Tag Archives: trial

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.

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.

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!