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September 4, 2012 at 8:02 pm #20605
is there anyone here who has been/ is on OncoVex GM-CSF and could tell me something about it?
Thanks a lot!
BettinaSeptember 6, 2012 at 8:59 pm #56377maryellenParticipant
My oncologist at MSKCC recommended the Oncovex trial at Mt. Sinai Hospital in NYC and I did the trial throughout all of 2011(assigned to the Oncovex side of the trial). It worked very well for me. I was Stage IIIC and had about 8 in-transits on my foot which appeared following the primary removal and heel reconstruction as well as two inquinal nodes with melanoma. Each lesion was separately injected with Oncovex every two weeks. For a period of fourteen weeks, I went every week. All of the in-transits are gone and have not returned. I also had my two inquinal nodes injected with Oncovex at the same frequency. During the trial, they biopsied the nodes and they were negative for melanoma. One was retested early this year at MSKCC and one tested positive but my latest scan showed it becoming necrotic.
The side effects were very manageable with a fever and sometimes chills in the evening following the treatment. With Tylenol and Benedryl, symptoms were gone by next morning. My doctor at Mt. Sinai had other patients respond well although others who had a greater tumor burden did not. I’m very glad I did the trial. If I can give you any more info, just let me know!
I’m currently still technically Stage IIIC but have a few small lung nodules which are being watched for now. I have MS so options are a bit limited and I’m C-KIT and B-RAF negative (but am N-RAS positive). Like so many, just loving each day and all that it brings.
Best, Mary EllenSeptember 7, 2012 at 3:23 pm #56378Catherine PooleKeymaster
So good to hear your great results with the Oncovex and to catch up with you. Thanks for taking the time to post your experience, it is much appreciated. I hope things continue to go well for you.September 7, 2012 at 7:39 pm #56379
Dear Mary Ellen,
thank you so much for your post- would you mind sharing your email address with me via Catherine as I would really appreciate to hear a bit more about it?
Glad to hear you are well- gone is the best word in Melanoma!
BettinaSeptember 7, 2012 at 8:15 pm #56380maryellenParticipant
Great. I just emailed Catherine and asked that she share my email with you.
Best, Mary EllenOctober 10, 2012 at 7:32 am #56381EmrinaParticipant
I am from South Africa and my husband was dx Stage IV Melanoma 22 December 2010. We decided on the OncoVex trail and he got the OncoVex arm. Currently on an extention of the fase 3 trail. So he is receiving the OncoVex injections since 18 January 2011. He only has 1 tumor were the oncovex is injected. Other lymphnodes are not injectable. From about 3.5cm it is down to under .5cm and the last few times the trail docter really had difficulty injecting the lesion. The cancer in both his lungs has been growing very slowly. With every the every 12 week CT scans some tumors are 3mm bigger and others are again 2-3mm smaller. Last CT of end August said stable disease. Last year May there was ‘n spot about 1cm showing on the MRI scan. Right between the medulla and cerebellum. The next scan was clear again. Docter had a look at the previous scan and it was defenitely there!
Would really like to communicate with you. We were told that of 62 patients in South Africa my husband is the only one left. Is there a way I can give you my e-mail address?
EmrinaOctober 15, 2012 at 7:53 pm #56382
please ask Catherine for my email address, I am very happy to email with you.
Glad to hear your husband is responding to OncoVex and I hope he will continue to do so forever!! It is amazing what our immune system can do once it has understood HOW.
Wishing you all the best and looking forward to hearing from you-
BettinaOctober 16, 2012 at 9:24 pm #56383Mary EllenParticipant
I too would be glad to correspond with you and have asked Catherine if she would put you in touch with me.
I’ve been busy with CTand MRI scans the last couple of days and met with my doctor yesterday. Things are pretty stable with questionable lung nodule growing from 4mm to 6mm. My inginual node continues to shrink which is good news. I do think that is due to the Oncovex!
My best to you.
Mary EllenOctober 18, 2012 at 7:18 pm #56384
that is good news!!!
Wishing you all the best,
BettinaOctober 23, 2012 at 12:20 am #56385Mary EllenParticipant
Thanks Bettina. My best to you.
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