Adenocarcinoma - Small Bowel Cancer - BALLAD Trial

Hi Ross, I saw your reply to Faloola below. I wasn't told what stage my cancer was, I googled the information in a clinic letter and found out it was Stage 2.  I didn't ask questions at the time as I wasn't in the right frame of mind to ask as I think I was still in shock. 

I'd been ill for some months, thought it was food poisoning or IBS but ended up in A&E and got rushed into emergency surgery as my bowel was completely blocked.  I was then told about 4 weeks later that it was cancer.  I was told I didn't have to have chemo as they didn't know if it would be of any benefit, but when they mentioned the BALLAD trial I said I wanted chemo, just to ensure I did all I could to try and stop this returning.  I'm 55 and was fit and healthy before my cancer.  

Are you having problems with your hands and feet?  I was so lucky I didn't have any problems there but I email a lady who had a similar treatment and she had real issues with her hands and feet, sore, red, peeling, but she said it improved after a few sessions.  What chemo are you on?  I had oxaliplatin and capacitebine.  

How long into your chemo are you?  

Julie 

Oh okay that’s interesting and can completely understand as it’s just hard to wrap your head around when you’re told. I think I’ll definitely ask next time I see my oncologist.

That sounds like a really hard going time for you but I’m glad you are out the other side of it now.

My pains started at a time when I’d had a lot of things go wrong it felt all at the same time. For months and months they said it was IBS despite me going into A&E twice with issues.

Luckily I was able to call on some help and they could intervene in my care (this person has saved my life). If I didn’t have them I’d still be battling the IBS situation. I had 2 gastroscopies, 1 colonoscopy, MRI and it wasn’t until I had a capsule endoscopy they found it.

I only started my chemotherapy last Thursday (4th August). I am on the same as you were. Oxaliplatin and Capecitabine. I have 8, 3 week cycles. Day 1 of each cycle I have the Oxaliplatin via IV then for 14 days I have 10 Capecitabine. Last IV treatment is set for 29th December.

Although for last three days I’ve had to stop as it messed my stomach up. Hopefully starting again today though. 

Hi Ross, so sorry you went through such a bad time and they didn't even realise what it was. 

I had a bad tummy issues too but they settled after a while.  I had my chemo delayed 3 times due to other issues i.e. tummy issues, I got 3 abcesses in my tooth (had to have tooth removed) and a sore toe believe it or not.  They didn't tell me that any tiny sign of infection could be really serious i.e. that I could get sepsis as immune system none existent.  So be careful, any minor infection at all make sure you tell your dr and they'll give you antibiotics and delay your chemo session.   

I had really bad breathing issues with the chemo (dr said he'd never heard of anyone else having this reaction).  5 days after my first session I ended up having to call an ambulance as my breathing was so bad.  A&E staff were adamant it wasn't the chemo, I was sure it was and I was right.  My breathing only recovered a few months ago.  Listen to your body make sure you tell your dr if you're having any issues, they don't always know what they're talking about, we're all different and react differently.  I also ended up in the hospital on about 3 other occasions with side effects of the chemo  (nothing serious) but staff were good and looked after me and eventually things settled.  I found the loss of taste really bad, so when it recovered on the week break, I ate a lot and really enjoyed my food.    

Are you on the Ballard Trial?  How are you feeling with the chemo? 

It's really hard to get through but when it's done you'll feel positive knowing you've completed the treatment and you can start to recover and get on with your life. 

I finished my chemo in October 2021 and went back to work on a phased return in January.  I've got Covid at the moment, went 2.5 years without getting it and this week tested positive, thought I had really bad flu but it's Covid :-/  Other than the covid, I've been feeling great.  

Julie 

Hi, OMG I had the same problem could not swallow. I had to drink really hot tea . It was frightening. 

Hi Cath, after my IV treatment, my throat closed up a little, especially with the cold, was really scary.  I did the same, had to stay warm and drink hot drinks and try and breathe through your nose, that helped.  

I looked it up at the time and it’s a very rare reaction to the chemo, my first chemo my throat closed up and could not breath they ran for someone’s they had apparently never  seen this before. I use to have hot drinks of tea the last hour of treatment. My problem was I could not swallow and pancaked as my throat closed up ,

Hi can I ask you was your cancer stage 4 and if so had it spread to other parts of your body. I’m asking for a reason I’m not just being nosy. 

Yeah I was told to stay away from the fridge for 3-5 days. I couldn’t eat or drink anything cold for that time as I had a scratchy and pins and needles sensation. They also made me leave with a flask of tea and a scarf round my throat (in 32 degree heat) as they said I could have a throat spasm. 

Well that’s clearly what I had and it was frightening. 

Hi Julie, 

Oh my I am sorry you had to deal with that. At least you can now be rest assured that the treatment was at the heart of it and the evidence is there to support you with it all. Just wish sometimes we could be listened too and we’re not just seen or made to feel like hypochondriacs. Hopefully I won’t have to deal with that as I’m a mild asthmatic too. My dad lost his taste when he had his but I will manage that best anyone can should it happen. :)

I am on the Ballad trial thankfully. I got in just in time as recruitment for it finishes at the end of August this year. 

Overall i’m okay with the chemo so far. Very mild nausea which the tablets remove anyway. No soreness on feet or hands, Just an  unsettled stomach that doesn’t know what it wants to do and pins and needles.

I work for the NHS and supported so many staff during Covid so it’s been an interesting 2/2.5 years. I hope the symptoms are not too bad for you at all. Glad you are feeling great and I can’t wait for 2023 (not that I want to wish my life away) as I can start to get my life back 

Ross