The Perks Of Pembrolizumab

Last week it was reported that two scientists behind groundbreaking Immunotherapy developments had won the annual Nobel Prize for Physiology or Medicine for their work on Immunotherapy.

This is big (and incredible) news within the cancer world! It got me thinking about all the positives which come alongside taking a newer, cleaner drug like Pembrolizumab. I’m continuing on treatment indefinitely which is hard to get my head around, but It’s safe to say I wouldn’t be alive without it! I just have to suck it up and keep on going.

Professor James Allison and Professor Tasuku Honjo discovered how to fight cancer using the body’s own immunise system, which eventually led to treatments for advance melanoma and has transformed the way it’s treated. My current Immunotherapy drug Pembrolizumab is now also being used to treat other cancers such as advanced lung cancer and Hodgkins Lymphoma. The drugs now offers hope to patients like me with previously untreatable cancer! Believe it or not the duos work began in the 1990s and is now starting to pay dividends!

You can read more about the award and the developments in the news section of the Cancer Research UK website, which also includes a few quotes from yours truly! Thanks CRUK!

I’m so happy that research in the area has been funded so far, but my case is one of many, some not as successful! Hopefully research will continue so scientists can fully understand why drugs work for some people and not others and how it can developed to become even more successful.

Ipilimumab (aka Yervoy), which I took a few years ago was one of the first drugs developed using the scientists discovery, with Pembrolizumab and Nivolumab following closely behind.

I started thinking about all the perks of taking this drug compared to some of my previous treatments. Going through endless cycles treatment is like crossing a battlefield every day. I need to keep thinking about the positive aspects to help keep a positive mindset, and it might help someone else too!

My hair and eyebrows have grown back since my treatment change, for me this is a huge success! I ask look well (partly thanks to the hair and eyebrows!) therefore not like your typical cancer patient; this does wonders for my mental health, but I know often people don’t always appreciate how unwell I am if they can’t see the evidence for themselves.

The side effects for me have been a lot less than on previous systemic treatments, including Vemurafenib which caused me many more problems such as frequent vomiting, skin rashes, bad stomach, headaches and joint pains to name a few. I will sometimes still experience these side effects, but to a much lesser degree than previously. My current main side effects are fatigue and vitiligo, and although these get me down frequently, (see my previous post Tired of Being Tired) I know I’ve come really far over the past two and a half years.

The infusion of the chemo itself is only 30 minutes, I know some people end up hooked up to machines for the best part of a working day receiving other types of chemotherapy. On a really really good day I might only be physically hooked up to a drip stand for a hour or so. Sure, that hour feels like an eternity, and there’s an awful lot of waiting around in between appointments etc, but it could be much worse. Today I had a really long day at the hospital, but I have to remind myself it’s all for the greater good!

Some weeks, when not seeing my consultant or one of my oncology team I only have to visit my hospital for the treatment in the afternoon, making the whole experience far less pain staking!

I’ve spent much less time as an inpatient on a hospital ward that with previous treatments. Three years ago it felt like I was constantly visiting my local A&E due to various side effects and having numerous blood transfusions, but so far so good with Pembrolizumab.

I hope that in the future this drug will be developed into a tablet, meaning a lot less visits to hospital for patients like me, considering how advanced chemotherapy treatments are becoming I would it’s not too much of a distant dream. Until then I just have to grit my teeth and keep going.

Facing The Chop

I’ve been lucky enough to have my own hair (minus a wig or extensions) for almost 9 months. I can’t get over how much it’s grown, it feels like the old me, circa 2008 is back again. Now I’m 10 years older but quite possibly not any wiser.

Since my regrowth I’ve wanted to let my hair grow and not touch it at all, and I’m faced with a huge anxiety about facing the chop. Why would I want to cut my hair when loosing it meant I had so little confidence? I spent countless nights crying myself to sleep and moaning to my friends about my lack of hair and subsequent ‘cancer patient’ hair styles that it seems like cutting it would feel like going backwards. I now have a full head of thick hair but the confidence is still hugely dented. It’s one of the many things around my illness which causes me anxiety.

When I initially started systemic treatment four years ago I was told to my relief I wasn’t going to loose my hair. After various changes in treatment I did end up loosing the majority of it, with what was left turning into a frizzy afro texture.

First I had to get used to the fact I was having treatment but didn’t look conventionally unwell, then I had to get used to obviously looking like a cancer patient. I finally did this and managed to embrace wearing a wig, after all I had straight, neat hair for once in my life so tried to see that as a bonus! I also lost all my eyebrow hair so got tattoos so I could feel ‘normal’. Then, with more hair changing I got extensions, which aren’t as easy to manage as one might think. Now I have to get used to the ‘old me’ making an appearance, only I’m not that person anymore, I’m a completely new one still undergoing treatment, however to a another person in the street I look 100% healthy. It looks much harder than it seems.

When my hair started to fall out I wasn’t mentally prepared, I didn’t expect it so I was really shocked. I thought it might just be a little bit, but when the bath plug hole was so blocked the water wouldn’t drain properly I knew I was in trouble. In one way I thought if I really believed my hair wouldn’t fall out then somehow it would all be ok. Given the original advice given I failed to buy a wig in advance in preparation.

During some of my worst times I used to dream about having long flowing hair again; and being able to tie it back. I’ll never take that for granted but now I have it I really don’t want to let go.

I now have more than enough hair to colour and cut into any style I want, but I can’t face it! My hair could do with a little refresh and a couple on inches off the bottom but it feels like too much too soon after my original trauma, it took so long to grow back after all.

At the moment, I feel ok that it’s a bit of a mess because it’s all my own hair, I’m never going to get a medal for best hair style, but I really don’t care. I know I’ll have to face getting it cut in the not too distant future, but I want to hold onto the growth; to this moment of success within my treatment journey, it’s a small win, but it’s a win all the same.

Has anyone else felt the same about hair cuts post chemo growth, or is it just me?! Perhaps in the future I’ll change drugs and it’ll fall out again, so I want it for as long as possible. I know it’s slightly illogically, completely irrational and silly of me, but having cancer does strange things sometimes!

Back To My Roots

The end of 2017 marked a significant change for me, no longer wearing a wig or having hair extensions, which had been a huge part of my life for the past two and a half years. Hair loss is daunting, heartbreaking and isolating, so I thought I would write a short post that might be useful for those who are currently experience hair loss due to cancer treatment, and are perhaps thinking about wearing a wig. I documented my personal experience with a couple of blog posts, Hair Envy and Letting My Hair Down.

Although I’m so pleased to have my own hair back, the thought I could loose it again with future treatment is never too far from my mind. I started to loose my hair towards the end of 2015 when I first starting taking Vemurafenib, and wore a wig on an almost daily basis for over two years. Due to a change in treatment, last summer my hair had finally grown enough for me to start wearing hair extensions, and I got rid of the wig all together. Sadly I didn’t manage to get rid of the wig before I turned 30, which was my original goal, but so far this year I’ve be sporting my own long, curly hair, which is the best gift I could have asked for.

I had my extensions removed late last year before starting a new job. Nowadays my hair is no longer affected by the cancer blasting drugs and has returned to its natural state. It looks the same as it did before it started thinning and falling out, which is awesome.

As a female loosing my hair was one of the worst  things that could have happened alongside my treatment, because it made me feel so ugly. When I looked in the mirror I saw someone who wasn’t really me anymore, but a cancer patient. Nothing screams I have cancer more than having no hair and eyebrows. When this happened It hit me just how serious my situation was. Now I have my own hair again I feel a little more confident, but it will take time to get used to again.

I’d read about how most patients loose their hair during treatment, and that when it does come back, it can come back a different colour, or a different texture.

When my hair loss first started I began to use gentle hair products and non-medicated shampoos, conditioners, and body washes, so without parabens. My scalp and skin became very sensitive so I steered clear of my usual go to products. When washing my hair I used gentle strokes and patting motions to clean my hair rather than scrubbing as I would have done previously. I used various products from Aveeno, Timotei (thanks poundland) and Sanex and also cut down the amount I washed my hair, having previously washed it every other day. I have since read that leaving a longer time between washes doesn’t prevent hair loss, but the less time I spent starring at clumps of hair in the bath plug hole the better. My scalp still feels fairly sensitive now I am taking an immunotherapy drug, so I still use the similar products on a daily basis.

I stopped using a hairdryer to dry my hair, instead using a towel, and made sure to rub it very gently. I found it was best to avoid too much heat from hairdryers or hair straighteners, so started going for a more natural look. This goes against everything my Nan said when I was younger, she’d always say leaving hair wet would mean I would catch a cold!

Once I began wearing a wig it became important for it to look as normal and natural as possible. I got two wigs on the NHS via Macmillan Cancer Support, althought I only ever ended up wearing one. It got to a point where it was my new normal, It was only when I took my wig off when I got home in the evening when it really hit me. I would go past a mirror and catch a glimpse of myself and suddenly it hit me that I was extreamly unwell, and that the drugs I have been taking to keep me alive and try to make me feel better were actually poisoning my body so much that I lost my hair, eyebrows and most of my body hair. I was filled with an overwhelming sadness and I still feel emotional thinking about it.

I knew people would notice when I started wearing a wig, as the style and colour were very different to my natural locks, so getting it cut and shaped by a professional hairdresser was really important, It made me feel more comfortable, as it looked more natural and felt less heavy on my head.

I used a hair brush from Denman specifically desgined for people with wigs or hair extensions, and washed the wig every few weeks in luke warm water using gentle baby shampoo, I was pretty shocked at how much dirt came out!

The best tip I was given was to use a clothes steamer to straighten my wig, it sounds bizarre, but it worked wonders on my wig after weeks of excessive brushing, which sometimes left the ends looking dry and brittle. I bought one from Amazon which helped to give my hair the glossy newly washed look.

I then had hair extensions for about six months before it had grown long enough for me to feel happy and confident going back to my roots. It was very expensive, but I justified the cost by thinking about how much money I’d saved from not going to the hairdressers for a cut and blow dry for over two years! I’d recommend it to anyone if they want to speed up the hair growing process.

I am due a PET CT scan in the next few weeks, which I’m already very anxious about. I’m hoping that pembrolizumab keeps me stable for the foreseeable future, as well as the obvious it would also mean I can continue to enjoy having my own hair again. I always used to want straight hair as a teenager, but nowadays I’m not fussy, I guess it’s one of those things you might not truly appreciate until it’s gone!

Letting My Hair Down

It has been almost a year since I began taking iv drug Pembrolizumab to help keep my cancer at bay. When I first began systemic treatment back in 2014 my hair and eyebrows fell out and then my hair took on a new afro like texture. I documented this expereince last year in my blog posts Eyebrow Tattoos and Hair Envy.

Since I began Pembrolizumab exactly one year ago my hair has started to grow back slowly, this is because hair loss isn’t a side effect of this particular drug, but after having covered up for two years, next week marks my (hopefully) permanent departure from wig wearing. I am currently sporting an unruly short hair style somewhere between pixie crop and a graduated bob, but I decided to take the plunge and am due to have hair extensions fitted next week. The texture, colour and thickness have all come back,  I just need to add to the length. I have a short hairstyle once before after I had a crainitomy to remove a brain tumour in 2010, it did suit me, but I really miss my long hair. Wearing a wig for hours on end, particularly in the summer months can get really uncomfortable, so I am really excited about the freedom hair extensions will give me. I can’t wait to wake up and not have to think about my hair.

The heartache of loosing my hair is something I wasn’t prepared for, or even something I will get over anytime soon. Having to wear a wig has become part of my daily routine however, it also completely striped me of my confidence, despite being my new normal. Although growth has made it easier over time, I still wear a wig in public most of the time and would never consider going to work without covering my head. As a female loosing my hair was one of the worst  things that could have happened, because it made me feel the exact opposite, unfemale. When I looked in the mirror I saw someone who wasn’t really me anymore, but a cancer patient. It has made me stand out (not in a good way!) and feel ugly.

I know that getting hair extensions doesn’t mean I am suddenly going become self assured and confident about my appearance, there are no photographs of my bald head or short chemo affected hair in existence, which I think speaks volumes about my feelings on the matter. Most of my friends know I used to love taking photos when out and about, but this experience mean my outlook has changed. Paying a visit to the hairdressers marks another key step forward for me in dealing with my diagnosis, and perhaps over time I will be letting my hair down once again and not worry about what others think.

Sometimes it feels as though people think that because I am facing cancer that for some reason I no longer care about seemingly small or trivial things like what they think about the way I look. If anything it has made me more anxious, angry and upset.

I’m sure there are some women who would be comfortable and confident with having a bald head, however I am guessing there is a tiny minority who would be ok with hair loss from cancer treatment. I know I am not one of them. The past two years have been a mental and emotional journey, I tried to rock a shaved head and a variety of headscarfs but my locks were part of me, so losing them was a horrid experience. Yes, It is a small price to pay for life extending treatment, that goes without saying, but it doesn’t mean I should be happy about it!

Oddly, I am now feeling anxious about ditching the wig altogether. People may wrongly assume that treatment has come to an end and I am cancer free, but as it stands I am continuing having Immunotherapy every three weeks. I am now a stage 4 patient with hair, which is better than not having any, so onwards and upwards in a way.  I’m sure I will get used to it in a few weeks. I know there is every chance my hair might fall out again in the future, so if it does happen then hopefully I’ll feel more prepared.

I’m looking forward sporting a new shorter summer hair style and eventually feeling more like my old self. It’s a lot of money but hopefully it’ll be worth it. 

 

Maintaining Mental Health

I’ve learnt a lot about the importance of exercise and it’s health benefits over the last few years. This has been most important in terms of my mental health.

I’ve dabbled at being a gym goer from time to time over the years, but it was only really about two and a half years ago, after my first bowel operation that I began going to yoga and pilates classes. Right now I am not really able to exercise in the same way I did 18 months ago, I feel much more fatigued on immunotherapy drug Pembrolizumab than I did when I was taking oral drug Vemurafenib. This is largely due to the frequency of the three week treatment cycles. I often feel too tired and lack the energy to exert myself, however I know that maintaining a good but gentle exercise routine will have huge benefits on my mental state and health as I move forward. In one of my previous posts, What Having Cancer Has Taught Me I wrote about the need to be kind to my body and not expect so much in the weeks post infusion.

Allowing myself to do some gentle exercise such as yoga, or go for a pre-work 5k jog along the Regent’s Canal gives me a short break from thinking about illness, and shows me that my body is capable of fighting back. Doing this is a great form of escapism, I’m trying so hard to concentrate of my breathing I don’t have time to think about anything else! I don’t ever finish an gym session or short jog and wish I hadn’t done it, it is common knowledge that exercise releases endorphins, so it makes me feel good that I am challenging myself.

I’ve been involved with young adult cancer charity Trekstock since Autumn last year. It is through this charity that I took part in RENEW,  a free 12 week exercise programme for young adults affected by cancer. Taking part in this gave me the opportunity to work with a top-level personal trainer and develop a tailor made exercise plan I could easily follow. Over the course of the 12 weeks I received complimentary gym membership to YMCA Club on Tottenham Court Road, and had frequent sessions with a wonderful trainer called Victoria. I decided to start the programme as I had been going to the gym regularly until my most recent bowel operation in May 2016. I had even taken part in a half marathon, but once I’d had the operation felt it I no longer had the motivation to exercise. After all, I’d be exercising for almost two years and I’d still become really unwell again, I felt deflated and wondered why I bothered in the first place. What was the point? It’s wasn’t going to cure me.

Taking part in this programme has taught me how to work with my body, not against it. I know I can’t push it too hard, but I don’t always have to be breaking out in a sweat to make a difference. Mentally it has really helped me to keep a positive outlook. RENEW gave me the confidence to start exercising again, and I’ve since ran a 10k for Cancer Research UK. Being part of the programme was instrumental in my decision to take part in the run and have a new goal to aim for. I am pleased to say I am now back into a semi-regular gym and yoga class routine, often attending a great yoga studio East of Eden in East London. The key to this is that I don’t beat myself up if I don’t have time to go for a few days, its simply not worth it. My body needs rest as sleep as much as it does exercise. The 6am wake up calls just aren’t worth It when I crave sleep.

Even though the routine is often slightly sporadic, keeping up exercise is very important to me, it allows me to have some control over how I feel, and being part of the Trekstock programme has definitely made me feel motivated. For me, It’s not about aesthetic goals at all, I read a quote on Instagram recently that said ‘Don’t miss out on 95% or your life just to weigh 5% less’, I couldn’t agree more. The important part is feeling good within myself.

Cancer has knocked my confidence a thousand times over, especially loosing my hair and my skin becoming overly sensitive. There was a time when this first started happening that I was constantly plagued by thoughts that people around me were looking at me, and they could tell I was unwell. It’s amazing how much a little exercise can help mental wellbeing and motivate me.

Having cancer is mentally draining to say the least, and the frequency of doctors appointments and hospital visits often add to my anxiety. However, I look at life with a ‘glass half full’ attitude, and the programme has really helped me continue this. I know a lot of people who aren’t so positive, which I do find frustrating at times. I could do nothing and laze around all day, and that’s fine occasionally, but it won’t be any good in the long term. I need to focus on the future and expect that I will be on this earth for a long time to come. If not then where does that leave me? I’ll only be negative and undoubtedly feel much worse. I’d encourage everyone to take on the ‘glass half ful attitude’, focus on the good in life rather than dwelling on what is missing.

 

Hair Envy

Lately I’ve been experiencing a lot of hair envy. I’m not often one to be influenced by social media or celebrities in magazines, but right now want hair like the women in every shampoo advert on television. I know that they are unrelasitic, but I’ve never wanted long volumous hair as much as I do currently.

I started to loose my hair around November 2015 when I first starting taking Vemurafenib, and since July 2015 I’ve worn a wig on an almost daily basis.

The most upsetting thing about loosing my hair was that I wasn’t mentally prepared for it to happen and I feel as though I will be emotionally scarred by the experience forever more. I was told at the time of starting chemotherapy that hair loss from my particular treatment wasn’t so common, so I guess it didn’t sink in. According to the Cancer Research website hair loss occurs in just under four out of ten people (40%). taking oral drug Vemurafenib. Of course, knowing my pattern of bad luck over the years I should have known I would be one of those unlucky few.

Losing my eyebrows and my hair felt like I was loosing control of my situation, I went from looking healthy to very unwell in just a few short weeks. Suddenly I lost my confidence and my femininity. I could hide the scars from previous operations, and even managed to get eyebrow tattoos, but I couldn’t cover up my hair loss so easily. It felt like as much as I tried to ignore it, the seriousness of my situation was hitting home. As I began to look increasingly unwell I found it very stressful trying to  act as thought it wasn’t an issue. I’ve never been good at doing my own hair, I can’t even do a plait successfully,  but this was a whole other ball game altogether.

At the start, my hair started to thin and fall out, particularly from the temple area. After a couple of moths of taking Vemurafenib it then began taking on an afro texture. I tried straightening the roots, but this was only a short lived fix. I even thought about trying to crimp it, but I’m pretty sure nobody has used a hair crimper since 1998.

After a few tearful weeks of dramatic hair changes I went with my mum to the hairdressers to have my hair cut short, I thought it  was wise to try and make the best of a bad situation and be in control as much as possible. The first time I went I burst into tears and the hairdressers decided it probabaly wasn’t the right time for me, so we went back a second time for the chop. Eventually my friends shaved it even shorter. Although I didn’t like the way it looked, it was as thought a weight had been lifted off my shoulders, I no longer had to pull my hair out of the plug hole when I had a shower, or wear a thick headband to hide the afro roots.

I had a few important engagements coming up in summer 2015, including being a bridesmaid for one of my best friends. After discussions with my Macmillan nurse I decided that a wig would be the way to go. I picked two; a long brunette one which I now wear regularly, and a short blonde one. I’ve never got into wearing the blonde wig, it seemed like a good idea and the time, but I decided to stick with wearing one as I didn’t want it to be obvious to people it wasn’t my own hair. There might be a point in the future where I change treatments and I could loose my hair again, so I’m saving the blonde one just in case. For a rainy day so to speak. I guess I could use it for a future fancy dress party but I really dislike fancy dress, my ideas always look better in my head than in reality.

I’m delighted to say that after having worn my brunette wig for almost 18 months my hair is growing back thick and fast due to a switch in treatment. Hair lost is not a side effect of IV drug Pembrozilumab, which I have been taking since July 2016. I’m now due my eighth cycle at my next hospital visit and the texture of my hair has changed completely and I have a short thick pixie hair style forming, its like 2010 all over again!

Although my short hair now looks much better than before I’m still self-conscious about it, but the longer it gets the more confident I’m growing. I was so upset about having to get a wig initially, however now I don’t want to be without it, which is ironic.  I’m happy to go without my wig outside of work, and am hoping to debut my updated look in the new year, but I’m so desperate to have my long curly hair back that I am hesitant to stop wearing my wig until I have long L’Oréal style locks.

My initial idea was to debut my new do on my 30th birthday in May 2017, but I am not sure I can wait that long. Wigs are also very hot, and with new hair growning I feel like I am constantly wearing a hat, so I will see how my hair keeps growing before making any decisions. It would mean so much to me to be able to tie it back, I get tearful just thinking about it.

I need to have a passport photo taken soon so I think I will go without my wig as I don’t want to be looking back at a photo of my wearing it for the next ten years. Hopefully I’ll be looking back and thinking about how far I’ve come.

Hopefully my hair will be envy of others very soon.