For Mrs BJH

Hi Barb,

That's great news, suppose it goes to show that we don't know what's going on behind the scenes. 

Can I be nosy and ask what you mean by the compassionate offer? Is it because of mmr? Is it a trial?

I'm only asking due to genuine interest because I've been told that immunotherapy wouldn't work on my type of cancer and I can only have chemo. Just interested as not sure when I might need ammunition. I know all cancers are different and tell me to get lost if you think I'm being cheeky.

Lots of luck and hope for your treatment,

A x

MrsBJH, good to hear more positive news for you Barb, i am glad things are getting sorted out and you know what is happening. I can appreciate it can really set your head in a whirl when plans change but at least its just to get them trained up. Big gentle bear hugs

Hi Fridgelicker Bless you, a lovely thing to say! I don't normally say "Bless you" but all my calls to various NHS staff over the last few days have them saying it to me so it's rubbed off! They're all my angels!

Glad I could support you, just as you all support me. I honestly don't know where I'd be if I hadn't joined the Macmillan Forum a couple of years ago, it's been my salvation!

Big hugs, Barb xx

halligoosiman

Hi Pippa, love that thought!

Hugs, Barb xx

Hi . No, I don't mind you asking at all. We've all got to do what we can to survive and basically, thankfully this'd been dropped in my lap. When I saw my Oncologist in September I'd noted down the Immunotherapy drug mentioned when someone wrote had anyone heard of Pembrolizumab and Lenvatinib for advanced metastatic endometrial cancer. He basically produced a sheaf of paperwork for these drugs.

I haven't been sworn to any sort of secrecy so think I'm ok to explain.

It seems trials for this combo for advanced metastatic Endometrial cancer have ended and proved to be an effective treatment. At the moment it's into negotiations stage between NHS and the makers. (It's horrendously expensive). As a goodwill gesture, obviously the makers want to secure the contract, a certain number of treatments are being offered free of charge to certain NHS patients for whom time is running out. My cancer further metastasized very shortly after finishing chemo. Ended chemo 25th March, CT scan showed hardly discernible deposits 31/5, back by end of July.

I have no MMR deficiency, so this is suitable for me whereas Dostarlimub wasn't. 

As it seems I'm the first, certainly in Lincolnshire Health Trusts, to have this treatment there's been a massive amount of work done, staff received training, not for the infusion but to spot side effects and ask the questions pre-treatments.

I'm feeling very humble and feel so grateful to out wonderful NHS. My lovely Oncologist called me at 17.45 last night to explain the delays in the start date for treatment and the Scheduling nurse called me this morning to check someone had called me. What a team!

Hugs to all, Barb xx

Hi Ladies, yet another update....

Had a call at 17.45 from my Oncologist last night. It seems it could be another 2/3 weeks before I start!

Starting a new treatment in a Health Trust sounds a fairly massive undertaking with staff needing to be trained, signing contracts to ensure they know what they're doing. Everything must be signed off even at the top levels. I apologised for all the work I've caused and he reassured me, no apology was needed! Lovely man.

The treatment comes from 2 different suppliers, hence the delivery must be co-ordinated in time for treatment.

I've got to be a bit more patient. I did mention the fact I having more pain, hence things must be getting larger so do I need another scan. But it'll be taken into account so I don't need to worry.

I can only thank my team who are firmly on side and keep me in the loop every step of the way. My scheduler, who'd been trying to find out more for me, called this morning to make sure someone had contacted me. If I ever hear anyone criticise the NHS they'll get a firm kick up the ar*e from me!

To be continued .......

Hugs, Barb xx

Thanks for the info Barb, good to know. Best wishes to you for your treatment. I am always defensive of the NHS as I know how hard the staff work.

A x

Well at least the ball is rolling MrsBJH. Although I do hope you can get some pain relief,  I know it's a fair wait still before you start but you have a count down to it at least is getting shorter.

Sending gentle bear  hugs

Thinking of you and willing the NHS to get your treatment to you ASAP. Hope pain is being managed and that you have any other help you need. Definitely have all of us sending good vibes your way. Hugs, Lx