Posts Tagged ‘PICC line’

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.

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Thank FEC it’s over

Posted: October 5, 2012 in The Big C
Tags: , ,

Today I am celebrating. 127 days since my diagnosis and 105 days since starting chemotherapy I’ve had my sixth and final dose of the delightful FEC. I also had my trusty friend, the Picc line, whipped out today so I’ve got my left arm back too.

I bid an emotional farewell to the Oncology unit today. I won’t miss the weekly trips, the smell of the ward – that hospital smell makes me want to barf now –  and being surrounded by illness, however I’ll really miss the banter with the nurses and the psychological security-blanket they have provided me with over the last few months. They’re a truly lovely bunch.

The after effects of chemo mean my celebration is very low-key. More of a “thank f**k that’s over, get cosy on the couch and stretch my left arm as far as I want” kind of celebration, than going down the pub.

I’m happy. From today there’ll be no more one-armed baths or wooden-arm and soon I’ll be waving goodbye to nausea, fatigue, ice-cream headaches, brain-fog and chemo-glow. I’ve got my left arm back and in a few weeks time I should have some hair. My parents are treating me to a wee break and I’m hoping to squeeze in a Manchester catch up before my big op. It will be so good to feel normal again. Thank FEC this part is over.

The title for this post was something my friend Jenny said to me in a text & it pretty much sums up how I feel at the moment. Brian perfectly illustrates my current head-space in this clip from Spaced:

Brian and Art

Apparently I’m doing really well, at least so everyone keeps telling me.

Body

Physically I feel really good at the moment & I’m getting myself all geared up for chemo round 4 this Friday. I’m fasting today & like a marathon runner I’m hydrating before the event. I’m seriously contemplating wearing my Camelbak for the next week as I get so thirsty after chemotherapy that I need a constant supply of water. I’ve gone past caring what I look like, so a watering-hole attached to my derrière will only add to my ridiculous appearance.

A guy who works in the village shop asked if I was feeling okay when he noticed I was wearing a beanie on a sunny day. He was so nice I didn’t have the heart to say: “actually I’ve got cancer & I’m completely bald!” so I just said: ” yeah i’ve got a cold”. Nothing like cancer to stop a conversation.

I spent part of last weekend in Edinburgh catching up with friends and doing the festival thing. This was my first venture out into the big wide world since my diagnosis and I had a great time, although it was tainted. Does my wig look convincing and will people notice my PICC line? It was all just a bit too weird. I have many happy memories of going to the festival in my previous life so I found it difficult to relax.

On a lighter note, if you are going to the festival, I can totally recommend Nick Helm (mental, angry, hilarious but definitely don’t sit in the front row) and The Boy with Tape on his Face (silent but very clever & funny)!

Brain

Mentally I’m really struggling at the moment. The prospect of major surgery and uncertainty about whether the chemo is working have weighed on my mind for the last few weeks. The possibility that the chemotherapy might not be working didn’t concern me until the surgeon planted the seeds of doubt over a  month ago.

This might come as a shock to most of you, as it did to me, however chemotherapy doesn’t work for everyone. Everybody responds differently to the cocktail of drugs given during chemotherapy. If the FEC drug regime doesn’t work it’s likely they will bring my surgery forward. Changing to a different drug regime at this stage is too risky and will waste too much time.

I have to wait until next week, when I have another MRI scan, to confirm if the tumour is responding to the chemotherapy. I’m really worried because the lump in my breast doesn’t feel any smaller, so I have a meeting a with my consultant tomorrow to discuss some of my concerns.

image_1

There’s so much they don’t tell you when you’re first diagnosed with cancer. I realise now why they don’t. If they told you everything at once you’d probably just find the nearest bridge and jump. I have hormone receptive breast cancer and I’m pre-menopausal so there’s a 1 in 4 chance that my cancer will return. Not great odds.

This is the first time since my diagnosis that I’ve started to feel really angry. I just want my old life back: F**K CANCER by the way.

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.