Posts Tagged ‘neutropenia’

This is a short post just to say a massive THANKYOU to everyone who contributed to my fundraiser. With off-line contributions from family and friends I now have enough money for ‘THE TEST’. There is a little piece of Kath stored in a lab somewhere, which will be sent to the lab in the next week or so.

I’ve recently started a new chemotherapy regime (Capecitabine) and this is making me feel pretty vile. My new best friend is the toilet, I have a mouth full of ulcers, blisters all over my feet and I was admitted to A & E on Monday with suspected neutropenic sepsis  (thankfully I didn’t).  Today is the final day of my first drug cycle (day 14) before a much needed week’s break.

One of the reasons my consultant put  me on this drug was because it’s not so hard on your white blood cells so there is less risk of neutropenia. I’ve escaped neutropenia, however the other side effects have been horrific. I’m on a really high dose so they should lower it for the next cycle.

One of the advantages of this drug is that I take it orally, so there are no horrible injections. This is easier in some ways but psychologically it’s really difficult taking a drug which you know is going to make you feel so ill, especially when there’s no guarantee that it will work. This is why the Tumour Profiling is so important. It will establish whether the Capecitabine is doing it’s job. If it’s not working, it will tell us what drugs are compatible.

Udderly Smooth

Udderly Smooth – great for cows and cancer patients

I don’t like feeling ill (does anyone?) and I really struggle when I’m not able to physically function. Walking is my meditation so it’s been especially hard this week not being able to go out for my daily stomp. According to my OT mate Sally, I’ve got Occupational Deprivation – I can’t do the things I normally do. I love how they have a label for everything, it makes my misery seem somehow more justifiable.

The schmaltzy ‘Think of 3 positive things for 7 days’, doing the rounds on Facebook, has been a real test for me this week. But even I have found things to be positive about. Discovering Udderly Smooth cream (for those on Capecitabine this is a lifesaver) was a big highlight of my week however the fundraiser really kept me buoyed up. It’s been quite life-affirming and nice to know that so many people care.

What started as a little campaign to pay for ‘The Test’, has now taken on a life of it’s own and I’m handing over the reigns to the ‘PROPer Naked Selfie’ team. My lovely Aussie sister-in-law came up with the idea of ‘PROPer Naked Selfies’. I’ve nearly reached my target and I’m looking a bit peaky for selfies, so I’ve asked that any donations from this new campaign go directly to Maggie’s.

For those of you not familiar with Maggie’s. This is a charity started in Scotland by Maggie Jencks. The first Maggie’s Caring Centre was opened in Edinburgh in 1996 and they now have branches all over Scotland as well as a few south of the border. Maggie’s Manchester is opening in 2016!

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My brother getting his kitchen utensils out for Maggie’s

The Maggie’s centres offer free practical, emotional and social support to anyone affected by cancer. I attended the Dundee centre where not only did I make lots of new friends, I did classes in Tai Chi & Yoga; joined a writing group; did practical courses on coping with cancer; and had countless free massages. More than anything they provide a warm safe space for people with cancer to relax, away from the harsh sterile environment of hospitals. A friend of mine described the Dundee centre as “a cuddle”.

I know the extroverts among you can’t wait to do a ‘PROPer Naked Selfie’ for Maggie’s. Just get your kit off, find a prop and take a selfie: Text ‘NKED50 £2’ to 70070 to donate £2 to Maggie’s OR donate here at JustGiving.

Tips of the week (for those on Capecitabine) to relieve symptoms of Hand and Foot syndrome: 

Udderly Smooth extra care cream – they do an Oncology range for Hand & Foot syndrome. £9 for a huge tub on Amazon

Vitamin B6 – 100mg a day is said to reduce severity of Hand & Foot

Omega 3 – I’ve been taking about 5000mg a day which I think has helped reduce the inflammation

Silk gloves – these let your skin breathe and are said to calm irritated skin

Not sure which one has been most effective but all a combination of all above definitely helped reduce the severity of my symptoms.

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My latest Vita post for Breast Cancer Care http://www.breastcancercare.org.uk/news/blog/chemotherapy-neutropenia

The only certainty when you’re living with a secondary cancer diagnosis is uncertainty. At every appointment I’ve had recently they’ve thrown me another curveball. The clinical trial I talked about in my last post is now yesterday’s news.

I was all psyched up to start treatment when the hospital called to tell me that I’m no longer eligible to take part. They had expected the metastases on my lungs to grow (they have to be over 1cm) and they haven’t. The tumours have remained stable between my first scan in May and my second scan in June. I was disappointed at being dropped from the trial, but ecstatic when they explained why.

After six weeks of delays, shifting goalposts and false starts, I finally started chemotherapy two weeks ago. I’m now on a weekly regime of paclitaxel and gemcitabine. The drug cycle I’m on is two weeks on, followed by one week off.

Lines and Ports

My first treatment was straightforward, if a little slow. The worst part was having a cannula inserted.

I don’t have a phobia of needles. However, I don’t particularly enjoy being stabbed in the arm. It really hurts and it’s something you never get used to.

If you’re having regular treatment or if you have poor veins, you might be offered a PICC line, central line or port. There are advantages and disadvantages to all of these.

I had a PICC line during my first round of chemotherapy and I found it really difficult to live with. The main disadvantages are: risk of infection, weekly trips to hospital to get it flushed, and restriction of sports and other daily activities.

I managed to do a yoga routine at home, although I had to adapt some postures to avoid pulling out the PICC line. My Warrior 2 looked more like ‘I’m a little teapot’. Having a long hot soak in the bath is also tricky, but I managed to adapt this by elevating my arm. Your arm can go numb, so it’s not very relaxing, but I refused to let it beat me.

On the other hand, having a line or port means that you don’t have to endure being constantly jabbed in the arm while they locate undamaged veins. This makes having blood taken or receiving drugs intravenously a much less painful experience. It also reduces the risk of ‘extravasation’ (when a specific type of drug leaks out of your veins) and damage to your veins.

Neutropenia

I felt OK for the first few days after chemo – the steroid high – but deteriorated towards the end of the week. By day five I had throat and urine infections and ended up at A&E. Scrabble is a great distraction from chemo

I went for my second treatment on day eight, only to find out that I’m neutropenic. This means that my second treatment has been delayed.

The chemo-veterans among you will no doubt be familiar with neutropenia. Chemotherapy lowers your body’s immunity, and neutropenia happens when your white blood cell (neutrophil) count is low or at zero. White blood cells are the body’s primary defence against bacteria and if you don’t have any, then you’re at much greater risk of infection.

I was hospitalised with a neutropenic infection during my first round of FEC chemotherapy two years ago. It was all very dramatic and I felt like ET the first time it happened. Fans of the film might remember the scene where ET and Elliot are quarantined. Thankfully the medical team don’t wear quarantine suits. However, you are isolated from other patients and they write ‘NEUTROPENIC’ in big letters outside your door. It’s quite frightening.

As a repeat offender, I wasn’t so scared the second time round. However, I’ve been taking it easy over the last week. I’ve had very little energy and I’m trying to avoid mixing with too many people. I’m still on antibiotics, so hopefully they will address any unwanted visitors.

If you are having chemotherapy and are worried that you might have a neutropenic infection, don’t be afraid to call your chemotherapy department. It can be really difficult to distinguish between the side effects of chemotherapy and a real infection. However, there are certain signs to look out for: feeling feverish or shivery; hot and cold sweats; sore throat; diarrhoea; breathlessness; redness around a wound; a temperature above 37.5C or below 36C. Don’t delay in calling your medical team if you feel unwell.

G-CSF

When I saw my consultant last week I assumed I would be offered G-CSF (granulocyte-colony stimulating factor).

G-CSF is a drug given to people whose white blood cell count is persistently low. It works by stimulating your bone marrow to produce white blood cells and reduces the length of time that they are low. It also helps to reduce some of the horrible side effects of chemotherapy. Receiving G-CSF injections during my treatment for primary cancer made chemotherapy much more bearable.

I thought that G-CSF was the standard treatment after a neutropenic episode, but my consultant wants to try a different approach this time. Instead of stimulating my immune system with G-CSF, he wants to try reducing my chemotherapy drugs, to see if my body can tolerate a smaller dose. He explained that using G-CSF is like putting your foot on the accelerator with the handbrake on. My immune system has already been battered by previous treatment, so it’s more beneficial to give me a dose of chemotherapy that my body can tolerate than to whack it into submission artificially. If I become neutropenic again, G-CSF might be an option.

G-CSF is an expensive drug and I wondered whether my consultant’s reluctance to prescribe it was influenced by financial constraints. However, his explanation does make sense. I’ve never been a passive patient and always question clinical decisions, but sometimes doctor does know best.

As I finish this post, my hair is beginning to moult. Being the ostrich that I am, I’m clinging to the hope that it might just thin. I know that hair loss is insignificant when weighed against your health, but it’s taken me 18 months to get my hair to a length that I’m happy with. It seems so unfair to lose it all over again.

Preparation baldness has commenced. My to-do list reads something like this: shave head when hair loss gets too messy; get my wig ‘Stevie’ restyled; go to Headstart or Headstrong and practice scarf wearing techniques; take photographic evidence of eyebrows for future reference.

There’s never a dull moment in cancer world.

You can read more from Katherine on her own blog killerkath.wordpress.com and also on Twitter @killerkath

Vita bloggers’ views are their own and do not necessarily represent those of Breast Cancer Care or Vita magazine.

‘Stay positive, be strong & be brave’ are the three mantra’s most commonly thrown at you when you are diagnosed with cancer. There is a common belief that healing is simply mind over matter however, there is no scientific evidence that positive thinking cures cancer or any other disease. Lots of people with a positive attitude survive cancer, however many don’t. Conversely many people with a negative attitude also survive. I’m not knocking it, it’s just really difficult trying to be positive ALL of the time. I’ve managed to stay surprisingly positive throughout this whole experience however I still have my bad days.

This week brought more medical high jinx, starting with an MRI scan on Wednesday. My hair started to molt that morning, so I sobbed my way through the scan. This was compounded by having Paulo bloody Nutini blasting into my ears for the duration. My choice, god knows why but the other options were dire. I briefly considered ‘My guitar gently weeps‘ but that would have finished me off.

I really hoped I might be the lucky one and escape what is one of the worst side effects of chemotherapy. I’d been religiously drinking my magic juice & having a good tug on my locks every morning to check it was working. The joker (Jane Plant) who invented this elixir claims that it not only stops hair loss, but that your hair will become even thicker & healthier than it was before. Well, she was wrong & I want my money back. My hair started to fall out less than two weeks after my first chemotherapy cycle.

Following hair-gate, I started to feel unwell later in the week. I’d been in town with a friend and a walk in the park, I’d normally find easy, completely exhausted me. I woke on Saturday feeling worse. I should have come out of my neutropenic (low immunity) phase by then, so the hospital asked me to come in as a precautionary measure.

My white blood cell count was at zero which meant I had no immunity. My body was also showing signs of infection so they decided to keep me in. As a result I spent the weekend attached to a drip, being pumped full of antibiotics amongst other delights. Potassium chloride was my tipple on Saturday night. I make it sound awful but it wasn’t so bad.  My neutropenic status meant I had my own room and I got to lie down for two whole days which, for someone as active as me, is a novelty: note, positive thinking in action.

Being attached to a drip is a new experience for me. Trying to sleep, move, wash, go to the toilet, eat, type or read is quite tricky, as any slight movement triggers an alarm. When I was well enough yesterday they let me out for a little stroll and I took great delight in perfecting doing the pyjama/drip look. The only thing missing was a cigarette but hey, there’s always a next time.

The nurses were my saviours this weekend: they looked after me; counselled me on all things hair related; buoyed me up and most of all they made me laugh. Humour is one of the few safety valves I can rely on at the moment & their silly banter really kept me going this weekend:

Me: “Can I have a peppermint tea please?”. Nurse: “We dinnae dae any o’ that herbal stuff but I can put a polo mint in some hot water for you if you like!!”

My hair obviously took a back seat this weekend and I’d stopped washing & brushing it to minimise the loss. It was falling out in clumps, so I bandaged it up last night and woke this morning to a big matted bundle not very securely attached to my head. Think dreads, tramp-do, bad comb over and you get the picture. I knew if I brushed it, it would all fall out, so this morning I asked one of the nurses to book me in at the hospital hairdresser and shave the lot off.

This animal was attached to my head

This animal was attached to my head

It wasn’t easy, but getting my hair cut was actually a welcome relief and I feel like a massive burden has been lifted. Unlike Samson, cutting my hair gave me back some strength. When your body is failing you, it feels good to take back some control. I joked about giving up on vanity in an earlier post, but when weighed against your health, hair loss is insignificant.

My hair was going to fall out anyway and raising money for charity helped ease some of the distress I was feeling. Now it’s done, and people are undoubtedly shocked at seeing me without all that hair but there’s not a lot I can do about that. Wig shopping is next on my ‘to do’ list.

This week has been pretty horrific. In less than a month I’ve gone from being a healthy, happy young woman to an invalid living with my parents. I wish there was a big magic button I could press to make this all go away but I have no choice but to go through with it. As my mate Sal so aptly put it: “Chemo is like a superhero disguised as a baddie”. It does pretty awful things to you but it makes you better in the end. Bizarrely I’m looking forward to surgery, it can’t be any worse than this.

I’m thankfully home now and due to have my next chemotherapy cycle on Friday. I need to feel 100% before my body is subjected to another chemical overload so there’s a possibility it might be delayed. They’ve assured me if I become neutropenic again they’ll give me something to boost my immunity. I’m secretly hoping they delay this one as it’s my birthday on Saturday and I’d like it to be chemical free.

I’ve now got my first chemo session under my belt and it wasn’t all that bad. My drug combination goes by the delightful acronym ‘FEC‘:  exactly what I was thinking when they strapped me in on Friday.

Worse was getting a Picc line (peripherally inserted central catheter) inserted the day before. Chemotherapy drugs knacker your veins, so I now have a catheter inserted into a vein in my my arm, which travels into a larger vein in my chest. It’s slightly disconcerting having a plastic tube & tap strapped to your arm 24/7 but I’ve got used to it now. The only rules are no golf, no tennis, no swimming and no baths. It wasn’t painful, just a very strange thing to get your head around. The tranquillisers came in very handy for this appointment.

After two hours of intravenous chemotherapy on Friday I feel surprisingly ok. I’m on steroids & anti-emetics to stop me feeling sick and they seem to be working so far. Aside from the nausea and a little tiredness, the only other major side effect has been my appetite which has all but disappeared. I’ve had some weird cravings for bananas and crisps although not at the same time.

I’m now on a juicing, cleansing mission cutting out all the bad stuff: no caffeine, no dairy, no wheat and no alcohol. The general feeling of queasiness means I haven’t wanted or craved any of the above.

I expect the worse side effects are yet to come. Between my 3 weekly cycles my immune system will crash, meaning I have minimal immunity. This means avoiding people & places where I might catch something. The slightest sniffle and I could be hospitalised. Scary stuff but I just have to be sensible and avoid people who are obviously germ laden.

I’ve also been told hair loss is inevitable. This came as a bit of a shock as Manchester had told me this could be prevented using the cold cap, however I’ve since found out, this isn’t an option. At this stage I’m willing to give anything a try, so I’m now making a super juice daily (Jane Plant), said to minimise hair loss. It’s a bizarre but rather tasty concoction of fennel, apple, carrot & ginger.  I’m not sure of the science but I know it’s something to do with folic acid.

The chemo scarf look really doesn’t appeal, so I’ve been stockpiling funky headwear & thanks to the Scottish government I also get a free wig. I hope the rest of my treatment is as straightforward as this but I have a feeling the worst is yet to come. Bring it on.