Bear and I decided it was time to have an appointment with Prof Dalgliesh. It has been more than a year since I have seen him and although I do email him updates he is a busy man and probably doesn’t really remember everything that is going on with me. The reason for going was to see if there is anything new, and to see if he could fill us in and maybe point us in the right direction with regards to all the news and publicity regarding immunotherapy and genetics.
As always the meeting was brief (but expensive) however it was good to see him. He seemed genuinely pleased to see us and more so considering my diagnosis over the years and remissions and progressions and so on. For someone who has had it for six years, in the breast, brain, spine and lymph and lungs at all different stages and size with and without symptoms. He seemed pleased with the treatment that I have had and am continuing with especially as he recommended I see Dr Nesselhut in the first place. He did know there are changes for his German friend regarding Newcastle Disease virus and whether Nesselhut will be able to continue using it or not. But nothing more than that really.
We discussed how useful Newcastle disease virus is for some and although I have never had remission using it we do feel that that it is working on some cells in my body and that is why I am stable and healthy. He said that there is probably a residue or build up of NDV in my system so not going to see Nesselhut as often isn’t a problem. Dalgleish also endorsed the use of nivolumab and ipilimumab. We asked if we could have them over here now. He confirmed that both drugs are licensed for use here but are probably more expensive to be treated here because of having it administered at a private clinic. This I am to find by calling a clinic he has recommended in London.
He did say that Newcastle disease virus is obtainable in Holland and will try to find a contact for me.
We came away a bit underwhelmed as always. We never feel we really got much out of the meeting until a later date when a little gem appears. But for now we are back in his thoughts so maybe he may consider me when thinking about treatments.
Today is a beautiful sunny and crisp day here at our ranch…Haha… The cat is asleep somewhere, the neighbour’s dog is chasing bees and I have been sitting on the decking having some oolong tea. As normal my hands are freezing but my pelt/furry bonnet has some heat on it. Lovely….My hair is now at a length that it really could do with a trim around the ears but not long enough to look cool.
I had a letter this morning form the hospital telling me the pain clinic appointment I had in July has been bought forward to a few weeks’ time. Apparently my oncologist (good old Prof Harris) has asked the pain team to see me sooner. I am so grateful. For a while I thought well I don’t need it but this week just proves how quickly things can change again.
The niggly cough caused by irritation from the microwave ablation hasn’t subsided but actually seemed to rear its ugly head more. This has caused the pain in my ribs to travel under my arm and is really sore to move and caused some spasms around my neck, to the point where I couldn’t turn my head! Argh… stupid body.. Well there was a plus side. I got a massage from the Bear and after a good night’s sleep the pain in my neck had relaxed slightly. It’s much better today although when I cough or sneeze I could go through the roof with this weird pain.
Tomorrow I have my mum visiting and then we are off to good old London town for a girly trip to celebrate a belated Mother’s Day. I am hoping the weather stays bright all weekend so that I can venture into my garden to actually do some gardening. I am sure my mum will be well pleased with those plans! Ha!
I am wrapped up in a big polo neck jumper and I have a fresh pot of tea ready… I am off to enjoy the last rays of the afternoon. Don’t forget the clocks change this weekend!More light in the evenings… Yay!
Light and Love. X