Immunotherapy start date.

Totally fed up today. Got a call yesterday from chemo nurse saying my immunotherapy won't be Monday as there's a problem with delivery to the Pharmacy. Will know more on Monday. I was getting myself all psyched up for the treatment. Now I'm worrying it's being withdrawn to NHS compassionate cases, they'll tell me I need to go to the Royal Marsden or Clatterbridge etc, etc.

My mind just will not stop churning things up. Lay in bed all last night staring at my eyelids, just couldn't switch off.

I'll update Monday!

Oh no, bummer!  This has happened to me.  Dose 1, I think.   Like you, I wasn't impressed.   It was just a problem with my local hospital not having one of the immuno drugs onsite.  It was 30 mins down the road though in my regional oncology centre.  Just a delay of a single day.  Yours sounds similar?  I do think you're over-thinking the root cause though and I can totally understand the train of thought.  You've been accepted - they won't just withdraw it and tell you "supply issue".  

Hi Barb, hopefully it's just a delivery problem, it's horrible having to wait not knowing, no wonder your having sleepless nights.

I've just been told that I now have cancer in my neck and waiting for more scans, then I'm told I'm looking good, hard to hold temper, I'll be thinking of you and hoping everything turns out ok.

Hi Barb sorry to hear this, I hope its sorted out soon. As Mmum says you've been excerpted and they won't just dump you. I've been on immunotherapy for 27 months and it's never happened to me but I go through Clattabridge not a local hospital. Thinking of you, take care xx

Moi

It's been made worse by the treatment day being on the first day of the week.  It's meant they've had to phone up on Friday so you've got Sat/Sun to mull it over.  

I'm not surprised you feel like this after getting yourself ready for Monday. I'd be the same. It's likely to be some piddling reason: I don't know how they receive these things but it could be something as irritating as the Royal Mail strikes perhaps causing a delay? I would have thought motorcycle couriers a better option to get such things to patients. Anyone know? I'm sure mmum is right and that once you've been accepted the treatment won't be withdrawn. That would be beyond cruel.   Rainie x

Sorry to hear this, hope Monday is better for you, as others have said, i cannot see how they can with draw it, once you have been offered it and accepted, Just a little bump that will smooth itself out, i am sure.

I've been on immunotherapy for a year little to no side effects. Also have the attitude "what's the worst that can happen?" so enjoy life your way 

Well after a week of to-ing and fro-ing am slightly close to knowing what's going on but it'll still be another couple of weeks! As this is a new treatment for my type of metastatic cancer in Lincolnshire, if not the UK, all of the staff have had to undergo training, not for the infusion but more looking out for side effects and probably the questions they ask pre-treatment. They've also had to sign new contracts it seems??! Once that's all done the pharmacy team can order the drugs. The drugs come from 2 different suppliers so they've got to be co-ordinated. Something also needs to be signed off by a higher up in the health trust.

I'd talked to my chemo nurses, who'd referred me to the scheduling team who then asked my Oncologist or the pharmacist to let me know what's going on. My Onco called me at 15.40 and clarified things, I said sorry for all the extra work being caused. He said no apology needed. He also explained I would only receive the immunotherapy infusion for 2 years but would continue to get the tablets as long as necessary or until toxicity builds up etc. I thought is this it, my stay of execution for just 2 years than I remembered, I'd read somewhere immunotherapy is only done for 2 years. Supposedly the body's immune system should kick in to do the job by then?

I mentioned my pain's back. When I saw him on 13th September, I only had twinges, now I need pain meds about every 4 hours and opened a bottle of morphine last night.

Hopefully I'll hear more by the end of the week.

Hugs, Barb xx

It's a bit of a game Mrs B but it does seem that it's going in the right direction for you, just a few speed bumps to slow you down.

They have to sort one thing out at a time just a misery with the pain. Hope that improves.