Adenocarcinoma - Small Bowel Cancer - BALLAD Trial

Sorry you had that Cath. :( I can only imagine how difficult that must’ve been.

Ross

Hi Cath, I don't know why they said it's a rare reaction, it's obviously not.  My throat closed up after every treatment.  Same as you, had to stay away from cold, fridge etc, my hands and feet went numb with pins and needles for about a week or so after treatment, but the breathing thing was really scary.  

I had Stage 2, only know that as I googled my diagnosis from my clinic letters, wasn't told by Oncologist.  They didn't tell me much unless you ask.  I was very lucky.  It hadn't spread to other parts or lymph nodes but surgeon said it was very deep through wall of bowel, which is why I had chemo, even though oncologist said I didn't need it.  It's scary that it wasn't even diagnosed before my surgery and A&E visit, could've died.  Even in A&E they were just going to keep me in for fluids overnight until another doctor sent me for CT scan then discovered my bowel was totally blocked and rushed me into surgery.  Are you on a clinical trial?

Julie

Hi Ross, as you've just started your treatment, make sure you tell your dr any side effects, we're not hypchondriacs at al, the side effects can be worse then the cancer itself so don't be shy complaining and asking for help.  If you want to ask me any questions during your treamtent, just let me know.  I had issues with severe pain getting my IV chemo, the pain in my arm after about 45 minutes was horrendous, like a cold metal rod up my arm, they administered the IV a little slower and kept a heat pad on my arm but it was so painful, I dreaded going for the IV treatment.  

Julie

Ross, I'm on the Ballad trial, which I think is good as we get monitored for longer and a little more closely than the oncologists would normally monitor us. I was randomised with the same drugs as you, I did specify that I definitey wanted chemo, just to be sure.    

I finished chemo in October last year, had a CT scan in April which thankfully was clear, have another CT scan in October then my oncologist said he won't see me again but thankfully, the Ballad trial ensures that I will still get monitored every six months, which is good for peace of mind.  My worry is that I'll get another cancer but being positive, I feel great now, no issues at all, slowly getting back to my previous fitness and am appreciating life more than I did previously.  :-)

Ross, I forgot to say, it may help to keep a diary of how you feel.  I did this every day as Ballad trial nurses asked lots of specific questions before every treamtent, did you feel sick, how long for and when, how was your appetite, how was your bowel movements, nausea etc.  I felt it helped me keep track of how I was feeling and they could tweak your meds for side effects based on what you said you experienced.  

Im surprised they said that the throat closing up is rare.the first time it happened to me during the infusion and the staff seemed to take it in their stride,putting a heat pad on my chest,monitoring mybreathing then getting me warm drinks when I was able to swallow

Kath

Hello, I just wanted to say that I have successfully completed my treatment and am now on the road to recovery. Biggest side effect that is lasting thanks to the oxaliplatin is the numbness in my finger tips and across my feet. I did end up getting hospitalised in the early stages of my treatment (cycle 2 of 8) however that stabilised quickly once the dosage was reduced.

Oxilaplatin was a bit of a nightmare for me. Bad throat spasms. That was 10 years ago maybe it’s all changed now guess I will soon find out. 

I had one throat spasm during my time receiving it but the nurses quickly rushed and got me tea and a steamer and within 2-3 minutes I was fine again. Just wrap up warm and keep your throat covered with a scarf or something and you should be fine

Ross, I had bad issues with that too, kept a face mask on and as you say, drink hot drinks to open up the throat.  It's a horrible feeling when it starts to close up with the cold. I was even like that at the fridge for a while, crazy.  My real  issue was breathlessness, 5 days after starting chemo I was told to get an ambulance to check my lungs etc as I was really breathless, I knew it was the chemo but they checked me and said no it wasn't chemo, then changed their mind and said yes it was chemo, doh!