Posts Tagged ‘GCSF’

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.

I’ve really struggled with writing this post. Not because I don’t have anything to say, but because I find it easier to write when I feel like crap. The emotionally charged, my world is ending, high-octane drama just pours out. When nothing is happening it’s much harder to come up with something newsworthy.

I realise I’ve been slacking so decided it was time to put pen to paper again. I’ve also realised that I miss writing. Apart from keeping family and friends in the loop, it’s very cathartic. It keeps me sane.

I had my third cycle of chemo last Friday and after a couple of days grace the nausea & fatigue have hit with full effect. I can’t decide if it’s getting worse or if of my brain conveniently erases all previous chemo memories. I really hope it’s the latter.

I talk about chemo assuming that you all know what it involves but I’m guessing most of you aren’t personally acquainted.

It goes like this. I sit in hospital once every 3 weeks for around 1.5 hours while I have 3 drugs, the FEC combo, pumped into me intravenously. I don’t feel much at the time although one drug makes your pee red and another gives you a nasty ice-cream headache. If a nurse is on hand, she’ll water it down with saline to soften the blow.

The nurses in the oncology unit are lovely and always makes me feel like this whole cancer thing isn’t such a big deal. Cancer brings out the darkest humour in people and there have been some comedy gold moments in the oncology ward. One nurse in particular, Nurse P, is very funny:

On being asked if I would be happy to take my GCSF injection home to inject myself:

Me: “mmmm, no I can’t even look at the needle when you’re doing it”

Nurse P: “neither can I, I just close my eyes and hope for the best!”

After 1.5 hours, I’m sent away with a cocktail of drugs to ease the worst of the symptoms. I usually feel a bit groggy afterwards, but the worst side effects don’t usually kick in until 3 or 4 days afterwards.

I can’t think of any other way to describe it, other than feeling like you’ve been poisoned. Your body feels toxic, you have an unquenchable thirst, you feel sick, you lose your appetite and did I mention your hair falls out!? Then there are the stomach upsets, constipation and blinding headaches. I also had hideous mouth ulcers on the first cycle but these have lessened since getting the GCSF injection. Think the worst hangover and you’re half way there.

Fatigue is one of the biggies and physical exertion is a big no. I tried doing a wee hill with my mum a few days after my last chemo session and I felt like I was going to collapse, which was pretty scary but found out this was probably due to anaemia (not enough red blood cells). So, no mountains while I’m having chemo.

Chemo does weird things to your brain as well as your body. As well as the general ‘chemo makes you feel like shitto’, there’s chemo-brain and chemo-glow. The brain-fug is slightly disconcerting. A few examples: trying to make a phone call on my make-up compact and trying to withdraw cash from an ATM using my Boots Advantage card. My speech becomes a bit dyslexic and words get all mixed up which does have its comedy value.

Another weird and wonderful side effect of chemotherapy is that it makes your skin look great. The week after chemo I wake up looking all sun-kissed and healthy in a Scottish kind of way: the infamous chemo-glow. My skin has never looked better and my eczema has pretty much cleared up too. Every cloud.

The delightful side effects usually dissipate after around a week, when your body starts to repair the damage done. I make it sound horrific, and it’s not great but I did expect it to be a lot worse. Considering every cell in your body gets annihilated, it’s no wonder your body reacts in the way it does.

I joke about the physical side effects of chemotherapy & the mental cloudiness that accompanies it, however I am anxious about my treatment and my prognosis. I’m half way through my chemotherapy but at this stage they can’t even tell me if it’s working and this won’t be confirmed until I’ve had another MRI scan in a month’s time. If it’s not working they will bring my surgery forward. It’s on my mind 24-7.

On the upside I got my new hair last week. I was really losing hope with wigs until I tried on Stevie (all the wigs have stupid celebrity names). She’s perfect, nearly the same colour as my hair and she looks pretty natural, at least I think so. It took my brother at least an hour to notice I had hair, even though he’d seen me bald the weekend before, so it must look pretty convincing. In other hair news, the tiny bit of baby hair remaining on my head is growing and my eyebrows, which I had threaded before starting chemotherapy, are still exactly the same shape. With any luck I may never have to get my eyebrows shaped ever again.

I’m now half way through chemotherapy and the end is in sight. Three down and only three to go.

 

Maggie’s

Posted: July 13, 2012 in The Big C
Tags: ,

Everything is slowly settling back to normal now. My head feels considerably lighter without all that hair and I’m nearly back to shiny, happy mostly positive Kath again. Losing my hair and being hospitalised was rather a lot to cope with in one weekend but I’m feeling loads better now. Who cares about hair anyway? Saying that, since the big shave I do seem to have developed a phantom ponytail. The ghost of ponytails past perhaps?

Wig shopping yesterday was a bit of a disaster. I tried on a few but they all looked either a bit too wiggy, really dated or made me feel like I was trying for a part in Scooby Doo. One really did look like a Thelma wig. We have a few other places to try so I haven’t completely ruled wigs out.  I actually quite like my crew-cut and love the feel of my suede-head although it’s thinning rapidly.

I spent today at the Maggie’s centre in Dundee which is a Scottish charity offering support to people with cancer. The Dundee centre is designed by Frank Gehry, so as far as community centres go it’s pretty cool. More Guggenheim than village hall. They offer loads of free classes, support groups and complementary therapies and it’s all free.

I met some really interesting people there. The first was Dee, a 76 year old transsexual with prostate cancer. Dee told me that for her, cancer was just another part of her life journey, an adventure. Dee was a truly inspiring lady. A shining example that you can and should do whatever the hell you want in life, even if it takes you 76 years to work it out.

Grayson Perry – Print for a Politician

I was the youngest there by far but everyone made me feel really welcome and it was great to meet people at all different stages, from newbies like me to people who have been in remission for years. Everyone had a story but the thing that stood out more than anything was their positivity. If someone in their 70s can sail through treatment then it can’t be that bad. Some had admirably lived through cancer twice or more and still managed to stay positive.

I tried the Tai Chi & relaxation classes. The Tai Chi was good but the relaxation class didn’t really work for me. Everyone got cosy with blankets & half of them hit the deck and snored their way through. I think I’ll stick  to my peaceful, conscious meditation for now.

I’m all set for chemotherapy round two tomorrow. Apparently my bloods are back to normal and they’re giving me an immune boosting GCSF shot which should prevent me being hospitalised again. It might have happened anyway but I was told that the epic train journey & house move last weekend probably didn’t help my immune system. Suffice to say I shan’t be leaving the PH postcode for the next 3 months.

This weekend I’m having a joint birthday party with my 3-year-old niece Lottie so I’m really looking forward to that. I have a frock but I am having a hair or should I say head dilemma so I might have to resort to the old beanie until I get a wig sorted. Anyway bring on the party games – ‘Farmers in his den’ anyone?