We have a plan! Nivolumab......a checkpoint inhibitor ......... time for superhero status....... and breathe........


 I went for my scheduled appointment to Dr Taylor’s gynae clinic yesterday - after the merry-go-round pass-the-parcel (me) of consultant clinics. 

Dr Taylor has been overseeing me (surveillance programme) since my hysterectomy in November 2018, but when the tumour was identified in the colon a few weeks back, I was then referred to the colorectal surgeon, and then to the colorectal medical oncologist, and then back to the gynae team....as the sneaky cancer cells are endometrial in origin. This means that Dr Taylor will be overseeing my therapy. I am also having consultations with Dr Terri McVeigh who is a brilliant young Irish geneticist (because of the interesting and unusual nature of my case....did I mention that before?)

I have asked at each consultation whether I could have my treatment at the Sutton Marsden, and everyone seemed to think that was a possibility. This would mean that if I don’t feel very well then someone else could drive me there, or if I feel fine, I could drive myself there (and casually park on the Sutton Hospital site using my work scratch cards, and cheekily walk in the back door....👍) but yesterday I was informed that Dr Taylor doesn’t travel to the Sutton site (she’s far too posh) and she wants to oversee the therapy programme - and - if anything should happen.......... then she could be summoned! I have visions of her skipping downstairs in her Reiss suit and Prada shoes and saving my bacon when I have an anaphylactic reaction to The Drug. 

So Chelsea it is - for the foreseeable future - on alternate Wednesdays and Fridays, I shall be rather busy. On Wednesdays I shall have a consultation and have blood tests and we can see how I’m faring, and then on Fridays I shall have my infusion of Nivolumab. This will reportedly take around an hour. I imagine that I’ll have to hang around for a wee while to see how my body reacts, and then I can fight with the commuters to get home (while the drug is fighting the enemy within my body - multitasking on a grand scale). 

The good thing about immunotherapy is that there’s not too much talk of immunocompromise. The Nivolumab (also known as Opdivo) is a drug which has shown remarkable success in treating a variety of different cancers, it’s known as a ‘checkpoint inhibitor’, and I’m quoting here from the good old BNF “....is a human immunoglobulin G4 monoclonal antibody which binds to the programmed death-1 (PD-1) receptor thereby potentiating [great word] an immune response to tumour cells”.....

GOT THAT???? Yes. I have spent the last week reading up on everything I can find regarding immunotherapy. I have joined two new facebook groups just to further this -and yesterday I was chatting to a chap in the States who had just had his 73rd infusion of Nivolumab!! Blimey. Lots of people have asked me how long the treatment will go on for - the simple answer is that I have no idea! If it works....it works! I have purchased a book upon the recommendations of more Nivolumab patients in the US. 


Yesterday, in my consultation, I was given three choices:-

A)    Chemotherapy (Carboplatin and Paclitaxel - these are standard for gynaecological cancer treatment)

B)    Immunotherapy (see above)

C)     Clinicial trial (this would be of chemo and immuno combined (but I could fall into the placebo group and not have the testing drugs at all! Not prepared to go down that risky route)

The doctor and I both agreed that, in my unusual and individual case,  the Nivolumab appeared to be the clear winner, especially as the new Covid guidelines had LITERALLY just been written to include one such as me! Everyone I’ve had a consultation with has said to me (trying to overcome their excitement) that I am VERY unusual, and causing a stir in the MDT meetings. If there’s an Almighty Being listening to my story, please let it be known that I really would rather be Mrs Dull and Boring from Addiscombe in my next life.......... 

In my head, I’m seeing this Nivolumab (I’m writing it as often as possible because I can’t get my head around the spelling, let alone the chemical properties) as an anti invisibility cloak. The cancer cells have (start speaking with a Hollywood Superhero accent her.......) a Programmed Death Inhibitor receptor which creates an immune checkpoint. This is the cancer’s invisibility cloak. The Nivolumab will inhibit this receptor, therefore turning on my own body’s immune system so that it can send out the little white warriors to seek out and destroy the invading cancer cells........ 

Side effects???? My nearest and dearest have asked me about side effects. I’m hoping that there will be as few as possible, but I have to be realistic. We went through a huge list of them yesterday in the clinic - liver problems, diabetes, lung conditions, diarrhoea (GOODY), skin problems, joint pain etc etc etc culminating in the last one which we skipped over:-  DEATH.......  One in a hundred apparently! This seemed like astonishingly high odds to me, and when I was reading it to Ned - he looked quite alarmed, but, as I said.... that one won’t be bothering me!

Everyone told me I have to start thinking about myself! Onwards and Upwards........ 

💋

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