Health Updates 2017
April 2017 - N.E.D.
I had a full body PET CT scan which showed No Evidence of Disease (N.E.D) no detectable cancer - woo hoo! That's 3 months in a clear, but it's a long way off 5 years which is considered "cured".
July 2017 - Recurrence to the bone
Another PET CT scan mid July showed I was N.E.D. (no evidence of disease). However, my tumour markers for C.E.A and CA 19.9 started to drift up to the top of normal range plus I had been experiencing similar lower back pain to the time of my initial diagnosis. Suspecting an recurrence therefore, I had an MRI in late July which showed there is some cancerous activity in the sacrum bones, S3 and S4, so I began a course of radiation to treat these in August 2017.
While I am devastated that it is "back", I was under no illusion that I was cured. "Cured" is a term sparingly reserved for those in remission for over 5 years and my oncologist had always made it clear that my cancer was dormant rather than absent. However, I have to be strong and remember how far I have come. This time last year there were 24 prominent tumours on my PET scan, whereas today there are zero, but a tiny amount of disease visible on the MRI. And I need to be grateful that it is only in these bones and nowhere else, meaning we can use localised radiaton therapy rather than systemic chemo, the latter of which is far harsher on the body. My back pain is expected to diminish after a few sessions of which there will be 10 in total, and hopefully I can soon return to the highly prized status of N.E.D.
While I have been shifting from a vegan to a ketogenic diet in the last few months, I am now going hardcore keto, while trying to limit the dairy, which is tough! Generally I avoid all cow's milk anyway but have the odd indulgence in sheep's or goat's cheese/yoghurt. And I will take a break from my supplement programme while I research exactly which ones may enhance the radiation therapy.
UPDATE AUGUST 23RD 2017
I finished the radiation therapy last Wednesday. It was an interesting couple of weeks... When I turned up at the Sanitorium Hospital for my pre-assessment, I had to lie flat for around 30 minutes while they made a mould of my body to lie in for the treatment. Lying on my back put pressure on the exact part of the sacrum where the disease lay, and was therefore painful, so I took a Tramadol to ease the pain. Unfortunately this didn't touch the sides so they had to administer an injection of pethidine. This was G.L.O.R.I.O.U.S! Pethidine makes you feel slightly floaty, high, chatty and certainly takes away all your anxieties. I was definitely their chattiest patient of the day and it's probably the closest I have come to a G&T in the last 14 months. I "needed"(!) the injection for every radiation session, which were scheduled conveniently (by myself) at the end of every day, since I couldn't drive after the pethidine or manage three small children! The irony was that after a few days, I actually started to look forward to my radiation appointment with the same excitement that most people probably feel when off to the pub!
To prepare for my radiation therapy, I spent a good afternoon trawling the About Herbs app from Sloan Kettering to determine which natural supplements could help potentiate radiation and minimise the side effects. You can read these here, along with the research backing up each one. To reiterate previous disclaimers, I am not medically qualified and this should not be read as advice, I am merely sharing research I have read.
UPDATE SEPTEMBER 5TH 2017
A week after the radiation finished, I had a follow up appointment with my oncologist when they tested my tumour markers. I was hoping for a fall post treatment, but in fact they doubled, suggesting there may be something active elsewhere in the body. I was therefore pretty upset, and had to go through another PET CT scan to investigate where the other activity might be. However it came back clear and this week my tumour markers have halved, implying that first, the radiation was successful, and secondly, there may not be anything else active. The rollercoaster continues! Back in 2 weeks for the next check up...
UPDATE SEPTEMBER 19TH 2017
I had my tumour markers tested today and was hoping for another large fall to bring them back into normal territory. This would have signified to me that the radiation had successfully zapped the tumour and nothing else was active. However, while my CA 19.9 fell fractionally by 5% to 64, the CEA rose 23%, suggesting there is something still active. I suspect it's in the bone as the tenderness around my sacrum is still there despite the radiation. We will retest tumour markers in 2 weeks from now and look to start a chemo pill possibly after that if my markers have still not fallen. I am disappointed obviously but trying to remain strong for my family and remember still how far I have come, and there are still lots of options out there.
UPDATE OCTOBER 11TH 2017
Unfortunately the last set of tumour markers continued to rise. This coupled with increasing back pain makes it pretty clear to me and the doctor that something is still active, at least in the bone, if not elsewhere. However, since I am otherwise symptom-free, he prefers to wait longer before starting treatment, so I will just carry on as usual, while having blood tests every 2 weeks. Next ones are on Tuesday. I really do feel absolutely fine, great in fact. Just back from a fabulous five days of holiday in Cambodia with my family where I swam lengths every days, visited temples and ate tonnes of great food. The only thing I can't do right now is lift my children for fear of hurting the bone further, or sleep on my back.
UPDATE NOV 1st 2017
Tumours are continuing to rise, along with an increase in my back pain, so we are now considering some stereotactic radiation to the bone. Otherwise, I will probably have scan at the end of the month to see if there has been any other spread and whether or not we need to begin chemo again. Still feeling great however with lots of energy and exercising every day. Sometimes I forget I even have this disease....
UPDATE NOV 26th 2017
We were trying to hold out until the end of this month for a PET CT scan, since it's not good for you to be scanned too often given the radiation, however my tumour marker CA 19.9 jumped from 300 to 800 (normal is <35) so we brought the scan forward to last week. I was terrified it would have spread further than the bone but in fact it is still just the sacrum bone which is active. This is quite pleasing, as it means I can avoid chemo for now. If there had been any other spread elsewhere, it would have meant chemo for Christmas, which is the last thing I want! That bone lesion is larger and more active than the last scan on August 25th, meaning that the radiation applied in August was largely unsuccesful, which is disappointing. However, they now plan to attack it with a more precise kind of radiation (why couldn't we have done that before??!!) called cyberknife. I therefore went for an MRI after the PET CT results, in order to get more precision on the size and location of the tumour. They will look at the scan and then prepare a cyberknife plan with dosage, number of sessions etc. I still can't comfortably lie on my back, and they need to be perfectly still for it, so they are considering knocking me out of for it with pethidine or something stronger. Every cloud....
UPDATE DECEMBER 2ND 2017
I went for my cyberknife simulation yesterday where they did another CT scan and MRI while working out how they were going to make me comfortable lying on my back for the actual treatment which should start on December 11th. We tried one shot of pethidine but that wasn't enough so I ended up with another shot and a valium. I'll be lying if I said I didn't enjoy it! The afternoon went swimmingly for all concerned and I even went straight from the hospital straight to a dinner party! Is is weird to say that I am not actually looking forward to the cyberknife sessions?! There will be 3-5 of these, every other day starting next week. Praying this will send me back into remission....