Friday 4 June 2010

It can get worse...really.


OK, a new side effect reared its head last week.

I seem to like the ones further down the list of potential side effects, such as bone pain for example. Let's add a new one, shall we?

'Skin rash'. Yes, down the list of possible Taxotereshit side effects, slightly above bone pain but a long way down from the usual suspects of nausea/vomiting/fatigue (which I don't have), is a 'skin rash'.

I know a lot about skin. I get psoriasis. Except I haven't suffered with it for a long while because I used to take a targeted biological intervention. Thing is, as a drug which suppresses the immune system (even a tiny part), I am not allowed to combine it with chemotherapy.

Anyone who knows anything about psoriasis knows something called 'rebound flare' can occur when you stop taking a treatment. Also, anyone who knows anything about psoriasis knows about the isomorphic response the psoriatic can experience when the skin is in any way damaged, commonly known as Koebner Phenomenon.

Anyway, for the last few months I have been waiting for my rebound flare from coming off my biologic at the end of March. House et al all said, rather dismissively when I attempted to discuss my psoriasis with them, 'You won't have any problems with your psoriasis because the chemotherapy will keep it away'.

I have had psoriasis most of my life. I am an expert patient in it. I know more about psoriasis than your average General Practioner, who probably didn't take a rotation on skin during their training. Indeed, I have gone all over the globe as this expert patient person: I have trained derm nurses; lectured consultant dermatologists; written many papers on patient perspectives and the like on psoriasis and its effects on a patient. I know my Ciclopsorin A from my Methotrexate; my mometasone furaote from my clobetasol propionate; my narrowband from my broadband phototherapy.

"I do hope you are right" I said to the oncologists back in March,attempting to be diplomatic and knowing both my skin and what drugs don't work (I have taken large amounts of Methotrexate, an immuno-suppressing chemotherapy drug and it didn't touch my skin) "but if I do rebound, it could potentially affect your treatment of me".

When I rebound, I can end up with large percentage coverage, swelling of the limbs, a temperature and need in-patient care as I can become erythrodermic. Best Friend laughs when I say this word. She thinks it sounds like a character off 'Heroes' -"Watch out! She's going erythrodermic!".

But the truth is, erythrodermic psoriasis is potentially life threatening. The body cannot control its temperature when a large proportion of its largest organ cannot 'breath'. The kidneys begin to shut down and immediate ermergency care is needed.

Early last year, after coming off another drug, my skin went crazy. I was quite poorly and was a whisker away from this. The only thing that prevented it was another biological drug...

...the one I came off at the end of March pre-chemo.

The oncologists, who probably know less than your average GP, patronisingly dismissed my concerns.

I accept one shouldn't overly worry about something that hasn't happened yet. I don't think too much about being non-responsive to the FECshit and having to go on Taxotereshit early and this not working too...I thought of the possible scenarios and need to take two cycles and have an ultrasound, hoping that Colin gets smaller before dealing with the worst case scenario.

But I am now covered in psoriasis. It all began 5 days after starting Taxotere. It presented, at first, like a lichen planus skin rash but has now gone on to be psoriasis. Perhaps it is rebound; perhaps it is Koebner from the initial 'skin rash'. Either way, my body is covered in hundreds and hundreds of little red spots, which will get bigger and bigger until I am consumed with it. And then it begins...

...having chemo will be difficult, surgery similarly. Currently, a nursey Bernard would find it difficult to get a cannula in my hand because of the psoriasis.

I saw my lovely dermatologist this week. His name is Silvano and he is Italian (did you know there are more dermatologists per head of population in Italy than any other country in the world?). I love Silvano. He is an excellent dermatologist and he and I have an excellent working relationship. We are a partnership in my care. We discuss treatment options and outcomes; he treats me as an equal.

Perhaps you can now see why I was and haven't been overly impressed with the way the oncologists speak with me? No discussion or looking at possible treatment plans and outcomes. I am no expert patient in oncology (although I reckon I know a lot more than I did pre-Colin), but I am perfectly capable of holding a discussion with a consultant oncologist and understand drug therapies, plans and outcomes. Unfortunately, they seem purposefully keep you out of everything. Perhaps it is because cancer kills, where as psoriasis just makes you look and feel like you wish you were dead? Perhaps the average person with cancer deosn't want to discuss anything other than 'am I going to die?' with their oncologist. Hey, you know my attitude to all of that, don't you?

Silvano's hands are tied. He cannot give me UV, systemic drugs or biologics. I am allergic to vitamin D analogue and coal tar-based topicals. I am non-repsonsive to even the most potent steroid topicals, although I am currently covering my body is one to see if it can help enough to get a needle in my hand next week.

Silvano looked crestfallen. The only way we can treat the psoriasis is to come off chemotherapy. If I come off chemotherapy...well, that isn't an option either. But the untreated psoriasis may get a lot, lot worse to the point where chemo and surgery will be difficult.

Can you see the position I am in here? Devil deep blue sea? Rock and a hard place? Up the stream without a paddle? Fucked?

I can handle cancer, people. Cancer has a treatment plan and it may or may not work. Cancer can be cured, psoriasis can't. I would rather go through this treatment for cancer than live with psoriasis. Don't think me crass. Psoriasis severely diminishes quality of life to the point where more people with psoriasis suffer from suicidal ideation than other disease group patients, including those with terminal cancer (Gupta et al, 1993).

I have breast cancer. I now have my psoriasis back. Truthfully, life isn't so great right now. I am bald, bloated and I look like I have a very bad case of measles. Within a month, I will potentially look like Philip Marlowe, the main character in Dennis Potter's The Singing Detective and no, not even Joanne Whalley-Kilmer could make me feel better...

So, I am currently attempting to 1. accept I have my psoriasis back and will look extremely shit over the next 6 months 2. accept my cancer treatment might get affected 3. trying not to see Nembutal as a solution.

Well, #3 would be a solution to #s 1 and 2, wouldn't it? Don't worry, I am not depressed. I am just trying to adjust...

...bloody Kylie didn't have to deal with bloody psoriasis as well as breast cancer!!!

6 comments:

  1. Shitfuckarseholebastardpsoriasiscolinihateyou.

    Sounds like guttate flare big time....maybe it will subside...give it time ...a little bit at least...

    x x x x

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  2. I couldn't have put it better Guy, you have such a way with words :)

    I really hope this flare is short lived, it's the last thing you need on top of everything else xxx.

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  3. Nah, not guttate. I don't get guttate. My P always starts off as tiny pre-pustular spots, but within a day or so turns into plaque. I think it is possible some of this started out as Taxotere-related skin rash...Koebner has turned it into plaque. I also think there is a some post-Humira rebound too...

    Either way, I know what happens next. I have had enough experience of this. Unfortunately. The posts get bigger and bigger. They join up with the other spots and then I have 70% plus coverage.

    Last summer, Silvano said I was nearer 80% - just my scalp, neck and face were clear. All trunk/arms/legs/feet were covered. That is some coverage, I can tell you! I think coming off Raptiva last February caused a massive rebound. Thank god the Humira kicked in during the summer, because I would have been erythrodermic and ended up in hospital in a drip.

    No Humira this time. No Stelara either. And no Ciclo, UV or even Dead Sea.

    I just cannot imagine what is going to happen if this goes where experience tells me it's going to go...

    I knew you guys would understand and thanks for reading!

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  4. PS

    This swearing a lot but not using the space bar is beginning to catch on, huh?!?

    :-)

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  5. Your psoriasis sounds very like mine the whole join up and take over your body shinanigans on the rebound! I'm not going to swear although I have said a few wee expletives as I have read this! I hope things settle down soon for you and the risk of erythrodemia passes! What else can I say, the whole situation sucks!

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  6. Bugger.

    So it's now Colin v psoriasis. Much as I hate Colin and want him to feck off, I hope he kicks the living shit out of this flare first.

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