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October 2, 2014 at 9:54 pm #22190
First thing I notice on looking around the forum and reading others posts is that it’s reassuring to read of others treatment and going through similar diagnose as myself, therefore I thought it might help others to put my story so far up, and it might help me too writing it all down.
In spring of 2013 a mole on my back started itching and gave a burning sensation… After a week or so I went to the doctor who said didn’t look right and referred me to the hospital dermatology department. I met with a locom at the hospital who was very old school and put me at ease with the odd story and then checked the mole. He told me that my body was trying to get rid of the mole as when we die we have very few left. Not something I had heard of but he was the doctor so went with it and was on a 3monthly check up. Typically the check up came through whilst I was on holiday, my sister was looking after the house and had been instructed to open any hospital letters, so I rang to move the appointment by a week, the receptionist cancelled the appointment and said I would be sent a new one. On returning from holiday no letter with new appointment so I rang, was told I was in the system and would get a new appointment threw… Time went on and the mole started bleeding and my concern increased, along with my wife saying it wasn’t right.. So I rang again and was again told I would get an appointment threw the post.. After another week I went to the doctors again and explained and she rang the hospital and a week later I got an appointment threw just so happened it was on the 3monthly schedule so in effect I had just missed a check up..
That appointment was the start of it all… Different doctor who said it needed to be removed ASAP and a week later the now rather large mole was removed – I was told it looked to be a harmless basal skin cancer but that would most likely be the last of it. That was a week before Christmas.
Roll onto Christmas and a letter arrives asking me to come in on the 27th December to discuss the results from what was removed.. I thought it strange to be between Christmas and new year but decided hospitals can’t really stop for Christmas and new year..
The appointment was with the senior cancer nurse in dermatology.
That was when I first heard the word melanoma and the main things I remember from that appointment was her explaining the breslow thickness and that the scale went to greater than 4.5mm and that mine was 9mm thick and did I have life insurance……..
The next few days went a bit of a blur with the odd emotional day, if anything my wife took it far worse than I did… I returned to work as I work for myself and it took my mind off it all, I am fairly laid back with a positive outlook so threw myself back into work – which was panning out to be a busy year ahead.. Late January I went into hospital for the margins to be taken bigger, a 80mm round hole and around 30mm deep was cut into my back and some skin robbed from my leg, nearly two weeks of only being able to lay on my right side and another week at home not doing much and I was back to work again, much to the annoyance of my wife to be fair who wanted me to take it easy. .
Doctors were expecting it to spread and I was constantly checking my lymph nodes, whilst working away and staying over night in a hotel I woke after having a dream where I was checking the lymph nodes in my left armpit and a voice over said “if only he had checked further back”. I woke up and checked and sure enough further back to where I normally check was a lump!!!! I got up and marked it with a cross with a pen and went back to bed as it was around 3am and it was like a dream… I awoke in the morning remembering this bizarre dream and not sure if it happened or not.. Looked in the mirror and there is the cross of pen and a lump.
Went to see my surgeon who didn’t think it was a lymph node which was apparently worse than if it was, and then checked my other arm and found another lump def a lymph node – there was then a few other checks done including a biopsy and ultrasound and it seemed to take ages for anything to happen… Along with a number of harmless fatty lumps I have had for years being removed to try and stop confusion and IMHO at that time they did wonder if I was riddled with it, but luckily they all came back as fatty lumps… I then went in for all the nodes under my right arm to be removed and the lump under might left arm removed…
Another week and a bit in hospital and a week taking it easy and I was itching to get back to work and flew to Scotland for a job…
A few weeks later at a check up with the surgeon to check how it was healing and discuss results of analysising what had been removed and the left lump was a lymph node which he said was a good thing as it meant it hadn’t spread outside the lymph system.. One of the 28 nodes removed from under my right arm was infected… He then checked and found another lump under my left arm… Doh….
His recommendation was that rather than him cutting me up once a month – 13scars since January, was that I be referred to the drug program… Seeing as his job was to cut people up and he was recommending I go see the drug doctor I keenly awaited the appointment. On doing some research I assumed I would be given vemurafenib and sure enough I was…. The side effects for the first two weeks weren’t too bad (muscle pains, tiredness, the usual light issues) but week 3 and 4 got really bad diarrhoea and loss of appetite and I found myself in bed unable to eat or do anything, on day two I contacted the hospital who told me to stop the treatment and restart a week later on a lower dose 740mg rather than 960mg… After a further two days in bed and the loss of a stone in weight I felt well enough to get back to normal. After a week I restarted the vemurafenib and apart from then having to go threw all the early side effects again has now pretty much settled down – I am now two months on, all my moles are all more pronounced both in colour and raised and the only difficult to get used to is avoiding light, burnt myself a few times just walking from the car to the house… But small price to pay… The lump under my left arm is no longer possible to feel… My first ct scan since taking vemurafenib is next week… It’s reassuring reading of people on here having been on vem for 3+ years as I had assumed two max before I became immune to it, obviously that could happen anytime but no point thinking negative.
Thanks for reading
SimonOctober 3, 2014 at 7:30 pm #65496
Thanks for sharing your story Simon! We have a wealth of good people on this site who will also share and save lives too! Please check out our video too for uplifting patients: http://melanomainternational.org/events-webinar/patient-experience-video/#.VC744vldVSROctober 5, 2014 at 3:41 pm #65497 Thanks Catherine.October 5, 2014 at 5:50 pm #65498AnnieoParticipant Hi Simon,
Wishing you all the best on your journey.
As you said, it is so helpful to read other peoples stories. It is difficult for friends and family to understand what we go through on a day to day basis. Here, on this forum, you know that you are understood. That in itself is priceless therapy
AnneOctober 6, 2014 at 2:30 pm #65499
First ct scan tomorrow since being on vemurafenib and get the results from that next week. Also got a medial to see if they will let me have my race licence or not tomorrow morningOctober 8, 2014 at 12:51 am #65500AnnieoParticipant
Good luck with CT scan Simon
AnneOctober 16, 2014 at 4:41 am #65501
Ct scan results were good. They can no longer find the tumour in my left lymph nodes and no others found
Only new development is pain in my hip, feels like a trapped nerve, tonight is the first night its kept me awake all night. Will make an appointment for pain relief/check but no idea if its related to the vem or not, could just be a coincidence.
SimonOctober 17, 2014 at 2:35 pm #65502
Let us know how you are doing! Hope the pain resolves..October 20, 2014 at 2:39 pm #65503 Confirmation in writing that the one tumour has disappeared after three months of vemurenib, so good news for once.
Pain in hip not great but can live with it. No idea if it’s treatment related or not.October 30, 2014 at 3:36 pm #65504
Hip pain got so bad over the weekend I was perscribed naproxen which took the edge off it but still very difficult to walk and v painful to drive.
Prescribed another pain killer cocodamol which did nothing. Now bed ridden with the pain.November 6, 2014 at 10:53 pm #65505
Things got a bit complex. Got so bad I went to a&e last night and was admitted. MRI scan today reveals melanoma in hip area. Another MRI tomorrow to check in more detail as they focused on the spine. So maybe a new drug or radio theropy coming.November 6, 2014 at 10:57 pm #65506 Annoying the ct was nil but it was in my hip as Imwas in pain and the vemurafenib works on the tumour under my arm.November 7, 2014 at 12:33 pm #65507 We’ll be thinking of you. Are they doing radiation on the hip?November 7, 2014 at 12:53 pm #65508LesliParticipant Hi Simon,
I am sorry to hear about the pain in your hip, which seems new to your earlier posts in October. I had a similar “mixed response” while on Zelboraf. The good news is the inhibitors can scale back much of the cancer (I had a very high tumor burden) and buy some bandwidth, so to speak, to give the next treatment time to kick in. This was our strategy. I developed a new and painful tumor on my spine while seeing regression elsewhere. I switched to Ipi and within a month the pain was resolved. The second specialist I met with (John Thompson in Seattle) suggested that the response rates for Ipi are steadily improving thanks to the regression bandwidth that the inhibitor combos offer (at least folks in the condition in which I showed up). I have found the Zelboraf–Ipi sequence to have been very helpful, and that was after much debate!
Pain is emotionally demoralizing, so I hope you are able to manage it with some good prescriptions.
Best, LeslieNovember 7, 2014 at 1:28 pm #65509
S cond mri of abdoman and pelvis shows a gross/mass in right side of spine hence the issue with right leg and hip pain. Also into the bones of spine, not sure how many. Awaiting treatment plan now. There is talk of radio and / or another drug but not sure what yet?
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