my husband (stage 4 with lung and liver metastases) will start with Ipi in March. I was wondering if there is anyone who still gets it or will start soon as well? He will get it at the Royal Marsden in London.
It would be great to exchange information.
Those people who finished the trial, how many did actually respond to it? What was your next step if it didn't work?
Hi, My son started ipi august last year .He really didn't suffer from any side effects we were able to enjoy a family holiday between treatments but must confess we didn't get the great tumour shrinkage we were hoping for , although may do.
However its now feb and he is still with us .Althugh the ipi didn't really shrink anything it does seem to have stopped them growing and there has been no further spread.Although tired much of the time he has still been attending school ( oops forget to say he is only 14) and loving his life.
I hope it goes well for your husband , Royal marsden has excellant reports ....have you met prof thomas? best wishes sarah
next step ...well we can still have more ipi and roche have a drug just verging on coming out on compassioante grounds although sadly not for us ..they only have over 18's
Thanks for your info! We haven't met Prof. Thomas, only had contact with Dr. Larkin so far.
Forgot to mention that my husband is BRAF and C-KIT negative, which means unfortunately not eligible for the Roche trial.
my husband has stage 4 (lymoh glands,stomach,neck and chest cavity )melanoma and has been treated since 30.12.10 with Ipi.he is to have his 4th infusion in early march then scanned so we dont know whether it has been effective yet. The side effects have wiped him out but not everyone has the same ones-his have been abdominal pain and severe constipation which makes him and me )pretty miserable!!!!
Hopefully it is working though and will let you know...how old is your husband?mine is 51 and his name is Steve
Sorry should have said he is being treated at Poole Hospital in Dorset-he is under Dr Richard Osborne
please let me know about the scan results and what will happen afterwards!
My husband is 51 as well!!
I have just been diagnosed with stage 4, going there straight from stage 1, so a huge shock.
I am having radiation to try and clear the 4 bits in my brain at the moment, then I move onto Braf, and eventually Ipilimumab. I am 51 too, seems an unlucky year doesn't it! But am very interested to hear how you are all getting on, as there is very little info around.
At the moment I am going to RSCH in Guildford, but may end up at the Marsden.
I am sorry to hear about you. My husband also went suddenly from stage1 to to stage 4 last year, it is quite a shock!
He received his second infusion if Ipilimumab (now called Yervoy) today. So far he tolerates it well, besides his extreme tiredness he feels ok. It is a long wait though to know if it works or not, we will not know before the end of June.
If you are braf positive (which my husband isn't) you have definitely an advantage, as the combination with first braf and then IPI seems to get positive results in a lot of people.
Thanks for the support Cloudy. And please give my very best wishes to your husband.
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