Heya - hope this update finds you all well and I hope you’re all continuing to outrun the dreaded Covids.
This weekend just gone, the government have updated the advice for folk like me, the shielders. Not only do we appear to have jumped up the alert scale, but my original advice of “Stay Home for 12 Weeks” has been overwritten twice in the space of a couple of days; originally set to end on June 14th, then June 30th, and then with updated guidance. It appears to me that us shielders were forgotten about when updated restrictions were announced for everyone, and so we were thrown a dog biscuit late on Saturday night. In a nutshell, the advice offers that it’s ok for us to go out for a walk (yay!), with new people (mmm, ok), no gatherings or buildings (well, duh) and DO wash hands & maintain social distancing (goes without saying, chief). This is all fine, but the other people seemingly forgotten about over the weekend were the scientists. Where’s the science we were following gone? Why did Chris Witty have to block Johnson’s bid to change the alert level from 4 to 3? Why are they making it all up as they go along while 60,000+ people have died? Anecdotal feedback so far from shielders on the news and in tweets etc is that they will start to manage their own destinies. It suggests people are now ignoring the government, and with today’s announcement that today’s Covid deaths is around 3 times LARGER than it was yesterday, who can blame them? The government would quite rightly argue that it’s just guidance and not legally enforceable (don’t get me started on Dr Doom’s Barnard Castle Death Drive) but looking at the stats for the UK I’d argue that stronger, earlier lockdown rules (and for people to abide) might have been useful back at the start. Myeloma-wise, whilst my recovery continues at a slow pace, there isn’t much to report. The PET scan I had in February appeared to show some myeloma cell activity but there was some positive news in April following a re-scan; April’s scan showed no disease progression & indicated that the myeloma is in plateau phase. Good news for sure after a bit of an initial fright. More recently, a fortnight ago I had a minor set back with a touch of fever taking hold and my lower back in agony. After a chat with the alert line they sent an ambulance to bring me in to the Freeman for a couple of nights. Not my favourite weekend place to stay, but I was extra nervous what with Covid-19 and everything. I was given a Covid test almost on arrival (negative I’m pleased to say) and I was pleased to see staff had at least the basic PPE items, although one guy I spoke to bemoaned the general lack of enough PPE to go round. The stay in hospital was purely precautionary is it turns out, and as hoped medics were able to settle my high temperature, the issue with my lower back appearing to resolve itself after a few days. With my historic back problems still in memory naturally it was concerning to experience more back trouble and the consultants were nervous enough to send me for an MRI scan whilst I was there. So all good under the hood - as good as it can be anyway and the old hair is coming back in thick & fast! It’s more or less the same colour as before although the only thing is, it’s currently curly.
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In these odd times I hope this note finds you well, in good spirits and coping with lockdown. As the Coronavirus continues to take lives the importance of following all applicable guidance should be obvious to most with at least half a head. For me the instructions are more restrictive, on two counts of having underlying health conditions (having blood cancer, and a stem cell transplant recently). I am classed as extremely vulnerable person and therefore need to take additional care, so in govt parlance we’re “shielding” - that is, the four of us now are isolating at home for 12 weeks.
So the point of this post? Well, just to say, we’re ok! The treatment plan is continuing well and the hair’s coming back in, although I’m still dogged by exhaustion, and bouts of fogginess. During lockdown there’s plenty to do, not least the task of home schooling which actually, mainly thanks to Eleanor, is going pretty well. Meanwhile, Netflix and the monumental prospect of new, wealthy ownership at St James’ Park is providing the entertainment. It helps having a garden to pop my head into when the cabin fever escalates; I really feel for those in similar circumstances but with no outdoor space. Or no internet. It’s little wonder people feel the need to make the most of their ventures into the lovely Springtime weather we’re having. With no end in sight to the lockdown measures it’s extra important that we all take time look after ourselves and each other. Stay safe x I haven’t been in a writing sort of mood much lately but things have been going pretty okay since the turn of the year. I have gradually started to take more varied foods as the nausea subsided - out with the Pot Noodles and in with the jacket potato & beans, and the egg baps for example. Into January and I not only started to feel a bit like a normal person, but also began to enjoy some initial signs of hair growth! Wooly hats have been my thing lately what with it being a particularly chilly winter. I’m just not used to having a bald head so the sight of some hair has given me a huge lift. Generally I’m making good progress with my recovery every day and I’m feeling positive about it all. Negatives; my lower back is still tender, my feet are sore (neuropathy) and I tire easily but I expect that’ll all improve as we go. As a family, we’re all becoming more careful about what we eat now too - no meat and radically reduced dairy, although we can’t all claim to be full vegans. For me Veganish is probably accurate as, although I’m not eating meat or drinking cow’s milk, I do have eggs and a bit of cheese here and there. Small steps. The maintenance treatment plan starts later this month and will consist of 8 repurposed drugs (from a doctor we had consultations with through last year), along with India-sourced Lenalidomide. The repurposed drugs plan has been tailored for me and the drugs have been selected to attack myeloma cancer pathways specifically. It’s all well-tolerated, and low-toxicity stuff so unlikely to cause any issues. Anyway, all this will make the £90k we raised go much further, and thanks to the support & generosity of you all, and all who have donated during last year, with this approach the cash will last 3 years rather than 1.5. Then we will see what’s what in 3 years time. So, is the cancer still at bay? We think so - the blood tests I’ve had haven’t raised any alarm in the oncology ranks at the Freeman - but this week I had another PET scan so we’ll soon find out for certain. The report from the scan should be made available to the oncology team and should be up for discussion by the next myeloma clinic appointment which I have next week. Hoping for a good result, and continued wellness in my recovery. Keep your fingers crossed for me. I’m coming back baby! Approximately 10 days into the process and the chronic nausea I had been suffering from for, well, about 10 days was showing no signs of abating. I am composing this update in January and post-dating it. As I write this I am recalling the sights and sounds of the hospital ward and quickly rejecting most of those memories. And at the time I was in no fit state to be reading, writing or thinking too much whilst in the throws of chemo induced distress. On reflection I can summarise it in a handy nugget; it was bloody awful!
First things first, and this can’t be said often enough, that the NCCC in general & the staff looking after me (and everyone else) cannot be praised highly enough. They made the whole experience immeasurably better. But the effects of the treatment didn’t fare me well. After administering the chemo on day 1 I had a day off from any treatment, save for routine obs and such. Day 3 was a trip to the Institute of Transplantation for the transplant itself; for me, routine in itself, although the first signs of sickness began to surface as my previously harvested cells were secreting their way back in to my bone marrow. It was over pretty quickly though and I was soon whisked away back to the ward where I’d remain to allow engraftment to take place. Until my blood counts ’n things were at an acceptable level, so that my immune system would be functional, I was staying in. The next 10 days were pretty tough; away from my family, Christmas approaching, and the sickness just wouldn’t shift. After exactly two weeks of being in hospital, the consultant gave the nod that I could go home; my neutrophils, potassium levels and platelets were on the up and looking good. Fantastic news, although I was still feeling sickly, without appetite and as weak as a kitten. Home recuperation is the best thing for all that though, I reckon. And it was such a relief to be back home, and my girls had made me a huge welcome home banner which I love so much! I wasn’t eating much (pot noodle & weetabix) but “recovery starts here”, I remember thinking. And what better incentive to get well than with Christmas just 4 weeks away! Reflecting on my final weekend at home before I go in for my stem cell transplant on Tuesday, only in the recent couple of weeks have I been feeling uneasy at the prospect of staying in hospital. The touch of neuropathy in my feet hasn’t helped matters as the condition also made my legs feel tender, heavy and agitated. My recent stem cell harvest, whilst successful, wasn’t the piece of cake I was anticipating; the awkwardness in my legs meaning lying still for a few hours filled me with anxiety and meant for most of the process I had to keep my legs moving - I even stood up on one or two occasions. Neuropathy is a strange one although it seems to improve with a bit of exercise. On the eve of my admission to the NCCC I was feeling a bit more relaxed; I’m sleeping a bit better (again, a bit of physical activity helps) and the discomfort in my feet is improving.
As I write I’m in hospital to begin the process; feeling relaxed and positive, and ready to do this! I’m hooked up to a bag of fluid and as I wait for the bag to drain I’m already looking forward to Janine and the girls visiting me. Next step, chemo. 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 Chemotherapy cycle #4 started on Tuesday this week and just as night follows day, as I began my first 4 day course of steroids and my bi-weekly Velcade injections. After a fortnight of general fatigue, I'm up again at 4am and ready for the world. I almost wish I could be taking the steroids full time if only for the energy they provide me with. This may be the last course of the standard VTD treatment I receive (for now) - as previously mentioned blood test results have been positive and, in our lead consultant's own words, I have been tolerating the treatment remarkably well. The team at the Freeman are booking my next PET scan as well as looking into booking my stem cell transplant which is looking like it could be in October. More should be revealed at our next Myeloma clinic review in a couple of weeks but as the clock ticks we have been continuing to work hard to secure a way forward for how we go about obtaining the Revlimid drug when the time comes to take it (100 days after the transplant is completed).
Over the past month we've also been working to understand more about the precise nature of my condition. We received some surprising news in June - despite receiving the verdict from the MUK 9 trials team who classed my test result as standard risk, we've since learned my diagnosis is actually classed as high risk due to specific genetic abnormalities being present in my bone marrow - abnormalities it seems the MUK 9 team weren't looking for. Whilst this doesn't change anything in terms of the standard of care treatment I'm receiving, it radically changes my prognosis for the worse so naturally we're keen to understand more detail. The news downgrades my overall survival time from 5 years to 3 years. As for obtaining Revlimid maintenance, well given it's not available on the NHS as a first line maintenance where one is eligible for a stem cell transplant (me), we remain left with Hobson's choice: we must have the drug prescribed, pay the going rate and ensure we maintain appropriate care & monitoring along the way. This is a seriously controlled drug and I can't take the risk of not having the right care, monitoring and safety net if I react adversely. Our consultant put us in touch with an NHS haematologist at the Rutherford Cancer Centre in Bedlington to discuss how they might be able to help, and in June we had a very productive conversation which opened up a tangible option for having the drug prescribed, whilst sharing care and ongoing monitoring with the team at the Freeman hospital. At home, my wife is the real hero in all of this. She's taking care of all the phone calls, the battle for information, and the relentless fundraising arrangements (more details on the Fundraising tab above). This leaves me to try and stay de-stressed (I try), work from home, and be a dad and a husband. It's not always easy with the cloud of myeloma hanging over us but we do our best and the love and support of my girls, our family, friends, neighbours and colleagues, and total strangers for that matter has been key. As for how and when we proceed, I guess we'll find out in a couple of weeks. Stay tuned. One of the complications of myeloma is a compromised immune system, and the increased risk of picking up an infection. A slight fever, cold or chest infection, for example, could become quite serious for someone in my position and as a result I am advised to call the Clinical Haematology alert number if I’m feeling unwell and/or my temperature goes above 37.5 degrees C. I try to stay out of harm’s way by limiting my exposure to potential harbours of germs. My employers at Pulsant have been great in allowing me the flexibility to work from home, and as per the advice of the team at the NCCC, small children are pretty much banned from our house. Coughs ‘n sneezes spread diseases, so said the old 1940s public information film.
But, despite all my best efforts to stay clean, on Friday I started feeling rather unwell; sore throat, chesty, coldy, and then on Saturday morning my temperature spiked to 38 degrees. We phoned the number and they told us to come in and, long story short, I was admitted overnight for observation, and to take a short course of intravenous antibiotics. The hospital staff as usual were all fantastic; helpful, professional, and they made my stay as enjoyable as it could be in the circumstances. I took whatever medication came my way and so anyway, my temperature came down and I began to feel a bit better. After a restless night’s sleep and with my temperature in check I was set to go home the following morning to convalesce. I began to count down the hours and minutes until the consultant sent me on my way with some antibiotics. Having time to spare in a hospital ward afforded me plenty of time to gather my thoughts. Primarily overwhelming sadness that I was unable to be at home with my wonderful family - “it’s not for long”, my mantra of self-reassurance. But I also started feeling guilty; for occupying a bed when I don’t think I feel all that poorly, like a cuckoo in a nest of genuinely sick people. I mean, I know it wasn’t my decision to stay overnight but still. And then as I sit and stare into space I remember the pickle I’m in and why I’m really here. Oh, yeah ok. Today begins the second cycle of chemotherapy treatment. As mentioned, I’m on a two week on, two week off cycle so essentially it’s one cycle of treatment per month. The day began with a consultation in the Myeloma clinic which proved to be very useful indeed. We discussed my current state, how I’m coping with side effects and previous blood test results. Interestingly my previous bloods have shown a very positive reaction to the first cycle of treatment; protein levels have dropped right down and our consultant seemed confident this may reduce the number of chemotherapy cycles I need to endure. Nothing is certain of course and we’ll see how we go, but it mean the looming stem cell transplant could be scheduled a month or two earlier - well away from Christmas, which would be nice. We moved on to maintenance therapy and discussed our fundraising efforts, and we took our consultant’s view on some of the options we might have for obtaining the Revlimid drug when we get to that stage. A very interesting and productive morning.
Then we we moved on to the drugs stage; up to ward 36 for more bloods, and my Zometa infusion before a brief hiatus, returning later in the afternoon for my Velcade injection. Once again, I didn’t leave empty handed - a plastic bag this time (tsk) but full of more of the good stuff I need to take over the next 28 days. Aside from the fatigue, soreness and light-headedness, I feel like I’m already kicking this myeloma’s ass, and if these blood tests continue to show a downward trend, the data just might start to back that up. Today marked a significant point in the journey as not only did my brief blast of radiotherapy come to a close, but the results of the bone marrow biopsy returned from the lab, and I have the rest of my chemotherapy schedule.
Firstly, the radiotherapy process was like clockwork as expected. The radiology staff at the Freeman were fantastic; efficient, proficient, and friendly & supportive. However, my earlier bravado backfired somewhat - the radiotherapy knocked me for six. Mainly with extreme fatigue, although as my sleep app proclaimed, I have been recovering some much needed sleep hours. Nevertheless, fatigued I am, like ready to fall asleep at random times of the day, that should be the end of the tumour on my L3. However my lower back and legs have felt slightly tighter than usual, so yeah, I’ve been feeling generally meh. On the plus side, one of the other common side effect, nausea, has generally eluded me - I don’t deal with nausea very well in general so that’s a major plus - but all symptoms will fade with time. The radiotherapy itself will continue to take effect for another week or two so I just need to hang in there. Later in the day I received the phone call we’d been waiting for, from the MUK 9 trial team at the hospital. I am classed as standard risk (of abnormalities in the cancer cells) and therefore would not be continuing on the trial. The result gave me mixed feelings; I am pleased not to be classified as high risk (which could introduce its own complications down the line, and with it a 50% lower life expectancy), however the trial would have opened me up to a wider range of treatments not yet available on the NHS. Significantly, as a standard risk patient, I will not automatically receive the ongoing maintenance phase of treatment which succeeds the VTD chemotherapy and stem cell transplant phases. Trials and studies have demonstrated that the maintenance drug lenalidomide (street name: Revlimid) can double remission time in patients, and its adoption as standard of care treatment on the NHS is not only supported by leading experts in the field but is being lobbied for. It’s something of a frustration, though perhaps down to an unfortunate timing issue, that Revlimid isn’t something I can be provided with once my treatment is finished, yet. Taking matters into her own hands, my wife has brazenly launched a fund raising effort (see: Fundraising tab above) in an attempt to raise the funds required for the first year of Revlimid treatment. It’s a tall order but you never know, and if it can give me more time on this planet to see my daughters grow up, and see Newcastle United continue to win no silverware, I’ll take what I can. So, on we go - I also received my schedule for the next six cycles of chemotherapy treatment (including the steroids and Velcade injection) taking me up to Halloween. And I have dates for each of my next nine monthly Zometa infusions, taking me through to mid-January 2020. Big day, and a busy time ahead, but good to get dates in the diary. |
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
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