› Forums › General Melanoma Community › seeking feedback on GVAX trials
- This topic has 18 replies, 3 voices, and was last updated 11 years, 9 months ago by
Linny.
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- July 1, 2012 at 11:31 pm
Just wondering if anyone has experience with GM-CSF SECRETING ALLOGENEIC MELANOMA VACCINE (MELANOMA GVAX) trials? This seems to be the only treatment option that fits – a melanoma without juncture on the skin, possibly (probably?) primary dermal, that was about 9mm thick, fully excised and no spread to the sentinel nodes, no evidence of spread on PET/CT scan.
Just wondering if anyone has experience with GM-CSF SECRETING ALLOGENEIC MELANOMA VACCINE (MELANOMA GVAX) trials? This seems to be the only treatment option that fits – a melanoma without juncture on the skin, possibly (probably?) primary dermal, that was about 9mm thick, fully excised and no spread to the sentinel nodes, no evidence of spread on PET/CT scan. No one has yet agreed on a stage because it never showed up on the outside of the skin and they can't do the depth or thickness scales properly. The concern is the size – it was pretty thick, even if it couldn't be measured.
If anyone has any experience with a case like this, or with the vaccine trials, please respond. Thanks!
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- July 2, 2012 at 12:57 am
Is this the trial that's going on at Johns Hopkins? If so, you might want to contact them about it.
I'm being seen at Johns Hopkins and am on their MAGE vaccine trial. So far, so good. I am getting a reaction after my injection that's consistent with the reported side effects. My primary symptoms have been fatigue and occasional nausea. It all dissipates in about 24-48 hours.
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- July 2, 2012 at 12:17 pm
Thanks for the feedback, Linny and Linda. We have an appointment at Hopkins in a few weeks. The sentinel node biopsy showed no spread, so myt husband is NED at the moment. Don't know whether he will enter the trial but just wanted to know the downside.
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- July 2, 2012 at 5:32 pm
Glad to hear that your hubby is NED!
Have you seen this information on GVAX yet? It gives you a little more information about it than the Hopkins web site does.
http://clinicaltrials.gov/ct2/show/NCT01435499
I'm assuming that he'll be seeing Dr. Scharfmann that day. He's very laid back, which I like. I'm not familiar with the symptoms you're describing but it's still possible that there may be other treatment options for him besides that trial. If he opts for the trial, he'll probably be going to the Kimmel Center in downtown Baltimore on Tuesdays for his injections.
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- July 2, 2012 at 5:32 pm
Glad to hear that your hubby is NED!
Have you seen this information on GVAX yet? It gives you a little more information about it than the Hopkins web site does.
http://clinicaltrials.gov/ct2/show/NCT01435499
I'm assuming that he'll be seeing Dr. Scharfmann that day. He's very laid back, which I like. I'm not familiar with the symptoms you're describing but it's still possible that there may be other treatment options for him besides that trial. If he opts for the trial, he'll probably be going to the Kimmel Center in downtown Baltimore on Tuesdays for his injections.
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- July 2, 2012 at 5:32 pm
Glad to hear that your hubby is NED!
Have you seen this information on GVAX yet? It gives you a little more information about it than the Hopkins web site does.
http://clinicaltrials.gov/ct2/show/NCT01435499
I'm assuming that he'll be seeing Dr. Scharfmann that day. He's very laid back, which I like. I'm not familiar with the symptoms you're describing but it's still possible that there may be other treatment options for him besides that trial. If he opts for the trial, he'll probably be going to the Kimmel Center in downtown Baltimore on Tuesdays for his injections.
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- July 2, 2012 at 6:11 pm
Linny,
Thanks for sending the link – that page definitely had more information than I had seen previously. Dr. Sharfman mentioned the study when we met with him before the surgery.
The question will probably be the staging – but I'm guessing that part will be OK because of the size of the tumor. The docs here in DC have been calling it a "melanoma in situ" which it seems would mean Stage 0. But the thing that was removed (which we thought was a sebaceous cyst) was much bigger than 4mm, so that seems to indicate Stage II.
So now we are just waiting for the next appointment with Dr. Sharfman, which isn't for another three weeks. One thing this has taught me is to be patient. That never was my long suit!
Stay well and NED – I'll be thinking of you in late August!
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- July 2, 2012 at 6:11 pm
Linny,
Thanks for sending the link – that page definitely had more information than I had seen previously. Dr. Sharfman mentioned the study when we met with him before the surgery.
The question will probably be the staging – but I'm guessing that part will be OK because of the size of the tumor. The docs here in DC have been calling it a "melanoma in situ" which it seems would mean Stage 0. But the thing that was removed (which we thought was a sebaceous cyst) was much bigger than 4mm, so that seems to indicate Stage II.
So now we are just waiting for the next appointment with Dr. Sharfman, which isn't for another three weeks. One thing this has taught me is to be patient. That never was my long suit!
Stay well and NED – I'll be thinking of you in late August!
-
- July 2, 2012 at 6:11 pm
Linny,
Thanks for sending the link – that page definitely had more information than I had seen previously. Dr. Sharfman mentioned the study when we met with him before the surgery.
The question will probably be the staging – but I'm guessing that part will be OK because of the size of the tumor. The docs here in DC have been calling it a "melanoma in situ" which it seems would mean Stage 0. But the thing that was removed (which we thought was a sebaceous cyst) was much bigger than 4mm, so that seems to indicate Stage II.
So now we are just waiting for the next appointment with Dr. Sharfman, which isn't for another three weeks. One thing this has taught me is to be patient. That never was my long suit!
Stay well and NED – I'll be thinking of you in late August!
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- July 2, 2012 at 7:55 pm
I'm sure Scharfmann should have all the answers for you regarding the staging by the time your appointment comes around in three weeks. Think positive things: your husband had clean scans and he's NED. Scharfmann's job will be to make sure he stays that way.
Maybe we'll run into each other at Kimmel one of these days.
You two did the right thing by heading to a melanoma clinic after the initial diagnosis.
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- July 2, 2012 at 7:55 pm
I'm sure Scharfmann should have all the answers for you regarding the staging by the time your appointment comes around in three weeks. Think positive things: your husband had clean scans and he's NED. Scharfmann's job will be to make sure he stays that way.
Maybe we'll run into each other at Kimmel one of these days.
You two did the right thing by heading to a melanoma clinic after the initial diagnosis.
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- July 2, 2012 at 7:55 pm
I'm sure Scharfmann should have all the answers for you regarding the staging by the time your appointment comes around in three weeks. Think positive things: your husband had clean scans and he's NED. Scharfmann's job will be to make sure he stays that way.
Maybe we'll run into each other at Kimmel one of these days.
You two did the right thing by heading to a melanoma clinic after the initial diagnosis.
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- July 2, 2012 at 12:17 pm
Thanks for the feedback, Linny and Linda. We have an appointment at Hopkins in a few weeks. The sentinel node biopsy showed no spread, so myt husband is NED at the moment. Don't know whether he will enter the trial but just wanted to know the downside.
-
- July 2, 2012 at 12:17 pm
Thanks for the feedback, Linny and Linda. We have an appointment at Hopkins in a few weeks. The sentinel node biopsy showed no spread, so myt husband is NED at the moment. Don't know whether he will enter the trial but just wanted to know the downside.
-
- July 2, 2012 at 12:57 am
Is this the trial that's going on at Johns Hopkins? If so, you might want to contact them about it.
I'm being seen at Johns Hopkins and am on their MAGE vaccine trial. So far, so good. I am getting a reaction after my injection that's consistent with the reported side effects. My primary symptoms have been fatigue and occasional nausea. It all dissipates in about 24-48 hours.
-
- July 2, 2012 at 12:57 am
Is this the trial that's going on at Johns Hopkins? If so, you might want to contact them about it.
I'm being seen at Johns Hopkins and am on their MAGE vaccine trial. So far, so good. I am getting a reaction after my injection that's consistent with the reported side effects. My primary symptoms have been fatigue and occasional nausea. It all dissipates in about 24-48 hours.
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