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!!!

Dec9

Another mad dash!

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Monday 9th December

Having gone to our local hospital on Friday, we were back again this morning for another emergency visit!!! I was seen immediately by the specialist cancer nurse, and a consultant. The swelling/redness/pain/hard lumpy feeling is cellulitis 😦 This can become dangerous if left, and lead to septicaemia.

So I am now on a mega dose of penicillin, 2000mg a day. Hit it hard, and it should go away!!

I hate feeling like this.

But, some vestige of good news: the plastic drain bag is no longer stuck to my leg. There is still an open, exit wound, where the drain tube came out of my leg, but this is slowly beginning to close up. The ‘stuff’ that should have been draining out is further up my leg, which has now become infected ~ oh joy!!

Anyway, back again for a review on Wednesday morning. If there is no change, or the bruising and redness have increased, then the ‘lump’ may have to be drained off using a fine needle ~ not a pleasant prospect!

Still, I can’t fault the service; I have been seen, at the drop of a hat, every single time 😉 The nurses are amazing, and take time out to talk and reassure you.

Hopefully normal service will be resumed soon.

Dec6

A quick dash to the hospital !

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Friday 6th December

Well, I didn’t expect a rushed visit to Treliske today!!

Having seen my plastic surgeon on Monday in Exeter, and told the drainpipe in my leg was not ready to come out (still losing too much fluid), I phoned the Macmillan nurse in Truro today.

The top of my thigh really was beginning to feel very ‘wooden’, hard and bruised. She said to come along straight away!!! At Truro they don’t like drains being in for more than two weeks, mine was there for three and a half weeks.

I saw the nurse immediately, who then brought in a consultant, and a phone call to Exeter made. Yes, the tube could come out!!!

The nurse thought the bruising and hardness was due to a blood clot or a haematoma. The tube was unstitched, and came out quite freely. It was blocked!!! Not allowing the blood and lymphatic fluid to drain away as it should. She then massaged, or ‘expressed’ the area, and lots of ‘stuff’ came out, and it really did lessen the hardness of the tissue below the surface of my skin.

I now have a plastic drain bag stuck to the inside of my thigh, carefully placed over the hole/open wound, but no invasive plastic tube!!! Yay, so much more comfortable!

The consultant drew a line in black pen, showing the outline of the hardness below the skin ~ if it spreads any further, I’m to get myself back there as quickly as possible.

I then asked the Macmillan nurse about possible drugs trials at Truro, and she said she would put things in motion for me to see the oncologist here, instead of having to travel all the way to Exeter on a monthly basis. We’ll see.

So, I end my day, minus the invasive plastic tube inside my thigh. The area still remains bruised and swollen, but hopefully now any further fluid can drain out properly, and the wooden feeling will subside.

Dec2

A really long day!

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Monday 2nd December

Have just returned from a long day trip to Exeter.

I had an appointment at the dressings clinic, to see whether the drain in my leg was ready to be removed ~ no, not yet, as I’m still losing too much fluid. So plastic bag changed, and the site cleaned up.

Hmmm, another week of dangly bag between knees!

There was also a Macmillan nurse there who had a printout of my results, following the groin dissection three weeks ago: of the four further nodes removed, only one more contained melanoma, and that was ‘encapsulated’, no spread to the surrounding tissue which had also been removed. Three out of six, in total.

Does that sound good, or maybe OK?

She then spoke for a bit about the Combi-Ad drugs trial, I have been offered.

My wonderful plastic surgeon, who was conducting his own clinic, then popped his head round the corner, to say hello and check the wound, scar, red bruising, hot feeling, wooden thigh, that I now seem to possess! All seems normal, he’s happy with the progress being made, and will now refer me on to an oncologist, where I will find out more about the trial.

So, all in all, not a wonderful day, but not dreadful either.

Nov25

Dressing. Drain. Disappointment.

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Monday 25th November

Spent a lovely weekend with my family; lots of visitors, bringing more flowers, cards, chocolate, and much love!

My wonderful next door neighbour also presented me with a huge bunch of flowers ~ she had seen me returning last Monday, noting the struggle I had getting out of the car. She saw the pain I was in, and told my husband that her heart bled for me, and that I would be in her prayers.

Today we set off early on a trip to Exeter to the plastics clinic.

I had a left groin dissection fourteen days ago, was discharged a week ago.

Firstly I had the white dressing removed from a quite long scar: no visible stitches, just a very long, tidy line. The nurse cleaned it up a bit using sterile water, but did not then put anything back on it. Time to let it heal in the fresh air, so to speak!

I really, really was hoping for the drain to be removed, but no such luck!

As I’m draining 120 + mls per 24 hours, the drainpipe cannot be removed. That is way too much apparently!

I saw a nurse practitioner, who checked this out with the doctor.

The amount needs to be less than 30mls.

Plus, the drain fluid is still dark ~ a nice shade of merlot; it needs to go from red, through rose, and on to white wine!! (Well that was the analogy the consultant used!)

So, it’s back again in a week.

Must try harder!!!!!

So I’m stuck for yet another seven days with the dangly, plastic, collecting bag!!

I still feel rather uncomfortable, and the tube is leaving the top part of my leg bruised and puffy.

Probably, deep down, I knew the plumbing pipe wasn’t going to be removed today ~ I am an impatient patient! It’s just that two weeks with a foreign body stuck up the inside of one’s leg is not the happiest of thoughts! Still, if it is to be, I shall not argue with the professionals! Perhaps in another week’s time it will be gone.

Nov22

Another Pyjama Day

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Friday 22nd November

Slowly, slowly, day by day, I try to be a little more active. I know I’m supposed to be a bit more mobile, but it really is an effort to actually get out of my warm and toasty bed!

I come downstairs at midday, potter about a bit, make some phone calls, and then my husband brings me a cappuccino and the Friday papers; I lounge on the sofa for the rest of the afternoon, elevating my leg.

My dinner was cooked for me: wonderful seared tuna, broccoli and grilled tomatoes. I soon decide to go upstairs to lie down, and a lovely cup of tea duly appears at my bedside!!

I’m still feeling very tired, and my left leg/thigh is quite stiff/heavy/numb. I will be sooooooo glad when the tube is removed ~ most uncomfortable and unsociable.

There’s no point in getting dressed because I won’t be going out, not with the plastic drain bag still attached to my inner thigh ~ I’d be hobbling along feeling most self-conscious. So I remain in my pyjamas yet again. Up until this episode I had never owned any kind of nightwear or ‘lounging-around’ gear! No need. And yet now, I have a new selection of ‘outfits’ in which to feel lazy, sloppy and relaxed! As soon as I am able they will all go to the back of the wardrobe allowing me to wear normal clothes again. Almost two weeks in nothing but hospital gowns, nighties or pyjamas is surely enough for anyone!

Nov21

Time to get out of bed!!

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Thursday 21st November

It really is about time I got out of bed and had a proper clean up!!

This thought was prompted after I’d asked my husband to pull off the tight compression stockings I had been wearing for the last ten days, and I saw his nose screw up. Oh, do my feet smell? Hmmm, only a little bit!!

Right that’s it, make an effort, stand in the bath tub, and have a damp flannel scrub-up. I can’t yet have a proper shower, as the wound hasn’t healed, and the tube sticks out of a hole in my thigh ~ must guard against infections and the like. Still, I think I now smell better than I did!

I then lean over the bath precariously and wash my hair with the shower head ~ it is so, so good to have clean, shiny hair again.

My lovely husband then rubs coconut oil on my feet and legs as they had become very dry beneath those white, nylon stockings!! (I can’t bend down to reach my feet ~ plus it’s so good to have a mini foot massage!!)

I then put on a really loose pair of warm pajamas, and come downstairs; the first time since arriving home on Monday.

I phone my mum to tell her that I’ve cleaned up, am sort of dressed, and ready to accept visitors ~ if she wants to see me she’d better come round soon, or else I may go back to bed!! We have about half an hour chatting, drinking tea and cuddles, then my husband takes her off to the supermarket.

I make some toast, potter about in the kitchen, fold some laundry and do some online banking. As I have been standing for much longer than during the last three days, my drain bag fills up by 75mls in four hours ~ whoops, I do need to rest, and elevate my leg. I spend the rest of the afternoon on the sofa, and am visited by my son, his girlfriend and their lovely little puppy.

They bring me a beautiful silver necklace with a green amethyst, so unusual and so thoughtful.

I need to go to bed soon and stretch out my leg so that it is horizontal. All this getting up and moving about leaves me quite tired. But I am thankful for a great day with spent with family.

Nov20

Rain and Drain

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Wednesday 20th November

Another typically Cornish November day: a howling gale, driving rain and chilly temperatures. This is not very conducive to me getting out of bed!

So, I’ve been under the duvet all day. The medication makes me all dopey and dozey.

I had thought about making an appointment at the surgery to see the practise nurse to change my drain bag. It had started to come away, and lose its stickiness, but as it was so cold, so wet, so windy, (plus I didn’t want to get dressed with a plastic bag dangling down, between my knees, to go and wait in a germ ridden place), I didn’t go.

So I changed the bag myself!!

Ooohhhhh.

I had to peel the gel adhesive away from my skin, thread the plastic tube out, and then put the new sterile bag on.

Just hope it’s secured in the right place.

Seems ok.

My husband helped, and gave support.

I cried when I’d finished. I felt all hot and shaky.

Bleurrgghh.

I can feel the top end of the tube right up at the very top of my leg.

I’ll be so pleased when it’s finally pulled out, and I don’t have to go through this any more!

Plooooooppppp.

Ha.

60mls in the last twenty four hours, so it is becoming less.

My husband went to the supermarket this morning, and whilst having a coffee in Costa, the little, grey-haired old lady that comes and chats to us, asked about me.

She then came back a few minutes later with a beautiful bunch of coral roses for me. Ahhhh, bless.

And the wind still blows the rain off the sea against the bedroom windows. How I wish it would blow all my troubles away.