Well it’s been a while, over a year since my last post in fact. That’s largely because there’s not been much to post about. I’ve settled into a routine of monthly clinic appointments, quarterly treatment, quarterly chimerism blood tests and quarterly disappointment when the blood counts haven’t moved. If you recall, the reason behind my allograft was to replace my immune system with my sister’s. So far, that’s only been partially successful. My immune system, which was crap for dealing with Hodgkin Lymphoma, seems to be pretty effective at standing its ground against the initial onslaught and regular reinforcements of my sister’s. It’s like the great Lego war of 1975. As I type only 41% of the white cells going round and round in my body are my sister’s. Establishing these numbers is a pretty tricky process. The blood tests take 3 weeks in a laboratory and involve extracting dna from the blood cells. It’s all pretty clever stuff.
To try and shift the numbers north I’m back in July for another 30 million cells. To date I’ve only had 14 million across three quarterly infusions, with the dosage going up in multiples of 3 each time. The last dose will be in October unless I hit the magic 100% mark by then. After that I’m out of cells and we’ll just have to hope the numbers creep up on their own. Reaching 95% is important, because there is a 10% difference in the chance of relapse between ‘mixed chimerism’ and being totally donored up (to use a technical term).
So what else has been happening? Well some of my friends from clinic have gone from strength to strength while others haven’t been so lucky. The first lady I met on the Nivolumab trial back in the Summer of 2015 didn’t make it through her allograft and I know a few others who are waiting on trials having exhausted all of the established routes to remission. I think of them all a lot.
The good news is that today NICE licensed the use of Nivolumab for use in treating post autograft (bone marrow transplant with your own cells) Hodgkins Lymphoma. It was great to be involved in the trial and I like to think that I made some small contribution to the treatment of other patients in future. Immunotherapy drugs such as Nivolumab would seem to be the way forward and it feels like we’ve really taken a giant stride in tackling a variety of cancers with Nivolumab or Nivolumab variants.
The totally shit news, and I sincerely apologise if this comes as a shock, but we’ve not got around to telling everybody yet (because that in itself is an exhausting and stressful process), is that Katie – presumably not wishing to be left out – was diagnosed with breast cancer a couple of weeks ago. We seem to have caught it quite early and the prognosis looks good, but it will still mean 4 and a half months of chemo, maybe radiotherapy and definitely a mastectomy at the end of it. The process from gp appointment to the appointment with the oncologist next Tuesday has been admirably quick. The only issue we’ve encountered so far has been poor expectation management. We saw the surgery team at the Royal Berks first and they told us last week that a mastectomy on 12th June and maybe some radiotherapy would do the trick. At that point chemotherapy was definitely off the table. So, to be told a week later that the oncology team were recommending chemo was a shock and, as Katie said, made her feel worse than the original diagnosis.
So, we have another challenge ahead of us. Katie has already started playing the cancer card because, she “learned from a master”. I thought that was harsh, but probably fair. I know few people better equipped to deal with this than the Mrs. She made it up to Glasgow for a good friend’s wedding, despite the post operative pain she’s still having, by courageously and selflessly drinking through. The shock of diagnosis was assuaged by a swift course of vinotherapy. I can’t pretend I wasn’t walking around in a bit of a daze thinking dark thoughts for a while as I tried to get my head around what was going on, but I will say that our experience with my cancer has helped us dealing with hers. We know our way around a hospital, we know what an mdt meeting is, we know how important your clinical nurse specialists are and we know that life is never quite the same after a cancer diagnosis. But we also know that cancer can be beaten (even after a couple of score draws) and, most importantly, we’re a formidable time when the going gets tough. I’m sure my lovely wife will be up and about at full strength long before my cell count hits the 100%. Who knows where fate will take us next, but to quote one of Katie’s favourite bands:
“Who knows what tomorrow brings
You might be dead
Might be a king
So let’s have ourselves a party along the way”