The professor's plan

It's taken a while to get this next update out but wowee has it been another rollercoaster since the start of last week.  There's so much to say in this update, and a lot of it is quite factual as we've learnt so much as well.

We went to meet Professor Dalgleish at St. George's on 6th January.  It was an NHS appointment and the nurses and Doctors are so overworked that I don't think he'd had time, in fact he definitely hadn't had time, to read up on my case or familiarise himself with what we'd been through so far.  He didn't even have the actual MRI scans of the liver that had been produced before Christmas in the same hospital. , he quickly became as familiar as he could and started to give us a breakdown using very medical and large words of what the plan was going forward.  It's fair to say that none of us really understood his explanations in the first ten minutes.  It quickly became apparent though, that he is a Professor in the true sense of the word and a pioneer and expert in the treatment of melanoma! We took some comfort from the way his eyes lit up when he explained about my melanoma – this is a man who knows our enemy.

Having reviewed the MRI, the Professor said we should assume that all the shadows they could see on the liver are suspicious.  His plan for my treatment is three months of chemotherapy and followed by three months of immunotherapy.  There will likely be some overlap of the two but that will be determined later down the line.  Incidentally, we had earlier told him that we would move to being a private patient (thank god for the policy with Pru Health) which he was incredibly relieved about as it's virtually impossible to get the NHS to agree to prescribe those two types of drugs exactly when he wants to deploy them.

Just as an aside and because I didn't know before, I'll set out the difference between the two drugs.  They are both taken via a drip in hospital over a period of time and the side effects are the same - although you are less likely to have such severe ones on immunotherapy. Chemotherapy kills everything i.e. the good, the bad and the ugly.  Immunotherapy boosts your own body to work and kill the disease.  The cancer cells are nasty cells that wear a cloak so that your own immune system doesn't recognise them as bad cells so it doesn't attack them.  Immunotherapy helps to de-cloak the bad cells and gets your own immune system to recognise them as evil and kill them off.  Pretty impressive.

The aim Professor Dalgleish plan is to shrink the melanoma using chemo to a size where the immunotherapy would then be able to treat it.  His prognosis is that within six months - one year we could have this all under control.  The thing about melanoma is that my body in particular seems to be genetically programmed to produce it at any given moment. So whilst we can make go it away we don’t know when in the future when it might come back. We will learn more about this when we next see the Professor.

So death is not around the corner and Professor Dalgleish was adamant that we had to remain positive and that we could be the ones in control. That being said, I particularly, felt very emotional after that first meeting (i.e. had full control of the whimps baton!), I think I was just so scared about what he was going to say.  It was also that the journey we were about to embark on could be so long.  With the brain surgery, I was much better at dealing with it, because it was adrenaline fuelled, there was no room for thoughts and we had to make choices fast. This bit has not suited me and I really feel like the worst was just starting. 

Good news

The day after we’d first met, the Professor rang and gave the one bit of positive news that we've had since this all started in mid-November.  He had reviewed the actual scans from the MRI team and the cancerous lesions he could see in the liver was much smaller than he thought and small enough to be receptive to going straight to the immunotherapy and skipping out the chemo step - Hoo Bloody Ray! 

As an aside, he said that technology and high definition is so good these days that if you scanned anyone's liver it was likely to come up with showing something 'abnormal' but that the abnormalities can usually be explained as benign lesions rather than anything suspicious. 

The pathology results from the tumours removed showed the cancer had a mutation in it which makes it receptive to the drug I've been put on and which I will have every three weeks for eight cycles.  It involves going into hospital and getting it intravenously via a drip every three weeks.  After the fourth cycle then Professor Dalgleish will do a review of what effects it's had - hopefully big ones!  It is worth mentioning that this drug has only been available first line for patients for a matter of weeks.

mongst other things he said that Melanoma is skin cancer which has manifested itself in my vital organs.  It would likely have originated either on the conjunctiva (eyeball) back in 2011 or that it may well have originated in a mole that has since been removed or still there.  It is likely that my immune system has been fighting the regrowth of this melanoma in other places for the last four years and that actually being pregnant is more than likely to have been my detriment last year.  One of the mechanisms of being pregnant is that your immune system “switches off” so that you don't reject the baby, and that's when mine turned off and allowed these tumours to grow.  Melanoma is one of the fastest growing cancers out there. 

Treatment begins

So with trepidation I went to Parkside hospital on Wednesday 13th January to start the treatment.  Physically there is absolutely nothing to fear at all, in fact mentally there is nothing really to fear but it was pretty grim.  They make it as nice as possible and the room is small with only 8 patients in at a time.  But you still have to sit in a chair and be plugged into a drip just like on the adverts.  It's really weird and quite hard to explain but I think it makes the reality of the situation come home.  We were there for three hours in total and looking on the bright side - the first one is over and no major side effects so far.

We also had our first meeting with Frank Saran (brain oncologist) that same day, he's the man who is going to do the radio surgery to the tumour beds in the brain.  He is super upbeat and like the Professor, clearly loves what he does.  He is going to give a 90 minute treatment of radio to the brain.  The rays that they use on their own are not meant to be harmful to your brain, it's only at the point when these rays cross that they zap whatever is in sight.  I have a mask made especially for my face to hold me as still as possible whilst these rays hit my head and the meeting points of the rays are localised to the points where the tumours were.  It's not meant to hurt and you don't have to be in a tube but apparently the mask is pretty tight, as you can imagine, as they don't want to get these rays in the wrong place.  I'll go in for a whole day at the Marsden and have CT scans as well as another MRI scan for him of the brain, the mask will be made and the radio surgery done.  Generally that's all that's required so we will review once he's done his work and hopefully need nothing more.  It will be done around mid-February.

Wednesday 13th was a pretty big day in my life and I was left completely exhausted by the end - a combination of the drugs as well as all the emotions gone through. 

Now though, there will (fingers crossed) be no more surprises and we can just get on and win.

We continue to get amazing presents, cards, letters and messages which we are, still, so grateful for.  Thank you (doesn't even cover it) so much.  The plan for the next few weeks is to drink and eat as much nutrients as possible and sleep as much as possible so that this human body is ready to see off what it needs to.

Big love from us both xxxxxxxx