I'm sat in my room at the Zum Lowen in Duderstadt. We are once again living life to the full after a weekend being joined by our good friends from Ireland. Feeling tired but happy we got here late last night. We flew to Hannover and then drove to Duderstadt. We are so unlucky with the weather. It rained then snowed then blew a gale all the way here. Poor Pete hated the drive here especially with over 14km of roadworks! Apparently in two weeks it will be about 18 degrees and sunny. Typical. Let's hope the next time we visit it is better.
After a brilliant nights sleep in one of my favourite beds I had a hearty Zum Lowen breakfast then headed to the clinic. Today I thought I was having the usual oncothermia, Newcastle disease virus, and an interleukin 2 shot. Instead I had an infusion of nivolumab.
I knew I was having nivolumab on this particular visit but had no idea how it would be administered. It took about an hour and half to complete and there isn't any side effects expected as it isn't a chemo, it is a monoclonal antibody.
Now this is where it gets a bit technical. I don't really understand it all and if you asked me I couldn't explain it to you as I have a memory like a fish but the explanation is below of how it works and what it does.
Nivolumab works by blocking a protein called programmed cell death 1 (PD-1). Drugs which inhibit PD-1 may be able to treat a variety of cancers.
PD-1 is a protein on the surface of activated T cells. If another molecule, called programmed cell death 1 ligand 1 (PD-L1), binds to PD-1, the T cell dies or becomes docile. This is a way that the body regulates the immune system, to avoid an overreaction. Since many cancer cells make PD-L1, the cancer cells can disarm the T cells and inhibit them from attacking the tumor. Nivolumab blocks PD-L1 from binding to PD-1.
PD-1 blockers appear to free up the immune system only around the tumor, rather than more generally, which could mean they can have fewer side effects as well.
Currently nivolumab is being made by Bristol Squibb Myers. I called them recently and asked them if they would provide me with nivolumab so that Prof Dalgliesh could administer it for me. They said no. Then Prof Dalgliesh contacted them and they said it wasn't licensed forbreast CanSer. Oh well it was worth a try and would certainly have been much cheaper than us obtaining it here in Germany. However, when asking all the doctors I have seen in the UK what their thoughts were on nivolumab . I was pleased and surprised to be told go and have it and to put other treatments on hold. I have never been told this by an NHS doctor. I was worried about postponing starting eribulin as I know it should be effective treatment for me but Prof Harris said why put more toxicity in me especially when my bloods have been so low recently.
I had some bloods taken this morning and the lab here will check to see if my haemoglobin has improved enough for them to take plenty for my next few visits.
I have everything crossed that it's good. It hopefully will be better than my last bloods that I had done ten days ago. They had already risen from 8.9 to 10.9 so fingers crossed once again.
For more info on nivolumab click the link. It will also give a link to current trials available.
What else is new? Other than eating my body weight in food I am keen to get back to exercising regularly when we get back and I think I am going to mix it up including rebounding, weights, yoga and more.
My skin has really been odd recently too. I have a rash like area of spots on my chin and round my nose that is itchy. I have great skin normally. I associate the chin region with hormonal issues so I am unsure what is going on...
My hair is slowly growing back and is so soft and fluffy. I am very impatient and really want it back now. The problem is the stripe down the middle of my head is still bald! I have a reverse Mohican that looks more obvious by the day! Haha...
Mum went home Saturday and it was really sad to see her go. The week flew by and we had such a laugh. She taught me to knit and we really got stuck in. The good thing is that the repetitive strain injury has now healed...haha. I'm good to start knitting again!
I have today emailed the secretary at the NHS. I am chasing up the gamma knife treatment at St Barts. I am very aware that Dr Plowman only has one MDT a month and I want to be featured so that I can have the procedure soon. I have re read a letter that his consultant sent to my hospital and it says that once I have had whole brain radiotherapy and there are no new metastasis and the current ones have improved and are stable that he would happily do the procedure on me. Well, based on last weeks scan he should be happy to proceed. As with the NHS and any other doctors you have to push for these things.
It's weird. The last few months have been pretty up and down and the results so far have been really good. I get the feeling that for any kind of success it has to be hard and painful. Wouldn't it be lovely that if this nivolumab, which apparently gives no side effects combined with dc therapy, actually works? Painless and effective.... Please please please.....
Now for an afternoon of chilling and reading....
Light and love. X