Vita Blog: Chemotherapy and Neutropenia

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. 

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.

Vita Blog: Being patient: starting a clinical trial

My latest Vita post for Breast Cancer Care:

http://www.breastcancercare.org.uk/news/blog/being-patient-starting-clinical-trial

Since my last post, I’ve been a busy bee. I celebrated my second cancerversary on 1 June, I made it to my friend’s wedding on Colonsay as well as celebrating the first of many 40th birthdays.

All this fun has been a good distraction, as I’m still stuck in cancer limbo. I’ve had lots of hospital appointments but I’ve not yet started treatment. There was some deliberation over whether I should have surgery or chemotherapy first. I’ve also been offered the chance to take part in a drug trial, which I’ve since agreed to, and this has delayed things even further.

Trials

Agreeing to go on a trial is a completely personal choice and not the right option for everyone. However, I did my research and sought the opinions of friends and family before coming to a decision. I also spoke to others who have taken part in trials and thanks to the Younger Breast Cancer Network, I even managed to chat to a few women who’ve been on the same trial.

The trial I’m taking part in is double-blind, which means that neither I nor my healthcare team will know if I’m getting the trial drug or a placebo. In case you’re wondering whether I’m completely mad, I will still be having chemotherapy. The trial drug AZD5363 (or placebo) will be given in combination with paclitaxel, a drug I’m sure many of you are familiar with.

The trial regime involves weekly cycles of paclitaxel along with twice weekly doses of the trial drug. I’ve heard that paclitaxel is more manageable than other regimes (I previously had FEC) although I’m keeping an open mind. Potential side effects include diarrhoea, hair loss, peripheral neuropathy (numbness in fingers and toes), mouth ulcers, nausea and vomiting, aching joints and muscles, itchy rash, fatigue, and anaemia along with the risk of infections. The side effects of the trial drug are similar. I can’t wait.

There are risks and benefits of taking part in a trial. On a double-blind trial there’s a chance you might end up in the placebo group and there are risks involved in taking a drug which has only been tested on a limited number of people. However, you are really closely monitored. For the first week I’ll be in hospital nearly every day, having every bodily function sampled and analysed. I will also have scans every 12 weeks to determine whether the treatment has been effective. The continual monitoring is one of the main benefits of being on a trial, and one of the reasons why trial patients often do well, even when they’re in the placebo group.

Being patient

One of the main disadvantages of being on a trial is that it takes forever to get started, as blood samples and scans all have to be verified by the drug company. Waiting for treatment to begin is incredibly stressful and I’ve reached the point where I’m desperate to start. It’s horrible knowing that there are renegade cells floating around your body and nothing is being done about it.

Last week I finally had a date confirmed. If they delay it again, I’m parking myself in outpatients until they inject me with something toxic.

The most important thing to know about a trial is that you can opt out at any time. The drug company want results, but they don’t want to put people’s lives at risk. I’m not getting paid, although this treatment will potentially extend my life and the lives of many other women with breast cancer.

Cancer buddies

Although I’ve been off work since my last recurrence in October, cancer keeps me busy. Aside from all the hospital appointments, I have a hectic cancer social life. I love my non-cancer friends and I hope for their sake that they stay non-cancer friends.

However, I’ve gained a whole new group of cancer-buddies in the last two years. There are the women I met at the Maggie’s Centre; at support groups such as Moving Forward and the Macmillan Hope course; and through Breast Cancer Care’s Younger Women Together. More recently I’ve found online groups, such as the Younger Breast Cancer Network, a great way to chat to other young women with secondary breast cancer.

No one else can comprehend what it feels like or understand the emotions you go through unless they’ve been through it themselves. There are things I talk about with my cancer buddies that I would never talk about with immediate family and friends. Menopausal symptoms, infertility, living with the fear of recurrence and worries about dying are all subjects that your cancer buddies will understand, but that you might not feel able to discuss with your loved ones.

Cancer is a devastating disease but one thing it can’t take is your ability to laugh. I met some cancer buddies for coffee last week and during our catch-up, one of the girls delivered some bad news. Said friend was laughing as she gave us the news, so our reaction was to laugh along with her. A man, ear wigging on the table behind, looked appalled at our reaction. Perhaps he thought we should be sobbing into our green tea or that we didn’t look sad enough. I felt like walking up to his table to comfort and reassure him that ‘It will be OK.’

The future

Friends who’ve seen me since my recent diagnosis seem surprised that I look so well. I should have explained in my last post that although I have stage 4 breast cancer, the metastases on my lungs are very small and hopefully they will stay that way. I am fit and healthy and aside from a little fatigue, I have no symptoms.

People are also curious about my prognosis and this is a question I’ve been asked by the benefits office among others. I find this question really upsetting and the answer is that I don’t know. There may come a time when I do want to find out, but at the moment I’m viewing my disease as a chronic condition. It’s something that I’ll probably always have. However, I’m not going to let it take over my life. People can and do lead full and productive lives with stage 4 cancer. There’s life in me yet and I have no intention of leaving this planet anytime soon.

My perspective might completely change when I start chemotherapy next week and assume the role of patient once again. This means that there might be some chemo grumbles in my next post.

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