Category Archives: Trial

Jun9

Month 18 ~ clinical trial

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Tuesday 9th June

And so it comes round again, a two hundred and fifty mile round trip to the hospital where I signed up to GlaxoSmithKline’s Combi-Ad drugs trial for the adjuvant treatment of malignant melanoma in stage 3 patients.

My primary tumour was on the fourth toe of my left foot. The Alien Blob. Unfortunately the cancer cells spread to the lymph nodes at the top of my leg, so I had those removed too. My treatment has been immunotherapy, combining Dabrafenib and Trametinib. I’m now on two years of three-monthly check-ups.

Month 18 has me visiting two hospitals and five different departments.
Dermatology first ~ “Ooh, I don’t like the look of that mole on your arm, it’s better off, in a pot. We’ll make an appointment to remove it.” Eeeewwww.
Women’s health next, for a cervical smear test ~ “Up you get, ankles in the stirrups, relax”. Eeeewwww.
Trials nurse for blood and obs ~ four vials sucked out of the vein in my right arm, and blood pressure much too high. Eeeewwww.
Medical imaging follows, for a CT scan. Cannula inserted into vein in left arm, radioactive contrast goes down the tube: breathe in, hold your breath, breathe normally. Three times. Eeeewwww.
Lastly to the oncologist for an all-over physical exam ~ “Oh yes, month 18 requires a rectal exam too.” Eeeewwww.

But still, despite all the tests, I’m glad that I am being so well monitored. I just have to wait a couple of weeks for the results.

I just wish my son’s treatment had worked for him. I am reminded of his chemotherapy whilst speaking with my trials nurse ~ we are in the day case ward, where people are hooked up to various cytotoxic mixtures being delivered into their system, using the same machines and pumps as the ones we had become used to with him.

We visit the cemetery on the way home, to talk with him. And I just keep asking myself, why I am still here, yet he is not. Why couldn’t he have been saved? Especially when we were told everything was progressing well. That’s just what I can’t get over. So unexpected and heartbreaking.

Love you so very much xxxxx

Apr27

Month 15 (+1) results ~ normal?

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Monday 27th April

Shortly after ten this morning my trials nurse phones to tell me the results from the tests I had almost two weeks ago. I have malignant melanoma, (stage 3c), and have been on a clinical drugs trial, Combi-Ad, since January 2014. It is an adjuvant treatment combining two drugs, Dabrafenib and Trametinib. It is a double-blind trial, so I don’t know whether I was taking the real thing or a placebo. But the monitoring has been incredibly worthwhile.

Anyway, the drugs part is now over, and I’m seen every three months, for check-ups in dermatology, haematology, oncology, and also have CT scans.

My nurse was happy to report that all is normal, with no evidence of metastatic disease. Plus, my thyroid gland shows normal levels from a blood test, as the oncologist thought it did perhaps look slightly enlarged.

So there we have it. I am normal.

But that’s not what I feel right now. Very far from normal. I wish everything was normal, like it was before. Before we lost our son. I cannot get used to this new normal. I seem to be ‘well’, but that is nothing to celebrate without my son being here. That sounds a little selfish, but I just wish we had had more time with him. We had so many plans, so many more places to visit, so much more fun and laughter to have.

Early afternoon sees us visiting our son’s graveside, to remove some of the old greenery from the floral tributes. We bought a basket of yellow marigolds, that should bring some bright colours for him.

This now, has become our new normal. Standing beside his grave: talking, wishing, tidying, crying, just wanting to be close to him.

I don’t like this new normal at all.

Apr14

(Delayed) month 15 clinical drugs trial

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Tuesday 14th April

Off to Exeter hospital today for a battery of tests that I should have had done last month.

I have Stage 3c malignant melanoma, the deadliest form of skin cancer.

A mole on my left foot began causing problems just over two years ago, so I had it removed, complete with skin graft. Following a sentinel node biopsy, I learnt that cancerous cells had spread to my lymph nodes at the top of my leg, so I had a left groin dissection in November 2013, leaving me with lymphoedema in that leg, but wearing a support stocking does help tremendously, although it does look ghastly.

For all of last year I was on the double-blind Combi-Ad clinical drugs trial, by GSK. An adjuvant therapy combining Dabrafenib and Trametinib. Monthly hospital visits, with scans, ECG, heart Echo, eye exams, dermatology, haematology and oncology appointments.

Now that I’ve completed the “drugs” part, I’m being monitored every three months for the next two years, then six-monthly for two more years after that. Today I start with dermatology, then blood and obs ~ my blood pressure was a bit high ~ then a CT scan, and finally a visit to the oncologist.

I did find the day very draining, as our elder son would most often come to the hospital with us, and knew the nurses there very well. So it was quite an emotional time, explaining all that had happened. Really quite rubbish to be truthful. Especially since the last five months or so, we have been totally focused on him, and the testicular cancer attacking his body.

Plus, going through the scan, all I could think of was my son, and how I wish his scan had shown a problem that could/should have been spotted or fixed.

The oncologist had a quick glance at my scan images, and all looks good, apart from maybe a slightly swollen thyroid gland. But I will have to wait for the senior radiographer’s report and results from the blood tests. But he didn’t seem unduly worried.

We drove home mostly in silence. Deep in thought. Thinking. If only….. What if…… Why……

We did stop by the cemetery though, to talk with our son, to let him know how I’d got on today. I know that sounds strange, but we find it comforting, and actually necessary to visit each day. To water the flowers, to touch the simple wooden cross, as if somehow we’re connecting with him.

It really doesn’t seem right. I just wish he was back here with us. Why did his treatment fail him? Will we ever get an answer to that question? Will we be told exactly what went wrong?

We have too many unanswered questions going round and round in our heads. Why, why, why?

Dec15

Month Twelve of my Clinical Trial

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Monday 15th December

Two days of tests for Month Twelve.

So this is it, the end of the ‘Drugs’ part of the clinical drugs trial, for the adjuvant treatment of stage three malignant melanoma.

For twelve months I’ve been taking pills in the morning and again at night. I do so hope they haven’t been a placebo, but the real thing, as supplied by GlaxoSmithKline for the Combi-Ad trial.

We arrive in Exeter mid-morning on the Monday, do a little shopping, then I begin the tests. A CT scan, followed by a cervical smear, finishing with an Echocardiogram.

All is completed by 5pm, whereupon I go to find my husband and son who should be waiting in the cafeteria. But no sign of them there. I phone my husband who tells me that my son has had a ‘funny turn’, and has fainted. They had been making their way down to the car to get some fresh air when my son collapsed. I caught up with them in the corridor: doctors, nurses, upset husband and a frightened son.

My son is sitting in a wheelchair, answering all sorts of questions. My husband is visibly shaken too. We are told we must go to A and E for my son to be checked out. (He is on day fourteen of his chemotherapy, and is attached to a small pump delivering bleomycin through a line in his chest. Testicular cancer with progression of tumours in his brain and lungs).

We sit and wait, with my son lying on a bed, for just over three hours. We think the collapse was due to tiredness and dehydration. Since starting chemo, my son has not enjoyed drinking his usual fruit juice or cold drinks, complaining of a nasty metallic taste in his mouth. All he can manage are infrequent cups of tea and a little water every now and again. It was rather scary for him, and for us.

After observations and an ECG are done, we are allowed to go. Arriving at the hotel just before nine at night, we make our way to the restaurant across the car park. Just before we reach the entrance, son is very sick, so we about turn, return to the hotel, order a delivered takeaway, and finally eat dinner just before 10pm. Truly a long and difficult day.

Tuesday morning, and I’m back at the hospital seeing the dermatologist first. A full body skin check and a feel of lymph nodes. All seems normal, no problems, see you in three months.

We then drive to the main hospital to meet with my trials nurse. Mini meltdown follows when she asks about my son. She has met him on a number of occasions, and has got to know him quite well. Cuddles and kind words of comfort are followed by bloods, temperature, weight and blood pressure checks.

I then move on to a different department for an ECG, somewhere else for an eye exam, finally to the oncologist for a chat and the dreaded rectal exam.

And there we have it, twelve lots of four weekly visits, numerous scans, examinations, pokes, prods, and pill pots has come to an end. What follows now are three monthly checks for the next two years. I know the intense monitoring has been worthwhile. It may have been intrusive, but at least I feel I have been proactive in trying to do something to look after my body.

We drive home from one hospital to yet another, dropping my son off in Truro for his next round of chemotherapy. We stay a while to have him settle in, then my husband drives me home only to turn around and return to the hospital to be with our son.

A very long and draining couple of days. My drugs trial is over, but my son’s chemotherapy journey has just begun.

Aug26

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.

Jul29

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.

Jul7

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.

Jul1

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.

 

Jun4

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

Jun3

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.