Days 6 to 15

2 minute read time.

Well, haven’t posted for a while as there’s been little to say really. Not much happening at all. I felt fine all through the first week, with only minimal effects. We went on holiday to Northumberland a week after Treatment began and I was still feeling fine. I did notice that my abdominal pains were lessened though, so that seemed to be a good sign that maybe the treatment was working on the cancer.

On the first 2 days of our holiday I walked for an hour each day along the beach with the dogs and felt good about it and went out later in the day too. Towards the end of our 3rd day I noticed that my mouth had become really sore - tiny ulcers and my toothpaste was burning me. It’s a reported side effect so I bought a gel - Andusol - which seems to have calmed it. On our final day, my husband thought I seemed more tired and then on the Saturday, back at home, I helped at a Christmas Fair - 4 hours serving soup. I was almost on my knees at the end and had to sleep for 2 hours when we got home. Didn’t move off the sofa all evening and literally fell into bed. I was up in the morning making a huge pan of chilli for a Street Kitchen for the Homeless but after that needed to go back to bed. We had friends round in the evening and could barely keep my eyes open. Fatigue definitely had kicked in! Need to learn to pace myself.

Monday I still felt exhausted but we’d planned a trip to RHS Bridgewater so we went anyway. Definitely not at my best - felt awful but glad to be out at least. On Tuesday the aching joints and muscles were awful. I could barely climb the stairs. I decided I would do Brufen/ Paracetamol alternative dosing throughout the day at 2-3 hourly intervals. Get on top of the pain. It worked! By evening I was so much better - but also had done nothing all day, other than take my dogs to the groomers 5 minutes away.

Today is Wednesday and I repeated it. I feel fine now - early evening. I might ease down the doses tomorrow and see how it goes. But I’m feeling back in the game.

Bowels completely fine - maybe a slight more urgency when needing to go, but it’s only once a day. Appetite fine. My skin is dry, but probably no more than normal (has a tendency to be dry anyway) Mouth soreness persists, but it’s not awful. Breathing no problem at all.

needed to sleep this afternoon for an hour, but had short walk this morning (could have been longer but was damp and miserable!).

all good so far - and that’s the first 2 weeks done and dusted:)) 

Anonymous
  • My husband was on a clinical trial with levitanib and pembro for nearly two years. He would be tired when he would get the pembro infusion every 3 weeks at the beginning. The fatigue would hit him 24 to 48 hours after infusion. I can honestly say that for the time he was on those drugs that was the best time of his cancer journey. He got tumour reduction for 16 months scan after scan and then stability of tumours for last 6 months while on that drug combination.

  • Thanks for this - it gives me some hope. Feel so tired most days at the moment.