Busy couple of weeks coming up

Wehey Daloni, that's good news, don't see why we should be out of pocket when we trial these new drugs even if it can help others in the future. Money is very tight for some in our situation, i myself only get PIP,  if i need anything else like glasses or dental treatment my Lovely Hubby has to pay as he is still working full time and self employed at the age of 69 so we don't get help from anywhere and have to pay full everything. xxxLynn 2.

Impressed with your blood pressure daloni ,considering all you have to contend with today 

good luck x

Thanks, Folks, for all your best wishes. 

It’s been a long day and it’s not over yet. The skin prick test went fine. The infusion of the antibody went fine. I had a mild reaction about an hour after with an asthma attack which was fine after I used my inhaler and had some oxygen and IV piriton.  It’s precipitated another lot of blood samples. Most important - no hives or rashes. I still have more blood samples to give  

The scan results were tricky to hear. My liver tumours have now merged into one bigger tumour. The lung tumours have grown. There’s a new tumour in my spine. Eek! Having said that, none of these is large or causing any problems. The spine tumour might be amenable to radiotherapy in due course. 

More problematic is a patch of growth around a major blood vessel and now extending into the blood supply to the kidney. It’s likely the cause of the kidney packing up. Is it a blood clot or is it cancer? They think it’s probably cancer. It might break up at any time with serious consequences so I’ve been advised to make plans for what to do in this case. They want me to see a consultant haematologist to discuss anticoagulant treatment. However, my doc is hopeful I can get my youngest through her GCSEs next summer. So that’s all as clear as mud then. Best summarised as prepare for the worst but hope for the best. Oh, and I have gall stones. I said to the doc that it’s felt for a while that I’ve taken another step down this road and passed another milestone. She agreed. 

On a lighter note, everyone in the trials unit has been excited to get me underway. It’s a dose escalation study so the first group of patients get a tiny dose, check for safety and side effects, if they are ok then up the dose for the next group and so on. I am the first person in a new group of patients to get a higher dose. I pointed out to the assembled nurses and doctors that this meant I am the first person in the world to have this drug at this dose. They all went quiet. “I think we forget sometimes how new what we are doing here really is” said one. 

Quite frankly I’ll be glad when today is over. I’ve been hooked up to various machines all day and eaten NHS sandwiches for lunch and tea. That’s my fault but still. 

Xxx

All the best Daloni with your treatment. take care xx

Oh, Daloni, what can one say?

Thinking of you, and hoping for the best.

Wishing you all the very best Daloni x

I’m overwhelmed just reading this so can’t imagine what it’s like for you going through it. All I can do is send you hugs and tell you that I’m thinking of you.

Wish I was nearer ,would bring you a homemade lunch to the hospital , 

am I allowed to ask which hospital you are in ,my daughter works at royal free ,could get her on the case 

anyway ,feel for you ,hope all goes well

positive thoughts as always

janet xxxx

Hi Daloni, I'm glad your long day is over! I was so pleased to read positive news about expenses, every little helps! The summary you made about "prepare for the worst and hope for the best" I thought to myself, that's what we all do! It's also obvious also that no one actually knows what the future holds! The professionals I mean! I hope the next few days are a bit easier on you and go smoothly!

WB I'm with Daloni about waiting until after Christmas to get your results! What's another few weeks if it'll give you a great Christmas! However, I do know with some people waiting would make them more anxious but I think you are like me and try to take it one day at a time!

Hi Daloni, im so glad everything went ok yesterday, bad news about the kidney but maybe this new treatment will sort that out, heres hoping anyway. Lynn 2 xx