Finally - a Vaccine Trial for me!

[Lauriesh]

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

[Jean]

Steph,
Sending you prayers and the very wishes!
Jean

[StephN]

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.

[Ellie F]

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

[StephN]

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.

[Joan M]

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

[Andrea Barnett Budin]

Dearest Steph, my Sister,

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.

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

[Andrea Barnett Budin]

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

[Joan M]

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

[Ellie F]

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

[Andrea Barnett Budin]

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

[StephN]

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.

[Joan M]

Ellie,

I had the same thoughts!

Overall, we've come a long way in HER2 treatments since Andi's original diagnosis in '95.

Joan

[Elizabethtx]

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

[schoolteacher]

You are my hero.

Amelia

[krisvell]

Steph;
That is great news. May this Vaccine keep you NED forever.

[Debbie L.]

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

[StephN]

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?

[StephN]

Elizabeth - tell us how it is going with your vaccine trial. Do you come to Seattle or go elsewhere?

[CourtneyL]

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!