So, there I was, screaming on the bed in far worse agony than the leg had caused. Number two son was home and he rushed in looking worried and not knowing quite what to do (poor lad). After a minute or two, the pain died down enough for me to prop myself up and breathlessly pant "Ring ..... for ....... the ..... ambulance".
Well the ambulance came and I was taken to A & E (Accident and Emergency) and evaluated. They dosed me up and sent me home that afternoon without taking an X-Ray presuming it was a severe muscle problem. Thanks guys, I spent the next two weeks in agony, living between my armchair and an adjacent commode as I could move no further (except to occasionally stagger to the downstairs loo propped between a walking stick and my wife's shoulder).
Meanwhile my G.P. (General Practitioner) wasn't happy and took some blood tests. She rang to say there was something wrong with my blood and I should go back to A & E for re-evaluation. I thought, "uh oh, she's not saying what is wrong, must be bad, maybe cancer".
This time they did a proper job (if I was American I should have sued for the first time!). This revealed a collapsed vertebra. So I was wheeled off to Orthopaedics, put in a metal brace and made high as a kite on morphine. As there was no obvious cause of the collapse, they too took blood.
So there I am, day 3, lying on my back, in my brace, doped up to the eyes, when they came in and said they'd found the cause, that it was an incurable but treatable cancer called Multiple Myeloma. I said words to the effect that I had more immediate things to worry about and I'd get round to worrying about that later. So between that attitude, and the previous inference from what my G.P. had said, it wasn't the knock back shock it is for some people.
A few days after that I was transferred to Haematology and started on chemo-therapy. But before they could start the treatment , which involved the use of Thalidomide, I had to sign a declaration that I would not get pregnant! Just had to laugh! The partially numb feet I have been left with are somewhat less amusing though.
Well, the brace came off after 3 months, and the chemo finished successfully after 32 weeks. We then had a pause for 6 months for me to get my psychological breath back before we did high dose chemo and auto stem cell transplant. Just to explain, the MM first relapse time was short after normal chemo in those days, and can still be, the high dose treatment expectation roughly doubled that time, it costs you your hair and has minor mortality risks, but hey ho, ya have to do it under the circumstances.
A number of things about the high dose treatment amused me. During the 30 minute infusion, I had to be sucking on an ice lolly! Apparently it reduces the risk of mouth ulcers. The next day, when you get your previously harvested stem cells back, they come in a big liquid nitrogen flask, so when the top comes off and the clouds spread out, you can't help but hum the Dr. Who theme! And because the treatment doesn't knock you sideways for the first week, I ended up staying in the 5 star hotel opposite the hospital for the week (complete with panic button) because it costs them less than a hospital room!
Of course, one of the side effects of the high dose chemo is that you lose all your hair. Damn. It grows back seriously slowly. But now it is back. It is dark brown where it used to be light brown, and it is as curly and wavy as all hell. Can't do a thing with it! (See pic to left and compare to homepage pic)
Now? I'm doing my best to enjoy things in the few years till relapse, and by and large I am succeeding. My back is a bit limiting because I am now 3" shorter, so the muscles are all the wrong length for my frame, which means I get severe back ache after a very few minutes of activity. The most I can do is 15 minutes without assistance, but if I walk with a stick, I can manage a bit over twice that. So yes, I'm sort of having a good time within that constraint, but there is never a day goes by without considering, however briefly, just how little time I may have left. Only 1 in 3 make it past 5 years you see. (Update 2013, the stats have just been updated, it's 10 years now, yee hah!)
That 3" shorter business confused the hell out of me the first time I got back in my car. I was convinced someone had altered the height of the seats, even though they had no height adjustment! Eventually I twigged that it was me that was different. Had to laugh some more!
My friends say I'm awfully brave, by being as cheerful as I am, but I don't see what else one can do.
And please, when the time comes, don't say "lost his fight against cancer". I'm doing nothing, just sitting here trusting the medics and the drugs, that's hardly what I call fighting, so don't say it. Anyway, something else may yet get me first! That's a thought which appeals to my twisted sense of humour!
Well, several years have passed since I wrote the above. I think therefore I need to point out that just over 11.5 years after treatment I started my first relapse chemo (April 2021)! Yeah, I know, it's not what the stats say. So how did that happen? Well the only thing that changed was that in 2014 I read a Position Paper from a symposium in Chicago on MM that was attended by leading experts on the subject. Right at the end of two sides of A4 paper was a paragraph saying that there was growing anecdotal evidence that a glass of red wine a day was beneficial in extending remission periods. So that is what I have been doing! If alcohol is out of the question for you, and even if you are OK with it, then read the section on the active ingredient Resveratrol below. It seems to work, at least for me. I even graphed out my para-protein levels which clearly shows there is a sudden levelling off of the rate of increase at exactly the time I started to do that!
As of March 2025 I am 15.5 years from diagnosis and 3.67 years into my 2nd
remission period which included a tad over 2.5 years with my P-P at virtual zero. This time round I'm having
4 weekly immunotherapy using Daratumumab, but despite that the staff at my hospital have not seen P-P stay that
low for so long in 2nd remission. It has still only crept up to 4g/l.
And I have had no side effects from the red wine!!!
I have had less opportunity to follow up on the final paragraph of that paper which made similar remarks with respect to Turmeric, due to the family of four all being grown ups and at home, which limits my ability to dictate the family menu! Not being a health food shop aficionado, I hadn't realised that I could still use that information! But it finally impinged upon my consciousness that you can actually buy Turmeric capsules, so that is what I'm also doing. It was too little too late to slow down the progression to relapse 1, apart from one very minor glitch in the graph, but hey ho, nothing daunted I shall carry on.
I was initially aware that research was being done to determine the active ingredient in red wine. Eventually, I also noted that initial clinical trials were taking place on a naturally occurring substance called Resveratrol, which has also given me no side effects. But first, let me give you some dosage levels for currently available sources, they are seriously relevant.
Source |
Dosage |
125ml glass of red wine, 1 per day |
approx 1mg per glass |
Mulberries 100g/3.5oz per day |
5mg |
Holland & Barrett* capsules |
250 mg per capsule, 2 per day max |
I found a list for Resveratrol/Cancer clinical trials at a government web site. There was only one entry for MM and that indicated that Resveratrol was unsuitable for use with MM because of side effects. But closer inspection of the summary data showed they were using daily dosages of 5.0g! The company responsible, judging by trials for other cancers, must have had some sort of commercial imperative to sell Resveratrol in 5g doses. There was no attempt to try other dosages. Also, they weren’t even using Resveratrol! They were using SRT501 which is derived from Resveratrol via micronization, a process which does not preserve the properties of the original substance. Clearly that trial should be ignored. I tried our agencies NICE and MHRA who both said they couldn't investigate as it was outside their remit. MHRA also said that that was because it is classified as a food additive. And who is responsible for such classifications? MHRA! So given an obvious medicinal use they can't also classify it as medicinal? After all, we are talking about not just me but evidence which was growing 10 years ago and so must have seriously increased since then.
So medical profession, it's 10.5 years since I read that position paper. My own
experience indicates that, at least for some, many years can be added to life expectancy. And yet this
profession of yours which is supposed to be in the business of saving lives has still shown no interest in
saving lives this way! Is it not about time you did what you are supposed to do and save the lives of Myeloma
patients? Save lives? Well I'm just turned 76 and normal life expectancy in the UK is 79.5, so given my Myeloma
survival noted above what is most likely to be my cause of death? Myeloma has dropped right down the list and is
now unlikely to be what kills me so I have probably saved my life. Others deserve to have that too.
Put another way, why does avoiding side effects, which might never happen, seem to be more important than saving
life itself?
First time round, it was accidently discovered by an orthopedic surgeon at the hospital I went to for my stem cell transplant that I was already clear of Myeloma Bone Disease (MBD) having had 8 doses of Zoledronic Acid. On discharge to my local hospital I was therefore given no more of that treatment. At the time I had insufficent data to understand the implications of that. Ten years later, and still being on my first remission, we were worried about that being a long time in the MM world to not know what my bones were doing. So an extra MRI scan was done which showed me to be still clear! This showed quite clearly that the previous decision to stop treatment was quite correct.
A year and a half later we took another scan as the normal start to my relapse treatment. I then came to a serious disagreement with with my new consultant. He said I had to have the full 26 weeks Zoledronic Acid treatment becuase that was what "best expert advice said". I said "have you actually looked at my medical record, no way do I need that much". We grumbled quietly at each other as the treatment got under way. I did some background web searching. I failed to find any reference to any sort of fast reaction to the drug. Clearly "best expert opinion" (and any opinion is only an opinion, not a fact) was consequently based on incomplete data and therefore in need of revision.
So after 10 doses (I figured, 2nd time round everything gets worse, so allow 25% on first time) I put my foot down and said no more unless you can prove from my body that I actually need more treatment. I was particularly determined to win this because I had also found out that it is not the use of Zoledronic Acid but the over use which increases the vulnerability to both Osteonecrosis of the Jaw and Stress Fractures. Hence I got an extra MRI scan. The consultant then said it looked like two more doses would be enough, but he would like a safety margin. We haggled and settled on a total of four more doses.
The problem is that due to the expectation that fast reactions do not exist, it has not been thought necessary to include bone scans between the start and end of treatment, hence there is no possibility of detecting fast reactions and therefore avoiding over use. I have put the full argument into a three page docx document which I tried to find the correct official body to ask to look at it. But apparently our esteemed authorities seem to think that mindlessly following rules is more important than adding years of life to sufferers!