Category Archives: Combi-Ad

Jul6

Another check-up

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Monday 6th July

Here we go again ~ another 250 mile round trip to the hospital where I am taking part in a clinical trial using a combination of drugs in the adjuvant treatment of stage 3 malignant melanoma.

Today I see the most wonderful plastic surgeon who carried out a left groin dissection in November 2013, to remove lymph nodes at the top of my leg. I have a 20cm scar, which has faded almost to nothing, and a couple of smaller scars where the drain tube exited further down my thigh. He was pleased with the healing, and asked about the groovy support stocking and lymphoedema that I now have. I said it was a small price to pay if he had removed all the cancerous cells.

The drive home was unusually slow, with lots of holiday traffic, caravans, lorries, tractors and wide loads on the dual carriageway. We took almost an hour longer than our normal two hours. Plus the rain didn’t help matters.

We stopped in at the cemetery. No one else was about; it was a bit grey and wet. We talked to you as we always do, whilst tidying up the flowers. It still doesn’t seem real. It doesn’t seem right or fair, that my cancer treatment is working for me, and yet your treatment failed you. Why? Why? Why?

Missing you so much today.
Love you forever.
Precious Angel.
xxxx

Jul2

Removing another alien blob

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Thursday 2nd July

Following my Month 18 check-up for the Combi-Ad clinical trial that I am on for malignant melanoma, a ‘mole’ on my arm was deemed to be suspect. Today we had a 250 mile round trip so that the hospital where I go for treatment could remove it.

The procedure took about thirty minutes to cut away the offending blob, then closed up with both internal and external stitches. I didn’t really feel anything, as I think quite a lot of anaesthetic was injected around the mole to begin with. I have about a two and a half centimetre scar, and will have to wait up to three weeks for the results. I have to have the stitches out in seven to ten days.

So there we have it. Cross fingers for a good outcome.

On the way home we stopped by the cemetery to see you. We talked for a while about what I had had done, in the same hospital where you were born, just over thirty years ago. So many memories came back to us.

I wish you were still here so we could talk with you properly, and to have a cuddle. I do miss those.

Love you forever.
xxxxx

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Jun23

Month 18 results

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Tuesday 23rd June

Speaking with my melanoma trials nurse this morning, I can report that I am NED ~ no evidence of disease. This follows a large battery of tests that were performed two weeks ago. That should be a good thing, right? No metastasis of the cancer. Everything looks normal, with no change to any internal organs.

I should feel over the moon, happy at least, or a huge relief. No cancer in my body. Hip hop hooray.

On the one hand, yes, of course I do, a huge weight has been lifted off my shoulders. For another three months at least, when I go back, and the scanxiety begins all over again.

I’m trying hard not be negative here. But it’s difficult.

Because on the other hand, I do feel “Yeah, so what?”, shrugs shoulders, curls lip. “Whatever”.

You see, melanoma is a sneaky disease, it can lay quiet for months, even years, before unexpectedly exploding back on the scene. It’s not just a case of cut it out, it’s gone, you’re good to go.

I already know that the cancerous cells spread from the mole on my toe, through my lymphatic system, up to the nodes at the top of my leg. This follows a number of surgeries and a skin graft. Despite being told the nodes were encapsulated, there is always that niggling bit of doubt, quietly knocking on the door, at the back of my mind. It’s a bit of a deadly lottery really.

No, melanoma needs much vigilance: perhaps a change in diet and lifestyle, sun awareness and proper sunscreen use. And very careful monitoring of your skin.

So yes, I am feeling positive that I am NED, but I won’t let my guard down. Gone are the days of beach tanning to a leathery brown, my diet now contains lots of fruit and vegetables, and I try to exercise daily by walking, despite the lymphoedema in my leg. Oh, and I use sunscreen every day, too.

(Thinking of my darling boy in heaven, whose cancer was diagnosed too late.
I so wish things had been different.
Love you, love you, love you xxxxx)

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?

Jan20

My Month 12 Results

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Tuesday 20th January

I receive a letter in the post today from my oncologist.

“I am pleased to inform you that the CT scan done on 15 December shows no evidence of new disease and no focal suspicious lesion in the bone. There are a few nodules which have been seen on previous scans, but they remain the same and have not grown or changed since.

I hope you find this reassuring.”

Oh yes! I can breathe easily for another three months. One less problem to worry about, a weight has been lifted from my shoulders. Sometimes I forget about ‘me’, and my issues; there are so many other things going on that I have to deal with, so reading this news is truly wonderful.

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.