I’m sorry for the delay in getting a blog out. It’s been about six/seven weeks since I last managed to and a lot of this was my health I am afraid to report. Either being too unwell due to the chemotherapy or the neuropathy in my hands preventing me from typing. Sadly although I have noticed a little difference in that, I am feeling nerve pain whenever I try to type. It’s like a little electric shock every keystroke which as you can imagine gets quite painful the more I continue.
Other than that, I have had your standard chemo fallout, sickness, tiredness the usual crap.
I have finally completed round 12 of the folfox treatment plan Dr Pedley set out for me. I actually completed it about a month ago and I am on the mend from it. I have already had a CT scan but I didn’t have an MRI or PET CT Scan to go with it.
I have even had the consultation with Dr Pedley about the CT Scan results too.
It’s not the results we wanted…Again.
Basically, the CT showed that there has been no resurgence of cancers in my abdomen. My liver, spleen, pancreas and bowel all show no signs of cancer which is always a win. Considering the battering my bowel took from the combined radiochemotherapy. I am surprised to this day that it works.
I still suffer from the most insane stomach cramps and even looking at certain food types can give me a runny bum[This may not be true]
The not so good bit is my lungs, for all the crap I have gone through in the last six months my lung metastasis didn’t take to the chemo. “There has been a small but significant increase…”,”Approximately 10-15% increase in size on all of the legions”
There aren’t any new legions which is a win, but they seem to be unaffected by the chemotherapy.
However, what I don’t understand myself is that folfox hasn’t seemed to work for me at all really, when I was on folfuri, I lost my hair and good gods I felt like death warmed up but it worked. Then we move onto this folfox concoction and it doesn’t make me lose my hair, it barely gives me sickness and diarrhea but brings a much different (and worse in my opinion) set of side effects, and then well… doesn’t produce the results.
Now I know that chemo’s effeigancy is finite. However, I have only been on this shitshow journey for two years. Surely it can’t have stopped working already has it? I honestly don’t know. The sad thing is that I never really think of asking these things of my oncology team at the time. I really struggle to hold myself together on these phone calls with Dr Pedley. I look across the room to Kerry usually and hope to gods that she’s going to be able to explain the stuff to me after the call.
Dr Pedley doesn’t see the need to keep me on chemotherapy at the moment and has mentioned the next course be an oral tablet form of chemo if we do continue but that’s bullshit. I’m not ready for palliative care yet. There’s plenty of fight left in me but I honestly don’t know. Does this mean he has given up? Do I start thinking about asking for a second opinion? Do I speak with Professor Mark Saunders from the Christie clinic in Manchester again? I don’t know. I really think I need another sit down with Dr Pedley. I think actually I need a face to face with him. Write it all down and then go speak to him.
About 2 months ago, I had a chat with Dr Pedley and he mentioned that he’d suggested that we have my original biopsy sent off for genetic testing. Now this is done to some degree when you have your biopsy, they’re looking to see whether your cancer has a genetic or mutated marker. Mine… Well of course it was mutated meaning there wasn’t a magic medication that they know of that could rid me of it.
However, as Dr Pedley had eluded they’d do more of a molecular profiling job as they have access to more toys over in the US. He’d also cleared it with Aviva my insurance company. Although the treatment may not be covered, the testing would be.
Dr Pedley has also received the news that they were unable to find anything in the genetic profiling or on a molecular profiling to give me a specific treatment. I hadn’t got my hopes up but they still have information they can work with so it wasn’t a waste of time, money or effort.
So what’s next?
Well, at the moment a bit of a wait. I haven’t had chemo in about a month, I am waiting for my nurses to come today and give my chemo port a wash out and take some bloods for testing. That’s going to happen every month for the foreseeable. It has to anyways as they have to flush out my port or it’ll stop working.
Dr Pedley has sent a letter to Professor Plumber at the Northern Centre For Cancer Care *(NCCC)
He deals with early stage medical trials to see if there is anything I can go on for that.
I received a letter about a meeting thursday of next week for that. Sadly, due to having plumbers out all day next thursday, I had to call to push that back a week. However, although I won’t get my hopes up. Who knows what that may bring to the table?
I am going to go back to using cannabis resin to complement any further treatment. I am also going to speak to Dr Pedley again now I have had time to take in everything that he said. I have further questions and I need to know that he’s not given up on treating me.
Kerry and I have discussed a change in diet. Sugars being removed from the diet for a start. Other things like removing red meat and processed foods completely from my diet. That can really help too.
Sorry it’s been a bit of a doom and gloom blog but really. It’s all I have at the moment. I will try and get another blog out again soon when my finger tips allow it.
I’m okay surprisingly, I don’t feel at all well at the moment but I am soldiering on.