Hi to whoever may be lurking!
I was wondering if anyone has tried any of the trial treatments for malignant melanoma and if you have could you help me understand how they work and any side effects they bring on. I have been informed by my plastic surgeon today that he has referred me to te Oncologist to discuss trial treatments that are available. I have been reading up on Gene therapy, and this is one avenue I could take. I understand that there is a newer vaccine too. Thought I'd ask for people's experiences before considering them.
Any advice/info would be greatly appreciated.
Thanks, Natasha.
Just found out this afternoon that I have been randomly picked for observation only on the trial of Avastin to prevent recurrence of melanoma. Feel like crying... in fact I might.
I know if I had got the drug it might not have done anything, but at least if would have given me some hope and made me feel as though something was being done to diffuse this ticking timebomb!
Oh no, Marsha...I'm really sorry to hear that. It would have been a real boost to have been picked for the drug, and I'm not surprised you're so pee'd off. Even though, as you say it wouldn't be a guarantee, just the sense of trying a new approach would renew your confidence.
Does this mean it was your one and only opportunity to be put on it?
Hi Marsha,
Sorry about that. I can imagine how you feel but also remember they are trials, and experts have ne proof that they are effective yet (I know that's no consolation). Also, you may have escaped some nasty side effects from the drug.My oncologist told me that I need to eat well (lots of fruiy=t and veg), drink plenty of clear liquids, get plenty of fresh air and some exercise (the latter is a bit difficult, but trying to have a few small walks!). So, am trying the healthier lifestyle. Gotta be worth a go!
Tasha x
I don't know anything about this drug, but is it a case of the old postcode lottery or is it a trial with some people in the control group? I hate it when we are two-legged rats, just viewed as part and parcel of their statistics. I'm very sorry you haven't been given the opportunity, Marsha and it must be dispiriting when you are battling as hard as you can, not to be given the armour to fight in, but maybe as Natasha says, the side-effects would have been so unpleasant. Yes, is it just this ime you have been denied it? Will there be a later opportunity? Lots of love. I hate to think of you downhearted as you are a really fantastic prop for the rest of us, and give me lots of laughs when I am down. xxxx Penny
Hiya Penny.
Marsha - correct me if I'm wrong, but I think they are studying 2 groups - those who take the drug against those who don't, they then measure success rates in each group, but I'm not sure how they choose people for the trials. It does sometimes seem a bit unfair. I was diagnosed over 10 years ago, and I have only just seen a oncologist for the first time which seems a bit wierd to me. I think Marsha has said she has never seen one. I have been treated in four hospitals and this is the first time I have ever had the opportunity to meet one. I do think though it is mainly because (from what I'm told) surgery is the only known way to treat melanoma, so that's how specialists seem to treat it. I get so frustrated with the disease because I'm always told that drugs don't work on it, so I can imagine it must be doubly annoyong when you are denied a trial.
At the mo I'm trying to stay healthy and positive (I hate that word, but I really believe that it plays a big part in your health). Just need to find a type of exercise I can do with my limited movements! Ha, maybe I wont be doing the Decathlon just yet....
Take care Penny x
Yes, you're right Natasha, it was just two study groups, those who get and those who don't get. You're randomly chosen by computer and in my case "the computer says no". I don't suppose I'll get another opportunity, well actually, I know I won't get another opportunity for this trial, it's only open to stage 2 and stage 3 with spread to lymph nodes only. So any further spread and I'll be outside of their study group. And to be considered again, I'd have to have another episode, something I'd rather do without!
Like you Natasha, I've only just been referred to an oncologist, and whilst it's comforting in one way it's worrying in another. If I were to get another new melanoma, would he know what it was?
Ah well, no use worrying, just got to get on with it!
I need a bit of a lifestyle change too, and excercise is top of my list.. yoga perhaps... but without groin stretching moves! Swimming's out, people would stare and point! I'll start with a walk to M&S at lunctime!
Hello all,
I have been offered Avastin trial if my lymph nodes come back positive this time,
last time they came back positive, so had groin dissection, but wasnt
offered trial.
I believe that you have to fit certain criteria as Marsha said.
Stage 2 or 3 with pos lymph node involvment.
I will deffo go for it if I get chosen!!!
that's the problem, darn computer gets to choose.
I'm sorry you didn't get it Marsha, hopefully I will be clear this time,
but ob ill keep you informed.
They build you up to think that perhaps this could be the one and then you're told you might not be the one that gets a chance. (does that make sense)?
Anyway guys in the words of Bon Jovi keep the faith.
Hello all,
I have been offered Avastin trial if my lymph nodes come back positive this time,
last time they came back positive, so had groin dissection, but wasnt
offered trial.
I believe that you have to fit certain criteria as Marsha said.
Stage 2 or 3 with pos lymph node involvment.
I will deffo go for it if I get chosen!!!
that's the problem, darn computer gets to choose.
I'm sorry you didn't get it Marsha, hopefully I will be clear this time,
but ob ill keep you informed.
They build you up to think that perhaps this could be the one and then you're told you might not be the one that gets a chance. (does that make sense)?
Anyway guys in the words of Bon Jovi keep the faith.
Hi all. I'm new to this. Was diagnosed with stage 3A melanoma in March (1 macroscopic lymph node (the size of a small egg!)). I too am on the avastin trial on the obs arm which I find cruel. I understand why, I understand that the drug might be no good, I understand that without the control group the benefit of the drug cannot be measured bit it still feels like really bad luck. To top it all, I'm going back to the oncologist for my first 6 weekly check up in 10 days and I'll have to report that I noticed swollen lymph nodes in my right axilla a couple of days ago. I really hope it's not back again so soon...
I too am on the observation arm of the avastin trial. I hope your first 6 weekly check up isn't so much of a let down as mine was! Please let me know what happens at yours, to compare with my own experience!
