I have completely dropped off blog writing in the last month. The reasons for this will emerge here. This, I promise, is my last personal blog on the subject of melanoma and how it has affected me.
Melanoma cancer appears to do the very opposite of what most other cancers seek to do. Most cancers want to quietly invade and get your body to accept their existence or at least fool your system into pretending that they are not there. This is not the case with melanomas. The body is all too aware of their existence and happily combats them and suppresses them from the word go.
It is now commonly believed by the medics that melanomas are often “contracted” in one’s early youth, or even infancy: There you are sitting happily in the pushchair with only a sun bonnet for protection, or running around the garden in the bright sunshine with very little on and no protection whatsoever. One of your cute little moles gets irritated by a touch of sunburn and voila!
However, like many viruses (viri?), once in the system, melanomas are suppressed but never fully wiped out. With viruses, one day something happens to lower your body’s resistance and suddenly shingles, boils, acne, or a dozen other nastiness’s can suddenly erupt from nowhere. In the case of the melanoma, it can sit there silently for 40 or 50 years just waiting until your immune system begins to falter, most commonly with age. Hence the reason that the majority of sufferers are in their mid 60s to 80s.
Melanomas appear in four distinct “stages”. Stage one melanoma is when a mole begins to change colour, shape or expand. If you are very lucky this will be on your front, arm or leg and you can quickly spot it and have it excised under local anaesthetic and that will be the end of it.
However, sunburn more commonly occurs on your back, and so do most melanomas. You need to be very lucky to have someone rapidly spot the change there. If, as in my case, it is well hidden between your shoulder blades this will not occur until the mole begins to bleed or itch, by which time it has become stage 2. This means it has become attached to your blood supply and developed its own nervous tissue. In this case you need a far bigger operation to dig it out, usually requiring a skin graft after. It is also usual to take biopsies and even remove your lymph nodes from under your armpits because this is where the melanoma is next heading.
Some six years ago this is precisely what happened to me. For the next five years, things had settled down and no new developments occurred. I had hoped that was the end of it. But it wasn’t to be. Last year a nodule appeared under one armpit heralding the arrival of stage three. Scans showed two “ganglions” one sitting harmlessly just under the skin the other deep into one of the lymph nodes. These were removed, the deep one leaving me with no feeling in my left hand armpit to this day. The good news was that only the two cancers were spotted, and I might, just might be lucky. But once stage three is reached it is on the cards that the melanoma will spread eventually and become the lethal stage four.
Only 3 months ago another nodule arose on my right breast. Scans showed that melanomas had spread like wildfire throughout my body. I had them in both lungs, a large one next to my spine, one in my adrenal gland and several more dotted all over. Stage four basically turns you into one living melanoma. It does it with frightening rapidity, hence why the death rate is so rapid – 75% mortality within a year. I was very lucky to get such a quick warning with the subcutaneous breast cancer. Without this, for most people there are no warnings until they fall seriously ill and only then get a diagnosis which comes far too late to do anything about it.
I was further lucky in living in France and within two weeks having had my first injection of the hideously expensive Ipilimumab. The rest, as they say, is history. I knew that 70% of all recipients had serious and potentially life threatening side effects and that a quarter need to be hospitalized. I happily sailed through the first three injections with no ill effects whatsoever, except that my breast cancer had shrunk to nothing. It was the fourth and final injection which did for me.
What the drug basically does is boost your immune system to that approaching a teenager, but in a sixty year old’s body. The immune system senses the melanoma and floods the body with “T” cells, which in turn emit lymphocytes which attack the cancers. However, melanomas, once established, develop their own defence system. Each lymphocyte has a depression built into it, much like a keyhole. When it mindlessly attaches itself to a piece of normal body tissue there is a corresponding piece of projecting genetic material that fits the depression and acts like a sort of Masonic handshake which tells the lymphocyte, “We are one of you.” The lymphocyte promptly indulges in a programmed cell death. As can be guessed, the melanoma has also developed a copy of this projection. What the drug does is mask this depression so that the lymphocytes don’t die, but go battling on. The problem is that the lymphocytes now can’t readily tell normal tissue from cancerous tissue.
My first scan after treatment showed clearly that most of the melanomas, including the ones on the lungs, had completely disappeared, the rest were “lesions” which is a vague term doctors use to mean that they were either dried up melanomas or scar tissue. Only one melanoma remained. This was in my adrenal gland. and was the cause of all my problems.
The adrenal glands are a mysterious pair of glands sitting on top of the kidneys, both of a different shape and both doing different tasks. We associate the production of adrenaline with the adrenals, but infact they both produce a cocktail of different, naturally occurring powerful steroid type drugs that control our energy levels, responses to stress etc. and which also control the immune system! This was the problem. Because of the cancer my immune system was not getting any control drugs from the adrenal glands. Because the adrenal glands have a limited blood supply, unlike all the other melanomas the lymphocytes could not get ready access to it to destroy it, but the immune system was well aware of its existence so was pumping out more and more antibodies to attack it. These were rampaging around my body and started attacking me instead. This was why I was being given such a massive dosage of steroids. Partly to quieten down the immune system, and partly to replace the lack of their production by the adrenal gland.
Unfortunately I also developed a massive reaction to the corticoid steroids they were giving me. I lost muscle and weight and rapidly took on a look resembling Ghandi at his leanest. Plus all the unpleasant side effects that I won’t go into. Needless to say I had to come off them in a hurry, and as they had an opioid effect had to “come down” off them. In the next two weeks I developed adrenal fatigue. I could barely move to do anything and was sleeping over 15 hours a day. If I did manage to get up and do a small activity after half an hour I had to go back to bed and usually slept for 4 more hours to recover. This was all due to the under production of my adrenal glands. This was also the reason that I have not been writing my blog. There finally got to it.
When I finally returned to the hospital the doctor was not best pleased with me. He put me onto a large dose of yet another steroid – hydrocortisone and warned me that I must not come off these under any circumstances as I could face dire consequences otherwise. I am pleased to announce that I am getting no nasty side effects from this (so far) nor experiencing the opioid type highs and sleeplessness. Infact things are very slowly returning to normal. But still a way to go before I get back full energy levels or strength, but at least I am feeling more lively.
Oh the other good news. In the three weeks since the first scan, a second scan showed that my adrenal melanoma had already shrunk form 21 mm to 17mm and looks fair to be continuing to shrink. As a result they view me as case cured. My side effects will continue to occur until either that last melanoma is just a “lesion” or until my immune system settles down a bit more and comes to terms with the “old man” it is actually dealing with.
The latest research findings now show that 90% of those taking this drug live at least a year longer even if they have had to rapidly come off it due to adverse effects. But now it is shown that 80% of recipients are “cured” or at least had the melanomas shrunk sufficiently that in the 10 years since trials started none have had a resurgence or died of the disease. so I am looking fair to surviving this for at least the next ten years now. Need to open another bottle of bubbly to celebrate.