Category Archives: Consultation

Clinical trial month twenty one

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Tuesday 1st September

An early start this morning to leave the house before 7am, as my first appointment at the hospital in Exeter is at 9:45am.

I am on month twenty-one of a clinical trial for the adjuvant treatment of malignant melanoma. A mole (the alien blob), on my left foot was removed in 2013, and the cancer was then found to have spread to the lymph nodes at the top of my leg.
Major surgery, a skin graft, a drain, cellulitis and lymphoedema followed.

I signed up for the Combi-Ad trial using drugs called Dabrafenib and Trametinib, beginning at the start of 2014. (In the first year I was traveling to the hospital every four weeks.) It is a five year study, and in year two I go to the hospital every three months for a dermatology check, blood and obs, a CT scan and an oncology consultation. Sometimes there are other check ups too.

My first stop today was with the consultant dermatologist. She checks me all over, carefully looking for any weird looking moles. None were found, thank goodness. But she did want to remove some seborrheic keratoses under my arms, using liquid nitrogen. It’s a very cold spray, that stings a little. She said these ‘things’, like warty moles, should go crusty, then manky, then fall off. How lovely.

I then had to go to another hospital for an appointment with my trials nurse, who took my blood pressure (pretty normal today), my temperature, pulse and weight. No bloods today for some reason.

I saw the oncologist for another full body check and a chat, then had a couple of hours to wait for the CT scan. We went and sat in the car, in the car park, to get away from the hospital germs ~ lots of people coughing and sneezing.

I had to wait awhile before they were ready for me in Medical Imaging, dressed in the ubiquitous hospital gown. Not a good look.
My vein was easily located and the radioactive contrast pumped in as I went through the machine. The procedure was over in ten minutes, and then we could begin our long drive home. I now have to wait a week for the results.
Scanxiety will ensue.
Melanoia will set in.
I will be anxious and perhaps a little paranoid, until I hear from my trials nurse about the results.
That’s what melanoma does to you.
Constantly vigilant.
Always hopeful.

It was after five o’clock when we stopped at the cemetery to visit you. The sun was casting long shadows, but it was still fairly warm. We told you all about the long, uneventful day, and how you probably would have been very bored. Or you might have gone off into the city with Dad to look at the shops, leaving me at the hospital. You liked Exeter, and used to enjoy browsing through the stores, feeling safe in an environment you knew quite well.

When we finally arrived home, I had a message from your brother’s girlfriend. Her mother had been taken into hospital, and has been diagnosed with cancer. (We’re not sure what type, or of the treatment.)
She is very upset, and will be flying back to Spain on Thursday to be with her mother.
We walked down to see her, as unfortunately your brother had to work tonight. We sat with her, talking and drinking tea. We then suggested a bit of fresh air, and had a walk along the harbour to see the high tide.
We left her making pizza for your brother for when he finishes work.
We said goodbye with lots of hugs and kisses and hopes.

Miss you sweetheart.
Love you so very much.
Beloved Angel son.
xxxx

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A meeting with the oncologist ~ finally

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Thursday 11th June

Finally we have been granted a meeting with our son’s oncologist to discuss his death. It’s been exactly thirteen weeks, or ninety one days since he passed away, (almost as long as his chemotherapy treatment). We spent about an hour and a half with the consultant. It was emotional, draining and most upsetting. I think I was looking for answers, for reasons, knowledge about what went so drastically wrong for our son.

But I didn’t really come away feeling any better. What had happened was extremely rare, unbelievable bad luck, a catastrophic disaster: without any preceding symptoms, no clues as to such a significant problem that would prove fatal.

Nothing was foreseen that could have prevented the outcome. Our son took his treatment in his stride, and he was told by all the medical staff how well he was doing, and how much his tumours had shrunk. He was getting well. We were all making plans for the future.

And now we’ve lost our future, without warning. It’s as if we had been lying to him all the time. He trusted us implicitly and went along with everything thrown at him.

Looking back, the oncologist said he would not have changed anything about the treatment that was delivered. Whether reducing the dosage, or stopping altogether. The various cytotoxins were doing their job in reducing the size of the tumours. Without any other symptoms, apart from the recognised sickness, tiredness and mouth ulcers, everything pointed to an eventual success. Nothing else could have been done, or done differently to save our son.

A gastric ulcer was the cause of death, quite possibly caused by high steroid treatment, along with the brutal chemotherapy regime. A massive upper gastrointestinal haemorrhage resulted in three pints of blood flooding the stomach, and causing cardiac arrhythmia. Had the ulcer been a few millimetres to the left or right of a blood vessel, that obviously erupted, then the outcome would have been so very different. That the end of life was most likely instantaneous and pain free is the only comfort we can take from this.

That it had taken the consultant oncologist thirteen weeks to meet with us, is most unacceptable. He had been e-mailed three times by our GP requesting a meeting, before it actually came about.

I do still have so much anger, hurt, pain, doubts, regrets: so many negative feelings and dark thoughts, that I just don’t know how to climb out of this depression that seems to be enveloping me. I feel so much despair and utter desolation.

Looking back, and wondering whether our son’s regular ‘Well Man Medical Check-Ups’ could have, should have highlighted the problem sooner, I don’t know. Should teenage boys/young men with learning disabilities be made more aware of testicular cancer, taught to check for lumps in their testicles, and talk with parents or carers about this sometimes ‘taboo’ subject? And there lies the stumbling block. Communication, especially with strangers, or those seen to be in authority, is extremely difficult for those with autism, and for those with other mental health problems, too. Yes, I definitely believe that awareness should be made much more of a priority. Testicular cancer is not an old man’s disease, but most often diagnosed in males aged between 15 and 35 years. Our son was thirty, and I’m sure he had no idea or any knowledge of testicular cancer. Had it been caught early, our son would still be here with us now.

I would really like, somehow, to raise awareness of this awful disease, especially in young men with learning difficulties. I’m not sure yet how to begin, but it is something I do feel passionately about.

I don’t want his thirty years to be all in vain.

Thirteen weeks, or ninety one days, and we’ve cried every single day.

Love you forever, Angel xxxx

Trial ~ Month Eight

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Tuesday 26th August

We reluctantly fly back across the Atlantic on Sunday night, arriving bright and early Monday morning. Returning to our car, loading all our luggage, we then set off for Exeter where we spend the night, catching up on our sleep.

In the morning my first appointment is at dermatology, where the faint redness can still be seen, as a result of the cellulitis. Thank goodness for the antibiotics that I took with me! No other cause for concern is noted, following a full body check.

Then it’s onto the ward where I see a different trials nurse for blood and obs (my usual nurse is on her summer break). Everything is stable and wonderfully normal. Big sigh of relief!

The final appointment is with a different oncologist from my usual one (also on vacation). Pots of pills handed over, and we’re soon on our way home.

After two long days of travelling, it is so good to fall asleep in my own bed.

The end of Summer, turns into the beginning of Autumn: new season, new hope.

Month Seven

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Tuesday 29th July

Doesn’t time fly when you’re enjoying yourself?

Seven months down the line, and I’m back for my review; just the dermatologist for a skin check, trials nurse for bloods and obs, and the oncologist for an assessment, lastly the issuing of my next batch of medication.

All the appointments go smoothly, everyone is happy, and we leave smiling, thinking positive thoughts.

Our summer vacation can now begin! We start our drive to Heathrow, where we stay overnight, flying in the morning to North Carolina.

Plastic Surgeon

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Monday 7th July

Almost eight months following my left groin dissection I have an appointment with my plastic surgeon to check progress. He is terrific, never rushed, and always willing to answer questions.

He is very pleased with the way the scar has healed, leaving just a neat silvery line in the crease  at the top of my leg.

He feels along the scar line for any new swelling ~ there is none!

He mentions that the skin graft on my foot could be made to look a little more pleasing ~ this was carried out by his colleague, using a split-thickness skin graft, and has been left looking a bit lumpy and scarred. I think it best to decline his offer at this moment in time. I don’t want to be out of action, limping and hobbling for a number of weeks ~ I think I can put up with a gnarly looking foot!

We make another appointment for a year’s time!

I had previously sought out my trials nurse to enquire as to the results of last week’s CT scan. I didn’t know whether the results had come through yet. They had…..

All is clear. Nothing has changed. Worry not.

We leave the hospital feeling massively relieved and wonderfully happy. Thank goodness.

Half way through the trial

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Tuesday 1st July

The alarm wakes us at 5am, time for a quick shower before heading out on the road to Exeter for my six month review.

First stop as usual is with the dermatologist at 9am. Having stripped off, he checks my body with his dermascope, looking for any moles that might have changed colour or grown since my last appointment. No, all is ok, no dodgy looking blobs here!

Moving on to the second hospital, about a mile down the road, I search out my trials nurse who takes my blood pressure, temperature and weight. She also extracts four vials of blood from my right arm, unfortunately rupturing my vein in the process! I didn’t realise until I looked down and saw the blood soaked swab in the crook of my elbow! Whoops.

I then have a CT scan booked, so make my way through the hospital corridors to that department. I have to wait, in the very unflattering hospital gown, for three quarters of an hour. Hmmmm, didn’t like anxious waiting. Feeling very vulnerable and scared. Anyway, when it was my turn, I was put completely at ease by two marvellous technicians. The whole process is not very comfortable, but I’m soon finished and ready to move on.

An Echo is next. I get undressed, ready to begin, only to be told I need to be seen by the technician who carried out the last test. She is in a different room. Across the corridor. I can’t be bothered to get dressed, only to get undressed again, so I wrap a sheet around me, and dash across the hallway into the designated room! It’s a fairly lengthy procedure, looking at the 3D functioning of my heart. Many images are taken and measurements recorded. I wait for the printed report, then move on.

An ECG is next on my list. This is really quick, simple and painless! Strip off, have little sticky pads attached all over, about ten seconds later the data is printed off, and I’m out of there!

A visit to the Eye Department follows, and I do not have to wait too long. A quick sight test, reading those letters from a poster! Then the stinging eye drops are put into each eye whilst the ophthalmologist checks my retinas. I leave the room crying toxic yellow tears, dabbing my cheeks with a tissue!

We then have time for a quick bite to eat for lunch before heading off to the Oncology Department to meet with consultant. After a short wait it’s time to strip off again for a quick feel!!! Foot, leg, groin, pelvis, abdomen, neck, back. All is good. No lumps or bumps here. Thank goodness.

The final trip of the day  us to the pharmacy to collect my issue of a month’s worth of drugs ~ Dabrafenib and Trametinib ~ the Combi Ad trial tablets ~ or maybe they are a placebo.

Who knows?

Whatever; I’m under such close scrutiny with an awesome team, whichever arm of the trial I’ve been placed, I know I have been getting the most amazing care.

We arrive home over twelve hours later, tired, but glad the day is over.

 

A visit to my GP

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Wednesday 4th June

The day after my hospital visit, I have an appointment with my GP. I feel as if I have a shopping list of requests!

Firstly I ask if I’m eligible for free prescriptions ~ all those being treated for cancer should not have to pay for their medications. I’m given a form to fill out, and my lovely doctor agrees to countersign it as soon as I’ve filled in all my details.

Next, I ask if he will prescribe sunscreen for me. Having malignant melanoma, and possibly taking drugs that heighten my sun sensitivity, some doctors agree to issue this free of charge. My doctor has no hesitation, and I’m given a prescription for Factor 50 sunscreen for body, and a facial one too.

Another item on my shopping list is a prescription for strong antibiotics, two weeks worth, to take on holiday. I am becoming increasingly anxious about infections, perhaps leading to cellulitis. A scratch or stray mosquito bite could have serious consequences. Again, my doctor agrees to give me the tablets as a precautionary measure. I’ll take them with me, but only take them if absolutely necessary.

Finally, seeing as I’m on a roll here, I ask if I can have some of the moisturising, softening cream that the dermatologist had given to me. No problem at all.

Fantastic! I leave my appointment with everything I need, all for free. Such an understanding, caring doctor. He takes the time to explain and talk through my fears. A few less things to worry about

Month Five ~ Drug Trial

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Tuesday 3rd June

And off we go again to the hospital for my month five checks. Dermatology first, where everything is deemed to be fine and dandy; I leave with a couple of free sample tubes of moisturising cream. It has become a bit of a ‘knowing smile’ moment between myself and my husband: for the last few visits to the dermatologist, he has always commented that my back seems a bit dry ~ I don’t think it is!

We then drive to the second hospital where I meet with my trials nurse. She extracts four vials of blood from my right arm, takes my temperature, blood pressure, and weighs me.

We then have a break for lunch, and finally have the last appointment with my oncologist. All is as it should be, and I am issued with the next month’s supply of drugs.

All is as it should be! Ha! I wish it was.

I have malignant melanoma. This is not how it should be. Every time I visit the hospital for tests I’m reminded how things have changed. This is now the new normal. Stable is the best I can hope for. So, I build my bridge, and get over it. I must now be as positive as I can, have no regrets and enjoy every single day.

One year ago

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Thursday 3rd April

On the third of April 2013 I had an appointment with my GP to check out a dodgy mole on my left foot. The Alien Blob. I think he knew what it was straightaway. And so began my melanoma journey.

Here I am today, in Exeter, undergoing two days of tests for my three-month review as part of the Combi-Ad clinical drugs trial.

I began yesterday with the dermatologist, still keeping an eye on a small mole on my left ankle. I then moved on to bloods and obs with the trials nurse. My next stop was down to Medical Outpatients for an ECG, then a bit of a wait for the final stop of the day: a CT scan. Oh joy!

Thursday began with an ECHO, followed by an eye exam, then the consultation with the oncologist and the handing over of my next month’s worth of tablets.

So here I am, a year after I visited my doctor, and already three months down the road with GlaxoSmithKline. Am I doing the right thing? Do I have any other choice?

 

 

Two month review

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Tuesday 11th March

Leaving home at 8am to make the drive to Exeter, just over two hours away, I feel twinges of anxiety. I have been taking the pills for the Combi-Ad trial (trametinib and dabrafenib), for two months, and have appointments with the dermatologist and oncologist, as well as the trials nurse for bloods and obs.

A whole body skin check is first, and a small freckle-like mole is noted as something to keep an eye on. It’s on the inside of my left ankle, about 3mm in diameter, with a slight dark, raised pigmentation to it. Hmmmm, have not noticed that before; will have to watch it. Two consultant dermatologists had a close look, but were not unduly worried.

The next stop is to see the senior trials nurse who takes four vials of blood, my temperature, weight and blood pressure. Whoops, 145 over 92 is a bit high, maybe the result of my worry about the day! My nurse is lovely, and looks after me so well, answering questions, putting me at ease, making sure that the day runs smoothly. We talk about any changes that I may have been aware of, and I tell her about my tiredness, constipation, and a few spots around my mouth and nose. We also discuss the lymphoedema in my leg, and the great results that are being achieved with the weekly massage sessions.

The final appointment of the day is with the oncologist, who starts with a look at my left foot, the ‘mole which demands awareness’ on my ankle, the glands behind my knee and in my groin, and finishes with the tapping on my back ~ not sure about the last bit, but lots of doctors do this in films!!

I wait for my new pots of pills to be dispensed by the pharmacy, and we are done for the day. Arriving home at 6pm, it has been a long ten hours, but all seems good as I begin my third month on the trial.

And I’m still no further forward in knowing whether I’m in possession of the real drugs, or the placebo. But, the intensive monitoring is certainly very reassuring. Big smile, deep breath, and relax. See you in a month!