Experiences of melanoma

Sarah's story

Peter my 4th and youngest child had had a fairly large mole on his neck for as long as any of could remember. He called it his " special spot" as when he and his twin were very young it was a useful tool for strangers to identify P from R . I first showed it to my GP when he had his preschool injections and was told it was nothing to worry about but to come back when he was a teenager if he became self-conscious about it.

In 2008 when Pete was 12 he complained that the boys at school had named the mole Bernard and he wanted to get rid of it . I realised it really was quite large so off we went to the GP. He reaffirmed it was not dangerous and there was no rush Pete insisted so we were referred. 2 month wait for consultant appt then another 6 weeks for the op .Just 2 nights before the op was due the mole gushed with blood and for the first time alarm bells rang in my head.

Jan 2009 saw Pete and I back in out patients for post op check. As we arrived Pete announced he had discovered he was the only one in his class to have had an operation.......an hour later I just about heard him tell me he thought he was the only one in the school to have cancer!

The consultant did not pussy-foot around and told us both that Bernard had been a 9.4mm malignant melanoma .As an ex-nurse I knew only too well what that meant. I was also furious with him for telling Pete he had cancer .I am now thankful to him .....I don't know how i ever would have done AND more importantly it made me stay calm I could not freak with Pete there. He should have gone to school then but somehow I called into the school office told them what had happened and that Pete would not be in school until tomorrow ...we then went to subway for lunch!

From the beginning P told all his friends he had cancer and I realised they had no preconceived ideas and to them it was just a word .....it was the parents and teachers who had a problem with it  and believe it or not I received a fair amount of criticism.

After every scan imaginable was done (most of them more than once) it was established he was still stage 3 and so surgery was still an option......but finding a surgeon prepared to perform a radical neck dissection and parotidectomy on a child took another 6 weeks. The longest of my life I think. (March 2009).

Pete recovered quicker than we had dared hope out of hospital after 3 nights and back at school( looking like, in my eldest son's words," A hamster who had been strangled with barbed wire") in 8 days. The wound itself took weeks to heal and he had numerous infections  however we made it.

The next few months was taken up with getting opinions as to whether there was anything we could do to make a recurrence less likely but after going around in circles  it was finally decided to just wait and see with 4 weekly ultrasound scans by the same radiologist ..." The scary Polish lady " who he now adores. All was well and we were beginning to relax a little ,even started shouting at him again!! ,when just 2 weeks after an ultrasound scan, he felt a couple of lumps like " jelly" just where Bernard had been.

Here is where the story ends at the moment with us waiting for further surgery to remove a local recurrence, as far as we know we are still stage 3 .Pete is no angel but  I honestly hope I would behave as calmly and sensibly if I had to go through anything like this .I think he has only lost it once through the 14 months so far .For a few days after the dissection he drooled constantly which made his chin chapped and sore .When it finally broke down and started to bleed the first tears dropped. I pointed out that crying would actually make things worse. After throwing a book at me ...hard...he started to smile as well as his poor little face would allow.

We were not sun worshippers, Pete had had one abroad holiday before diagnosis. I think the only message I intend is that melanomas can happen to anyone at any age. The first consultant did say to me when he confirmed the diagnosis  that he had considered a melanoma from its appearance but ruled it out because he was only 12. In the run of things I don't think that 1 month would have changed anything though.

It seems I was wrong when I finished our original story in February 2010. A routine CT scan to “see where we were up to” revealed lesions in both of Peter’s lungs. He was feeling completely well and as I could see no treatment was going to be offered fast, we headed off on what we feared could be our last holiday with him. Due to the unpronounceable Icelandic volcano, we were lucky enough to be stranded for another blissful week.

Fairly soon after, Pete became increasingly tired and unable to cope with a full day at school. The lesions were growing fast and we began to realise the significance that his being under 18 would come to have.

There are/were a few promising experimental treatments but none of the drug companies were prepared to take an under 18 on their trials. I asked to be referred to an adult oncologist and Dr. Lorrigan at the Christie agreed to see me and lead our paediatric oncologists who had no experience of melanoma. Dr. Lorrigan found Pete to be Braf positive and eventually secured a course of Ipilimumab from Bristol Meyers. They insisted on Peter knowing his full diagnosis and prognosis at this point so he could consent. He took it in his stride as he has everything on every step of the way.

‘Ipi’ was started in July 2010 but by August the original neck tumour was growing again visibly and so things seemed a little bleak. However, after the treatment which Peter tolerated well (still attending school for some of most days) the lesions in the left lung had gone, those in the right had shrunk a little and there was no spread.

Things stayed stable except the steady growth of the neck tumour; by December 2010 this was the size of a mango and threatening to break through the skin. 5 weeks of radiotherapy worked better than anyone thought and even now in March 2011, it has not begun to stage its comeback.

We thought we were due a few months peace from it all when in February 2011, Peter began to suffer vomiting episodes and headaches. An MRI in March proved my worries to be founded, and a large lesion in the frontal lobe of the brain was revealed. March 9th, 2011 saw us at Alder Hey (which I’ll take a moment to say is a truly fantastic hospital!) for a craniotomy to remove the lesion. We were lucky there was only one tumour meaning there was no infiltration of the brain. The first night post-op, Peter had a massive seizure followed by a respiratory arrest.

As the crash team ran in, I confess I ran out; the longest 10 minutes of my life followed. Another MRI showed the tumour had been completely removed and the fit was thought to have been caused by a coughing fit leading to a rapid increase in inter-cranial pressure. Peter & I are now home, stitches due out today after he has popped into school to show them off to his friends!

The lung mets are growing and causing a distressing compression cough. At present, we are hopeful that Glaxo Smithkline will supply us with their latest treatment…

Update Sept 2011

This irritating  cough (caused  by a tumour  constricting  Pete's bronchus) seemed to change  overnight  from a nuisance  to such a  relentless  one  that P was admitted to our local hospital. It was so persistent that it made it impossible for him to speak, eat or sleep. A palliative consultant  visited  and suggested  a self administered IV  morphine pump , usually used for pain  but here to suppress the cough reflex. It worked  however the dose he required  quickly increased  and he seemed to be either asleep or coughing .

He was very aware of how  ill he was and looked and asked for no visitors but  Me, Dad and big brother, he was very concerned  about upsetting and worrying people. This was not how he wished to be remembered.

Two weeks passed in this way until we received the go ahead  for BRAF  inhibitor (April 2011) by then the only way to get P from Stoke to the Christie was via ambulance with his IV,  oxygen etc. He couldn't even stand. I was  very afraid we would be told  he was no longer well enough.

Its worth mentioning here  that as Pete was still only 14 the drug was being given to us on compassionate grounds but although it is my signature on the consent form  Pete was fully aware of the potential risks and benefits. I have been accused of cruelty " delaying the inevitable"  but the final say was all his.

We have been lucky and I have been thanking God consultant and drug company ever since.

Within  36 hours (less) the cough stopped, Pete stopped pressing his morphine, the doctors started to hear the air flowing into his lungs again,  nurses were coming in to see for themselves the miraculous change in this poorly child. 3 days later he came home. He has experienced no side effects whatsoever.

Very quickly he regained the  strength and weight he had lost. The first CT  scan at 6 weeks showed the 2 largest tumours had shrunk from tennis balls to ten pence pieces.

Most importantly the "not for resus" was scribbled out of his notes.

We have just been able to enjoy an active happy summer and last week Pete started full time school taking 4 favourite subjects last years work and this years concurrently.

Pete seems a natural at this one day at a time lark, I am still learning.

Update May 2012

GSK 2118436 bought us some really good time when Pete was well enjoying a normal school life with his friends .We knew it was unlikely to last and pretty much as the stats predict 7 months after starting the drug by Nov. melanoma was starting to rear it ugly head. The tumours in left lung and mediasternum were growing .

Our oncologists scanned, talked, planned, rescanned and talked! Radiotherapy was mentioned, surgery was discussed but again and again it was decided as Pete was asymptomatic to keep taking the meds and watch and wait .The drug slowed things Pete felt well we visited Norway Iceland saw loads of heavy metal ( Pete's love ) .

However by March something had to be done, Peter started to have a droopy mouth and intermittent tingling fingers...... MRI showed 2 new brain mets so off we went to Alder hey for more neurosurgery .The surgery was easier this time despite there being 2 tumours and we were home within 5 days .The tumours were sent from Alder Hey to the Christie as Doc Lorigan was hoping to obtain funding for a treatment requiring the tumour infiltrating lymphocytes .sadly the tumours didn't quite yield enough.

Shortly after this surgery Pete had his 16th birthday and although we most definitely work together the decisions are now his own.
P agreed to have a lung tumour removed to add to the lymphocytes .I f we had known quite what was involved perhaps we would not have agreed however too late now! The procedure was not keyhole and led to P spending a weekend being ventilated on ITU after his lungs collapsed As he was drugged with ketamine he sang comfortably numb to us all. For a day or 2 it was touch and go and then for a few further days it looked like he would refuse any other treatment .The shock knocked his normally laidback personality for 6 , he told me he was sorry if I thought he was letting me down but he thought he had had enough. I backed off realised this was a decision HE and only HE could make and encouraged him to talk to his paediatric oncologist and the ITU consultant.

Yesterday we came home , Pete stubborn as ever is refusing all analgesia to clear his head , he is regaining strength and positivity and I feel he will after a few weeks break go with the ACT now we have funding .Fingers crossed the ACT happens and i will have another instalment to tell .

Update December 2012

Dates for TILS (ACT) were set and then melanoma would do something sneaky and cause more delay. I have to confess I had given up hope but Pete and his team of oncologists (Lorigan, Hawkins, Whitfield, Murray and Kumar) battled on. He was given a sharp blast of radiotherapy to the chest followed by stereotactic radiotherapy to a fair few brain mets then suddenly Aug 1st we were off ... it happened.

TILs therapy could be a story by itself and Pete and I spent an intense 18 days on the Transplant unit at the Christie .It was tough but his recovery was fast. Within 10 days it was obvious to all it had done some good and I was able to get insurance to take him to see the Italian grand prix. He applied and started a course in animal management, a fresh start after missing so much school. The first scans showed promise .... BUT then Pete started to be clumsy, he lost temperature sensation in his feet and was staggering around like a drunk then he started to fall..

We all assumed the melanoma had reached his spine but an MRI of brain and spine showed the problem to be radiation damage. He continued to deteriorate until finally on Nov 10th he suddenly became totally paraplegic. He could not feel anything from chest down and no control of bladder and bowels. It is thought there has been an interaction between the radio therapy to his chest and one or other of the novel therapies he received, probably the TILS. At present the melanoma is still shrinking and Pete is well but is being cared for on the spinal injuries unit.

Once more he has astounded me with his acceptance (" better be in a wheelchair then dead") a total lack of anger or despair at the unfairness of it all. My laid back placid Pete , skinny where he was once a bit tubby, is working hard in the gym with his wonderful physio, Jazz, to regain his independence. He has already learned to transfer, dress himself and is enjoying learning wheelies and other wheelchair antics designed to make my heart stop! He is determined to see Iron Maiden in June (how the devil am I going to get him to Paris?? ) Silverstone, naturally and considering a course in electronics............ where there's a will there's a way.


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