UK Skin Cancer and Melanoma Patients

[gilly]

We have been offered two stage 3 trials (Mage 3a and Ibilimumab) - OH's cancer is 3C but we are feeling that the hassles associated (side effects and hospital visits) aren't worth the potential success rates - we are thinking of holding off for now and waiting to see if any new metastases appear and if we go to stage IV - is this a stupid risk ? We feel that if we agree to these trials we scotch our chances of getting on any potentially better ones if/when the disease progresses. Is there anyone who made this decision and holds by it even if they then went on to stage IV - I know its a personal choice and that we have to make it but any advice welcome - we have to decide by the end of the week to avoid trial deadlines and we are feeling a bit wobbly on the decision front.....

[Shaz41]

Hi Gilly
It's a tough one to call as I can appreciate. I believe there can be quite severe side effects with the ipilimumab, but I don't know anything about the mage3 one.
I have the same decision to make and I have to let the hospital know tomorrow. I have only been offered the avastin trial though as my stage is 3a and the criteria for ipilimumab is more than 8 nodes taken out (as you know) and I had 7. I didn't have anymore infected nodes, just the 1 in the SNB and that was microscopic.
The side effects with the avastin are not as severe, but the decision is still hard due to it only being a trial, the disruption to life, fitting it in around my 1 year old etc, etc. It's a bit like tossing a coin isn't it? The thing that sticks in my mind is my oncologist told me there is a very small chance (and it has happened), that taking the drug could make things worse!!!!! Great.
In the end, I think I have decided to go for it as I guess I feel that doing something is better than nothing. If your hubby does decide to accept it, he could always decide it isn't for him if the side effects are substantial. To my knowledge also (though I may be wrong here), if things were to progress to stage V, then they would stop the trial anyway and possibly offer him another one that is more suitable to that stage. Also, if he did accept the trial, I think the hospital would closely observe him and do all the scans, x-rays, blood tests etc, which if anything like the avastin trial, thye don't do otherwise.
If things did get worse, maybe you would always wonder if you took the trial, then maybe it would have delayed things, but like I said as it's only a trial, then it's hard to know for sure if they are any good.
Sorry I can't be of any more help, but as you said, you will make the decision that is right for you in the end.
I wish you both all the best and please let us know what you decide.
Sharonxx

[gilly]

Thanks Sharon - all useful things to mull over - I hope your decision works out for you and your family too - best of luck starting the trial

[Shaz41]

Hi Gilly
Just wondering what your hubby decided re the trials???
I had a total change of heart in the end and decided not to go on the avastin one as I couldn't get it out of my head the bit when the doc said there is a chance it could make things worse!!!! That did it for me.
Hope whatever you decided you are happy with your decision and please let us know how you go on.
Love Sharonxx

[ruth]

Hi Gilly,

Tough decision and I respect you both taking a step back to consider. I don't know much about either of the trials you mention, I can only tell you my experience. I was on the treatment arm of the Avastin trial for 8 months. Side effects minimal but a CT has picked up a met in my abdomen so I now have to finish. Would I go back and still do it? Yes I would. Who knows if it may have helped a little and things could be worse, however thats not to say a decision not to accept a trial would be wrong. We are all hoping for something to cling on to and its a personal choice. I too was stage 3c before I started the Avastin and felt I had to try something. Now I have to wait 6 weeks before they can operate because of the Avastin, so was it a good thing or not? Who knows. I wish you all the best and pray that whatever treatment (or not) you decide on, you have a good outcome.

All the best
Ruth x

[gilly]

Thanks for your replys Ruth and Sharon - the choice on the Mage 3a Glaxo trial was sort of made for us because the lab lost the slides and the date for entry has passed without us even knowing if he had the appropriate proteins - we were fairly sure we were going to refuse it anyway- too much disruption (as we realised once we'd recieved the appointment schedule !) - we still have 12 weeks to decide on the ipilimumab one - but the side effects are more likley - we have a routine scan/ultrasound coming up soon so we will decide with the dermatologist then.

[gilly]

Hi - just an update - my hubby decided to go for the Ipilimumab trial - starting on the 22nd march - he was positive for mage 3a - but the Doc agreed that the Ipi was looking a bit more positive at the mo - will keep posting - I don't know whether to hope for placebo or drug - I guess the drug if the side effects are bearable !

[seanty]

Good luck gilly, that's definitely the best of the two..-

[gilly]

Hi
just an update :
we had the first Ipi perfusion on monday - lots of blood tests first - then a consultation - then the drip - took about an hour and a half - with an hours observation afterwards - we don't expect any side effects until at least week 5 (assuming its not the placebo) - perfusion every 3 weeks - likely side effects rashes and diarrhea - we think thats bearable - hubby was back at work that evening - they want to remove another suspect mole - nothing too alarming hopefully and definitely not a skin metastase. best wishes to all....

[Moondust]

Interesting to read this. I will definately keep up to date on this thread to see how it goes with your hubby.

xx

[Janet2]

Hi Gilly,

I'm pleased to hear your husband had his first perfusion -- hope it does the trick. Also hope the suspect mole is nothing to worry about. Please keep us posted, if you can, as to how your hubby goes on.
Best wishes, Janet