Panitumab

Hi CST 

So sorry to hear you are feeling worn down by treatment but really you have done incredibly well .

My mum is on Cetuximab only but just on number seven with no chemo . It sounds like similar side effects to your treatment .

I think the six week break used to be a funding thing so you might want to discuss this aspect to see if that is still part of the issue . 

My mum had horrible mouth ulcers and the stuff the hospital gave her made little impact . Her GP however told her it’s an entry level drug but he had a “ rolls Royce “ he could give her and that worked wonders .

She too finds the nail beds difficult.

i think treatment last as long as it’s effective if you want . Have you had a dose reduction ? This helped my mum .

Also just wondered if you have considered counselling ? Macmillan has teamed up with Bupa to offer six weeks free counselling. Our helpline staff would be more than happy to chat through this aspect or just help weigh up the pros and cons . 
I have noticed she sleeps a lot through the day . Our plan of action long term would be dose reduction first as this really helped previously . For now she is getting a good response .

Take care ,

Court 

Thank you so much for replying, a dose reduction sounds like a good idea.

I'll also look at other options for the ulcers as well.

Nice to know about the counselling as well

Many thanks 

I spoke with my oncologist yesterday and he said a dose reduction is an option so will probably go for that.

I also sent him photos of my fingers and have got a different antibiotic to try.

Feeling a bit more positive now

Thanks

I’m so sorry to read what a difficult time you’ve been having. I’m waiting to start chemotherapy for a secondary spread. I’m trying to find out as much as possible about what to expect. My oncologist said I shouldn’t stay quiet about any side effects. It was really good to be given permission to complain if I feel unwell or in pain. I hope your oncologist continues to be supportive. Very best wishes to you.

So pleased to read this CST and I was able to learn from you and share with my mum about the figure issues . It’s given her some hope if that’s required for her .

Can I ask if you have to take care in the sun and if so how careful do you have to be ? I mean we are in Scotland so nature is lending a hand , just trying to get prepared .

So pleased you had an encouraging consultation.

Best foot forward as my mum likes to say .

One other question . Do you cover the nail beds with anything or air them ?

Court 

Morning

I cover the worst fingers most days as I am scared of catching the nails that are lifting, but I do try give them some air when I am able to as this does help.

Sun ! - I love Scotland but haven't been for some time I am going to Cyprus for a week in June and have plenty of Factor 50 sunscreen and wide brimmed hats. I did sit out last weekend when it was sunny and got a bright red face, not sore but very very red!

Best wishes to your mum.

Very helpful . Thanks for that and have a wonderful trip . We are just looking at the hat options ! .

You take care and so glad you’re feeling a bit more encouraged . Now time for the good stuff with your holiday .

Court