Category Archives: Consultation

Feb11

Four weeks of “pills”

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Tuesday 11th February

Today I turn into a stripper!

(Not too racy, not too lacy. Matching. Black. Hospital-ready underwear! Much thought goes into ‘what on earth shall I wear?’)

I spend six hours at the hospital.

I took my clothes off and on four times.

Once for the dermatologist for a skin check. (He mostly checked up and down my left leg, but also my front, back, arms and right leg. All seems fine).

Once to have an ECG to have the sticky pads attached. (Wires were stuck to my feet, tummy, sides, chest and neck. A quick printout, and all was done).

Once for an Echo to have an ultrasound of my heart. (An ultrasound device was covered in gel, pressed against my chest, and many 3-D, colour images and measurements were taken of the functioning of my heart. All seems fine).

Once for the oncologist for a whole body/tummy/groin/liver ‘feel’. (He looked at my left foot first, the site of the original alien blob. Then he moved on to lymph nodes, tummy, neck and back. Again. all seems good).

Bloods were taken too ~ four vials. Temperature, blood pressure and weight were noted.

I had an eye exam as well.

All looking good.

Four more weeks of pills issued.

£7000 worth!!! (If they’re the real thing !!!) Thank you GlaxoSmithKline.

In at 10:30am, out at 4:30pm. Six hours of tests, checks and reviews. A long day, going from waiting room to waiting room.

Am I, or aren’t I? The real thing, or a placebo? I would really like to think the ‘drugs’ are stopping the progression of melanoma. Keep positive, eat sensibly, sleep well, keep active, smile lots!

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.

Dec31

Appointments ~ all change!

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Tuesday 31st December

The trials nurse from Exeter rang three times today ~ she joked she felt like my stalker! What she was doing, was trying to arrange all my appointments into as few days as possible. And I think she’s succeeded.

This Thursday I have a CT scan, an ophthalmic review and an ECG, all at Exeter hospital.

The following Monday I go to cardiology for an Echo cardiogram, then oncology for bloods and obs, and finally to surgical out-patients to visit with my plastic surgeon for an eight week review following surgery.

A week Tuesday I have an appointment at the Pigmented Lesion clinic for a full dermatological check-up. This will be followed by a visit to the trials nurse for more blood and obs, an appointment with my oncologist, where ‘randomisation’ takes place, and I’m issued with my first course of medication. Combi-Ad. Things are beginning to get serious.

I also have appointments closer to home as well, with the lymphoedema nurse, the occupational health officer, and at the local surgery for a pap smear.

I am entering new territory, feeling rather apprehensive, a little scared, but oh so hopeful and positive for what lies ahead.

As 2013 comes to a close, I will awake tomorrow assured that all my consultants, specialists, doctors and nurses all want the very best for me.

And I’m with them on that one! Bring on 2014, I’m ready to fight for my health!

Dec16

I sign up!

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Monday 16th December

Just over two hours after leaving home, we are being seen by a lovely trials nurse at the hospital in Exeter.

Today is the day I sign my body over to GlaxoSmithKline.

We are taken to a very comfortable consulting room and the nurse goes through the different tests I will be put through before I get the go ahead to take part in this trial. A complete physical examination. These include CT scans, MRI scans, electrocardiogram, echocardiogram, vital signs, blood tests, eye exam and a pregnancy test!
I need to be ‘randomised’ before February 4th.

These are the details from the trial documentation:

“A Study of the BRAF Inhibitor Dabrafenib in Combination With the MEK Inhibitor Trametinib in the Adjuvant Treatment of High-risk BRAF V600 Mutation-positive Melanoma After Surgical Resection.

This is a two-arm, randomized, double-blind Phase III study of dabrafenib in combination with trametinib versus two placebos in the adjuvant treatment of melanoma after surgical resection. Patients with completely resected, histologically confirmed, BRAF V600E/K mutation-positive, high-risk [Stage IIIa (lymph node metastasis >1 mm), IIIb or IIIc] cutaneous melanoma will be screened for eligibility. Subjects will be randomized to receive either dabrafenib (150 milligram (mg) twice daily [BID]) and trametinib (2 mg once daily [QD]) combination therapy or two placebos for 12 months.

Primary aim: Relapse-free survival (RFS)
Secondary aim: Overall survival (OS) of dabrafenib and trametinib as a combination therapy versus placebo; approximately 5 years;
Distant metastasis-free survival (DMFS) of dabrafenib and trametinib as a combination therapy versus placebo; approximately 32 months;
Freedom from relapse (FFR) of dabrafenib and trametinib as a combination therapy versus placebo; approximately 32 months;
Safety of dabrafenib and trametinib as a combination therapy in the overall study population; approximately 5 years.”

So, this is what I have signed up for.
It really is frightening and scary territory for me.
Having read a lot about this trial, and spoken (via the Internet), to people already on the trial, there seems to be a lot of hope and positivity for it.
Without help and advice from these people I would be walking a lonely minefield of ignorance

From the oncology waiting room, I then move along to the one at surgical outpatients. We have about a forty five minute wait, but are then called to one of the consulting rooms. It is almost five weeks since my plastic surgeon operated on me. The scar is incredibly neat, and healing well. However, I still have the drain bag attached, and my lumpy, red cellulitis is a pain in the neck! Apparently it’s all normal-ish . . . . the drain fluid is a straw colour, a good sign, but the hard, half-grapefruit-sized lump is an unwanted side effect. As I have no lymph nodes on the left hand side, lymphatic fluid has nowhere to drain, so it collects in pockets, and sometimes becomes infected, resulting in cellulitis. Oh joy! I must keep the bag stuck to my leg, and am given a new, two-week dose of broad-spectrum antibiotics.

My surgeon is great, and really easy to talk to about any problems or fears I may have. I am told the swelling will go down eventually, and cosmetically, I will have a very discreet, tidy scar. I am due to see him again in the New Year for a two month review.

Dec12

Another day. Another trial.

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Thursday 12th December

Another long drive up to Exeter today, this time, to visit with a second oncologist to discuss a second drug trial in two days! Unlike the information from yesterday, this one combines two drugs: dabrafenib and trametinib, but alike, in that it is double-blind ~ drugs vs placebo, no-one knows if you are taking the drugs or not.

My appointment was for 3:45pm, but because of the horrendous parking situation, we rolled up with an hour to spare. Both of us are becoming quite good at sitting in waiting rooms! We finally went in about 4:10pm. Firstly we spoke to the trials nurse for about five minutes, then the Macmillan nurse for about ten minutes. She wanted to check my wound, drain and the extent of the infection and the cellulitis ~ it is normal apparently, following a groin dissection, but she did sympathise with me, and the pain and discomfort I was having.

Then they both left . . . and we waited and waited and waited . . . . . for almost an hour, my husband and I were in that room on our own!!!! Staring at the walls, opening the door, looking out of the window. The oncologist finally showed up about 5:20pm, apologised that a colleague had had a bicycle accident, resulting in broken bones, and that had messed up his schedule.

Hmmmm.

Anyway, we spoke for about 50 minutes about the trial ~ the drugs, possible side-effects, scans, tests, travelling to Exeter, emergencies, signing of the consent form, and interactions with my morning pill-popping of various vitamins, minerals and supplements

He said he would get the trial nurse to phone me to talk about all the pills I take, to make sure none are on the prohibited list ~ maybe turmeric, cinnamon and resveratrol, and then we’re good to go, to start the initial battery of tests, probably in the new year.

We did come away feeling quite positive, despite the loooooooong wait!!!!
We eventually exited the building at ten past six, arriving home about 8:30pm, in the end.

I believe my mind is made up, and I will go with the newer Combi-Ad trial, with slightly less side effects, and not as much scrutiny via relentless full body, invasive tests. Even if I get the placebo arm of the trial, I will be very well looked after, plus I won’t suffer the side effects ~ hmmm, sounds like a good plan to me!

Dec11

A shower. A bag. A trial.

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Wednesday 11th December

Had a shower this morning, first time in four weeks! Oh my goodness, how wonderful to feel really clean!!! Up until now I have been making do with a ‘sink wash’, so I wasn’t really smelly, stinky or dirty! As I had a waterproof dressing over the wound from where the tube exited my leg, I thought all was OK. Whoops, no it wasn’t. The dressing became waterlogged, and then I began bleeding/weeping from the wound. Up until that point, I thought that the hole had almost sealed over, and everything had dried up. Wrong! For some reason I had begun to drain fluid again ~ maybe the warm (certainly not hot), water from the shower had caused this. Anyway, I couldn’t really stem the flow, and used up three dressings before it seemed to slow down sufficiently for the thing to stick, and stay in place!

So, an early, early appointment at the hospital in Truro ~ I was the first one in ~ just for a review of my blue/black/red inner thigh. The cellulitis that had decided to form at the top of my leg was painful, especially when trying to sit down, or get back up again.
Really, the nurses agreed that I am still waiting for the antibiotics to kick in properly, it has been barely 48 hours, so it was no worse, and maybe a tiny improvement with the swelling/redness could be seen. The Macmillan nurses thought it best that as I was still leaking/bleeding, the sticky-on drain bag had to be put back on ~ thought I had seen the last of the pesky, dangly bag!!

I was then taken over to see the oncologist in a different building: a waiting room full of people, cheerfully given a coffee, and then we went straight in to his consulting room!!!!
We talked about the trial he is running, and have come away with more paperwork!!! This one is again a double-blind trial: drug vs placebo. The drug is Vemurafenib, and has shown amazing results on Stage 4 patients, but there are side effects.

What to do, what to do?
We are going to Exeter tomorrow, to their oncologist, so will have to make a decision soon. Such a dilemma . . . . .
1. Truro trial
2. Exeter trial
3. Do nothing.

Will have lots to think about by the end of the day tomorrow.
So much uncertainty and confusion!!!