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August 21, 2012 at 7:37 pm #20572DirkParticipant
Can give someone give us good advise:
My wife has stadium 4 melonoma. With metastases in kidneys, mild and lungs. In the month of May she has started with Ipilimumab 3mg, after an unsuccessful treatment with MEK162. She has had her 4th infusion on 10 July. On 16 August, she had a CT scan. It showed that the tumours had grown. Bloodtest shows that the tumor marker is decreased by 10% since 10 July.
Her doctor will immediately start with chemo, because he is not sure whether ipilumimab works. That goes us to fast because there is maybe an alternative. She has the ability to in Amsterdam with investigations of Gene therapy to participate. We have a conversation about this soon.
In addition, we think, that it is too soon to make the conclusion that the Ipilimumab do nothing. The working of operation of Ipilimumab starts late. According to the doktor the tumor first grows and later the tumor get smaller.
Can someone give us advise what to do? Have someone get the experience with Ipilimumab or Gene therapy? When can make a docter the conclusion that Ipilimumab does not work? And if my wife must make a choice: Chemo or Gen therapy? whatever, who have good advices for us.
Dirk en SietskeAugust 21, 2012 at 8:19 pm #56125bettinParticipant
I didn’t have a deeper look into MEK162 (apart from it being the Novartis MEKi) yet but I assume your wife is BRAF pos? Has she already been on Vemurafenib or the GSK BRAF inhibitor? The results for chemotherapy in Melanoma are not very encouraging to say the least. What type of gene therapy is that, could you maybe post some more details about it?
If your wife was BRAF positive, going on Vemurafenib might be an option, especially after she has been off targeted therapy for some time. My husband was first on the GSK MEKi, became resistant but to our surprise still responded to Vemurafenib afterwards. It didn’t last very long, but he was in a better condition to start on Ipi and it certainly bought us time.
As you are in Holland, Prof. Neyns in Brussels
is running interesting trials based on immunotherapy and is having some encouraging success with it, so that might be something to look into as well! http://www.uzbrussel.be/u/view/nl/345905-Samenstelling.html
Wishing you all the best!
BettinaAugust 22, 2012 at 7:35 pm #56126Catherine PooleKeymaster
Thanks Bettin for that information. Dirk, by gene therapy, do you mean the ACT/TIL therapy? Please look to Hein’s posts (in the search) as that may be available in England and Holland.August 22, 2012 at 10:28 pm #56127DirkParticipant Betinne,
My wife is not BRAF positive. She had an NRASS mutation of melanoma. So the Vemurafenib and the GSK BRAF inhibitor will not work. Now we are waiting on a date for an appointment in Amsterdam. What I know, is that they are injecting prepared blood directly into a tumor. The blood is prepared in a lab and contains genes, which the tumour should attacks. There are many ways of gene therapy. Even with viruses. For us it is still a question what methodology there will be used exactly. As soon as I know more I put it on the formum. I hope that in the US or elsewhere in the world there are people who have undergone gene therapy. I’m very curious to read test results of gene therapy by melanome patients.
thanks voor the adres in Brussel. I will try to get some information about the trails there.
The Til therapy is stoped in Holland at this time. For us was that a better option. I do not know where you can get Til therapy at this time.
Dirk en SietskeAugust 24, 2012 at 9:34 pm #56128bettinParticipant
it seems that you could get TIL in Manchester (but there might be financial implications). Before going on any type of experimental therapy, I would check the results they’ve got so far and obviously pick the one with the best.
And in any case, I wouldn’t wait ages for an appointment but find a Melanoma specialist who could see me as soon as possible…
Wishing you all the best,
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