Even if you don’t know me personally, if you’re over 18, I bet you know at least one person who has (had) breast cancer. One in ten women will get it at some point (and a handful of men). This means that if you have 100 female friends on facebook, 10 of them will probably get breast cancer at some point. It’s the most common type of cancer in women (accounting for almost 25 %), is largely due to bad luck (or bad genes) rather than choice of living, and the treatment regime (in Norway at least) makes you eligible for sick leave for 12-24 months.

Of those 10 facebook friends of yours, I bet that one will tell the world, two will let their facebook friends know but write as little as possible, one might be an attention whore (OMG I have an appointment at the hospital tomorrow and I am really scared but please don’t ask me why), two will let you know after they’ve survived the treatments and are getting back to a semblance of normalcy, two won’t tell you at all and two will desperately try to hide the fact that they have (had) breast cancer.

Unfortunately, breast cancer is a bit like a boob job. It’s difficult to hide the hair loss that comes with traditional treatments (ie chemo) and most women get “cancer hair” after they’ve finished the treatments. In most cases the chemo leads to weight loss and a sad complexion. Wigs are a great substitute for hair loss, but in most cases – the wig itself is more obtrusive than really short hair.

When I first got the diagnosis, I decided to shave it all off before summer, get the scalp used to some sun. If I was going to lose it all I decided it was better to be the one making the decisions rather than wait for it all to fall off. I’d made a deal with a friend that she was to shave/cut it and make extensions of my hair – why waste it? – but as I realised that I wouldn’t be losing it, I needed a good reason to get rid of it all. After a week of waking up drenched in sweat and feeling that my hair was greasy and yucky from the night sweats, I had my reason.

I’ve done just about everything to my hair – had it short, long, permed, bleached, highlights, dreads, a mohawk, and just about every colour there is (even fluorescent and silver) – just never pink. And since pink is the breast cancer colour, there was no excuse not to go there.

The response has been quite interesting. People I know think it’s really awesome (or at least they pretend to). Strangers I strike up conversations with are inquisitive and when I explain, they think it is brilliant. Some jerks just stare rudely – I stare back – and if possible, I just say “This is my breast cancer hair, do you have a problem with it?” at which they look rather embarassed.

Apparently, 40-somethings aren’t supposed to have bright pink hair.

So for all the women (and men) out there who seem to be ashamed of having breast cancer – this one’s for you.

Oh. Colour is Directions Flamingo Pink. It fades rapidly even if you don’t wash it – so if you want to be bright and colourful for a special event, dye it the same day! And use gloves!

Yesterday, I had my second check-up after starting on my meds. I’m on my third Zoladex, have gobbled 57 Tamoxifen as well a numerous amount of Paracet, Imovane, Xylimelt, Dentipro and Xerodent. Side effects are seemingly stable and the tumour has not only decreased in size (it’s now 7 cm * 6,5 cm) but the loss in density has amazed even my oncologist.

The stronger the medication, the greater the risk of annoying side effects. I should be relieved that mine are as mild as they are. That being said, mine are pretty annoying, expensive and make my body even less co-operative than normal.

Hot flashes – boy, am I getting them, and mostly when I don’t need them. They tend to be worst when I’m sleeping and most nights I wake up at least once covered in sweat as if I’d just had a really bad nightmare. I’ve started taking the Tamoxifen at 11 am rather than 9 pm to see if that will help. I hope so. My grouchy back needs sleep to function (as well as it can) and these rapid wake-ups don’t do any good.

Worse than waking up in sweats is not being able to fall sleep. I can lie awake for hours, yawning till tears start running, dead tired, but I just can’t sleep. My onco was very clear from the start – take the pills you need to alleviate the side effects you experience – you don’t need more hassle than you already have! And I do occasionally have sleep problems, so I have Imovane to help me fall asleep.

The main problem with Imovane is that my sleep is not high in quality and I feel sluggish and off-beat the following day. So, I can choose between not enough sleep or crappy sleep – both giving me a really bad next day. An average “sleep disturbance cycle” for me is two- four nights of lying awake for 2-4 hours before falling asleep. In those cases, I only need one (in bad cases, two) nights with Imovane and I’m back to falling asleep rapidly. But this time – I’m now on my third week of sleep problems. I got a different prescription from my onco – Stilnoct –  hopfully they will do the job.

I’m used to having headaches from time to time, but the ones I’ve had now have been pressure headaches that spread down into my neck – rendering me pretty useless and grumpy. Luckily they don’t occur every day, and get better after five cups of coffee and a Paracet, but if they manage to sneak down into my neck my whole back goes ka-boom. Ruins my entire day.

Dryness of mouth – that’s an interesting one. Doubly problematic because the lack of saliva is really bad for my periodontitis so I have to be extra careful. I was recommended Xylimelt and Xerodent. Xylimelt has a long-term effect. You stick it on your gums and it lasts for about 2-5 hours. I was sceptical at first but it’s easy to get used to, works quite well, and doesn’t disappear down your throat whilst sleeping.

The problem with most saliva-stimulants is that they are also great laxatives. Xerodent is a complete and utter waste of money. The (weak) effect lasts as long as the lozenge – approximately 5 minutes – and if you take more than six, you need to stay close to a bathroom. However, Dentipro (generic brand from Swedish pharmacy Apoteket) is amazing. They have a strawberry-flavoured jellies that taste delicious, have a longer-lasting saliva-stimulating effect but aren’t laxatives!

All in all, not a bad bunch of side effects (and I haven’t even said a word about how amazing it is that my period is gone) – but they’re all rather expensive!!! (that was my complaint of the day).

It’s a week since I got my first zoladex implant and I’ve now taken seven tamiprofen (at precisely 9 pm – I’ve set an alarm on my phone).

I’ve been wondering when the side effects will set in – I am expecting to experience every possible side effect and then some.

Somewhere in my mind, I’ve decided that my body being as weird and wonky it is, I should expect side effects before effects.

Yesterday I was showering and I realised that my tit no longer looks nice, firm and plump. One dimple has turned into many dents. I figured this might be my imagination working overtime.

This morning, I can no longer pretend. My right tit now looks like a shrivelling balloon. Not only has it shrivelled, the tumour seems to have decreased in both size and density. I’m due for a new deep biopsy on the 13th so it will be exciting to see if the tumour will deflate as rapidly as it grew and what the biopsy, blood work and imaging will show.

As all my test results were optimal and perfect, I was placed in Treatment Arm A where the main focus is killing off hormone production. The plan is that I get Zoladex, Tamoxifen, and if those two don’t give the expected results Ibrance will be added. Deep biopsies and blood work will be done at regular intervals to check that the meds are working.

It’s all very medical and I am learning (reading) loads of new words. I’m glad I have a solid background in microbiology and chemistry, because I do sometimes find words I recognise and can relate to!

Due to my tumour being estrophile the treatment regime targets both my hormone production and the tumour’s ability to feed off existing hormones. Zoladex is a long-acting depot injection that I will receive every 28 days and it’s in charge of reducing hormone production. Tamoxifen is a pill that I take once daily and it targets the tumour cells’ ability to utilize estrogen. After two weeks I am scheduled to have a new deep biopsy, to check the effects (if any) on the tumour cells. One of the results that will decide future treatment is the KI-67 antigen. If the current meds are sufficient, my KI-67 levels should have halved – but as mine are at 7.5% (“normal” level for estrophile breast cancer patients is 30%) it is highly doubtful this has happened, in which case I will also start taking Ibrance, which is a CDK-inhibitor, and its role is “preventing overproliferation of cancer cells”.

I like Wikipedia because it explains difficult medical stuff as simply as possible, which basically means I know most of the words and recognize some biological pathways from biochemistry! But as the authors formulate descriptions much better than I ever will, here’s their explanation of the drugs involved:

Ibrance/palbociclib is a selective inhibitor of the cyclin-dependent kinasesCDK4 and CDK6 (enzyme inhibitor).

Zoladex/goserelin acetate, is a drug used to suppress production of the sex hormones (testosterone and estrogen), particularly in the treatment of breast and prostate cancer.

Tamoxifen itself is a prodrug, having relatively little affinity for its target protein, the estrogen receptor (ER).

Unlike Ibrance, Tamoxifen and Zoladex have been used for many years and there are comprehensive lists of potential side effects of both.

The most commonly reported adverse reactions with ZOLADEX in breast cancer clinical trials were hot flashes (70%), decreased libido (47.7%), tumor flare (23%), nausea (11%), edema (5%), and malaise/fatigue/lethargy (5%). Injection site reactions were reported in less than 1% of patients.

Commonly reported side effects of tamoxifen include: amenorrhea, fluid retention, hot flash, nausea, vaginal discharge, vaginal hemorrhage, weight loss, and skin changes. Other side effects include: infection, sepsis, alopecia, constipation, cough, diarrhea, edema, increased serum aspartate aminotransferase, menstrual disease, oligomenorrhea, ostealgia, vomiting, and weight gain (these may or may not appear until years after treatment)

Ibrance, on the other hand, got an accelerated approval by the FDA on February 2nd, 2015. According to TV2, “In 2015, a study of cancer drug palbociclib (Ibrance) was stopped because the results were so good that it was not prudent to continue and give some of the study participants placebo medicine”. Ibrance was approved by Norwegian health authorities on November 9th, 2016.

Common side effects of Ibrance include: decreased neutrophils. Other side effects include: infection and pulmonary embolism.

Looks a bit too good to be true – the complete list is slightly longer.

Today is day 5 and I am still awaiting the onset of side effects. I was actually hoping the hot flashes would appear instantaneously, as it’s been pretty cold the last week. Not that I’m complaining, not the slightest bit! But with my oh-so-weird body, a thought that sometimes circulates is are the meds actually working since I’m not experiencing side effects? And I know that they most probably are, and I should count myself lucky that there are no side effects yet and that they will set in at some point and I will be cursing old-me who wanted them… weird mind, I know.

And in case you’re wondering about the financial pros of this study:
I get the drugs and tests for free (I just have to pay for getting the stitches removed). I don’t get paid to participate. I am doing this of my own free will because I want to contribute.