A short update this time as there is not too much to report for now.

On Tuesday the stem cells that were harvested from me a few weeks ago were put back into my blood. This completed the transplant process but the next few weeks will be the tough part as the high dose chemo from Monday will start to take effect soon. It is now Saturday (T+4) and I am still feeling reasonably well but my blood counts are starting to fall as expected.

Since the harvest my stem cells were stored at minus 120 degrees then defrosted in a warm bath ready to be infused back into my blood, here are about 1million of them ready to go back in…

 

Since Tuesday when this process was completed it has been a case of watching and waiting. The high dose chemo will take time to work and the doctors here are expecting me to feel the full effects in the next few days as my immune system becomes more compromised. Over the next few weeks the stem cells that were put back will help my immune system to recover.

The past few days have been OK on the whole, I have felt fatigued, occasionally nauseous and a bit off my food but really not too bad yet. The mornings seem to be very busy, starting with a daily blood test at 6 am followed by what seems to be an endless stream of nurses, doctors, cleaners and others; by about 11.00 it all calms down and I need a rest.

More soon,

Scott

Today I checked in to UCH on the Euston Road to begin the transplant process. After a busy day I am now relaxing; enjoying the stunning view of London from my room on the 15th floor and looking forward to catching up on Peaky Blinders. If all goes well I will be allowed home in about 3 weeks; just in time for the Rugby World Cup to start.

This morning I was fitted with a PICC line which is basically a long thin tube that goes into a vein in my upper arm and then through the vein until it is just above my heart. This was fairly painless with local anesthetic and the surgeon guided the tube in with ultrasound and X-ray. The PICC line will be used to give me all the chemotherapy and other drugs that I will need and also to take blood for daily testing.

In the afternoon I was given the high dose chemotherapy that will hopefully kill the residual cancer cells but will also knock out my immune system. I feel completely normal at the moment but expect to start feeling the full effects of this powerful drug in a few days time. Tomorrow the stem cells that were harvested from me a few weeks ago will be put back into my blood to allow my body to rebuild it’s immune system over the next few weeks.

While I was having the chemotherapy I was encouraged to suck Ice lollies. This makes the blood vessels in the mouth contract limiting the amount of chemotherapy reaching this area and reducing the soreness and mouth ulcers that are a likely side-effect. I managed 4 orange flavoured Calippo’s which made me feel more queasy than the drugs.

After the Calippo ordeal I was allowed out for dinner with the family and we enjoyed a very nice early meal together at a nearby Vietnamese restaurant.

A view folk would pay good money for but unfortunately there is no cocktail bar…

Scott.

A very quick post to say that the harvesting was successful today, the aim was to collect 4 million stem cells and we managed to get 4.5 million, so comfortably enough for two transplants – half will be stored for future use if ever needed.

I am back home now, it was a long day at the UCH Macmillan Centre where the team looked after me extremely well. I am tired and a little sore from all the needles but pleased to have completed another stage. The process itself was interesting, the amount of blood in my body was estimated at 5.5 litres from my height and weight. During the day all of this went out of my right arm, through the apheresis machine and back in my left arm about 2.5 times. The blood is spun in the machine, and different components are separated according to their densities, hence the stem cells can be removed and everything else returned to my other arm.

Best part of the day – being told we had enough stem cells so I don’t need to go back tomorrow, did not fancy that at all!

A couple of weeks to recover with a few more tests to do then hopefully I will go in to hospital for the transplant. The stem cells will be frozen until then.

Scott.

My eleventh treatment cycle finished a few weeks ago and after a short break I am now midway through the harvest process. All of the numerous pre-harvest tests such as Kidney and Heart function were positive so things seem to be happening very quickly now and after the harvest itself on Monday (19th) there will be a few weeks break until the transplant starts.

The harvest and transplant process is summarised in the chart below with the harvest or ‘collection’ referring to the treatment that I am having this week. Stage 4 and 5 refer to the transplant which is scheduled for early September.

The harvesting of stem cells from the blood involves tricking the patient’s body because they are formed in the bone marrow and don’t normally venture into the blood stream. Last Saturday I had preparation treatment involving some chemotherapy and now I am having a week of daily injections to stimulate the growth of stem cells in my bone marrow.  The injections are a drug called a G-CSF which and I do myself although I have declined several offers of ‘help’ from friends and family keen to stick a needle in me.

It’s currently about 6.00 on Saturday morning and I have given up on trying to sleep. I have quite a bad back ache which is a common side effect from the injections – my bone marrow is overproducing stem cells which causes the discomfort. Also the ‘children’ and friends returned from a night out clubbing at about 5.00 and spent a happy hour clattering around the kitchen eating all of our pasta so I am wide awake now anyway and decided to finish this blog.

The harvesting of my stem cells on Monday involves a full day in Hospital hooked up to an ‘apheresis’ machine which will remove the stem cells from my blood, hopefully collecting enough for the transplant. If not then it’s back the next day for another go – I will let you know how we get on. Once collected the cells will be frozen and stored ready for the transplant a few weeks later.

So overall things are on track and I am happy to be embarking on these important stages of treatment at last albeit with some trepidation about the transplant which is now approaching fast. I expect to write a bit more frequently over the next month or so as there will be a lot going on, thanks for reading and enjoy the weekend.

Scott.

Update – The tenth treatment cycle resulted in some further progress with my Paraprotein marker down from 4 to 3. Having thought that my stem cell harvest dates were now pretty certain my consultant has recommended one more cycle of chemo first. We have heard this before but now the timetable does seem more certain as this will be the 5th cycle with the new chemo drug Revlimid and that’s the most I can have before the harvest and transplant.

When this cycle finishes in a week or so I will have about 3 weeks off the drugs and a lot of tests – heart, kidneys, bone marrow etc. The harvest will probably be from the 10th of August to the 19th and after another 2 week break I will have the transplant itself in early September.

We had a fantastic few weeks in Portugal which has done us a lot of good, plenty of rest, exercise and sunshine. My fitness has improved and there are some tentative signs that the numbness in my hands and feet from the nerve damage is easing off a bit.

Here is how the chart of my cancer markers looks now, steady progress, the black dog is a tough cookie but we are winning!

Seafood overdose…

I managed to consume a huge amount of seafood on holiday, to the point where I am now a little concerned about the local marine life population, hopefully it can recover in time for our next trip.  The full tally is approximately as follows – about 6 Seabass, several Seabream, a Sole, a Hake, 10 Squid (and about 40 of their babies), a small school of Sardines, countless Prawns, an Octopus, a few Cuttlefish, some assorted Clams, Crabs, Anchovies and an enormous Turbot. I am now craving a Curry or a Thai meal, something spicy!

Golf watch…

Golf is infuriating but compulsive to many of us as the satisfaction of the occasional great shot, hole or game tends to stay with you for longer than all of the rubbish ones. For the first time in ages I managed to play a few holes with the aid of a buggy and started with a very rare birdie for me on the first hole – a false dawn followed by some truly terrible play. It’s the birdie that will be remembered of course.

Anger management is a helpful skill to have while maintaining etiquette and composure on the course. Playing with your partner can be particularly problematic, Samantha and I enjoy playing together and generally get along well enough unless I get cross with myself after a run of poor shots and the bad ‘atmosphere’ puts her off her steadier and calmer game.

A couple we watched from the safety of the clubhouse had clearly fallen out in a pretty serious way by the time they came up the last hole together, the lady already looked like someone had blown up her drone over the straits of Hormuz, her partner was keeping his distance. It was clear that a lot of stress was escaping as they played the last hole, a narrow par three with a lot of bunkers – players often underestimate the club required as it’s longer than it looks and usually into the wind.

Both tee shots were well short of the green but by luck escaped the sand, the lady golfer was further back so readied herself to play first, a 40 yard chip required to the long up-hill green. Her husband stood respectfully about 15 feet to her left as she prepared to play but he made the unforgivable mistake of being about 3 feet further forward than her which earned him a severe bollocking for being distracting in the ‘corner of her eye’. This was clearly an impossibility unless she had an extra eye somewhere round the back of her ear but he dutifully conceded the three feet to make sure he was behind her and she proceeded to hit the ball along the ground the 20 feet needed to plonk into a green-side bunker. Only one person to blame for this frying pan into fire moment clearly and he was verbally abused vigorously again before her bunker shot mercifully clambered out of the sand, just, and made it into the long grass 10 foot short of the green but about 40 from the flag up the sloping ‘dancefloor’ (golf slang for the green).

The first casualty of anger on the golf course is etiquette and by this point she was marching forward to play again despite the fact that it was now his turn to play as she was finally ahead of him, fortunately for him he was happy to let this go rather than live life with a wedge shaped hole in his head. The grass on this course is thick and wiry, unlike the grass at home so it requires a committed hit and causes all sorts of problems, in this case her shot scuffing a short distance but mercifully just making the green. Before he has the chance to play she rushes the green with her putter and 3 very fast puts later has finished with what looked like about 7 shots, unless we missed some. He chips up nicely leaving a short put and makes par, remarkable composure in the circumstances but not helpful for the general ambience. Normal etiquette is hats off and a handshake at the end of the game –  not happening this time. Hugely entertaining.

‘The calm before the storm’

@beachymeech 

I hope you are all enjoying  the summer and some great holidays, thanks for reading.

Scott.

Update…. We had a good test result last week showing that my Paraprotein cancer marker has made a move down from 6 to 4, a new low – really happy with this.

So the likely scenario now is a few more treatment cycles to see if we can get it lower still, the lower the better in terms of the efficacy of the transplant. I am 8 months into treatment and on my 10th chemo cycle so it’s taking longer than we expected but I am fine with this, the black dog is a tough cookie but we seem to be winning for now. Another bit of good news is that while the timing of my transplant remains uncertain I will be having the stem cell harvest between the 13th and 22nd of July. The cells will be frozen ready for the transplant when needed so it will be good to get this stage out of the way – see last blog for details of the process.

I am feeling well aside from the persistence of the numbness in my hands and feet and the time before the harvest gives us the opportunity for a holiday which will be wonderful after so long at home. My consultant says I am fit to fly so we are off to Portugal, I am sure it will do us both a world of good ahead of the the challenges to come. The sea is usually pretty chilly on this great piece of Atlantic coast, compensated by the fabulous fresh fish and almost guaranteed sun. The beach is a great place to people watch while waiting for the doughnut seller to come along.

Thank you for all of the kind comments and encouragement on my last post, really appreciated, it was a bit technical so nothing too serious this time…

‘It’s lovely once you’re in’… How many times have you heard this giant porkie on the beach?

Most of us have said it ourselves and the obvious retort should be to ask why, if it’s so lovely, you are back out and can barely speak about 10 seconds later having sprinted back up the beach like you have a jellyfish in your swimmies?

The water does always look inviting and it does not take long before someone is tempted away from the beach-bed to give it a try, usually a bloke showing off. Last time we were there there was a group of 6 nearby, 3 couples from Colorado, and one of the men was soon tempted to take the plunge.

The usual routine is observed and he is back out in under a minute despite swearing blind that it is soooo nice once in, maybe he could not wait to get out and tell the others? One of his female companions falls for it and goes off for a dip, returning in record time declaring in Coloradian (?) that it had ‘scared the crap out of her ‘Sir Queue Late Tory system’ (circulatory system), but at least it was warmer than Colorado.

Next up is the young family to the left, Dad persuades them all to give it a try, and is soon in the water, Mum following with the small baby who gets away with a gentle dunk up to the knees. No complaint from the babe who does not seem to mind having permanently blue feet now. It’s the c. 3 year old girl that is the issue as she is clearly old enough to be taught that it’s lovely when in and is dragged to the water from under her towel where the game on her tablet can be seen better than in the sunlight. They do get her in the water briefly but the aftermath is a very ugly scene which I suspect ensured that it was her only holiday swim. And since when did kids need tablets for entertainment on a beach? If you forgot the spade I guess the youngsters could dig with it.

There is always a strong Irish contingent on our beach and they generally provide the exception to the rule here. Ireland was clearly near the front when the natural beauty was distributed but feeling pleased went off for a Guinness and missed the lineup for the weather completely. Consequently every day in the Algarve feels like a small miracle, which is true of course.

Being obsessed with all things about fish, fishing and the sea you will not be surprised that I am watching a Netflix series about Newfoundland commercial fishers who brave the icebergs of Titanic territory. Here if you fall in it is so cold you have less than 10 seconds to live so this is something they try to avoid and thankfully there have been no drownings in the series yet. If a tragedy does befall one of these brave folk then perhaps we can be comforted by knowing that as the body slips into a hypothermic coma the brain will giving a soothing message – it really was lovely once you were in wasn’t it?

My book choice for the holiday is a bit odd at the moment as I have somehow ended up starting three at the same time. Erebus by Michael Palin is probably the first in line but I feel a bit like I do when faced with a buffet; there is always too much choice, things don’t go together and over-consumption is guaranteed. Buffet syndrome?

I will be fishing too, so you will definitely get a smug blog in the unlikely event that I catch anything big enough to eat – if it was easy it would be called catching rather than fishing.

Facebook – A while back I joined a Facebook group for Myeloma patients and carers… There are around 2600 of us in the group and it is a great to share experiences, get advice, and to try help newly diagnosed patients to understand what they are facing. Some of the stories are uplifting as patients experience treatment success, great remissions, and a return to normal life. Others are extremely humbling as people battle the disease bravely for many years without success; either way the determination and inner strength that people find is inspiring. The way we use humour to help deal with adversity is also a common theme, as is the sense that having a disease like this changes people, here is a poem that was posted recently…

‘Multiple Myeloma changes people. It sculpts us into someone who understands more deeply, hurts more often, appreciates more quickly, cries more easily, hopes more desperately, loves more openly and lives more passionately.’

It’s a great use of social media at a time when we seem focused on the negatives.

A pic from our last trip to Portugal in October 2018 before all of the fun started…..

Instagram – @beachymeech 

Scott.

 

 

 

 

 

This update is mostly dedicated to describing the Transplant process as I am often asked how the procedure works. 

It seems a good time to cover this topic as I don’t have a lot of other news; I am just about to finish one chemo cycle with one more planned and I feel well but still struggle with the numb feet and hands that I described before. I have seen a Neurologist and had a lot of tests over recent weeks to see if there is anything else that can be done but with no conclusions yet. Over the next few weeks, I will be meeting with the Stem Cell Transplant team and fresh blood tests are due so I will have a much fuller progress report next time. I have been promising to describe the Transplant for a while so here goes.

Stem Cell Transplant …. as a reminder of the overall plan I will have had around 8 months of chemotherapy treatment prior to the transplant. This first stage is called ‘conditioning’ and my cancer levels are now low enough to go ahead although it has taken a bit longer than expected. I have now been referred to the transplant team at UCLH near Euston so will be visiting them shortly and will get a provisional date in the diary at last.

Factory Reset… this is not a bad way of thinking about the transplant overall, a bit like resorting to the factory reset on a computer.

‘A factory reset, is a software restore of an electronic device to its original system state by erasing all of the information stored on the device in an attempt to restore the device to its original manufacturer settings. Doing so will effectively erase all of the data, settings, and applications that were previously on the device. This is often done to fix an issue with a device’ – Wikipedia.

With the body the same should broadly apply, remaining Myeloma cells will hopefully be destroyed by the high dose chemotherapy but so will my immune system and all the useful applications that it brings so this will need rebuilding. Those vaccinations we have as kids like the MMR which is now given age 1 will be one of the first ‘apps’ that I will have reinstalled afterwards.

The details of the full procedure are best described in stages.

Stage 1 – ‘Harvest’… The word Transplant suggest the involvement of a donor, but for Myeloma, most patients provide their own donor stem cells which need to be harvested before the rest of the procedure begins. Stem cells have the remarkable potential to develop into many different cell types in the body. In addition, in many tissues they serve as a sort of internal repair system, dividing essentially without limit to replenish other cells. When a stem cell divides, each new cell has the potential to either remain a stem cell or become another type of cell such as a muscle cell, a red blood cell, or a brain cell.

Most stem cells reside in the bone marrow so I will be given a course of injections over a week or so that will ‘mobilise’ them and encourage them to move into my blood. Once this is done they are harvested; blood is taken from one arm and then fed through a machine that will pull out the stem cells with the rest of the blood going back in my other arm. The collected cells are then processed and frozen for use later in the treatment.

At this point I will go into hospital for 3 – 4 weeks, for the next two stages:

Stage 2 – High dose chemotherapy … Firstly, I will have  a central line fitted which will be used to administer drugs and take blood for tests. This will be inserted into a vein via the chest and then slowly pushed into place so that the end sits near to the heart.

The next step is to administer the high dose chemotherapy drug called melphalan which is given intravenously, via the central line. This aims to remove any residual myeloma cells but will also kill healthy cells. Over the next few days my blood counts will drop and my immune system will be severely compromised. Likely side effects are nausea, vomiting, mouth ulcers, fatigue and definitely hair loss.

Stage 3 – Stem Cells Transplanted back … After a few days to let the chemotherapy do its work the previously harvested stem cells are defrosted and transplanted back into the blood where  they migrate back to the bone marrow. Over the next 10 – 14 days these cells will graft back in with the bone marrow and start to produce new cells beginning the process of recovery and rebuilding the immune system. Once this process is well established and my blood counts have recovered sufficiently then I will be able to go home to recuperate.

Well done if you followed all that. By the next time that I write there should be some more news and a bit of a timetable for the transplant – I have a lot of consultant meetings, tests and further treatment over the next few weeks.

Thanks as ever for reading and for the ongoing support, back soon.

Scott

It’s been a long time since I last wrote so apologies for taking so long, there has been quite a lot going on, and I keep finding things to wait for so this has been rewritten a few times. The other consequence is that this may be a bit long so it’s a good idea to top up that glass of wine before starting.

Firstly an update on my status, quite a big change of plan, and my general health.

If you missed the last few blogs or have just started following then it is worth a quick recap that we switched my main chemo drug for my last treatment cycle. This was done for 2 reasons, firstly that I was experiencing some very difficult side effects, and secondly that progress in reducing my cancer levels had stalled a bit so it was time to try a new tack. Most importantly it looks like we have some progress again in terms of the latter, my key paraprotein marker is back down at 7 from 9 and my Free Light Chains are 36 from 49. This is not a huge move but it’s very early to judge the new drug and my consultant is optimistic that it is working well. I am now into the last week of what I hoped would be my 8th and last chemo cycle before my transplant but we have decided to give the new drug more time and hopefully reduce the cancer levels further before the transplant.

The new plan is to continue for around two more cycles; we have mixed feelings about this as the transplant gets put back by about 2 months and we hoped to be further down the road by now after 6 months. However there are some very good reasons why it is clearly the right thing to do, most importantly if my paraprotein level reduces further as we hope then this will be better conditioning for the transplant, generally speaking the lower the paraprotein the better the chance of a successful transplant and a longer remission. Additionally it gives me some more time to get over the side effects from the previous drug which remain an issue (see below), regain some strength, enjoy having hair and maybe even take a short break somewhere.

Lots of people are asking me what the transplant exactly involves and I promise to describe the full medical procedure before the event when I will be admitted to UCLH in London for around 3-4 weeks. I note the slight tinge of disappointment from those of you with shiny heads that my hair is still looking pretty strong, the transplant will see it off promptly and I will look almost like you! I promise before and after photos but you will have to be a bit more patient now.

The roller-coaster heads the right way again….

Wallace… generally speaking the ‘peripheral neuropathy’ side effect from the previous chemo drug is now causing much less pain thanks to the pain consultant and the stack of new drugs that I mentioned last time. Unfortunately the pain was only one part of the issue and I have some nerve damage and weakness that could persist for some time, at least a few months it seems. The main problem is my legs which are wobbly and my feet which are numb and tingly, it’s a bit like being drunk from the waist down or pretending to be Wallace in ‘The Wrong Trousers’ when I walk. Otherwise my hands are similar but less affected and I am generally quite weak but I guess that’s to be expected at this stage anyway and there are no serious other side effects with the new drugs. Otherwise I feel ok so despite some bumps in the road we are on track, I am getting great medical care and great support, time keeps moving and I remain positive.

‘It’s the wrong trousers! What have you done with the controls, Gromit? Stop them, Gromit! Stop them! Help me! Gr-Gromit! The trousers have gone haywire! Get me out! HELP!’ …Wallace – The Wrong Trousers.

Continue reading “Update 10 – Wallace.” →

Obviously things were not going particularly well last time I posted. The pain from the peripheral neuropathy was causing some serious issues and had proved very hard to treat. So I feel the need to post a very quick update to say that I have a new cocktail of drugs that seems to have worked. I can’t describe the feeling of being pain free for the first time in nearly a month, you don’t realise how debilitating it is until it goes, wonderful, lets hope it lasts. So I am left with the less painful problems caused by this condition with numbness in hands and feet plus wobbly legs and poor balance, it will take time but this will improve. Hats off to the pain management consultant too, we did not realise this was a profession that existed until we looked into it and we would highly recommend seeing one if you have any sort of difficult to treat pain like sciatica for example. Our bloke was excellent anyway.

The other consequence of having this difficult side effect is that I clearly cannot keep taking the chemo drug that has caused it so we have agreed with the consultant to switch to another drug – from Velcade to Revlamid for those in the know. This is by no means a second choice drug as it is just as effective and works slightly differently. While progress in reducing my cancer level overall has been good with the previous drug there has been no further improvement over the past month or so. It makes sense to try something different for the last 2 cycles from this perspective too and I am now well into the 7th cycle with no side effects from the new drug and feeling positive that we will get a good response.

A reading recommendation – following up on my interest in the Placebo effect and the importance of positive thinking I have been reading an incredibly thought provoking book called ‘You are the Placebo’ by Dr Joe Dispensa. Dr Joe not only describes the evidence for the power of the Placebo effect brilliantly but links it to the latest discoveries in neuroscience to describe what is actually occurring in the brain to produce the effect. He describes how the brain can significantly increase production of substances like Dopamine and many others and even argues that we don’t need to take a placebo pill to generate these responses in ourselves. I would highly recommend it, particularly for anyone starting out studying medicine or psychology.

That’s all folks – thought it was important to let you know that things had improved. Will leave you for now and write again sometime soon. Leaving you with a picture of one months empty drug packets that I collected, filling a bowl, slightly shocking. Thanks for reading, thanks for the support, back soon.

‘Logic will get you from A to B. Imagination will take you everywhere’. –  Albert Einstein

 

 

Diary notes – March 2019, a difficult time, some more thoughts on supplementary treatment and staying positive.

I want to be honest with what I write here, particularly when things have gone less well as they often will. The last three weeks or so have been challenging to say the least with the ‘peripheral neuropathy’ I mentioned last time getting a lot worse. This is a common side effect from the chemo which is interfering with my nervous system and it started with hotness, tingling and numbness in the hands and feet about a month ago. This was reasonably tolerable but more recently I have started to get episodes of much more severe pains in my legs which have proved impossible to control with painkillers and I have lost a lot of sleep and a fair bit of weight. My 5th cycle of treatment had to be stopped halfway through while this was investigated with an MRI scan and a consultation with a neurologist. At first we thought that the pain could be related to an old back problem that I have called Spondilolithesis which results in modest slippage of some lower vertebra but now the neurologist feels that the Neuropathy side effect problem is the main cause. Treatment is with a drug that suppresses nerve pain by altering the signals to the brain but it can take weeks to take effect so I am trying to be patient but for now but feeling weak and tired so have curtailed most activities, things will improve.

Missing half of the 5th chemo cycle was not ,..ideal but I have just finished the 6th on plan and this leaves just 2 cycles before the transplant and the focus will be on trying to minimise my Paraprotein levels ahead of this – chart in previous blog. My latest blood test did not show any further progress on this front, possibly due to the treatment being incomplete on the 5th  cycle so for the last two cycles we have decided to add another chemo drug into the mix to try and push things along a bit faster. I am just about to start this course and hoping that the side effects are not to difficult on top of dealing with the existing problems.

‘You gotta have faith…’

With all of these issues and the tiredness they have caused it’s not surprising that it’s harder to be quite as positive as usual so its a good time to remind myself of the bigger picture and there is plenty to feel optimistic about. I am nearly three quarters through the chemotherapy, that’s about 6 weeks to go rather than 6 months at the start, a nice thought. Overall progress has been good in reducing the cancer levels and there is plenty of time to do more. The new chemo drug for the last few cycles should make a further impact. All of the difficulties and pain have been side effects which will pass when it’s over, including the wretched neuropathy with time, the cancer itself has not caused any of this. Finally let’s not forget the best support team possible, Samantha, the family and you lot rooting for me!

Positive visualisation for the new drug (my bad drawing)…

Some thoughts…

Since beginning my treatment back on November 5th last year (it seems a very long time ago now) I have learn’t a huge amount. In one of the early blogs I wrote about how this development of knowledge about the disease, understanding of my treatment plan and consequent ability to engage with the process and my consultant helps to build confidence and positivity.  The curiosity I had about the medical process soon moved on to wondering what else I could do to help myself through the treatment effects and even perhaps improve the potential outcome. Numerous questions came to mind; ‘How should I change my diet?, How should I exercise?, what about alternative medicines to supplement the pills?, can Reflexology, Meditation, Acupuncture etc. help? So many questions but unfortunately the medical profession does not seem very well equipped to offer help here, where food is concerned the advice is generally limited to ‘maintaining a balanced diet’. So patients are generally left to themselves to research and experiment with the best ways to supplement their treatment and potentially improve their well-being and positivity.

All of the above are interesting topics but there are too many to cover in one blog; among other things I am keen to write about the research taking place into fasting where the evidence has been sufficiently compelling to prompt several clinical trials in patients undergoing chemotherapy for various cancers. These hope to show that fasting before chemo sessions reduces side effects and maybe even enhances the impact of the drug. I will save the details on that for another time because I have also been reading a lot about the Placebo effect which is fascinating, widely researched and becoming much better understood. For me it at least supports the idea that our own minds are powerful in influencing outcomes and that this can be linked back again to maintaining a positive outlook.

Placebo – Latin translation: ‘I will please’

In 1962 the FDA (Food and Drug Administration) in the US Adopted new regulatory amendments passed by congress that compelled drug makers to prove for the first time that new products actually worked. Prior to this the focus had simply been on whether drugs were safe to take and at the time the Thalidomide disaster was making it clear to all that testing generally was inadequate. In addition to a tighter safety focus the new laws required ‘substantial evidence’ that the new drug worked and ‘blind trials’ where patients were either given the drug or a placebo in the ‘control group’ became formalised. Placebo’s had already been used for many years in trials and the potential for a positive ‘placebo effect’ was well documented…

‘The average patient listens with much more interest to the prescription of his physician than to his directions about hygiene. Expecting good results from the drug, he often imagines that he feels them. So great is the power of hope that, even in incurable diseases, a temporary improvement often follows each new prescription.‘ – John Nichols, Harvard, 1893.

A 1955 a study suggested that a placebo effect had been observed in 35 % of clinical trials since WW2 and it is clear that the incidence of the effect varies enormously depending on what sort of drug is being tested. The ‘hope factor’ seems particularly powerful in psychiatric medicine creating huge debate in the area of antidepressants where the placebo effect is observed strongly. This seems to be because hopelessness is a core feature of depression and if a placebo is introduced to a patient as an effective drug to alleviate the depression it can be extremely effective, in many cases nearly as good as the drug itself. The scientific explanation for this is complex but multiple studies have shown that the brain works in several ways to produce a placebo effect, notably producing endorphins, dopamine and other responses.

The mechanism described above is something we can at least understand a little bit but placebo studies are revealing other issues. For example in Finland researchers looked at the most common type of shoulder surgery in Europe which is a ‘decompression’ procedure with a keyhole entry to remove or repair damaged tissue or bone. 189 patients with similar symptoms and prior treatment such as steroid injections were split into 3 groups. One group had the regular surgery while another group received a placebo surgery which involved a keyhole entry and a good look around/diagnostics but no treatment, the third group had no surgery but continued with other treatments such as physiotherapy. Nobody in the surgery or placebo group, family or even researchers analysing results knew which group patients were in. 2 years later the study revealed that the patients in the placebo group were no more likely to guess that they had received the placebo, they were just as satisfied as those in the surgery group and outcomes had improved for both. Those in the third group receiving physiotherapy also had improved, slightly less so but not significantly. The conclusion here for me is that the perceived wisdom that the (expensive) surgery is effective should be seriously questioned. But maybe there was a placebo effect at work too, if only a small one.

https://www.helsinki.fi/en/news/health/finnish-study-shows-that-most-common-shoulder-operation-is-no-more-beneficial-than-placebo-surgery

I have only scratched the surface here, in an amateur sort of way, but probably enough to see that the mind has a powerful and potentially positive role to play in influencing outcomes. There are some good books on the subject on my reading list.

Thank you for reading… not such a fun blog this time perhaps but reflective of the circumstances. Hopefully I will be able to report some improvements soon but in the meantime I am coping while remaining determined and positive. Cheerio for now, Scott.

Amusing myself with some of the morning pills – reflecting my determined mood.

‘But now old friends they’re acting strange
They shake their heads, they say I’ve changed
Well something’s lost, but something’s gained
In living every day’

‘Both sides now’ – Joni Mitchell