Hey!
Is anyone a part of the PVX-410 trial who can tell us how things have gone?
I just got accepted to be a part of the second arm of the trial. I will be getting the vaccine plus Revlimid. My doctor said that everyone in the first arm experienced some response to the vaccine, but there were a few people who still progressed into active myeloma. The rest of the people are stable right now.
I'd love to hear personal experiences, if possible.
Thanks!
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tracey234 - Name: Tracey
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 45
Re: PVX-410 clinical trial - any experiences?
Hi,
My husband was in the first arm of the trial, and he has remained smoldering since that time. We are a bit concerned about his free light chain levels, given the new proposed criteria for determining progression from smoldering to active myeloma, but we will talk about this with his specialist next month.
In all other respects, his disease has remained stable. He received the higher dose of the vaccine, which may also be a contributing factor to his lack of progression. Now his numbers are slowly beginning to rise again, but thankfully, they are still considered "stable". He has been out of the trial observation period for more than a year.
Best of luck to you in the trial! Please do post anything you hear / experience, if you are comfortable with doing do. We've been in the dark, so it was good to hear your report on what you heard.
Wishing you strength and health!
Tabitha
My husband was in the first arm of the trial, and he has remained smoldering since that time. We are a bit concerned about his free light chain levels, given the new proposed criteria for determining progression from smoldering to active myeloma, but we will talk about this with his specialist next month.
In all other respects, his disease has remained stable. He received the higher dose of the vaccine, which may also be a contributing factor to his lack of progression. Now his numbers are slowly beginning to rise again, but thankfully, they are still considered "stable". He has been out of the trial observation period for more than a year.
Best of luck to you in the trial! Please do post anything you hear / experience, if you are comfortable with doing do. We've been in the dark, so it was good to hear your report on what you heard.
Wishing you strength and health!
Tabitha
Re: PVX-410 clinical trial - any experiences?
I was in the first stage of the trial. Still smoldering ... light chains are moving up, but M-spike has dropped a little. Considered medium risk although difficult to accept when FLC ratio continues to rise. No ill effects from the trial. Worst part was pain and swelling at site of injections, probably the Hiltonol. Injections in the thigh were the worst.
I am over a year out of the trial and looking at other possible clinical trials.
I am over a year out of the trial and looking at other possible clinical trials.
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Martin Leyland
Re: PVX-410 clinical trial - any experiences?
Thanks for the responses! Martin, which dose level were you on? And Tabitha, is your husband's free light chain ratio on the rise as well?
I was supposed to have started on the trial last Thursday, but got pneumonia and had to be hospitalized for 2 days. We are now waiting until I am fully recovered. I will probably be going in next week or possibly the one after that. My doctor definitely felt very positive about the results, but I do wonder how well it will actually work in real time since this is just Phase 1 of the trial. Glad they will be adding Revlimid to the mix. I will keep you posted!
Thanks!
Tracey
I was supposed to have started on the trial last Thursday, but got pneumonia and had to be hospitalized for 2 days. We are now waiting until I am fully recovered. I will probably be going in next week or possibly the one after that. My doctor definitely felt very positive about the results, but I do wonder how well it will actually work in real time since this is just Phase 1 of the trial. Glad they will be adding Revlimid to the mix. I will keep you posted!
Thanks!
Tracey
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tracey234 - Name: Tracey
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 45
Re: PVX-410 clinical trial - any experiences?
Hi Tracey,
I'm sorry to hear of your pneumonia. I hope that you get better soon, and that you won't miss out on plenty of turkey and apple pie for Thanksgiving!
During the trial my husband had some problems at the injection site as well, but nothing that was too bad. He never had injections anywhere but in his arm, but on one occasion he had a very bad reaction that brought with it a red rash, fatigue, headache, lots of swelling and a high fever. That reaction only happened once, though, and we think it may have been incorrectly administered, resulting in the swelling and thickness at the injection site. Most of his side effects were flu-like symptoms, like headaches and fatigue.
My husband's free light chains are also on the rise since the trial. The rest of his numbers are pretty stable. Martin, thank you for sharing about your FLCs as well. It makes me wonder if there are other trial patients with rising FLCs? It's definitely something that I intend to bring up with his specialist.
Tracey, I hope that you have a success with the 2nd arm of the trial. I'm sending lots of positive thoughts and well wishes your way.
Tabitha
I'm sorry to hear of your pneumonia. I hope that you get better soon, and that you won't miss out on plenty of turkey and apple pie for Thanksgiving!
During the trial my husband had some problems at the injection site as well, but nothing that was too bad. He never had injections anywhere but in his arm, but on one occasion he had a very bad reaction that brought with it a red rash, fatigue, headache, lots of swelling and a high fever. That reaction only happened once, though, and we think it may have been incorrectly administered, resulting in the swelling and thickness at the injection site. Most of his side effects were flu-like symptoms, like headaches and fatigue.
My husband's free light chains are also on the rise since the trial. The rest of his numbers are pretty stable. Martin, thank you for sharing about your FLCs as well. It makes me wonder if there are other trial patients with rising FLCs? It's definitely something that I intend to bring up with his specialist.
Tracey, I hope that you have a success with the 2nd arm of the trial. I'm sending lots of positive thoughts and well wishes your way.
Tabitha
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