Thursday, 14 May 2015

James had started a new post entitled MRI Scan, which is where I should begin.

(James words) For a few years, I'd been hoping that my treatment would one day require me to have an MRI scan; I'd been in just about every other scanner, and I wanted to complete the set, whilst experiencing how it differed from CT and PET-CT scans! Unfortunately, the price that I needed to pay was suffering from sudden bursts of lower back and hip pain that were so excruciating that I was unable to walk; Laying-down and sitting-up were also extremely unpleasant. Consequently, I had mixed feelings about the MRI scan when the time came, because, short of knocking me out, it was going to hurt! 

I (James dad Rob) really don't know where to start with this so I think I will just go with the flow as they say.   First of all he was right the MRI scan did hurt whilst he got onto the table and again when he got off, he had to sit in his wheelchair for 30 minutes before he could make to move to the car and get in ready for the journey home.  The journey home was slow and I tried as best as I could to avoid any bumps in the road as the immediate response was a groan from the passenger seat if I hit one.  When the local council insisted on putting in speed bumps on the estate I don't think they thought about the poor people who suffer with bad backs, even going over at 10 mph brings a reaction, but as they say one mans gain is another mans loss, or in this case pain.

  To those of you who don't already know our son lost his battle with cancer on the 9th December 2014, we all knew it was coming, but it didn't really prepare you for the finality of the loss. The emotions you feel at that time are hard to describe and I don't think anyone can actually put it into words of how physically drained you suddenly become and the weird things that go through your mind.  There are obviously quite a lot of people who will read this blog and know what Jacky (mum) and I experienced that day and our deep felt sympathy goes out to them and to those who will no doubt be in the same situation that we were in, all I can say is be brave for whoever you are looking after give them all the love and support you can.

This will be a very brief and definitely not as factual last post as James would have done, it will not be up to the high standard that he maintained, but I must at least try to finish this blog for him.  During October James decided that he would ask the doctors for yet another scan, really just to see what was happening inside his chest, because he wanted to know if the treatment was working or not. However, as usual the doctors held a different opinion and just wanted him to carry on without a scan, as he was going along ok at the minute. They didn't think there was any benefit in knowing if the cancer had spread or the drugs were keeping it at bay, so it was a kind of stalemate.  But yet again pester power came into play and James finally got his wish to have yet another scan, this was arranged for the middle of November, this brought about a minor change to the usual routine of chemo every two weeks, which normally meant that he would have maybe 4 or 5 good days out of the fortnight. His chemo would be delayed for one week to fit the scan in and he could have maybe 11 or 12 days of not feeling tired and not upto doing anything. The scan date came and went without much else happening, although James appetite had diminished even further than normal and much to our surprise he said he longer enjoyed his favourite meals of pizza or lasagna, because the tomato now tasted unpleasant. Then, he came out with what can only be described as astounding to all those who knew him, he had started to enjoy a gravy dinners, to those of you who didn't know this was something that mum and I used to threaten him with at least once a week, although in all honesty you couldn't describe what he had on his plate as gravy, it was more like coloured water. 

Anyway I digress, after being told that he would have to wait at least two weeks to find out the result of the scan, he once again brought pester power into play, this time using email to try and get his own way.  So when we arrived on Friday the 6th December for his chemo and he was informed the Doctor would also give him the news of the scan after only waiting one week, it was a bit of a surprise but no that much of one, it is really was strange that every time he pushed certain buttons he got his own way.  Chemo done and after an hours wait he finally got to see the Doctor, who gave him the best news he could have hope for, the treatment appeared to be working and the cancer was at the same level as the last scan in August.  To say we all walked out of Castle Hill 100% happier than when we went in has to be an understatement, little did we know what was to follow. Saturday passed without any trouble and on Sunday James felt a bit poorly which we all put down to the chemo, so same as normal. Monday he showed a bit of an improvement but by the end of the day he said he was feeling cold, so the usual procedures began first take his temperature and if on the high side ring the hospital, which it was and so began the phone calls.  Again as normal there wasn't a bed available immediately but one would be ready for him when he came in, providing he left it a while.  James as usual wanted to email the rest of the world and organise himself for what we presumed would be another week of antibiotics, blood samples at 6am and mediocre food, but at least he would have the good company and support of the nurses etc.  So at about 11pm we drove him the short journey to the hospital and got him settled in, we saw the doctor who prescribed the antibiotics and left about quarter to one, James was on his tablet doing yet more emails. Finally got home and to bed knowing we had to be up early, as we had a parcel delivery coming sometime between 7.30 and 1pm, thinking James would be fine 5 or 7 days of antibiotics and back home in time for next lot of chemo. When the phone rang at 6.30am our first thought was surely that can't be the delivery man ringing to say he is on his way.  How wrong we were, it was the hospital saying James had deteriorated in the last few hours and we needed to come in asap.
All that day we just sat beside his bed with him asleep and according to all the staff he was thankfully not in any pain, it was strange but it was all I could focus on when the nurse or doctor came to check, I asked them each time I didn't want him to suffer any pain. I know we knew it was time but and at around 6.30pm just 12 hours from that call he passed away peacefully, we wasn't ready, it was too early, it was not fair, why him, why not me I'm old he had plenty to offer the world it all went through my mind. There are no right answers believe me I sat for hours trying to think of them, I know I'm stating the obvious to those of you who have been through it and I don't suppose it will stop others doing the same, I just thought if I could find something it would be a comfort.  I can't finish this without mentioning all the kind words and messages from all over the world we received after his death, it came as quite a surprise as to how many people he was in touch with and how he had tried to help them.

James you will be in mum and dads hearts and thoughts forever, you will never be forgotten rest peacefully son.  

Thursday, 11 September 2014

How do you treat relapsed and/or refractory Hodgkin's Lymphoma?

For the vast majority of patients diagnosed with Hodgkin's Lymphoma, the cancer is cured by the first-line treatment. However, for some patients, the cancer returns after the treatment (relapses) and/or proves to be resistant to the treatment (refractory). Fortunately, there are second-line and third-line treatments that can still potentially cure such patients, albeit with increasing toxicity and risks. Unfortunately, a few percent of patients ultimately fail all three lines of treatment. It's at that point where the goal of the treatment changes to controlling the cancer, rather than curing it. As you will know, if you've been following my blog, that's where I currently find myself, hence my timeline page shows a fairly typical treatment path for those unfortunate few.

When it came to choosing a treatment to control my cancer, the medical team at my local hospital considered three options: Vinblastine, Gemcitabine and Brentuximab Vedotin. Opinions were divided about which treatment was best, but Vinblastine was chosen in the end. Part of the reason why opinions were divided is that Hodgkin's Lymphoma is a relatively rare cancer to start with, hence when you consider that only a few percent of those diagnosed with it find themselves requiring such treatment, there are very few patients from which experience/knowledge can be gained, and consequently the evidence to show which treatment is best is somewhat lacking.

Note: Radiotherapy was ruled-out due to the Hodgkin's Lymphoma being in an area that has previously been irradiated, i.e. it would likely just cause more harm than good. Donor Lymphocyte Infusions (DLIs), which are a kind of boost of the donor's immune system, was also ruled-out due to the extent of the skin GVHD that I'd already acquired from the Allogeneic Stem Cell Transplant; If the donor's immune system was going to cure me, it would have done already, so DLIs would have just been asking for trouble.

It's perhaps not surprising that had my care been managed by another hospital, a different treatment might have been chosen. For example: the hospital that I attended on a few occasions in Leeds would have also considered the PECC regimen, but would have probably chosen Brentuximab Vedotin; and the hospital that I regularly attended in Sheffield would have also considered Bendamustine, but it's unclear what would have been chosen, as my local hospital had already opted for Vinblastine, and there were no strong feelings that something else would have been a better choice.

If you have been keeping track, you'll realise that's already five different treatments that might control Hodgkin's Lymphoma (albeit not indefinitely) in circumstances similar to my own. None of those treatments are currently considered to be potential cures, but in the case of Brentuximab Vedotin, it's not entirely clear whether that might change in the future. The reason being that Brentuximab Vedotin is quite a new treatment, hence more time is required for it to show its full potential; Having said that, there are patients for which it has been used to achieve ongoing remissions that are now approaching lengths where the medical community typically start to consider a patient as cured.

Over the last couple of years, it has become clear to myself from numerous online sources that there are several other treatments available too. The most commonly used seem to be: Everolimus (Afinitor), Lenalidomide (Revlimid), and Vorinostat (SAHA). Occasionally, even Rituximab (Rituxan) is used, as it appears to indirectly benefit some patients, presumably by targeting some of the cells around the cancer (microenvironment) that are helping to support it; In my case, that treatment might also help with the skin GVHD. More recently, Nivolumab has attracted a lot of interest, and a few months ago was actually granted the breakthrough therapy status by the FDA for Hodgkin's Lymphoma; It seems that Nivolumab and Ipilimumab work well as a combination too. In other words, there are quite a number of treatments available.

The existence of treatments that may help to control (if not cure) Hodgkin's Lymphoma is clearly a good thing, but, in some ways, the number of them can be problematic too, as it adds to the difficulty in deciding which to choose, especially when you consider that some of those treatments may have a synergistic effect when they're combined. For example, there are currently clinical trials taking place where the combination of Bendamustine and Brentuximab Vedotin is being investigated, as that may prove to be better than either of the drugs alone. There are many other clinical trials taking place too, often in the US, but until all of the evidence is in, it's a bit of a guessing game.

Whilst a number of the treatments that I've mentioned are of the more novel/targeted variety, i.e. not the typically more blunt/harsh instrument that is chemotherapy, that's not to say that they're without any risks or side effects. Consequently, whilst patients can (and do) jump from treatment to treatment, using each for as long as they prove beneficial, all of the time hoping for new breakthroughs/developments, our bodies are only capable of taking so much, hence eventually there is bound to be that straw that breaks the camel's back. The hope is simply that the cure comes before the straw!

Monday, 1 September 2014

Sidelining cancer!

Given that a PET-CT scan had just confirmed that my Hodgkin's Lymphoma had relapsed, you might be asking yourself what spanner could I possibly throw in the works that would put cancer on the sideline. To answer that question I need to rewind time by a few months, back to the day that I tried to lift something out of a cupboard, only to find that it was jammed-in, and in the process hurt my back. At the time I never gave it much thought, as back injuries are nothing unusual, but with the wisdom of hindsight I can now see that it was perhaps the first sign of the problems to come.

Over the weeks that followed my back felt like it recovered a couple of times, but then I'd somehow manage to upset it again. Generally speaking, the pain wasn't too bad though, so the assumption was that it would get better with time. However, what did prove somewhat problematic was that I also had a cough; Likely due to the Influenza A that my immune system was struggling to eradicate. If you've ever had a back injury and a cough at the same time, you'll know that the two don't go well together.

For a while, I did my best to only cough when my back was supported, e.g. when sat in a chair, as the level of pain was much less that way. However, as much as I tried, sometimes I couldn't hold the cough in for long enough to ensure that the pain was minimal. There were a couple of particularly memorable occasions when I coughed and triggered an intense pain like nothing I've ever experienced before in my life; The pain would only start to subside when I took the weight off my back too, hence I quickly needed to somehow support myself with my arms before I collapsed in a heap.

One time, I grabbed hold of a door handle, all tensed-up and hardly able to breath, and froze there for what seemed like an eternity, until the pain eventually dropped enough that I could gradually start to relax and let go. The other time, I fell backwards on to my bed, yelled-out uncontrollably, rolled on to my side, and didn't dare move for about ten minutes. For the latter, I remember my back suddenly feeling hot, before the sensation faded and spread-out across my body, leaving most of me literally wet to the touch.

There had been an attempt to treat the Influenza A with Tamiflu, in the hope that it might ease the cough and allow my back to heal, but it didn't seem to help at all; If anything, it actually added to my symptoms. However, since having the Allogeneic Stem Cell Transplant, blood tests have shown that my lymphocytes have been fairly low, which is perhaps why I've picked-up a few viruses, hence the dose of my anti-viral medication was doubled; The lymphocytes in our immune system provide the main defence against viruses. It may have been coincidence, but after a few days of the increased dose of anti-viral medication I was coughing much less frequently.

Unfortunately, whilst not coughing as much certainly helped, the intense back pain could also be triggered by certain movements. For example, a couple of days before I got the PET-CT scan results, I was sat down, feeling fine, but then I bent-over to pick something up, and the pain I felt was excruciating. It was likely that incident that led to me being admitted into hospital a few days later, as afterwards trying to manage the pain using Oramorph alone simply wasn't working-out. The decision was made quite unexpectedly, because whilst I was on the phone with the hospital that day, it became clear to the nurse, just from my voice and the pauses in conversation, that sometimes I was struggling to speak, because the pain was quite literally taking my breath away.

On the day that I was admitted into hospital, I should have been starting my fifteenth ECP treatment, but it had been put on-hold whilst a treatment plan was determined for my Hodgkin's Lymphoma; I'd just started a five day course of high-dose steroids too, which meant that the ECP treatment was redundant in the short-term anyway, as we already knew that steroids were an effective way of treating my skin GVHD. Very little else actually happened that day, as I was pretty much pain free when sat in bed, and it was early evening when I got there, hence most of the doctors had gone home.

By the next day, the doctors at my local hospital had discussed potential treatments, and decided that Vinblastine chemotherapy was my best option. Given that I was now an inpatient, the plan was to start that treatment in the afternoon, whilst also adjusting my pain medication. However, the Vinblastine chemotherapy was delayed by a day, as I wanted to ask the doctors in Sheffield for their opinion, as they had managed my care for the last year and a half, hence it seemed sensible to see if they had any different ideas, given their expertise with Allogeneic Stem Cell Transplants etc. As it happened, they were happy to go with the Vinblastine chemotherapy, as it's difficult to say which of the potential treatments would be best, due to insufficient evidence. (I'll write more about the potential treatments, and the difficulties in choosing, in a separate post.)

Over the next few days or so, it was mostly a case of observing me to see how I got on, whilst tweaking my pain medication accordingly. It wasn't easy to decide how to proceed though, as there was no way to know whether any changes in my condition were a result of the high-dose steroids, chemotherapy, and/or pain medications. Also, given that I could be pain free one second, and in agony the next, it was difficult to know whether I was improving, without potentially causing myself quite a lot of pain. Fortunately, even though the days can feel long when you're just being observed, my local hospital provides a relaxing environment; This was the view from my room:

Cottingham - Hospital Room - View (Left)
Cottingham - Hospital Room - View (Right)

As you might imagine, the potential for severe spikes in pain meant that I was a bit weary of moving around. However, sometimes you don't really have any choice; For example, on one occasion, after going to toilet, I went to press the button to flush it and that triggered a horrendous pain. I quickly grabbed hold of some nearby handrails to hold myself up with my arms, thereby relieving some of the pain, but I couldn't let go without it returning. Clearly, I couldn't stay there either; I had to somehow call for help.

Of course, the problem was how to call for help, as even if I was able to shout, I doubt anyone would have heard me, so that only left setting the buzzer off to call for a nurse. There happened to be a button to do that next to the toilet, hence it looked like my best option. It took me about five minutes, and far more pain than I would have liked, to get sat down on the toilet, where I was finally able to reach the button, and even then I still had to support myself with my arms, hence I struggled to actually press it. Fortunately, it wasn't long before a nurse arrived, and I could take some additional pain relief; Once it had kicked-in, I made my way back to my bed, with the help of a zimmer frame.

After that experience, I wasn't going to try walking anywhere without first calling for a nurse, just in case I needed help. However, even that didn't work out very well, as the first time that I tried it, I only managed a couple of steps before the pain kicked-in, I yelled-out uncontrollably, and both the nurse and myself found ourselves stuck. I was holding myself up with the help of a cupboard on my right, and the nurse on my left. Consequently, the nurse was unable to call for help, much like I had been previously. Without really thinking, I just stumbled backwards towards the bed and sat down, albeit not very elegantly. The nurse then shot-off to get some pain relief and colleagues to help. I think I scared the poor nurse to death; Even though I had tried to explain what might happen, I don't think I'd quite managed to describe the extent of the problem.

Given the ongoing issues that I was having with the back pain, despite the steroids, chemotherapy and pain relief, the doctors decided that I needed an MRI scan of my spine to see whether that highlighted any potential causes. I wasn't exactly thrilled with the idea, as my last PET-CT scan had been quite an unpleasant experience, due to the back pain, and I'd only got worse since then. However, there wasn't really an alternative, and it did mean that I would finally find out what an MRI scan is like. (I'll write about MRI scanners, and my experience of being in one, in a separate post.)

By the time I had the MRI scan, I'd been in hospital for a week, and during that time there had been a couple of theories about the cause of my back pain: The Hodgkin's Lymphoma could have spread to my spine, or the steroids I'd been taking might have weakened my bones, thereby making it easy to damage them. After much debate, and specialists getting involved, the results of my recent scans led to the conclusion that I had compression fractures on seven vertebrae in my lower back (T11-T12 and L1-L5).

Note: The CT scan didn't show anything of interest, the PET-CT scan showed some activity on one of my vertebrae (T11), and the MRI scan showed that seven vertebrae were crumbling at the top and bottom. Although CT and PET-CT scans are not very good for identifying these kind of issues, it appeared that as time was progressing, I'd been causing more damage. Therefore, the plan was to have a procedure known as a multi-level Vertobroplasty, in order to strengthen the damaged vertebrae and in doing so relieve the pain. (I'll write about the multi-level Vertobroplasty in a separate post.)

For various reasons, it was just over two weeks after the MRI scan before I actually went for the multi-level Vertobroplasty, during which time I was pretty much stuck in my hospital bed, as it wasn't safe for me to walk around. I did occasionally slide on to a wheelchair, so that I could go to the bathroom to get washed etc. A physiotherapist also came to see me on most days, so that I could try to walk a few steps with the help of a zimmer frame. However, sometimes I wasn't well enough, either because I'd upset my back from getting washed etc, or because the day after the MRI scan I'd picked-up an infection, and needed IV antibiotics for a week to help to clear it up.

Note: The sudden change in my mobility made me realise how much I'd always taken the ability to perform even the simplest of tasks for granted, e.g. picking-up things that I'd dropped on the floor or reaching for things on high shelves, hence being dependent on others for such tasks was definitely an adjustment. I know that I soon acquired a newfound respect for those that are unable to walk; It's quite surprising in how many ways all sorts of things are not designed with that thought in mind. For example, I even struggled to get out of a hospital bathroom one day, as the door was pretty heavy/stiff, and that made it difficult to push open when sat in a wheelchair (with a bad back).

Fortunately, the multi-level Vertebroplasty made a huge difference to the back pain, but as you might imagine the procedure itself required some recovery time, which meant that it wasn't until five days later (making it a four week long stay) that I was finally able to go home. Having said that, it was my circumstances that influenced the recovery time, as after spending so many days in a hospital bed, I'd lost a lot of my strength; My legs were so weak that I could barely walk. Also, the chemotherapy that I was having was causing me to be anemic, which meant that I was easily out-of-breath, hence anything remotely physical was just that bit harder. (As it happened, my second dose of the chemotherapy was a couple of days after the multi-level Vertebroplasty.)

In the couple of months that followed, the Vinblastine chemotherapy every two weeks (as an outpatient) was essentially my only treatment; I had my sixth dose just a few days ago. The Vinblastine chemotherapy has occasionally meant that I've needed blood transfusions, due to being anemic, and regular injections of Filgrastim (G-CSF) to boost my immune system, due to being neutropenic, but beyond that it has proven to be a fairly easy-going treatment. Having said that: I did pick-up an infection in late July, which meant spending a few days as an inpatient on IV antibiotics followed by a course of oral antibiotics at home; my hair has thinned even more; my peripheral sensory neuropathy (mostly numb/tingly/tender finger tips) has got a bit worse; and I've needed to add Movicol and Senna to my mini pharmacy due to constipation.

Note: Initially, in addition to the Vinblastine chemotherapy, the treatment plan also included periodic short courses of high-dose steroids. However, given that I was already taking steroids to help with controlling my skin GVHD, the decision was made to just increase my regular dose to 20mg/day instead; Prior to starting ECP, that dose proved to be just enough. (I did actually taper-down to my 10mg/day dose for a few days, with a couple of days at 25mg/day, before that decision was made though.)

Unfortunately, even though I've tolerated the Vinblastine chemotherapy fairly well, I've still struggled with my mobility, due to the need to regain my strength and ongoing issues with either back or hip pain, post the multi-level Vertebroplasty. It seems like the pain has been in different places to those strengthened though, once I'd had a bit of time to recover, and in the vast majority of cases hasn't been as bad. However, it has been somewhat of a bumpy road, and perhaps surprisingly continues to be more problematic than the cancer! (I even have various mobility aids in my house now!)

Wednesday, 13 August 2014

Hodgkin's Lymphoma - Take Four!

A couple of days after my previous post, I woke-up in the middle of the night with pain in the right side of my chest. It was actually the second time that I'd done so; The first time was a few days previous. On the first occasion, it took me about half an hour to simply get sat-up, so that I could reach the phone to check with the hospital what I needed to do; It took that long as the pain in my chest increased substantially upon certain movements. Part of what made sitting-up especially difficult was that in the weeks prior to that I'd also been suffering from lower back pain, hence trying to find a way to sit-up without hurting either my back or my chest proved to be a challenge.

When I spoke to the hospital about the pain that I was experiencing, they suspected that it was likely just muscular pain, and that some painkillers should help to take the edge off the pain whilst I recovered naturally. However, with the chest pain occurring again, a few days later, and that it happened to coincide with an appointment for some routine blood tests etc, I asked to see one of the doctors whilst I was there, so that I could get checked over in person; i.e. not rely on my description over the phone.

As it happened, I'd had a routine CT scan a week previous, just to check that everything still looked fine, which I was yet to hear the results from, hence I asked whether the CT scan showed any potential causes of the pain. Unfortunately, at that point, the doctor was unable to view the CT scan, and a radiologist was yet to write the associated report to go along with it, hence I needed to have an x-ray. Once I got back from the x-ray, the doctor had somehow managed to view the CT scan, and could see that there was something in the right side of my chest; Possibly a pleural effusion (fluid around a lung). That meant I needed to be admitted, so that the fluid could be drained the next day, once the doctor had discussed the CT scan with a colleague/radiologist. Incidentally, if you've never seen a CT scanner, I recently took this photo of one:

CT Scanner

The next day, I was actually just discharged, as after further discussion had taken place, it was decided that I needed to have a PET-CT scan, and the next available slot for doing so would probably be in about a week. The rationale for the PET-CT scan was that what the CT scan showed wasn't entirely consistent with a pleural effusion, as the fluid wasn't quite everywhere that would be expected should that have been the case, hence it was looking more like yet another relapse of my Hodgkin's Lymphoma; i.e. the PET-CT scan would provide the additional information necessary to decide.

Note: In terms of the chest pain, I'd noticed that the days when it occurred seemed to coincide with the days when I was due a lower dose of steroids, hence I asked about amending my steroid dosage. The doctor was happy for me to try changing my steroid dose to 10mg/day, rather than a three day cycle of 5mg, 10mg and 10mg, as it was only a minor change, so it was unlikely to affect the results of the PET-CT scan. The change did prove to be enough to resolve the issue with the chest pain though.

Fortunately, spending the night in my local hospital, even if it does turn-out to be unnecessary, doesn't bother me, as the staff, ward and setting are all nice; In fact, given how much time I've spent there in recent years, it's almost like my second home. Plus, in the early evening, if you take a look out of your window, all that you're missing from watching a wildlife documentary is David Attenborough narrating; I did get a photo of one such visitor, when it came fairly close (click to view it full size):

Visiting Wildlife

It was just under a week later when I had the PET-CT scan, which turned-out to be not the nicest of experiences, as whilst laying down on the scanner only caused fairly mild back pain, and the PET-CT scan itself was fine, actually getting off the scanner was an entirely different story. Fortunately, the technician was especially helpful, not to mention patient, and between us we managed to find a way to get me off the scanner without it being too traumatic; It took about a quarter of an hour though, and there were a few sudden, sharp spikes in pain that definitely stopped me dead in my tracks.

When I got the results of the PET-CT scan, just under a week later, it was clear that my Hodgkin's Lymphoma had relapsed. Consequently, the doctor explained that because I've already had all of the treatments that are currently considered to be potential cures, all that was really left now was trying to control the cancer for as long as possible, using treatments that tend to be well-tolerated; i.e. allow for a good quality of life. No-one can really say how long or short that life will be; It could be several weeks, months or years. However, what the doctor did say was that eventually the Hodgkin's Lymphoma is going to kill me. Obviously, the doctor doesn't know that with absolute certainty, as a new treatment could be developed that does cure me, or I could get run-over by a bus, but clearly the prognosis was far from being good.

Note: Over the previous few months, there had been several signs that my Hodgkin's Lymphoma had relapsed, hence confirmation of that wasn't an entirely unexpected result of the scans. The problem is that often there are several potential explanations for a symptom. Some examples being: I had been itching, but that could have been from the skin GVHD; I had been coughing, but that could have been from the Influenza A that my immune system was struggling to eradicate; and blood tests showed that my erythrocyte sedimentation rate (ESR) was elevated, but it's just a non-specific measure of inflammation, hence that could have been from my big toes healing after the nails were permanently removed. Having said that, blood tests also showed that my lactate dehydrogenase (LDH) was gradually increasing; An elevated LDH is a potential indicator of Hodgkin's Lymphoma, hence it made me the most suspicious.

To give myself time to digest the news, as well as the various medical professionals involved in my case the opportunity to debate what is best to do next, we only briefly discussed what my treatment plan might look like going forwards, before arranging another appointment, for a few days later, where we would both be in a better position to go over the details. We did also organise some pain relief for my lower back, which would be reviewed at my next appointment, and agreed to increase my steroid dose to 100mg/day for five days, as that should help with treating the Hodgkin's Lymphoma.

Note: The pain relief was in the form of morphine sulphate solution (Oramorph); It quickly (20-30 minutes) relieves severe pain for a short period (3-6 hours). The idea being that it can be taken as/when required (within reason), as a way to determine the dose needed on a typical day. That Oramorph dose can then be replaced with the equivalent dose of morphine sulphate tablets (MST); MST is easier to administrate and acts over a longer period (8-12 hours), giving a more consistent level of pain relief. At which point, the Oramorph need only be used to cover any increases in pain.

Whilst the appointment in a few days' time seemed like a perfectly reasonable plan, it was only the next day that I threw a spanner in the works, and consequently was admitted to my local hospital. I was an inpatient for much longer than I expected, but that's a story for another post, as this one is long enough already. In the mean time, you can get a sneak preview by taking a look at the timeline page that I recently added to my blog - It lists my treatment history, from the very beginning to the present day.

Sunday, 25 May 2014

How can I help save someone's life?

As you may know, on the 31st of January 2013, a complete stranger's stem cells were being dripped into my bloodstream. The hope being that once they had taken over the production of my blood, I might have an immune system that was capable of curing my Hodgkin's Lymphoma. A few months later, that hope was shown to be the reality by a PET-CT scan, and, just over a year further down the line, that is still the case. It hasn't been the smoothest of journeys, but I'm here to tell the tale, and in all likelihood that's only because an act of kindness from a complete stranger saved my life!

You could be the complete stranger saving someone else's life one day, if you're in good health and aged between 16 and 49 (inclusive). In the vast majority of cases, doing so is almost as simple as donating blood. You can read about what is involved in one of my earlier blog posts: How can I donate stem cells or bone marrow?

Whether you can be a donor or not, maybe you could save yourself some money, whilst at the same time helping to raise funds for the Anthony Nolan charity, which operates one of the registers for donors in the UK. You might be thinking that sounds too good to be true, but surprisingly it's not, as a couple of the services that I use, for which you could sign-up, operate a referral scheme, and any proceeds that I earn from those referral schemes I'll donate to the Anthony Nolan charity. It's that simple!

  • TopCashback is a free service that essentially offers savings on a wide range of online purchases, and it couldn't be any easier to use; The few extra seconds that it takes you can sometimes offer substantial savings. Just today, I saved £22.22 on my home insurance, and earned £5.59 for simply getting quotes from three different home insurance comparison websites! In the last four and a half years, I've saved/earned nearly £700! Currently, if you sign-up via My TopCashback Referral Page, you will get a £5 Marks & Spencer's eGift card, and I'll get £10 to donate on your behalf, once you have saved/earned £10 via their free service.

  • GiffGaff is a mobile phone service provider, powered by O2, with prices that tend to compare very favourably to that of the various others available. Their service is operated slightly differently, the result of which tends to provide extra flexibility for yourself, even though you do essentially still choose between pay as you go or a monthly contract. Currently, if you sign-up via My GiffGaff Referral Page, you will get £5 credit, and I'll get £5 to donate on your behalf, once you have added £10 to your credit.

You can also take a look at the Anthony Nolan website for other ways to help. Perhaps you'd like to get involved with fundraising, or even just donate money yourself? Maybe you'd like to be one of Anthony Nolan's volunteers? If you're pregnant, you could even consider donating the blood from your umbilical cord and placenta! More information about all of those possibilities (and more) is available on the Anthony Nolan website.