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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 |
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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. |
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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 |
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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 |
Re: Finally - a Vaccine Trial for me!
Hi Debbie, as I mentioned earlier, I am also doing this trial, so I will be flying to Seattle four times.
I have found quite a bit of help with travel and lodging. Most is through the Amer. Cancer society. They provide one flight a calendar year, so 2 of my 4 flights will be free. They will also try to arrange free lodging. It is not guaranteed, as it depends on the city and time of year. but, if it is available, I can get free lodging all four trips. If I can't get lodging through them, there is an organization called Joe's house where you can get discounted hotels. It didn't take too many phone calls/paperwork to get this help. After my first phone call to ACS, they e-mailed all of the possible resources, such as Angel Flights, Joe's house, etc. I hope no one decides against a trial because of expense, because there is a lot of help out there. Laurie |
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Steph,
Sending you prayers and the very wishes! Jean |
Re: Finally - a Vaccine Trial for me!
Ellie -
An allele is a tiny part of our DNA and there was a certain one being targeted by one of the "DNA" vaccine trials. The HL allele was the target and it needed to be number 2. My HLA was number 26 on my DNA. It was a very specific blood test that took a couple of weeks to come back from a special lab. The current trials are not targeting specific DNA. The ANA stands for AntiNucleicAntibody. It is an indicator of autoimmune disease, and in some people it can be positive in one test and negative another time. Mine was always positive, due to "we know not what." The FDA has removed that restriction from the current vaccine trial. Our member here, Full of Beans, came from the UK for a vaccine trial. She can give you some answers as to how she managed the flights and lodging. Another member came from New Zealand early this year, you can find her info under the Clinical Trials forum. Hope this helps. |
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Thanks Steph for the explanation and advice.
My onc here has a lot of respect for the team at Seattle and was disappointed when I didn't qualify for an earlier trial due to prior use of herceptin. I also have a lot to thank them for! When I recurred my first onc stopped herceptin. However an onc there was reviewing my records for the trial and contacted me to tell me I MUST get herceptin back. I also got this advice from my sisters on the board.Needless to say I found a new oncologist! Ellie |
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WOW, Ellie - I had forgotten that you were removed from Herceptin like that. The U of W Tumor Vaccine Group is deep into the study of anti-HER2 agents and are very aware of the POWER of Herceptin.
I believe a person can be taking Herceptin and paticipate in the current trials. The 133 Vaccine trial is headed by Dr. Lupe Salazar and Dr. Disis. |
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I recently checked out a vaccine trial at Sloan-Kettering, which was a DNA vaccine, but decided not to participate. The trial is being run by Dr. Gilewski who spent a lot of time explaining this phase I trial. The primary endpoints are immune response and safety. She is enrolling only 12 patients, and the trial started a few years ago at a low dosage. Two patients per dosage. Three dosage levels. She wanted to recruit me for the highest dosage, which is the last stage of the trial.
Dr. Gilewski also informed me about vaccine trials at U of Wash, but I had already checked into them. The U of Wash trial I was interested in had just closed to recruitment, but a new trial had just opened. Steph, that you're in the new trial. U of Wash e-mailed me those trial papers. In terms of vaccines, I feel that I haven't been NED long enough and don't want to rock the boat. So, Steph, I understand how you might feel, since you've been NED a long time. I really aspire to that status! I'm so concerned about upsetting the apple cart, that when I left Sloan-Kettering recently for another group in NYC, I asked that my blood be tested every 9 weeks, rather than every 3 weeks when I have my Herceptin treatment. The onc was fine with that. But I had to ask. I wanted nothing to change. That frequency had been set up almost 4 years ago with my local onc, meaning in the first facility I received chemo for both early stage and advanced bc. Joan |
Finally - a Vaccine Trial for me!
Dearest Steph, my Sister, http://cdn-cf.aol.com/se/clip_art/gstres/celebrte/fists
You've been through sooo much, and look at you now! You did it all with grace and courage, loving generosity, genuine caring and acts of kindness. You've become a wealth of knowledge and wisdom and -- we all love you. I am right here, by your side. (Istopped Vitamin H in July 2008, as I KNOW you Know!) It is so great to be alive! I KNOW you Know this as well!! I say thank you for my life every single day.http://cdn-cf.aol.com/se/clip_art/pe...notworthy-clip Thank you so much for sharing! May you remain joyful, full of Life, inspirited and serene... Please keep us all posted on your grand success story. Sending you my love, as always, Andi |
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Hi Joan,
I was looking at your avatar. You did Herceptin for 1 yr? Off label? When did you start H again? I was confused and wondering. I was on H for 10 yrs. I tried to PM you but I am told your inbox is full. (Same happened to me once, I had to spend a while deleting...) Oh dear. The I tried to e you, but a message comes up that the address you have listed is unknown. So here I am talking to you the old fashioned way. ANDI |
Re: Finally - a Vaccine Trial for me!
Hi Andi,
It's great to see you on the board again, and a relief to know that you're still doing well. You look wonderful!! I took Herceptin off-label when I was diagnosed with early stage bc in September 2003. Since I had 7 positive nodes, I didn't want to risk drawing the arm in the Herceptin trial that didn't get the drug, so I didn't enter the trial. But my local onc agreed to give it to me off-label along with my other chemo (AC and Taxol). The cancer advanced to the lung in early 2007, recurred in the lung in 2008, and spread to the brain in 2008. I've been NED since the brain surgery and 5 dosages of targeted IMRT radiation to the tumor bed. I have been only on Herceptin every 3 weeks since the cancer first spread because I had local treatments which removed each nodule. Adjuvant courses of chemo were offered after each procedure as insurance, but I decided against them. Sometimes I regret that, but I guess that's water over the damn. Thanks for the heads-up on my PM in-box being full. I have to empty it out. I have to change my e-mail address also, as the one listed is incorrect. Joan |
Re: Finally - a Vaccine Trial for me!
Joan- I also looked into the trial with Dr Gilewski and my onc had numerous e-mail conversations with her. However I also decided against it, not quite sure why but it didn't feel right possibly due to the theoretical risk of contaminating my DNA with mouse DNA! Wouldn't want to grow whiskers and a tail, lol!
Ellie |
Finally - a Vaccine Trial for me!
Hey Joan!
Thanks for explaining. How great that your doc was willing to give H off label! When I was orig dx (July '95) they weren't talking about HER2 gene. Then at my recurrence (Aug '98) it was in clinical trials and people were in desperate need of it. So the FDA fast-tracked H and it became available Sept. 28, 1998! I saw Herceptin as a blessing, though being dx w/a highly aggressive canser isn't exactly uplifting, for sure. I figured, at least they have something that stops that defective gene from overproducing! I think each of us has at least one regret. I was told no radiation as I had a mastectomy/no breast tissue. But, it seems some had it even though... So in '98 I began second guessing. Some of my oncs said since I had been orig ER borderline and put on Tamoxifen that that may have caused the metastasis, or -- being HER2+ (80% as they calculated back then) could have been the reason. I keep looking forward. Told that what I had in '98 -- mets throughout my liver, too many to count -- was "incurable, inoperable, and that I would be on long term chemotherapy for the rest of my life. I did 8 mnths of Taxotere, and w/a pleural effusion and peri-cardial effusion, water pouring out my eyes from the dryness, pain in every limb -- I just couldn't take 1 more treatment. To me, if I'd not been on my supplements (against most oncs' advice) during chemo, I wouldn't be here. They all helped keep my ejection fraction at 50 (down from 65%), kept my immune system fighting, fighting off free radicals, blah, blah. And Herceptin (the "easy" chemo) became my long term chemotherapy. After 10 yrs, I took the chance of going it alone, just me, my Spirit, and God. My fav onc always says, if God-forbid I needed H, I can always return. Steph is very brave moving forward w/the new vaccine. Now, I'm thinking... Andi |
Re: Finally - a Vaccine Trial for me!
Hi Everyone - Thanks for all your good wishes for this trial.
This is NOT the 6-vaccine series where you get back your Adoptive T Cells. It is a 3 vaccine trial with no aphoresis. I misspoke earlier when I said 20 participants - it is FORTY in this phase. Here is the link which I thought I also posted earlier (gee): http://depts.washington.edu/tumorvac...inical_133.php You can all read about it and see that the Phase II will also be interesting as a second agent will be added to the Ampligen which I am getting. This means that the phase I am in is a dose determining phase for Ampligen. They already know the optimal amounts of the vaccine and the other immune boosting agent. Stay tuned ... I am just trying to help research get to the next level here. |
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Ellie,
I had the same thoughts! Overall, we've come a long way in HER2 treatments since Andi's original diagnosis in '95. Joan |
Re: Finally - a Vaccine Trial for me!
Good luck Steph! Off you go blazing a trail. It to am beginning a vaccine trial in Tx this week. Not sure if it is the same one though. I'll post me details in a bit for all to see.
Elizabeth |
Re: Finally - a Vaccine Trial for me!
You are my hero.
Amelia |
Re: Finally - a Vaccine Trial for me!
Steph;
That is great news. May this Vaccine keep you NED forever. |
Re: Finally - a Vaccine Trial for me!
As always, such an interesting discussion. I appreciate the learning -- both about the relative ease with which people have found support ($$) to help them access trials, and about the many different trials and the details of them. Where else (but on this forum) could we hear so much about cutting-edge research and those who are helping to move it forward?!
Thanks to all! I will add that I returned on Sunday from a project LEAD workshop in Seattle, where I had the pleasure to hear Lupe Salazar speak. Nora Disis was faculty at my first Project LEAD program in 2003. NBCC's Project LEAD programs always have strong faculty. Are you interested? They now offer two LEAD (science of breast cancer for advocates) formats -- a 2.5 day "workshop" for people to get their feet wet, and a 5-day "institute" which is more intense and delves much deeper. There is an international version, too -- it's not just limited to the US. It is an excellent opportunity both to learn more about breast cancer, to explore advocate opportunities, and to network with lots of amazing and wonderful women. I was going to post something about this when I first got back, but the NBCC website does not have the 2012 LEAD program schedule posted yet so I decided to wait. However, at the mention of Lupe Salazar, Nora Disis, and UofW, I am too tempted to chime in. Here's the website link but if you're interested, wait a bit and check back so you can see if there's a class that fits your schedule. http://www.breastcancerdeadline2020.org/learn/ Debbie Laxague |
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Thanks for posting - I did not even know about the Project LEAD workshop held here. Dr. Salazar almost bubbles over with enthusiasm on the work they are doing here and how far they have come with the research.
One of these years maybe my life will calm down enough that I can do something like that. I was at my mother's that weekend and a few more days. Paty attended the meeting in Mexico earlier this year. She will be at SABCS. Stop by our table in the exhibit hall if you get the chance. Assume you will go? |
Re: Finally - a Vaccine Trial for me!
Elizabeth - tell us how it is going with your vaccine trial. Do you come to Seattle or go elsewhere?
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Re: Finally - a Vaccine Trial for me!
Just wanted to add my congrats to you on joining the trial as well, Steph. You continue to be a source of inspiration and hope to me and so many of us here. May the vaccine help keep you NED forever!
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