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Finally - a Vaccine Trial for me!
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After years of not qualifying for any of the HER2 vaccine trials offered near my home, now there is one. It is the 133 at U of W Tumor Vaccine Group. It is a Phase I-II study, and just opened in August.
Passed all the screenings and got my first vaccine yesterday. This is a Peptide vaccine that has been tested in numerous trials before this, so what is new is the other agent given to try to boost the immune response ever further. That would be Ampligen. This trial is open to stage IV BC patients as well, who are NED (me) or have stable bone mets. There is no allele or ANA requirement. The vaccine is given in a split dose of 3 shots. Here are my weals! Only a bit red today, but no pain or itching. |
Re: Finally - a Vaccine Trial for me!
Awesome! I am bound and determined to get into a vaccine trial too. I am hoping for NED in the near future. Do you get the TCell infusions too? Good luck!!
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Re: Finally - a Vaccine Trial for me!
Stephanie,
I was so attracted to this trial and thyroid issues don't necessarily disqualify you, and nearly joined after conferring with Stephanie numerous times. I really hope that you have the results you deserve. I'm in New York and travelling to Seattle would have been tough, even with a best friend in Mukilteo. Just wondering, why did you feel the need to be vaccinated at this point, with such a clean, stellar record? My best wishes, Karen |
Re: Finally - a Vaccine Trial for me!
Hi Steph, It is so exciting to hear you are in this trial. I am also. I will be flying to Seattle on Nov. 11 for my first round of shots.
I am a little nervous as I am stopping my Herceptin/tykerb for 4 months to do this trial. I have been NED since Feb., and am willing to risk it to see if this vaccine works. Laurie |
Re: Finally - a Vaccine Trial for me!
Hurrah, Steph! For all who follow in your footsteps may I say, "thank you." I pray the results of the trial are positive in a massive way.
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Re: Finally - a Vaccine Trial for me!
Hi Steph. I am really happy you could start the trial because there is a lot of hope in vaccines. It is not the first trial so I figure they are getting closer and closer each time. It seems to me that after a small period of skepticism, research on vaccines is now central. Porte toi bien! Michele
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Re: Finally - a Vaccine Trial for me!
Hi Steph
I have also enquired about this trial. It feels a bit scary on two counts, firstly way,way across the pond so I might need support from my her 2 sisters and secondly going without herceptin (most scary) for 3-4 months! Really pleased that you finally got a trial. Keep us posted about how it goes. Ellie |
Re: Finally - a Vaccine Trial for me!
Steph!
Yay for you! Congratulations! How cool that you even posted a picture, so we could celebrate with you! You go girl! I wish you all the best! NED Forever!!! Denise |
Re: Finally - a Vaccine Trial for me!
I am very happy for you Steph. Congratulations for qualifying. Good luck with it. Let us know how it goes.
I want a vaccine in the future too. I check the U of W Tumor Group website for an updates from time to time. |
Re: Finally - a Vaccine Trial for me!
Steph--I'm very happy for you. Be sure to let us know how it goes.
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Re: Finally - a Vaccine Trial for me!
Thanks for sharing. Hope you don't mind my posting that picture and the quotations in your signature on my FB. I know my nieces and nephews will be impressed (inspired)...
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Re: Finally - a Vaccine Trial for me!
Great news Steph!! We are pushing for the cure, and you are in the thick of it...
all the best caya |
Re: Finally - a Vaccine Trial for me!
That is awesome, Steph! Having just finished a 6-month vaccine trial (MVA-BN HER-2 vaccine), I can only encourage you to pursue yours. I had no side effects with each shot besides a soreness/redness reaction at the site. I strongly believe in the vaccines and hope yours will keep you NED!
Keep us posted on the trial! Marcia |
Re: Finally - a Vaccine Trial for me!
Steph,Gods blessings to you Steph. That is wonderful news! I will pray it goes well for you. You are such a wonderful women who does so much good for so many of us on this site! This is your turn at haveing something great happen.Your Friend,Nancy
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Re: Finally - a Vaccine Trial for me!
StephN~
So excited for you! And more than anything, feel such incredible respect & gratitude to you for pushing forward and supporting research, and continuing to always be so present & supportive to all of us here. Thank you for all that you do and for your friendship here all these years<3 Jml |
Re: Finally - a Vaccine Trial for me!
Although vaccines have not (yet) shown much actual benefit, I hope and think that their time is approaching. Ideally, the success will be both from a treatment and a preventive perspective.
So I do have great hope for what the vaccine trials may do for those enrolled now, including you, Steph -- and for those to come. And I have great gratitude for all of you who've participated in the trials, over the years. I had my intake appointment set, for a vaccine trial that was initiated out of the UofW, years ago -- when GSK canceled the trial. I would have participated at a site in the bay area (of California). For me that trial would have involved the expense of a 5-hour drive, plus lodging, plus time ($$) lost from work. Which was not an insignificant expense for me. It was hard to consider taking that money away from the family, "just" for me, based only on my passion or intuition. But we could have managed it. I have concerns about those who could not, in any way, manage such costs to participate in these kinds of clinical trials that involve travel. Especially the trials (like TDM-1) that might offer life-saving or life-prolonging advantages to those able to afford to access them. Yes, the trials themselves are "free". But the cost of travel and lost wages, especially nowadays in our tough economic climate, is prohibitive to many. Does anyone know of a clearing-house type of place (available nationally), where anyone (regardless of ability to pay) could get information about how they could be funded to participate in these trials? I know there are things like Angel Flights, and there are local or state organizations that offer assistance. But that involves a good amount of initiative and work on the part of the participant. Doesn't it seem like there should be easy-to-access, nationally-standardized opportunities for every person who wants to, to access a clinical trial? It's only fair and right. It bothers me to think that some of these cutting-edge trials are available only to the rich, and/or to those who happen to live in cities that host the trials. We ALREADY, in the US, do not have equal access to quality care. It concerns me that the issues of travel costs and lost wages, for participation in trials, is widening that gap. You'd think there would be a philanthropic organization out there who might want to step up to this plate, at least for breast cancer. Any thoughts? Debbie Laxague |
Re: Finally - a Vaccine Trial for me!
Lauriesh - I hope to meet you so let's keep in touch.
KDR - It is very easy for me to participate in this vaccine trial. I live about 20-25 minutes from the medical center and they cover the parking. If I plan a couple of errands on the way, I have not even used extra gas. But the main reason is that I feel since I have been off Herceptin for alomost 3 years, that it is time to try something, since I am hormone negative and there is nothing else to take unless a tumor shows up someplace. I do know of a woman who was HER2, stage IV, achieved remission PRIOR to Herceptin and was in an early vaccine trail here. She is STILL in remission. Who know exactly why, but they are studying her blood as well as mine to see what our natural HER2 immune response is. Something like 20% of us do have a natural reponse but it is usualy too low to fight a tumor. If I can boost my response to stay in remission, this is an easy route for me at this juncture. Debbie L - I have met numerous women at the U of W who came for the previous vaccine trials. Many did have their airfare mostly or all paid by one of the organizations. Plus they had rooms in nice hotels at NO CHARGE and taxi vouchers from the medical center. All they had to pay was a couple of meals. Hope some of those gals will chime in. |
Re: Finally - a Vaccine Trial for me!
Could somebody explain allele and ANA please?
Steph- is staying in Seattle very expensive? I stayed in Seattle in 1989 but with a friend from the Harbor view medical centre. She has since moved on so this is not an option now. Debbie- totally agree with the cost issue. For me the flights from England would be very expensive especially if I have to go 3 times but like my sisters from other parts of the world we don't have the options for these types of treatments. Thanks Ellie |
Re: Finally - a Vaccine Trial for me!
Debbie,
Any thoughts? Yeah, Occupy The FDA. Thanks, Karen |
Re: Finally - a Vaccine Trial for me!
Steph,
As you know, you (and Andi BB, Mamacze) are all what we want to be. So I wish you the best in this. We will be watching. My team has the utmost respect for Mary Disis. I suppose she is heaing the trial? Warmly, Karen |
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