Melanoma

[VictorHugo]

Just wondered if anyone has experience of this, hopeful stories would be great...asking on behalf of a friend who could use some cheering up.

Thankyou.

depends on how big it is and if it has spread.

on the best side your friend could just have it surgicaly removed and be on her way. otherwise expect a shorter life.

to be honest if you have melanoma you need to radically reassess your lifestyle as this is not something that is a fluke one off.

I had melanoma in 1995 & I'm still here. I had a 30% chance of survival beyond 5 years & I've been all clear since.

It was a scary time & there is a family history too. I had my mole removed (in my groin) & then a wide excision followed. Not particularly pleasant but a small price to pay.

I needed no further invasive treatment but had regular follow ups for 7 years.

I hope your friend makes a good recovery.....it is very possible.

Thankyou Demolitionduo - that's very heartening to hear - I hope you continue to be healthy with no more problems.

It's good that you can beat the odds like that!

moo - Jesus, so you're saying it was her fault?

No, I'm not going to stop at that, I think you need some education here - and anyone else reading who believes that tripe.

I would appreciate clarification of why exactly you believe this isn't a 'fluke one off' as you put it.

Are you assuming my friend is a serial sunbather? Wrong - in fact I have never known her to sunbathe.

She always wore a hat in the sun.

She hasn't been anywhere NEAR a tanning bed in her life.

She has a very very healthy diet.

Now what exactly do you suggest she does about this 'lifestyle' in the time she has left?

FFS. If you believe that you can control whether you get this disease as easily as that, you're sadly, sadly mistaken

Sorry about the rant but I can't think of a more insensitive, unhelpful reply than the one you just gave.

Hi VictorHugo,

Sorry to hear your friend is going through such a horrible time, she must be very scared.

My nan died from a malignant melanoma some 20 years ago BUT and this is a big BUT we are talking 20 years ago and it was not diagnosed until Post Mortem as my nan was always very hardy/brave and just put up with the immense pain she was in and died before a diagnosis could be made.

My feeling is that whatever is wrong it is vital to get an early diagnosis. My FIL for example had prostate cancer, had a very early diagnosis/treatment and was given the all clear last year.

I hope your friend makes a full and speedy recovery, things have improved so so much over the years and we all stand a better chance of recovery these days, especially if we seek medical help quickly.

All the best.

Thankyou LisaD, you're really kind...I was dreading comeing back on after my rant this morning, didn't want to have a big fight with someone.

I'm so sorry about your poor Nan. My Great Nanna died from breast cancer, she refused to see the doctor and it was just too late when she did.

Keeping everything crossed anyway.

VH, my melanoma was in my groin on my labia & not a place where the sun had ever shone!

Yes, many melanomas are down to careless sunbathing/tanning, but many are down to other factors....mine likely being hereditary.

There isn't always a place to lay the blame & to be honest, once you have it, there's little point trying to find something to blame anyway- your energies need to focus on getting well.

If a lifestyle change is needed, this can be addressed afterwards. I am sure your friend will come to terms with the diagnosis and if caught early, the success rates for full recovery are improving all the time.

Hi DD, thanks again - yes I am fairly sure my friend's is at least partially caused by genetic bad luck, I think there's more and more research suggesting that most melanomas are indeed genetically indicated. Some respond to gene therapy...

Unfortunately in my friend's case there was a long term misdiagnosis and it wasn't caught very early. I should have said that at the start really. It's such a scary illness once it's already taken a hold.

It was good to read that you were given such a poor prognosis and have been fine for so long now - that really helps.

sorry that sounds funny...not glad about the prog...but beating it is brilliant I hope you know what I mean!

I know what you mean

I am sorry your friends prognosis is not as good as it could be. However, don't give up hope. I just refused to be beaten & I am sure my positivity helped.

Love to you both. I know it's not easy.

VictorHugo I had a malignant melanoma removed from my shin bone 6.5 years ago at 26 yrs old.

I went to docs 3 times over a year before he finally believed it was different from my usual moles and removed it so I thought I was a gonner.

Turned out it was thin and hadn't spread so it doesn't mean it had always been cancerous, it must just have started to become so.

I had an operation to remove a larger section from the front of my shin, didn't need chemo and had check ups every 3 years. They told me they would not expect to see me ever again if im careful in the sun, which I am.

I wish your friend all my luck and hope she feels more positive soon.

moocowme what an insensitive horror of a human being you are - and thick.
"expect a shorter life". Is that a message you usually give people who are hoping to fight cancer you total freak.
Even if her friend did sunbathe too much - which she obviously didn't, it's sunbathing, not heroin abuse with a spot of prostitution thrown in.

I will ignore moocowme's post.

I have been treated for a mercifully thin melanoma 1.1mm which was surgically removed. Been advised that I should have no further trouble but it does "throw you off kilter"
Can I suggest this link - its a very helpful forum where your friend may find advice and support? That is if your friend is not already aware of it?
www.scansol.co.uk/forum/

Thankyou so very much for your lovely supportive posts and cheering stories. I sincerely hope that not one of you ever has to think about this awful disease again as long as you live!

Whensmydayoff, you were right to be persistent - doctors can't always tell when something is a problem just by looking. I'm really glad it was at such an early stage...I know that almost 100% of these never come back as they haven't penetrated the deeper tissue...so you should be O.K.

on the subject of ignorance and insensitivity, I guess some people just haven't had any education - or else wish to distance themselves from the possibility that one day it might be them, or their friend, child, parent - who suffers from this beast. Maybe it is a defence. Not a wise or kind one though.

Careergirl that's great news that you have had no further problems. Were you offered anything adjuvant, like radio? They didn't do anything for a couple of months after my friend's operation, so it just came back - but it was a much deeper one than that to start with and had already spread to the nodes.

Trying to stay positive. It's hard to find stories from poeple who were further along with it and turned it around iyswim.

Thankyou so much for the forum link. I'm sure there will be some excellent positive stories on there among the not-so - will have to filter some out for her!

Hi there
basically the suspicion was the skin lesion was melanoma so it was taken out surgically and the diagnosis made it was melanoma. Then this necessitated further surgery (wide excision) to make sure a safe margin was achieved.
All the results from that were normal and it was confirmed it was a stage 1b melanoma meaning from their point of view the surgery was curative and no radio/chemo was necessary.
Obviously go back for checkups every four months at the moment - so far so good.
They're a great bunch on that forum very supportive and helpful - really helped me through!
Best wishes to your friend she will be very grateful for your help and support.
x

Thankyou so much Careergirl...I hope your checks keep being fine!
I had a look and they do seem lovely on the forum.
I think it is a very frightening diagnosis to get at whatever stage, isn't it...the people there must understand exactly how it feels.

Thanks again x

victorhugo Having a friend like you will help immensley. My best friend was the same as you as was my DH and mum and it helps when your not alone.

I meant to say every 3 months for 3 years then I got the all clear (not every 3 years)!

I forgot to say last night, when I went through it my boss had about 5 strange shaped moles on his neck all merging together, really big. Hearing my story he finally went to get them checked out. It was Melanoma, it had spread and he did need radiotherapy. He is still here 6 years later too and never had a problem.

Wow, your boss was so lucky! Glad he is doing well - I think radio might be the next thing they try.

Hi

Can I recommend a few websites:

www.ldn4cancer.com/files/toms_story_melanoma.html

www.lowdosenaltrexon e.org/ldn_and_cancer.htm www.lowdosenaltrexone.org/ldn_latest_news.htm

forum.ldn researchtrust.org/index.php?/forum/55-cancer-ldn-experiences/

and lastly www.ldnnow.co.uk

These websites will speak for themselves. Low Dose Naltrexone is not a new drug - it has been used for drug/alcohol dependency for many years in HIGH doses. Read about it yourselves.

Dr Chris Steele has just handed a petition into number 10 for clinical trials to be paid for by NHS for other diseases such as MS, RA etc. and it works well on cancers. You can hear Dr Chris on Youtube if you google him.