What a gr8 day

Today has been my first "day 8" since cycle 2 - and it's been brilliant.

Energy levels higher than any time in weeks, and a real sense of living.  All of which was helped enormously by my reiki session this morning (bliss!) and friends for tea this afternoon.

Yes, yesterday was a big day with the early morning scan (too much "contrast" liquid and too little food!) - which may explain my general mood being reflective and somewhat anxious (not withstanding my oncologist's positive vibes); but it also fitted the repeating pattern of dip and recovery "post steroids". Scan results next Tuesday, we hope.

But day 8 has been so different... What do I mean "day 8"?  Since cycle 2 I've been on a weekly cycle, days 1 to 7. Now, with the change in regime I've a 14 day cycle, which means days 8 to 14 will be "new territory" of an extended recovery time ahead of the next treatment day.  Maybe it'll simply be a matter of recovery time; or maybe I can expect improvements thanks to the combined (anticipated) effects of this week's 5 white-cell injections plus last Saturday's magnesium boost - either way these next five days should be as good as any since therapy started 19(nineteen!) weeks ago.

We can only wait and see.

PS:  Reiki - an intriguing experience, that was thoroughly enjoyable and beneficial; leaving me totally relaxed, content, and confident.  I now plan on alternating between Bowen and Reiki for the coming cycles, on or around this "day 8".

Magnesi-tastic!!

(Sorry!)

Well, I really hope this is not the lingering effects of the post-treatment steroids, but I feel so much better after my 4 hour infusion of magnesium!!!

I did not realise how "closed" I felt, all crossed arms and legs - now I'm so much more "with it"... No more energy per set, but just more, well, more awake.

It just shows you how critical all those trace minerals are to our sense of well being.  I knew a lack of Mg is critical, and if left untreated dangerous; but the more subtle effects were less clear.

Mg does seem to also figure on muscle tone, as well as night cramps (which I've avoided these last couple of nights!), so I'm really hopeful of the combined effects of this improvement and my up-coming " white cell" injections... 

Nine and more...

...side effects!

I knew I shouldn't tempt fate with that recent post!  As well as the new injections for my white blood cells, it seems the expected side effect of cetuximab - magnesium deficiency has finally caught up with me; having been up and down like a yoyo, it finally dipped below the threshold, so I'm in the clinic for a four(!) hour infusion!!!

This may be a one off, depending on future readings. or it could be a top up each treatment day - I hope the latter... But the effects of low magnesium tie in with some of my lesser symptoms (night cramps, muscle reduction), so it is again a GOOD THING to be sitting here!!

As for my white blood cell injections, it's "only" a five day course, starting each Monday after treatment - could be worse...

...in fact, these first few C9 days have been the best start to a cycle in a  few, we seem to have got the balance of steroids and other "medication" right!

PS:  why "nine and more"? It's cycle 9, but you can change " nine" to "milk" in three letter changes...  Support your local milkman - we do!!

Regime change is good news!

No, I do not mean there has been a coup at the clinic!!   I mean that, during my regular consultation with my oncologist, we discussed my longer term treatment plan...

...which is GOOD NEWS....

...because, in all likelihood, we will now continue beyond cycle 12.  This is a good thing.  It means that my oncologist is really pleased with the way I have withstood the onslaught of the first 8 cycles, as well as having good evidence that the treatments are making a difference (*) - so we'd be silly to stop at 12...

(*) It seems to be somewhat unusual that my body's resilience has allowed me to avoided a break in treatment over the last 16 weeks (16 weeks!), and - maybe as a consequence - the efficacy of that treatment means my CEA numbers continue to fall; he "expects a good scan" in 10 days time!!

In addition, we'll be shifting from weekly treatments (major and minor), to a fortnightly pattern, with one mega-treatment ever two weeks.  It does give us a whole 10 days off from commuting to the clinic, "free time" that will be really welcome; but I am a tad anxious that the double dose of Cetoximab might have some effects.  Ho hum, we'll see...

But it's not all good news (not bad, there's just more news...), my recent blood tests confirm why, during this cycle 8, I have been more feek and weeble:  my white cell count has fallen close to acceptable limits.

So, at some point soon, I'll be prescribed a daily self-injection of a second "pinch an inch" drug, this one to stimulate the production/release of white cells from my bone marrow.  While it's not painful (most of the time!) this is the one aspect of my daily routine that bugs me...  but I need those white cells!

Otherwise, and not withstanding intermittent funny tummy challenges, we're doing OK.  And I mean "we're", not "I'm":  this saga involves us both, equally... for which I am unimaginably grateful.

Reflection: A different world

Having just read wot I rote (*) in my last entry, I realise just how different our life is now to than pre-Christmas 2013.

But it's definitely a case of "living with cancer" (or, more accurately, living with the side effects of chemotherapy!); there is nothing but positivity in the air, with the emphasis on "living" as much as circumstances allow.  Maybe if we'd been dropped into today's world back in January then it would have been quite different - I'd go so far as to say it would have been an horrendous shock, but thankfully things change relatively slowly, allowing us time to adopt excellent compensating strategies (of our own making as well as the clinic's), enabling us to adapt and morph in sync with these side effects.

 I am just so grateful to have Diana on the journey with me.

(*) With apologies to Ernie Wise.

Side Effects.. they could be worse!

It struck me only yesterday that my treatment regime is intense - at least six months of weekly treatment, composed of two chemotherapy drugs (plus an accelerator) and the wondrous MAB.  It is truly remarkable, and a blessing, that my body is holding up so well in the face of such an onslaught - yes, I am constantly tired (sometimes very tired!), but overall the impact on me, my life and that of Diana has been "OK".

So what are the side effects I'm experiencing?  One thing we are hopeful of is that, now we're well into the second half of the regime, they are stable - those that accumulate have accumulated, and that there's nothing more lurking waiting to catch us out...  But what are they?

Well, there's the obvious ones of thinning hair and weight loss (I'm as light as I was when I was 23!).  These do not affect me directly, although these outward signs can be hard for others.

Then there's the MAB induced rash - it too does not affect me (maybe you see it more); it's just "there" - although I do have to "moisturise" with a medicated cream every morning (from my eyelids to my knees!) in an attempt to keep my skin supple; and I take an ultra-high dose of B6 each day to combat the thinning and (painful!) cracking of skin on my finger tips (your RDA for B6?  1.7 mg - and I'm taking 3 * 50 mg a day!)

Taste and appetite? Pretty much absent, which of course affects my body weight.  And the things I do enjoy seem to constantly change!  Sometimes it's savoury (“cup-a-soup” is still tops!), sometimes it’s not (heard of "Milo"?  Delicious!).  But it makes things difficult for Diana, who remains "on the case" with wonderful cooking, flexibility and patience...

My daily injection of Tinzaparin is proving to be tolerable (and not at all painful!) - this is to combat the small clot in my splenic vein, and generally prevents the tendency for chemo to cause clots.

Maybe the most significant side effect is caused by the acidic nature of the Chemotherapy.  Thankfully it's cyclical, only affecting 4 days or so in the fortnight, but that acid plays merry hell with my nether regions!  And - as I've said before - there's nothing worse than a man with a funny tummy...  Creams and potions?  I have them all!!

But there's a whole host of things I am blessed to have avoided so far - such as constant pins & needles, nausea and other "internal ailments" (it’s great that I need to take only one of the four prescribed anti-nausea drugs)... Not only do I think we're coping, I think we're coping without too much collateral damage!

Reflection: It's a NICE start to C8

Pleased to say I was "fighting fit" (by just a couple of days!) to go into full therapy for the start of cycle 8 yesterday, and - thanks as always to the steriods, I'm feeling "pretty good" this morning.

But not so good about a blog posted yesterday by Cass (awasandawillbe.blogspot.co.uk), in which she says the number of "no shows" for chemo treatment shocks the nurses.  Not only the impact of missing lifesaving treatment, but also the cost!  She believes her treatment costs the NHS circa £20,000 for six months; and mine with more sessions and more intense therapy will be even more - it's scarey to think how much it costs us (via taxes) when someone does not turn up for treatment...

...which is why I believe so strongly in NICE (do not tell the papers!).  If your not from the UK you'll not know that the UK's "National Institute for Heath and Care Excellence" provides the NHS and others with definitive...

"...guidance [that] sets the standards for high quality healthcare and encourages healthy living"

With one of it's tenets being:

"Good value for money, weighing up the cost and benefits of treatments" 

Which I interpet as "affordability".  

Is it affordable to give me the treatment I am getting (assuming I show up!)?  Yes!  Would it still be affordable if I was 86 and not 56?  I'd like to think the answer would be a resounding "NO!", whether I was otherwise healthy or not - I just cannot see the value to either me the 86 year old patient or our hard pressed NHS.  Equally, and probably just as controversial to some "news"papers, I would have fully understood if my cancer had been "the wrong one" for Cetuximab:  while I understand it could have had some effect in that case,  the benefit (i.e. the probability of a good outcome) would have been so small as to make spending that cash on something else far more sensible.  (Cetuximab is frighteningly expensive!)

So how do we react when we see an article in the news about "NICE controversially(sic) recommending not to prescribe new drug X for condition Y in population Z"?  In the text somewhere it will reference the number of people who might benefit (often small) from X (even more expensive than Cetuximab).  What is unlikely to be in the article is the observation that spending the same amount on a different new treatment applicable to a larger group who have a better chance of a good outcome might be a better option.  It's all in the numbers...

More Good News

It's down!  Again!!

There is a relatively reliable blood "marker" for my sort of cancer, called the CEA number.  Yours is probably in single digits, whereas mine is currently measured in the hundreds...

Back at Christmas, it was roughly 200 - and it is again!  In between times it hit 500+ just as I started therapy; in other words my treatment is continuing to have the desired effect: at the time of my last scan (the one that showed things were stable/improving) it was 300+, and the weekly trend continues to be down, down, down.

All we need now is the next scan (w/c 27th May) to confirm all is going the right way, and that will make all the side effects really worth tolerating!

Physical Therapy

Before all this started, I would irregularly have wonderful massage sessions with M, a physical therapist expertly trained in the "McTimoney-Corley Spinal Therapy" technique (a means of massaging the head, spine and limbs), at the end of which my aches and pains would be largely banished.

I highly recommend it as a gentle, non-manipulative therapy for calming "everything"!

But post Christmas, I've discovered something even more amazing - yesterday, and every few weeks I go back to M for a session in which he uses the Bowen Technique. 

Now, you probably know I'm an engineer, brought up in the tradition of cause-and-effect, where the cause can be as measurable as the effect.  So imagine my initial reaction during my first Bowen session - just like homoeopathy and it's in-credible dilutions, the treatment's interaction with me is minimal and incredibly subtle; the lightest of touches and prolonged periods of no interaction at all...  but the effect is electrifying!  After an hour, I can honestly say I am as relaxed, calm and as "well" as I could ever imagine...

I now totally understand why it's listed in the clinic's "complementary therapies" leaflet - definitely something to recommend for anyone "stressed", whether physically or mentally.  Next, I might try Reiki!

(And, for the avoidance of doubt, I have been successfully treated by homoeopathy; over 20 years ago when I was "cured" of a dreadful allergy.   Whatever the underlying reason, that allergy has not returned.)

The Joy of Life

Cancer wakes you up!

No, I don't mean in the middle of the night - although that is of course true!  I mean that now, half way through cycle seven (currently sitting in the unit being topped up with Cetuximab) it's clear that I've never felt so full of life.  Maybe a little weak and watery, but so aware of "everything" and a crystal clear sense of "self" within that everything - truly "awake" (goodness, is that the drugs having an effect?!?!?)

Folded in amongst the now familiar routine of blood tests, infusions and pump removals, the last two weeks have been full of "living"; whether it be dinner parties or party games with friends, or delivering a promised document into my project at work.  Even "blogging and "just sitting" (heavens, something I have not done much of before!) is stimulating in a relaxed sort of way - and to cap it all, the family are coming (in three relays!) over the coming weekend, to celebrate Diana'a birthday. 

Cycle 7 is proving to be most enjoyable!