Experiences of melanoma

Rory's story

Rory (42) discovered a mole that had blackened and gone "funny" on the right side of his chest below his nipple in May 2008 - didn't do anything until end of August - foolish - but that's the way it was - he has many moles, fair skinned, and had 3-4 moles removed "just in case" when he was 17 (1986) - he is not a sun-worshipper at all but spend his youth in Africa and did a lot of sailing.

All his treatment has happened in France because that is where we currently live - it may give everyone an idea of how things are done "supposedly" in the country that has the "best" cancer treatment stats in Europe.

As soon as he saw the GP he was referred to a Dermatologist (4 days later) who sent him for an excision within 2 hours with a skin surgeon. They took off the mole and sent it for analysis - a week later we had a call to come in for a Wide Excision as the results had come back as 4mm SSMM with nodular component and highly mitotic.

The wide excision was an overnight affair - scar about 15cm in Nov 2008. We were referred to the Institute Gustav Roussy in Paris where they did a full body CT scan, photographed everywhere (even the bottoms of his feet), various blood tests.

We then went religiously every 3 months for scans and dermatological observation - at our visit in July 2008 one of the junior interns palpated a deep node that she thought was a little bigger than normal - sent for an echograph (ultrasound) which noted a slightly enlarged lymph node but nothing suspect - at our October check - at the echograph the Dr initially said all clear and then when I was insistent he look carefully at the deep node they had palpated 3 months earlier he decided it looked suspect - it pays to be insistent - he decided to do a fine needle aspiration on two nodes - the results were back in two days - positive one 9mm macroscopic and one microscopic - CT scan showed the macroscopic one only - We had a PET scan - nothing unexpected.

We had an axillary node removal at the beginning of Jan 10 - removed 7 nodes and only 2 were malignant - quite relieved for now - he still has a drain in 20 days later - generous with his lymph fluid - but his arm is quite stiff and thought he has no infection he has some nerve tingling and his muscles feel tight - he has done a bit of physio, but will now be doing more as the stitches have healed well - no lymphoedoema or seroma - but their policy is to leave the drain in as long as possible - the district nurse comes every day to change the dressing and record lymph flow - we feel this is a bit over the top but nerveless the care is good - he will be offered an adjuvant therapy on the 1st Feb - we are not sure yet which one/ones but either vaccine or chemo - we will keep the site posted - the care we have received from prevention to surgery has all been excellent - I will say that the reason the French have better treatment results is not so much because the treatments are better but because they are very rigorous - almost draconian (threatening to withdraw health cover etc) - with their routine scans/smears/check ups - so people are more aware of problems a bit earlier. But otherwise the care can be patchy as in UK - we were advised to go to Paris for our treatment. 

UPDATE Aug 2010:

After 5 weeks of lymph drain - it was removed - since then a bit of oedema when it is hot or when he has a scratch or bite on his arm - some tingling/numbness from time to time. We were offered two trials Mage 3A (for which he tested positive) or Ipilimumab double blind - we chose the Ipi - both because of the better sounding interim results and because we were timed out of the Mage 3A (because the sample testing took too long). Started the Ipilimumab Eortc trial in March - 1.5 hour perfusions at 3 weekly intervals, with blood tests and skin checks. No real side effects so we are either on Placebo or one of the 40% who don't get obvious side effects. He had a few high readings of Creatinine Kinase, which may be explained by sustained periods of exercise. We had the scans at the end of the first phase of treatment (after 4th perfusion) and had nothing untoward to report fortunately - they removed two lesions that looked suspicious, which both turned out to be dysplastic naevi. In Sept 2010 we are due for another perfusion of "Ipi/placebo" and further skin exams and scans - fingers crossed.

UPDATE December 2012

After being on the Ipi double blind trial (assuming we were on the placebo) for nearly 2 and a half years - the routine three monthly scan threw up a growing tumour in his abdomen (quite shallow ) and several mediastinal nodes around the heart and lungs. In view of the number and position - they said best get on a trial asap - luckily Braf came through positive (the first time 2 years ago it didnt - so its worth being retested if you did it a while ago as the new tests are better) - After copious baseline tests - scans(MRI and PET) bloods (12 phials full) feet and hand photos, skin snip, eye tests , ECG etc. He started on the GSK Combi V trial - he was selected for the Zelboraf (Vem) arm instead of the the Dabrafenid AND Trametinib arm - slightly disappointed as the Braf and Mek combination seems at first glance to last longer. He started his first pills (8 per day) on the 19th December 2012 - no side effects as yet - but early days.  

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