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November 1, 2012 at 7:41 pm #20733
The last 6 months I have been in the treatment with prof Neyns ( ipi + DC ), the first scan showed a great result after 3 months. A was a partial responder ( see my other topic) and I felt great. The prof expexted that the ipi would also give a good response during the following months.
That was not the case there were 2 new small spotts on the next scan.
And in the last few weeks I got some stomach ache and after that scan results came in it also showed a tumor in my small intestine, that has been removed last week. I’m still recovering at this moment, next week I have my check up with prof Neyns and then we have to decide for a new treatment.
Anti PD1 is coming within 2 months but I don’t know if that takes to long. I don’t have much other options anymore.
WimNovember 1, 2012 at 10:46 pm #57300
So sorry to hear that your melanoma has returned. Have you tried the PD1 trial in Paris? I just found out today the following: PN002 – IPI refractory is expected to open first in Norway and Spain in Dec (US in Nov, Israel and Australia in Dec). Remaining countries in Europe are expected to open in Jan (France, Italy, Sweden, Switzerland) and Feb (Germany and Netherlands. This is the Merck PD1. I thought the trial in Paris might be recruiting still and have sent an inquiry. Otherwise, the others are a month away. Are you Braf negative? If not, then other options might be available.
Keep in touch and let us know if you find out anything about openings for PD1 for you.November 2, 2012 at 10:03 am #57301patiParticipant
sorry about the news, that really sucks especially knowing you responded! I did not respond to IPI X DC and thus started the phase 1 trial anti-PD1 merck at UCLA for people who had received IPI and have luckily now been transferred to Paris (IGR), I am afraid though that each center had a very limited number of spots (4 or 5 per center with a total of 88 for 18 centers around the world). I do not know if I am respondig or not at this stage.
In Belgium the only trial that will be coming anti-PD1 is a BMS phase 3 randomized with chemo but I know they have the phase 1 biomarker anti-PD1 in university of Navarra Pamplona so you should email both Caroline Robert at IGR (just in case!). In Spain my understanding was that it would be the team of Dr Martin Algarra that would lead the study and they would start recruitment september/october, in anycase you would need to be able to travel there etc…so it is a big undertaking if you decide not to wait for the phase 3 (where you know you have a chance you might not get the drug but only chemo). With Neyns our rule has always been that I have found my trials if they are not in Belgium so do no expect that he will know about trials happening in other centers – he can only do so much in a day…
, so you need to email him directly (you can easily find his email through internet) and ask, this is how I found my spot and now by waiting that clinical trials gov would be updated by then it might be too late, http://www.cun.es/la-clinica/servicios-medicos/departamento/oncologia-medica/equipo-medico/dr-salvador-martin-algarra
PatiNovember 2, 2012 at 11:28 am #57302
Also, you might try: https://www.clinicaltrialsregister.eu/European source for clinical trialsNovember 6, 2012 at 2:35 pm #57303GillyParticipant Hi Pati
are you talking about the CSET 1871 or the CSET 1798 at IGR – I am just checking this out before seeing Dr Mateus on monday – my husbands scan has shown at least one met (biopsy to confirm soon) – we have been on the Ipi double blind and though we think we have been on the placebo I dont know if that prevents us from trying one of these. Thanks for being so on the ball despite your fatigue – we do SO appreciate your advocacy and efforts.
GillyNovember 29, 2012 at 12:44 pm #57304
After my last post things turned out allright, I had a new PET/CT scan last week that showed that the new found spots shrunk and that my situation is stable.So I can still paticipate in the treatment and I will get a maintanence dose ipi 10 mg at the end of december.
The anti-PD1 BMS treatment will come to the UZ Brussels in March 2013.
WimNovember 29, 2012 at 1:10 pm #57305AnonymousGuest
Wonderful news Wim!
Responses from immunotherapies such as IPI can be very durable as well. Keep making plans for the PD-1. Always stay ahead of this stuff.
Here’s to Hope and Good News for the Holidays!
JeffDecember 29, 2012 at 6:47 am #57306
Yesterday I had my second ( every 12 weeks) maintanence dose ipi 10 mg at the UZ Brussels, the treatment so far with the ipi 10 mg doesn’t give me problems with side effects.
My scan yesterday showed no progression so I’m scheduled for march 2013 for the next ipi treatment.
I did have a small bleeding at one of the brainmets a few weeks ago, but that is under control now. I still take some steroides for that and that is giving me some small problems.
Next week I will get another MRI scan from my head and I hope I can stop with the steroides then.
I wan’t to wish everyone all the best for 2013.
WimDecember 29, 2012 at 12:32 pm #57307
Wishing you the best in the New Year too! Good to hear from you Wim.January 3, 2013 at 8:50 pm #57308bettinParticipant Wim,
I’m so pleased to read that! I hope Ipi keeps doing its job for you!!
All the best for 2013!
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