Standard Treatment….Cisplatin Diary (it’s wordy!)

First day of radio and first week of new chemo brings all the firsts-nervousness again so hoping this post can help all the me’s out there about to face the same day….you know you will be fine but it’s all in the not knowing. We know to take each step as it comes but today it seems there’s more steps to take. Here goes:

I got a dummy run of the radiotherapy on the friday before. The rotation of that big linear accelerator machine, the lasers to line you up and then some noises and it’s all over, next time it’ll be firing out some photons. Just some radiation. Normal right?!

So Monday – pre-assessment bloods & chat with doctor. I am instructed to not get out of bed until 11am since radio is at 430 everyday and literally just chill, rest & relax for the next 6 weeks (…I’ve already lined up a spectacular video list of Woody Allen movies and comedy by Jim Gaffigan and Louis CK). This new set of treatment is heavier and as there is two sets of things going on, chemo & radio, my body will need the rest. I am also told that I will need exercise to boost a little energy – we are talking 20-30 min walking.

Also got some books lined up and even an Origami How To book too. I also walk my neighbours’ dog. My neighbour got a dog, her first ever dog!, in her 70s for some company. It was the most hyper little thing when we first started walking him and has since calmed to her liking. That dog has been more of a lifeline to me than I to him. He had escaped one day and bounding into my garden trying to jump on my head and well, that was that. I take him to the nearby park and there are public hydraulic exercise machines – plenty resistance for my much lower energy levels. Ok, so here goes, the review of chemo days….

First day of Cisplatin

Cannulated after 5 attempts. Boo hoo, cries I. The process isn’t emotional it’s just the frustration of not being able to get it in. My new Maybelline mascara stays intact, I’m impressed. It’s in and it’s 2 hours saline, 2 hours Cisplatin and another 2 hours saline. The Cisplatin is damaging to your kidneys so also drinking water also helps. I also get my radiotherapy too so I walk down with my ‘dancing partner’ as some call it, and while I’m on the radiation tray bed I’m still hooked into saline. Its much quicker after the initial radiation, so 15 mins I’m back to my private room in the ward.

Towards the end of the saline, nausea and tiredness set in. Wow. I can barely keep my head from the pillow whilst also being aware the floor might be covered in vomit in any second. Nothing comes up and its time to leave. My face is swollen as is my hand. My mum comes to drive home and it’s chocka with rush hour traffic and Im sitting in the passengers seat with a sick bag just incase. I crawl into bed and try to sleep it all off. God I feel like crap.

The following day I am just pretty weak and tired – DUVET DAY! Up to hospital for radio then back again to bed. The rest of the week I’m just pacing myself, walking the dog. Of anything to note, the shakes I got was weird. My hands mainly and then one day I just felt all jittery. I didn’t call it in or anything, just stayed in bed that day and later on my next doctors pre-assessment, found out that it may be the anti-sickness drugs were too high so that’s been reduced for this second week.

Cisplatin No. 2

OK so the dread of the cannulation is there so the Doctor prescribes a relaxing pill to help my nerves if that’s what was getting in the way of being cannulated. It wasn’t and another 5 attempts until it was in place for my chemo that day. And still the emotions coming. The reflexologist from Macmillan pays me a welcome visit that day. Ah just nice to have a chat with a new face and smelling all those lavender and citrus orange oils.

The previous weeks’ nausea appeared again at the same time only the nurses were keen to give me something and told me to sleep on and stay overnight if I wished. That meant needle to the stomach and as when I woke up from its sleeping effect my nausea was gone. Wow, what a difference. Slept until 6am next day when I got home and relatively awake that day.

The doctor had also given me anti-sickness pills to help me sleep at nights (between sweating and needing to pee I average 2 hour sleep increments). However the pills, only meant to last up to 12hrs, gives me a hangover effect the entire next day and I’m dead emotionally so I try it two nights in a row then give them up.

Trip to Dublin this weekend and having only two things planned: adult only leprechaun tour and visit to Butlers chocolates cafe. I wouldn’t class it as fatigue but lack of energy which will catapult you feeling like an elderly person who requires lots of sitting and short increments of ‘go’ sometimes even talking cant make can take my breath away.

Here’s how it goes; Walk to the park across the road of the hotel. Sit down. Look at Oscar Wilde and his quotes. Walk to St Stephens Green for breakfast. Sit down. Walk into St Stephens Green. Sit down (for ages!). Walk along Grafton Street. Sit down (Butlers chocolate cafe!). Walk back to hotel. Fall asleep. It’s 3pm. That’s me for the night. Order food to hotel room.

Cisplatin No. 3

Ok this will make me just over half way on this treatment and 3/4 done of treatment overall…..looking forward to tomorrow, not so much for today. I have had an enormous craving all week for meat, red red meat! I find out in my bloods I have a much stronger level of haemoglobin levels (red blood cells) which was a fantastic thing. Well done cravings!

Ok but the cannulation thing again. Relax pill swallowed but I don’t really feel it’s affect. It’s only 5mg. Anyways, 6 attempts with the cannula then someone else to called…they put it straight into the ‘risky’ vein. Its the vein inner elbow – medical term insert here!! – risky because if the chemo leaks it could damage some nerves close by as opposed to muscle tissue if its in my forearm. But promise I do to keep it straight, the chemo goes forth. They are ready with anti-sickness drugs and due to the bank holiday, the entire day starts at 9am and finishes at 1am. I sleep next day til 10am and it’s duvet day as normal but the rest of the week I am alert and energetic…then I catch a cough.

Cisplatin No. 4

The cough raised a red flag for the doctor who insisted calls off chemo. I am given antibiotics and sent home.

I come back three days later and still got a cough so Chemo No. 4 didn’t happen. They don’t delay the chemo any further, they just skip it. So only one more chemo to go…on Monday. The week of the Brachytherapy. So fingers crossed (even though I hate chemo days but I know I need them) I have different antibiotics and am given three white blood cell injections for over the weekend – totally don’t have the head space to give them to myself so district nurse is in place! Am so fed up with needles I even start to shake when I get one, even if I don’t feel it! But here’s the thing – if I’m not ok by Monday, and I’ve got the internal radiation to do on Thursday, then I skip that as well. They don’t like to do these two things so close together. Which would mean from my original 6 planned chemo cycles, I would go down to only 3. The doctor tried to explain it to me but I don’t understand yet. The chemo is to make the radiation more effective they said and the main thing is the internal, Brachytherapy.

Here is when the Brachytherapy happens – details on a different post – but the doctor tells me she wants to give me that chemo that I had missed and so it is scheduled for after the Brachytherapy and radiation is finished. I am going out on a bang for sure because the Cisplatin chemo is the hardest thing out of the three types of treatment.

Cisplatin No. 5

OMG this IS the last one. For sure this time. I begrudgingly attend the Cancer Centre and wait to get my bloods done and chat with the doctor. Since my third Brachytherapy – which entailed having a catheter fitted each time – I am still trying to remember how I pee. It’s like you have to coach your body to get peeing again. It’s bizarre. It’s a little painful and takes ages. And generally my bowels have had a beating with all the radiation – external and internal – and so the nurses are concerned I might be retaining and so the doctor sends me for a X-Ray and everything is fine. Although I am given pills for constipation later on that day my bowels reverse and I now need pills for diarrhoea….however much I love pain relief medication, I just want my body to sort this out by itself. So I don’t take the pills and a week on everything is normal again. Yay! OMG how grateful you can be when the simplest of things, like going to the loo, is taken away and you get it back again.

They are all aware of my cannula problems and so a head nurse puts it into that risky vein. I warn her I might cry for no apparent reason other that there is a freaking needle in my arm but they get concerned every time and offer me diazepam. I’m not into it, I dry my eyes, calm myself down and watch TV while the drugs get pumped through my body.

My poor body. I generally am sorry for it. It’s upsetting that you agree to have chemo drugs administered to it and yet you know or are aware that chemo is killing the cancer cells. One line is screamed in your head ‘This chemo is killing me.’ And it is. It is killing all my cells. I apologise to my veins and go back to watching Location, Location, Location. Phil and Kirsty can distract me for a little while.

As on cue, one hour before it’s all done, as has happened with all the Cisplatin chemo days, I start to get nauseated. I call the nurses to have anti-sickness injected into my stomach area and half hour later, I get another one. It’s pretty full on this time and I throw up over 6 times. Blood is even coming up and I call for the nurse, who calls the doctor who asks if I had been eating mints that day. “Yes, pretty much all types of mints and all throughout the day.” And so the blood doesn’t faze her and my sickness becomes tiredness and I am invited to stay the night over. My fiancee stays over with me on a fold out bed which is great as he is able to bring me water, help me out of bed and generally be totally awesome.

The next day I get to leave after breakfast. I don’t have any more sickness just exhausted. I walk out of the Cancer Centre and raise my hands in the air. It’s over.


Chemo Day One

Feels much more daunting that it actually is. You arrive, get bloods taken, weight measured, have a chat with your consultant to check everything is ok then there is a period of a few hours that I was able to leave for lunch and come back in time for chemo.

You are given a chair in a room of another five. It wasn’t overly busy and the nurses prepare you for intravenous cannula. They tried seven times with four different nurses. It was because I was just so dam nervous and after I asked my fiancee to go for a little walk and cleared my mind and went to a ‘happy place’ as such, a nurse who I had previously had spoken to before was successful in her first attempt. I bring that down to less distractions and feeling at ease with this nurse. Phew. They only normally try 6 times but they saw I wasn’t getting too emotional and was ok to continue.
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An appointment for a PICC line was put in place. This in effect would stop the need to have any more needles from the blood tests every week to having the actual chemo. Great I thought. That’s next week. Basically a PICC line is a thin line that is threaded through your vein from you arm to your heart. It would be there for the duration of my treatments.

They give you three different anti-sickness drugs through your cannula. These consist of stomach lining, steroids and another one which made me nice and drowsy. Then the Taxol for one hour, little saline flush and Carboplatin for half an hour finishing in another flush of the line, removal of the cannula and head home.

I slept from 8pm right through to the morning. And took my pills as instructed for the next two days. On the third day I noticed my heart was quite irregular at night time and I phoned into their 24hr Oncology team to report it. They discussed it with the doctor and by the time they called me back it had ceased. A follow up call the next morning was arranged and everything was fine. I then had some stomach cramps and muscle pain but nothing too life halting. The muscle pain is strange though – your skin is so tender and daren’t anyone touch you because it’s sore. Get that bra off and get into your comfies I say!

That weekend, not knowing how the chemo would affect me as time went on, I had arranged with a friend of mine to have my hair cut and for him to photograph the process. I flew to Leeds with my fiancee and my two brothers travelled to the studio to help out. They brought champagne and with a hair stylist we got to work at photographing my luscious curls, plaiting my hair in preparation for donation to Little Princess Trust (wigs for children with cancer, boys and girls) and then I saw what I will look like with a pixie cut, a mohawk and then the shaved head. Gosh I was so nervous, even thinking I may not go through with it and just take each stage at it came. But with the support and the champagne bubbles I just went for it. That’s what I had come to do, the photographs were looking great and I would eventually be doing it anyways so why not now.


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Thank you to Steve Robertson, Amy Sontae and to my fiancee Ryan and brothers Lee and Robin. Could not have done this without you. The photo shoot and the hair styling distracted from the reasons of why I was doing this to just doing it and having fun with it. And I like my new look. I’d never have had the guts to shave all my hair off and now I know what I look like. Cool hair cuts are on the menu for me. Who knows if I’ll go back to the long hair….I actually lost 4lbs with losing it!


Chemotherapy

What is it?

A drug that works through your blood to ‘treat’ cancer. Where surgery and radiation are local treatments targeting only where the tumour is, chemotherapy attacks cells, all cells (cancerous and normal), throughout the body. This helps if it has spread (Metastases).

All cells divide and grow. Normal cells know when to stop dividing and growing when they come into contact with similar cells. Cancer cells do not have this turn off switch thus keep multiplying and building up as a tumour.

Chemo or ‘Chemical Treatment’ or ‘Treatment with Cell Killing’ halts the division process. This causes the tumour to shrink or become tumorcidal (cell suicide). There are cell-cycle specific chemo drugs (for when cells are dividing) and cell-cycle non-specific (for attacking the cells when they rest) But mainly the cell-cycle specific drugs are the chemo drugs we use most often. These affect cells that divide and grow quite often – other cells of this nature include stomach and bowel cells for example, as they regrow in order reline the stomach when digesting. Hair and nail cells are also constantly growing, skin cells too as they replace new skin all the time and bone marrow, which produces your blood cells. So these are also affected by chemo drugs. And, as you can imagine, I may notice changes to these more frequent areas with side effects. So far chemo is unable to decipher between cancer and normal cells. The good thing is that the normal cells grow back only.

History of Chemo drugs

So, Chemotherapy was discovered during the use of chemical warfare in World War 2, in the use of Mustard Gas. One part of the gas, Nitrogen Mustard, in particular. When a group of soldiers were exposed to the mustard gas, upon inspection of doctors, they found that their white blood cell counts were low and that it had affected their bone marrow and lymph nodes. From this discovery doctors explored using this agent and thought it may help fight diseases like lymphoma and cancers. They tested it on animals and found that it worked. It wasn’t until 1946 (after the war and secrecy of these gas programs, that findings were published). Then in 1955, interest was big to discover more chemicals against cancer which then lead to a national screening program.

However, at this time Nitrogen Mustard effects did not last long. They began using various drugs to combat Childhood Leukaemia and Hodgkin’s disease. There was a 50% remission rate, which lasted longer. Around 1970 people began to now believe cancer was curable which was a force to bring to bear, as scientists believed there was a possibility of finding a cure so then were granted time and money and approval to focus their work, and it research progressed.

What Chemo drugs am I receiving?

There are hundreds of different chemo drugs. My standard treatment will use Cisplatin – the most common. The clinical trial, Interlace, will provide me with Carboplatin & Paclitaxel (Carbo/Taxol) or PC. All three of these chemo drugs are listed on the World Health Organisation List of Essential Medicines.

Carbo/Taxol is normally given every three weeks over 5/6 months when sometimes administered for Breast Cancer. In my instance in this trial, I will be having this first, but every week, and for 6 weeks. Thus, the dosage is one third of its normal amount given and this amount is also based on my body mass to see how much my body can handle. They give you the max amount and can be adjusted, incase I can’t cope for example. Little bit of experimentation along the way sure, why not!

Paclitaxel, aka Taxol, is made from pine needles from the Yew Tree. Well, it used to be. The demand for the drug at its discovery was higher than the ability to harvest the trees so Robert A Holton, a professor of Florida University, began synthesising the drug. It was discovered in 1962 during the time when the National Cancer Institute had put on a screening program to collect samples of a 1000 plant species per year.

A man, by the name of Arthur S Barclay, had collected bark during this screening program, from the Pacific Yew Tree and when processed by subcontractors, they found it was cytotoxic (Cancer cell killing). It was developed commercially by Bristol-Myers Squibb (BMS) with some controversies along the way. A lot of controversies actually. Financial ones at that.

In 1978, mice, with leukaemia, were the first to benefit from its effects. In 1979 Susan B. Howitz published that Taxol had the ability to stabilise microtubules (these microtubules undergo continual assembly and disassembly of cells. They determine the shape of cells in a variety of movements, the intracellular transport of organelles, and the separation of chromosomes during mitosis – yes you are thinking, ‘basically’) Paciltaxel works by stopping the doubling of cancer cells. In 1982, trials for humans began.

After Phase 2 of these trials, ecological concerns were voiced, even though they had been having remarkable responses in ovarian cancer patients. About 360,000 trees were needed each year to provide enough bark for the drug to be made. This sparked the need to reach out for help, financial help, in order to further clinical trials and handle the isolation of taxol. This received a lot of fleck as one company bought exclusive marketing rights of the life saving therapy drug. They went on to make over $1billion dollars of profit from Taxol, using Robert A Holton’s synthesising methods. He got rich, Florida State University got rich and so did Bristol-Myers Squibb. The cost of Taxol? – if you had four cycles of treatment with Taxol, it would cost the NHS £4000 ($6000).

Carboplatin & Cisplatin

These are cell-cycle non-specific drugs meaning it attacks during the rest phase of cell division. They are platinum based drugs, discovered in the ’80s. Carboplatin was made after Cisplatin (parent drug) and has fewer side effects.

Cisplatin was discovered by accident. A researcher, named Barnett Rosenberg, wanted to explore the effects of an electric field on the growth of bacteria. When the bacteria stopped dividing once it was placed in an electric field, he found that it was because of the electric field of the platinum electrode rather that the field generated itself. Thus cell division in this way was explored further in rats – alas, successful results gained approval for human use and in 1978 in US, 1979 in UK, Cisplatin was used to treat ovarian and testicular cancer.

When the compound enters a cancer cell it becomes positively charged when water molecules replaces its chloride ions (further research is looking at how to manage the amount of chloride we have in order to boost a maximum effect). This charge attacks the DNA charge, creating cross links in DNA making it hard for the cell to duplicate that DNA section, thus dying.

There is, unfortunately, resistance to Cisplatin that can occur. In situations where this is the case, Paciltaxel (Taxol) is used to boost its effect – reasons are unknown why this works so far but discovering this during my research makes me glad I opted for the Interlace trial! (Cisplatin is administered as the Standard Treatment, Taxol as part of the Trial I was fortunate to take part in). Also various studies and meetings are held across the globe that discuss aspects of the drugs uses; in San Diego they are discussing the possibility of predicting the resistance of cancer cells to Cisplatin by measuring DNA damage. In Scotland and Australia, they are discussing the possibility of using external magnets to draw the platinum-based Cisplatin to the targeted tumour. In MIT, a professor is restructuring the platinum compound and his research indicates a 4-40 times higher potency to cisplatin so far. Isn’t this so interesting! I loved knowing so many really intelligent people were working all round the world, trying to make it all better.

I’m basically throwing three DNA suicide bombs on the tumour, not just one. Sometimes DNA repair pathways become resistant to a particular chemo drug and due to ongoing research, we are still unable to accurately predict how one person will be affected by any particular chemotherapy, if the tumour becomes resistant and if it grows back. There are many unknown elements that may happen and yet there is still an outstanding amount of success to the treatment of cancer.

Now for the ‘fun’ bit of this post…..random side effects.

Along with the predicted side effects (feeling crappy, hair loss, fatigue, etc) I found some side effects that were offered an amusing surprise. I’ve not decided if I am alarmed or just plain old, amused:

Loss of hearing
Loss of taste
Electric shock when bending your neck
Loss of colour vision
Hiccups. Yes, hiccups.
Increased risk of developing cancer. Yes, you can re-read that again. Crazy.
Yellow eyes and skin – what is the solution for this. Must ask Vogue.
Burning hands and feet – So, jandles in winter?
No urine output – if over 12 hours this is a serious emergency I’d suspect!!

Got Cancer? Here’s some booklets to read

So I was diagnosed, then scanned to see how far the cancer had extended and now the planning for treatment begins and there is a wait of about two weeks.

You are given about 6 different booklets: Understanding Cervical Cancer, The Cancer Guide, Understanding Radiotherapy, Radiotherapy – Your Questions Answered, Understanding Chemotherapy. And then you can get more. I chose: Travel & Cancer and Cancer & Exercise. These are made by Macmillan Cancer Support and HSC (Hospital & Social Care trust).

Granted, most people I have spoken to didn’t want to know anything about their diagnosis nor treatment and are happy to follow the doctors orders – so look away now if this is you, however if, like me, you have an Alice in Wonderland approach in life, that only find things like this ‘curiouser and curiouser’ then we must try to understand everything in order to keep our sanity and give us a sense of control.

So here goes…..this isn’t exhaustive but all of these things relate to me:

Understanding Cervical Cancer

  • Cancer is the disease of cells
  • The disease causes cells to develop into a lump/tumour
  • A malignant (cancerous) tumour may spread to nearby tissue
  • It may also travel through your body via your bloodstream or lymphatic system
  • Lymphatic system (part of immune system) includes lymph nodes
  • These lymph nodes are connected via ducts (tubes)
  • Lymph nodes are all over the body – pelvis, abdomen, armpit, neck etc
  • Cancer of the cervix is usually the result of HPV from sexual activities
  • Condom or no condom does not determine being infected
  • HPV may lay dormant and pass through your body or may turn cancerous
  • Girls are now vaccinated against HPV (hooray!)
  • There are various stages of cancer 1A-4B
  • I am 2b meaning it spread to nearby tissues and lymph nodes in pelvis area
  • They call this Locally Advanced Cervical Cancer
  • Treatment for this is Chemoradiation (chemotherapy and radiation combined)
  • My para-aortic lymph node/glands might also be infected and will be surgically removed to check under microscope
  • The team deciding your treatment consists of; a Gynae, a Clinical & Medical Oncologist (someone who deals with tumours medically) and a Specialist Nurse
  • There are lots of side affects to Chemoradiation, it may even give you cancer
  • Radiotherapy uses high energy x-rays to kill cancer cells
  • This can be external, internal or both
  • External radiation uses small tattoos (permanent) to align an area of concentration
  • Radiation is given Mon-Fri, with rest at weekends, and lasts 10-15 mins each time
  • Radiation does not make you radioactive and you will not be harmful to pregnant women or young children
  • Internal radiation is given afterwards and you will have this inserted into you
  • The applicators are inserted under sedation or general anaesthesia
  • It will be uncomfortable
  • Chemotherapy uses anti-cancer drugs to destroy (cancer) cells
  • There are various types of chemo drugs with different functions
  • The most common is called Cisplatin
  • This is platinum based drug and will be used in my standard treatment
  • It is injected into you and flushed out of you within one day per week (sessions could last 8 hours)
  • During treatment your bloods are taken each week to see how your body is coping
  • After treatment you are checked every 3 months for 6 months (if in a trial)
  • Then every 6 months for the next year and a half (as normal)
Alongside all of this treatment, the six weeks of chemoradiation, I was approached about the clinical trials, Interlace.
  
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