Hello again! I haven’t written for a while but rest assured, I’m doing well, everything’s under control and we’re proceeding in the right direction! We’ve covered a lot of ground since April, and after 5 rounds of chemo I’m poised to embark on my stem cell transplant. In parallel, as you may have read on the Gofundme page, we've recently had the most amazing news from my recent PET scan which has revealed that there are NO active myeloma cells in my body. Of course, the myeloma is still there and always will be - however it is now inactive and that's the way we want to keep it for a long time. I’m not out of the woods yet and we still has the stem cell transplant in a few weeks. It is the maintenance treatment I receive after the transplant that will play a significant role in keeping the myeloma away. Because of my high risk cytogenetics relapse happens at a much quicker rate than other myeloma patients - this is why it is crucial we can secure this.
A few weeks ago we also attended a Myeloma Info day for patients and carers & we learned A LOT about the disease from world-leading experts in this very rare cancer. If I start Revlimid I must stay on it until relapse otherwise it cannot be used again (and treatment options are limited). As a result we’ve had to rethink some things. Despite how amazingly well our campaign has been supported it’s become clear that the rate of fundraising we’ve been working at is not sustainable, and as a result we've had some difficult decisions to make. In short, it's not sustainable to raise £60000 every single year, and allow some normality back to return to our lives. So, we are going to look into other maintenance treatment options that are more affordable with the money raised so far. My wife has written a more detailed explanation to this decision which you may have seen already via the Gofundme page. But, despite having to take a different direction we still cannot thank you all enough for your incredible generosity and kindness. You’ve exceeded our wildest expectations, and without you we wouldn’t even be where we are. We’re both truly humbled. Regarding the stem cell transplant, well I have had the meetings with the fantastic team at the Freeman, and as of yesterday I’m now in possession of my induction injection kit. These injections are designed to stimulate stem cell growth in the bone marrow to the point where the bones will contract to force out what it will see as excess stem cells. These stem cells will enter the blood stream and therefore will be easier to collect when the stem cells are harvested. I've done two sets of injections so far & my harvest is next week. Once we’ve harvested two successful samples, these will be stored and we reach the business end of the deal. In a couple of weeks I’ll be admitted to hospital to have my bone marrow wiped out with some industrial strength chemo, before they reintroduce the previously collected stem cells to my body. During this period it’s estimated I’ll be in hospital for at least 2 weeks, with a lengthy home-based recovery period promised for the New Year. To say I’m looking forward to it would only be partially true - I’m keen to get things underway so we can get back home and start to look forward to normal family things again, like Christmas! Despite the encouraging and supporting words of the fellow Myeloma patients we met at the Myeloma Info Day in September I'm nervous. Nervous, apprehensive and a bit frightened. It will be an experience that's for sure & I’ll write more as we proceed through the process. Thanks for listening and all the best x
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About meI'm David Jameson, I live in Whitley Bay with my beautiful wife Janine, our two children and our two dogs. I love music, and Newcastle United. And I have multiple myeloma. Archives
June 2020
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