40. Blogging – how it can turn your life around?

I like carrots – a lot, as it happens. But lest you think I have turned into an actual Rabbit (Buggsy – below) let me update my blog with a recent photograph.

Colin Beard Montage

Note: I am not even a shade of orange from over-consumption of carotene (an ingredient found in carrots but other stuff too that is responsible for the characteristic colour); au contraire, I look and feel like I need a good dose of UV light, please. Like Buggsy, however, you may have noticed I have a little more fur than a few weeks ago!

As I have to tick a box, concerning ongoing degrees of alopecia, in my daily ‘cancer’ diary I thought I should let you know that I am heading towards ‘baldy or Trichomeless’ not just atop my crown, but also under my arms, on my chest, and very disturbingly, around my pubes though not my bum! I still have hairy legs, feet and toes (no relation to Head, Hands and Feet – the ‘70s band already commented on in Blog 8). So, some trichome-bearing sites (see also Blog 15) seem impervious to chemo attack.

So, why am I telling you this? Well, the beard is an attempt to check up on whether overall ‘hair-loss’ is due to the damned stuff just falling out whilst some new stuff continues to replenish losses, though inadequately. Or, does the Chemo cause both hair-loss through drop out and inhibition of new growth (my head hair has barely moved in nearly three months). Well, as you can see from the photo, I do appear to have hair-growth, a beard, albeit even more gray colour than previously and of a “fine-downier” consistency than in past attempts to grow a beard, pre-chemo. The current beard appears to be standard male-pattern: commencing from the top of ears and via sideburns to cheeks; to upper lip and lower chin; as well as the neck – though I did shave the lower part of it a few days back – sorry!

I wonder if anyone has done research on Combo Chemo Cocktail modulated-body-hair loss? I’d be happy to join such a clinical trial. I can already document the pattern caused by my EOX mixture! So, if a budding new researcher is looking for a PhD topic; halt, look no further, I have one here already on a plate. And, there’s probably drug company sponsorship just waiting on your knock on their door. And further, there’s no shortage of patients. I can guarantee a whole bunch of them from my Chemo ward – well, at least my pal, N, fellow brother-in-arms and an EOX recipient in the past.

I received an email from one of our friends, J, (and blog reader) earlier today. She forwarded a link to an online article in the digital version of theguardian. How can my search engines have missed this?

theguardian Montage

However, this is less my point than the more crucial issue that I might not have (ever?) been made aware of this ‘cancer cure’ and vital research carried out at the Royal Marsden Hospital, but for my blog and my friend, J, reading it!

Will this new blog-linked information turn my life around? In all honesty I don’t and actually can’t know. However, the story is impressive, and although the patient highlighted had malignant melanoma, (Stage 4 with spread to lymph nodes and other places – just like me), other named cancers had been treated successfully too. Stomach cancer wasn’t one of the named ones – so, not like me! So, am I back to square one, like with the Proton Beam Therapy? Who knows, perhaps Dr P, when I see him!

You might want to read the whole article, but below I have extracted the major points, as I see them, and linked them with some of my own comments. Read on…

Accessed at https://www.theguardian.com/science/2016/feb/04/revolutionary-drug-immune-system-advanced-cancer?CMP=Share_AndroidApp_Gmail on 4 February 2016.

The closest thing yet to a cure for terminal cancer?

Sarah Boseley, Health editor of theguardian.

The following are extracts of theguardian article, together with some of my own text – to link slightly disparate arguments following my selection decisions. My text is italicised bold.

[“Immunotherapy has given Sandra Sayce an extra 10 years of life, and now new combinations of the treatment may offer hope to many more patients. Nobody, including Sayce, is prepared to say that her advanced skin cancer has been beaten. Yet the last treatment she had for stage 4 melanoma, which normally kills within months, was nearly 10 years ago.”

“She was then given immunotherapy, which teaches the body’s defensive immune system to identify cancer cells and attack them from within, in the same way it would fight off a cold. After the treatment, the cancer disappeared. “It took me a couple of years to believe it was true,” she said at her home in Ruislip, west London. “You never quite lose that concern at the back of your mind, but there is no active disease and I have been stable for so long,” she added.”

She was given a drug called ipilimumab. It was a novel approach, designed, she was told, to reprogramme her immune system. She had just four treatments – one a month from September to December. “I had a head-to-toe rash, which itched,” she said. “But I knew quite quickly that it was doing something.” The lesions in her leg, which had become lumpy, started to flatten. The lesions in her liver and spleen disappeared. She has had no further treatment and there is no sign of cancer.

Cancer can evolve to be able to survive the toxic drugs thrown at it, just as bacteria become resistant to antibiotics, said Larkin. “The critical difference with immunotherapy is that you are actually reprogramming the immune system, if you like. The idea is, if the tumour does change and evolve, the immune system can also change and evolve with the tumour. I can’t exactly prove that but I fundamentally think that’s the critical difference.”

He persuaded a leading US pharmaceutical company to open an arm of a trial using ipi – as everybody now calls it – and a newer immunotherapy drug, pembrolizumab, at the Marsden as well as the world-famous US hospitals. He succeeded in enrolling more people on to the trial than any other centre. Alone, the drugs can have great results with several types of cancer – kidney, bladder, head and neck as well as melanoma – but in only 20-25% of patients. The hope was that a combination might help more.”]

Since then, much better outcomes have been achieved with combination therapy.

Prof Martin Gore, medical director at the Royal Marsden Hospital, who is also a melanoma and kidney cancer specialist, argues strongly that medical oncologists and GPs need to stay aware of recent findings and be proactive in getting their patients involved in trials for new treatments such as these. He comments on a response from a presumably sceptical doctor in theguardian article:

[“People say it is all right for the academics but we can’t do that. We’re too busy,” he said. Prof Gore went on to say, “I’d quite like to see that being challenged a bit, saying, ‘come on. I do it – why don’t you do it?’ If you are a doctor, by definition you should be interested in research. Our colleagues at the GMC [the General Medical Council, which regulates doctors] expect us to keep up to date.

“It is not that people don’t want to do it. It is that people are too busy. Many people’s jobs are incredibly crowded with clinical work. In some places, the oncologists are very embattled with the number of patients. That goes for general practice in spades. I think we need to look at that a bit to know how we can change the way we work so we have breathing space. I think we have a way to go in terms of challenging the system to allow people to do it or even expect people to do it.”]

READ ON…

I do hope you have either read the above or arrived here deliberately.  Either way, good, because you just have to read the last two paragraphs of this blog entry, for the whole thing to make (much) sense.

So, maybe there’s a chance, even a tiny, tiny, tiny one would be good! Then again, if we believe we are dealing with my tiny world of quantum mechanics (Blog 38 ), ipi and/or the newer pembrolizumab, preferably used in combination therapy, may work AND may not work on gastric cancers; but until someone looks to see if my cancer has gone after I have been treated, then we will not be able to predict an outcome to the question, “Could I be treated with the new immunotherapy agents for my cancer?”. So, voila, I have a fool-proof method of getting the treatment I want (and without confrontation) if I work on the following:

So, perhaps we’ll give it a go then. Eh?

Well, say no more; nudge, nudge; say no more

Wink, wink; nudge, nudge; know what I mean?

 (Nudge, Nudge – a British expression used to make someone realise an ulterior motive to your conversation.  Accessed at http://www.urbandictionary.com/define.php?term=wink+wink+nudge+nudge  on 4 February 2016.)

 

Wink Wink Nudge Nudge

The expression was popularised in the 1960s in the infamous, “Nudge, Nudge” sketch (laden with sexual innuendo) from the third Monty Python’s Flying Circus episode.  Accessed at https://en.wikipedia.org/wiki/Nudge_Nudge on 4 February 2016.

And Eric Idle’s selection from “Personal best”, Accessed at http://www.montypython.com/tvshow_Monty%20Python’s%20Personal%20Best%20%282006%29/19 on 4 February 2016.

That’s all folks. Bye for now.

BUGS001

 

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