WonderWoman 6 years ago
Edited by WonderWoman 6 years ago
Hi I'm new, my husband has stage 4 Malignant Melanoma. It began with a mole on his arm, I told him he had a horrible mole, he took it as an insult and despite my nagging, pleading and even making appointments for him he didn't mention it to any nurse or doctor. A year later a friend also told him he should get it looked at and my father had a melanoma removed from his face which was just turning malignant.
Hubby was then referred, had the mole removed and sent away and the news came back it was stage 2 cancer. He had tissue removed from his arm, the mole had been on the back of his arm. He was so affected by the original diagnosis that he semi retired, but after he recovered from the op he went back to work, and got back to playing badminton and golf too.
They didn't find any cancerous cells in the tissue removed they told us, but because he had had it for at least a year there could be seeds of cancer around.
Got to his 1 year check, he complained of tenderness but no lumps were felt. A few weeks later he told me he had a lump.
It was cancerous, and the tumour and his lymph nodes were removed. He managed to split it open after he came home, had to get patched up. No cancer was found in the lymph nodes.
He was told he was eligible for drugs trials - to see if they could prevent it coming back, and was referred to a different oncologist. She told us he would have to have 6 monthly scans because if it came back it would be on the liver or lungs, it wouldn't be obvious from touching, and that shook me up.
Then we heard the trials had taken too long to set up, he was no longer eligible.
First 6 month scan, oncologist said it was good he was working again and playing sport - but it had come back on his spleen and chest wall.
Now it isn't operable so he was started on the immunotherapy drug that we were told he would have been on if he had made it onto the trial.
At the 16 week point he had the scan, I didn't need the scan to know he was so much worse, and we had the news that the drug hadn't worked and the cancer had spread to a lymph node that sits above his stomach.
He had some radiotherapy on his chest and was started on a different immunotherapy drug at the beginning of this year.
Since then he has been hospitalised a number of times with infections, one was infection of the gall bladder and he was in for 6 days. They scanned him then and said the cancer was still growing and maybe treatment should be stopped.
He was in bits, and since then has been putting his affairs in order, disposing of some of his things, and trying to get work done on the house and friends in to help out in the garden and house which has really upset me a lot.
Then he was offered the chance to be referred for drugs trials in London or Oxford and accepted, and now it seems he has the right mutation and we are about to find out what they want to do. At the same time we were told the cancer has grown and now there is a lesion in his brain, but because he is going on with the trials he is to have that treated by radiotherapy.
He has also been told he cannot drive any longer, his last little bit of independence has gone. He cannot do any of the carpentry he did, or even little jobs round the house and that upsets him a lot.
Walking is difficult because he is short of breath.
He has been told the trials only have a 1 in 20 chance of success, there is lots of travelling and possible side effects but he wants to try. He is a 59 year old father and grandfather, he dotes on his little grandchildren and doesn't want to die yet and hopes he will be the 1.
I have already found this site useful for info on getting benefits which nobody else has told me before.