Reaction during Perjeta infusion.. worried it will be stopped

hi

I'm going to state the obvious but worrying doesn't solve anything.

are you happy with your team ? are they keeping you informed at each step? do you feel cared for ?

do you trust them ?

if the answer to all those is yes then you are just going to have to be patient, easier said than done, I was told I was overly anxious but at least the doctors gave me some lorazepam to calm me down a bit, it's not a long term fix, just something to get you over the initial stages. 

NHS guidelines mean that they will have to follow the plan which is currently recommended in your situation. 

it depends on your team at what point they vary that plan. patience is a virtue, repeat x 100.

I can't remember, and not sure how to find out, what the protocol is for alternatives.

But you can ask your team. What is plan B.

What happens if I carry on with the current plan, you may continue to have side effects, but sometimes they ease.

What happens if I switch to a different treatment? What is that treatment likely to be?

Can I continue with Herceptin and Docetaxel?   I can't think of any other questions right now. 

try not to panic about missing out on Perjeta, if they do stop it, they might decide to carry on.

We marched on parliament to demand Kadcyla for everyone and ironically the poster girl for that campaign found that it actually didn't work for her.

I didn't get given Perjeta because it hadn't been approved when I was diagnosed with primary breast cancer in 2015 and even if it had been the Her2+ wasn't discovered until post surgery and PHD is only approved for pre-surgery, or neoadjuvant, in that situation.

capecitabine is one drug you can ask about, I'll have a quick search for others

Carolyn

xxx

Thanks Carolyn28 x x x

Worrying isnt normal for me .. im the one with the brave face and haven’t cried at all since my diagnosis ( which is also mets in liver,bone and lungs from the start) . 

After a few phone calls today my BCN has contacted oncologist who is going to try different premeds and extend the infusion to 4 hours next time for the perjeta. He may get me in early to have the docetaxel and Herceptin that I missed but hes not worried about that ( and everything will be out of sync ) . 

I feel a lot better about it now so may have a couple of drinks tonight . 

Hope everyone has a good New Year’s Eve as possible 

Much Love 

x x x