Are you bored of me saying what a great nights sleep I had at the Zum Lowen hotel?

Are you bored of me saying what a great nights sleep I had at the Zum Lowen hotel? Ha ha…Oh well…. I did! Last night was an epic nights sleep….  So much so that I woke up with the puffiest face and eyes that I have ever had! My first appointment at Dr Nesselhuts clinic was at 10am when  I was told that my bloods were fine from the lab tests. Phew…  That’s good news. I had many, many vials of blood taken so that they can be frozen  by the lab and used for future dc vaccinations.

Then I had hyperthermia followed by a Newcastle disease virus jab.
In between appointments Pete and I killed some time then returned for the vaccination.  We saw Thomas’ son Jan this time.  He is just as lovely as his dad and seems to really know his stuff too.
He was pleased with my recent scan results and proceeded to discuss nivolumab.  He explained that unlike other antibodies and vaccinations which tend  to leave the body within about two weeks,  nivolumab has a half life of about four weeks,  so when I have my next infusion of nivolumab there  will still be a residue in my body therefore making it accumulative.This is classed as a good thing. He also said I had about 1mg per kg of weight.  The usual amount would be 3mg but they like to wean you onto it to ensure you don’t get too many side effects.

Plus, it would cost a fortune if we had 3mg per weight!  Then Jan dropped the bombshell… He said that because nivolumab affects the immune system I could get an auto immune disease.  That means any organ or system in the body could be affected. If affected then  I could of course die from that auto immune disease.  Er….. Brilliant. But it’s ok because if I get any symptoms or illness then I could be put on strong steroids like cortisone or prednisone to stop the disease. So yesterday when I was pleased that there wasn’t any side effects and how nice it would be to actually receive treatment without any pain or misery…  I was wrong. Life is so full of Yin and Yang! I wish he hadn’t told me.  I don’t want to think about the possibility of getting arthritis, failed organs, or anything really!  I just want to be healthy and happy- CanSer free! Well as I type this sipping on my mint and lemon hot water I just think to myself, ‘what’s the worst that could happen?’
Right now I have a choice. I’m already taking a leap of faith. I am to try out this combination of nivolumab and dc therapy for three months and then scan to see if it’s working.  The worst outcome is that the canSer grows and spreads.  The other baddy is that I get sick from the side effects and get too ill and die.

For melanoma, nivolumab really is a game changer so let’s hope it works just as well for us TNBCers. I must point out that the trials for nivolumab in the UK are totally different to  what I am receiving as I am having immunotherapy as well. The other choice is I go straight back to Prof Vogl and have TACE and do what has been working recently. I never know what’s for the best. I can only react to symptoms. That’s the best way forward.  So I am going to be alert, live healthily and just plough onwards and upwards.  I will ask for another scan in about two to three months and continue to have my bloods done every few weeks. I am still having denosumab for my bones and will continue with my supplements and medication.  We left the clinic with plenty of time for our flight. As usual the weather turned nasty.  We had a torrential downpour of hailstones.. It’s actually getting funny now. We arrived with plenty of time for our flight though… Four hours to be precise!  Shame there wasn’t any earlier flights we could have slipped onto.

Looking forward to my own bed. Let’s hope I sleep as well as I did last night..
Xx

Leave a Reply

Your email address will not be published. Required fields are marked *