Monthly Archives: January 2014

Jan28

14 Days of Pills

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Tuesday 28th January

Day fourteen of taking the pills, and I’m not sure if they’re the real thing or the placebo. Dabrafenib and Trametinib, or simply harmless smarties? The Combi-Ad clinical trial has seen me give up many of my daily supplements, remember to time the taking of the tablets one hour before or two hours after food, and to question every little deviation from the norm in my body. I have to make a note of any changes, however small.

There haven’t been any temperature spikes (and I did go out and buy a digital thermometer especially!), and this was one of the side effects I was predominantly warned about. No joint pains, nausea, hair loss, rashes or sight problems. I do though feel more fatigued, and am constipated!!

Drugs or no? I just don’t know. I thought if I was to be taking the drugs, I would really, really notice the side effects. So, I have believed I’m on the placebo arm of the trial.

Before beginning the trial I think I’d hoped to be on the placebos: certainly no side effects, but all the intense monitoring. A couple of weeks in, and I’m starting to question that! Perhaps it would be more worthwhile if I was actually taking the real thing, and it was improving my survival chances.

Late on in the evening my trials nurse telephones to see how I’m getting on, any changes that I notice in my health, and to remind me of my appointments in two weeks (dermatology, Echo, eye exam, bloods, obs, consultant), she has it all organised! I tell her all is good, with no ‘temperature episodes’, and I find out that the five other patients on the drugs at Exeter have also not had these symptoms.

Ahhh, I had believed a high temperature was the main indicator of the trial drug. So might I actually be taking the real thing? Who knows? Not me, the nurse nor the oncologist. Only within a laboratory of GSK will my name be matched to the answer.

Jan21

The Garment

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Tuesday 21st January

Support hose, surgical stocking, compression garment.

None of these titles convey anything but ‘old granny’, ‘saggy baggy’, ‘creased and crumpled’, ladies with fat ankles ~ ‘cankles’

Today is the day I’ve been dreading.

My new ‘American Tan’ stocking was pulled and stretched onto my left leg by the lymphoedema nurse, wearing a pair of blue washing-up gloves! She said these were good to get to grips with the tight fabric, in order to clothe my leg in this ghastly, knitted, tight, mud-coloured tube.

I’m not usually one for negativity, moaning, whining or crying, but the sight of my left leg, covered from toe to crotch in this horrendous material did make me sob.

Yes, I am vain, I admit it. I want to wear skirts and sandals in the spring; I like shorts and flip-flops in the summer; bare legs!

Well. I’ll just have to grin and bare it (ha ha!!). I’ll put up with this compression garment for a few months, and who knows, maybe the lymphatic fluid will be encouraged to drain away, up my leg, and find other lymph nodes and channels in which to disperse. I do hope so.

Jan15

Clinical Trial ~ Day One

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Wednesday 15th January

So this is it! The day I start on the Combi-Ad drug trial. From what I’ve read, this is the best one to get on. The drug combination may even become licensed before the year is up. Results have been showing great things in Stage 4 patients, so let’s hope it delays progression, or stops this melanoma in its tracks. I really am hoping for good things.

Two pink capsules and one small round tablet are taken first thing in the morning. Nothing to report.

Two pink capsules are taken twelve hours later. Nothing to report.

My journey starts here. Where will it take me? Let’s hope I have a long and varied road still to travel.

Jan14

It’s D-Day

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Tuesday 14th January

Another long drive to Exeter. It’s D-Day today: provided I pass the final day of tests, I’ll be given my drugs!

The Pigmented Lesion Clinic is first ~ Dermatology. All clothes, apart from underwear removed, and the consultant checks me all over, very carefully, using a dermatoscope. He is very thorough, and finally announces that all is good, and he wants to see me again in four weeks.

Next stop is the lovely trials nurse for another batch of form filling, blood pressure, temperature, and four vials of blood taken from my arm. All looking good here.

We then move into the main waiting area, which is filling up fast. I’m called into one of the consulting rooms, and introduced to the ob/gynae consultant. He seems quite pleasant and cheerful ~ “I’ve been called down here to perform a technical function”. Well, if that’s what you want to call a pap smear, that’s OK by me! Bottom half clothes removed, smear sample taken, time to get dressed.

I move back into the waiting area, but it isn’t long before I’m called in to see the oncologist. Clothes off again ~ apart from underwear!! He wants to check my scar, the lumpy swelling at the top of my leg, lymph glands, my liver, abdomen.

And, and, and, well? Yes, all seems in order for me to take part in the Combi-Ad drugs trial! This is now getting serious. Down to business ~ I am given two pots of tablets: the big pot ~ Dabrafenib/placebo, two to be taken twice a day, twelve hours apart, one hour before food/two hours after food; the small pot ~ Trametinib/placebo, one taken each morning.

Combi-Ad, for one year! Well actually 12 months x 4 weeks = 48 weeks, or 12 months x 28 days, which is only 336 days in total.

Bring it on! Placebo or not, drugs or not, I’ll be incredibly well monitored with monthly visits to Exeter to see how I’m progressing.

If this helps me to live longer, live healthy, live happy, then GlaxoSmithKline you can look after me for a year. I’ll be on that tropical beach, under a parasol, cocktail in hand, living, loving, laughing for a good few years to come.

Jan10

Lymphoedema and Support Stockings

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Friday 10th January

Well, that was the most un-positive day I’ve had for a long, long time.

I’m normally very upbeat and try not to let things get me down. Even if I’m feeling low, I try my hardest to put on a ‘happy mask’.

Today though it all seems very hopeless and a slide down towards despair and inevitability. Nothing is going to make this right, or better, or normal.

I rarely use the words don’t, can’t, won’t as far as my actions are concerned. But I don’t like this. I feel I can’t do this anymore. I won’t ever get back to being how I was.

My appointment with the lymphoedema nurse lasted an hour and a half. Many measurements were taken of both of my legs. Every four centimetres the circumference was measured and noted down. And yes, there were fairly large differences between the two. It turns out my left leg is carrying 800 mls more fluid than my right. Almost a kilogram in weight! No wonder the skin feels tight and stretched, no wonder my knee and thigh feel heavy and numb, no wonder I have trouble walking properly.

And what is the solution? A support stocking. There you have it. I will have to wear a tight garment on my left leg for the foreseeable future. This thought really does depress me, and the happy mask that I wear everyday, seems to slip away.

I leave the hospital feeling very low and despondent. I didn’t sign up for this!

Jan6

Second Day of Tests

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Monday 6th January

My second trip to the hospital in Exeter sees me undergoing another batch of tests for the Combi-Ad trial.

My first stop is at Cardiology where I am to have an Echocardiogram to check the structure of my heart and it’s pumping capability. The technician explains it is similar to an ultrasound scan whilst pregnant. I have to totally strip off my top half, and have the sensor, with gel, placed at various positions around my heart. The three-dimensional imaging is amazing. Many screen shots are taken, measurements made, and numbers crunched. The whole process takes about half an hour, then I wait for the printout to take with me to the trials nurse back in oncology.

After a ten minute wait in oncology, I am taken into a consulting room with the senior trials nurse. She is great, very friendly and willing to listen and answer all my questions. She remarks that I have super veins, and then proceeds to take a number of vials of blood.

‘Observations’ are next: blood pressure, temperature, pulse, height and weight. Oh my, I have gained a couple of pounds in weight, and lost an inch in height!! Diet time and I need to improve my posture and do some stretching!

I am then taken into another private consulting room and have a full physical check with one of the trial doctors. (I have to remove all clothing apart from my bra and vest top!) He checks my visual response to his moving finger; he asks me to frown, screw up my eyes and blow out my cheeks; he checks the strength in my neck and shoulders; he listens to my chest and back; I have to say “aaahhhh”;  he feels my stomach; and lastly I have a rectal exam. I had been really, really dreading this particular part of the exam, but it was painless, and soon over.

My husband and I then take time out to have some lunch and a cappuccino before the final appointment of the day with my plastic surgeon. (I have to remove my trousers this time!). It is eight weeks tomorrow since my surgery. The hardish, red, black lumpy lump at the top of my leg is unsightly, but not sore. A seroma is a nasty side effect of the operation, but the surgeon is not unduly worried. He could drain the fluid using a fine needle, but that could introduce infection, and in all probability would fill up again. He is pleased with the scar healing, and will see me again in three months.

My first appointment was at 12:30pm, the last at 4:40pm, but I didn’t go in til 5pm. We drive away just after five thirty and arrive home at a quarter to eight.

Another long day, but ultimately it will be so worth it. I am due to come back on the 14th for more bloods, obs, a smear test, a check with the oncologist, and then to be given my four weeks worth of drugs. £7000 worth!!!

Things are looking positive for a much better year.

Jan2

The Tests Begin

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Thursday 2nd January

We set off early for our 100+ mile journey to Exeter, arriving about 11:30am. Husband drops me off and continues into the city with elder son, (no point staying, as they wouldn’t be able to accompany me during the testing!).

My first stop was to oncology where I had to pick up a trials worksheet, and other paperwork.

I then walk down the hospital’s long corridor to Medical Outpatients. I didn’t even reach the reception desk, but was intercepted by a lovely  voluntary worker who asked where I needed to go. She took me to a room marked ECG, knocked on the door, and told me to take a seat: the door opened before I sat down! A number of sticky pads are attached to my ankles, tummy, chest and neck ~ no more than ninety seconds later and it’s all over. The only data I understand from the printout is my heart rate: 65 bpm, not too bad, I suppose!

My next move is back along the corridor to x-ray for a CT scan. Here, I have a wait of about ten minutes, then I’m ushered down the department hallway to a cubicle, and told to strip off, and put on a wonderfully fetching hospital gown. My name is called, and into the room I go. Lying down on the couch I have to clench and unclench my fist with a tourniquet tightly around my upper arm. A needle is inserted into the vein of my right arm, in the crook of my elbow and secured in place. I then have to raise both arms above my head; as the nurse leaves to go to the safety of an enclosed ante-room, my back and forth journey through the big white doughnut begins. As the radioactive dye enters my system I get a metallic taste in my mouth and a warming sensation. Thorax, abdomen and pelvis are first to be scanned, followed by head and neck. The whole procedure is over in less than half an hour, the nurse removes the line from my arm and sticks a dressing on. Thanking her, I leave, get dressed and go and find the coffee shop! Not having eaten breakfast, but just the requisite 500ml of water an hour prior to the scan, I was looking forward to a cappuccino!

My last port of call was to the Eye Unit. When I arrived at reception there was no record of my details on the system. A quick visit to one of the consultants, and he knew why I was there, and what tests to carry out. A standard eye test was followed by some strange drops into my eyes. Two vials were mixed together, forming a fluorescent yellow liquid ~ and it did sting ~ making me cry toxic tears. Various eye movements were called for, as the consultant peered through lenses and shone bright lights to carry out a variety of retinal ophthalmic examinations.

And then, it’s all over for today. Not too much waiting around, nothing particularly painful and everyone so kind and helpful. Our drive home begins, and we are there in time for dinner.