

Sorry to hear you've had this problem. The chemotherapy should help. Will they operate again? I wasn't told anything about my operation until the next morning either. It's always a bit of a shock to be told what they've done or found. I was expecting a small section of my bowel to have been removed. The surgeon then told me they had taken away 10 inches of bowel and that it was a bigger operation than they expected.

I have lost 2 stones since my operation, but I was overweight anyway and so not a problem. I have deliberately kept my meals small so I can lose a bit more weight (and not have to poo so big!!). You must be a slim person already I am assuming. The lady in the bed opposite me when I was in hospital only weighed 6.5 stone when she had her op and they were giving her shakes and high calorie drinks so she didn't lose anymore weight. The weight loss stopped but she hasn't put that much back on. Lucky for her, she needed no further treatment after her op.

Hope you get sorted out soon. I'm having chemo and apart from feeling a bit tired, I have been OK. My best advise is to stay positive, even though it seems difficult sometimes. These chat rooms have really helped me. xx

Hi Debbie

I have been told they would operate if my bowel became blocked where the tumours are. They said if I start vomiting and can not have a bowel movement to go straight to A&E. I was always a slim build because I suffer from Crohn's disease, was never over 9 stone since 1992. Did u have a operation on your small or large bowel!! That lady was very underweight that was beside you.

I try and stay positive if I can but do wake up in middle of night and can not get back to sleep.

App after sixth round of chemo which is my next one I will be having scan of small bowel to see how things are progressing. I was told there is over 50 types of chemo and if it is found from scan that this type of chemo is not working for me I will be put on a different one. 

Yes I definitely find that these chat rooms do help as you feel you are not alone when you can talk to somebody that is going through what you are going through. XX

Hi Debbie and all in this thread

My bowel perforated in March 2020, and I had my ascending colon removed, in hospital post operation for 3 weeks, recovering from surgery, and the infection caused by the cancer.  I lost 3.5 stone, as I was only allowed water ans small bits of food for the first 2 weeks, due to the medication I as on, and for the bowel to recover from surgery.

Home after three weeks, then started chemotherapy (cetuximab and 5FU) - 12 fortnightly sessions - 6 sessions in CT Scan showed shrinking cancer cells and small blood clots on both lungs (twice daily blood thinning injections to resolve the clots), 12 sessions end, CT Scan showed no 'visible' signs of cancer , so chemo worked in slowing down the spread, but it's still there in the background - weight at 87kgs, down from pre-op in March weight of 115 kgs.

6 months on, weight back up, eating well, CT Scan shows Lymph Nodes have active cancer cells, however organs are clear!

New 12 sessions of chemo, of FOLFOX, starts shortly.

Hoping this will be a repeat of before, treatment - scan shows 'sleeping'' again, 6 month period - back again, and so it goes on, hopefully for many years!!

Who knows what new treatments may be discovered as time goes on!!!

Keep fighting the good fight!!

Hi all I'm new to this forum! I am 2 week post op and currently waiting to find out if the lymph nodes they have taken away have cancer and whether I need to have Chemo!! The waiting is the worst!! I can'tfault the speed at which they have moved but the waiting for results is horrid!! Stay strong all!!! 

Big welcome 

Sorry you have had to join us and I think we would all agree the waiting is really hard emotionally.

Hope we can be of some support to you are you find your feet with this .

Well done getting through surgery . How are you adjusting ?

Take care ,

Court