Re: Finally - a Vaccine Trial for me!
 

StephN glad that you can join that trial, may you stay NED forever indeed!

Re: Finally - a Vaccine Trial for me!
 

Re: Finally - a Vaccine Trial for me!
 

Oh wow, my weals look totally different. I just popped up and saw you were in a vaccine trial. I am so happy for you.

I'm popping out to San Antonio in a few weeks for my next booster myself.

Re: Finally - a Vaccine Trial for me!
 

Hello -
Hope you are all enjoying this Thanksgiving weekend.

Thanks for all the discussion on this thread regarding the vaccine trials. This seems to be a very active area of research.

I had my second round last week (of a total of three - and no boosts). All is well. No flu-like symptoms at all - I think because the immune boosting agent works differently than what was previously used.

This is easier than getting Herceptin, and I hope it will help keep my immune system on high alert for any odd ball cells!

Re: Finally - a Vaccine Trial for me!
 

congratulations steph on getting into this trial. you are doing so fantastic and u are a hero for the newly diagnosed like myself, who read your signature line.

Re: Finally - a Vaccine Trial for me!
 

I am glad you are doing well Steph. Keep up the great work.

Re: Finally - a Vaccine Trial for me!
 

I also am so glad to read you're doing so well Steph and long may that last!!!

Re: Finally - a Vaccine Trial for me!
 

Reporting in that I had my last (of three) vaccines a couple of days ago and I feel just great. Since it is a trial and there are 4 doses of the immune booster being given, I don't know which one I am getting - the high, medium or low amount.

But I DO know I am getting some, just hope it is not the lowest amount as I have no side effects that I can tell.

Anyway, I go again for a blood draw in about 4 weeks and then again to give blood 11 months after that.

I met a woman who is coming all the way from Australia for this vaccine!

Re: Finally - a Vaccine Trial for me!
 

Following with interest! There are no vaccine trials in Australia at all. It seems there is a lot of interest over there but whenever I speak to anyone here about it I am met with a mostly negative response. Let's hope that there is something magic in there for all of us - including the Stage 4 gals.

Re: Finally - a Vaccine Trial for me!
 

Hello Amanda -
The lady I met this week who is coming for the trial lives in the next valley over fom the Hunter outside Sydney. She said it was her oncologist who told her about the trial. So, there are some doctors who ar clued in about vaccines. The lady did not know about this web site.

Hope all is giong well with you. Are you still in the Bolero trial?

Re: Finally - a Vaccine Trial for me!
 

Hi Steph - she comes from a beautiful part of our country then.
Yes - I am still on the Bolero trial - I have not really seen any reduction but I have now had 6 months of stable. I have had a partial response in my axilla node 21-13mm but not one of my lung mets has gone (they are small) or really changed. My skin met has also changed dramatically in appearance but it is still there and a little smaller. My onc has said if I hadn't had the positive biopsy on my skin she would wonder whether what the scans are showing in my lungs was actually cancer but given I had clear scans prior to my surgery in February and I am an otherwise healthy 39year old women there is little else to explain it. I tolerate the treatment very well now my dosage has been sorted and we think I am receiving the Everolimus so I hope to continue for quite some time yet.
The thinking behind the vaccine is just so appealing to me. Was there any talk about vaccines at San Antonio?
Amanda

Re: Finally - a Vaccine Trial for me!
 

Congratulations Steph!

I'm very excited for you. My paperwork for the trial is sitting on someone's desk at the UW. I'm waiting for the phone call. I will watch for your posts and how this goes for you. I hope to meet someday.

Tina

Re: Finally - a Vaccine Trial for me!
 

Hi Choyces -
Did you get into this vaccine trial?

I went today to give the first post vaccine blood draw - a BIG one!

Had some news from Dr. Salazar that they are suspending enrollment for a while - they have 28 right now.

They want to perform an interim analysis and find out which of the 4 doses of the Ampligen are giving immune response. The idea is that if there is a dose that is not effective they will stop that arm/arms and go forward with the rest of this phase after they analyze the first 24 of us for immune response.

They hope to let those of us who have had this combination know about our immune responses soon.

At this point the estimate to resume new enrollees is April sometime.

But anyone who is interested can contact the U of W Tumor Group and start the process.

Re: Finally - a Vaccine Trial for me!
 

Hi Steph,

I didn't get into Phase I of the 133 Vaccine trial. I have to be on herceptin for a year. They have my paperwork and have stated that if I stay in remission I will most likely be admitted into Phase II, which will start in about 6 months. I'm a little disappointed, but will continue with the herceptin. It's starting to give me some of the muscle aches others have reported. I'm continuing to walk and swim through it. I'm building a near infrared light box and canvas tenting system to turn my bath into a sauna. I expect this to help with pain and keeping my system clean.

I'm going back to my classroom in March!

Thank you for all the great information and please let us know how the trial is going for you and the other trailblazers.

Tina

Re: Finally - a Vaccine Trial for me!
 

Hay Tina-
I am sure the phase II version of this trial will be timely for you. After you have your year of Herceptin (believe me it IS worth it!), they second phase should be up and running. Just check with the coordinator when you get close to the end of your Herceptin.

Very enterprising of you to gin up the home made sauna! How is it working?

Re: Finally - a Vaccine Trial for me!
 

This trial (the 133 at U of W Tumor Vaccine Group) is back in action after a short break to catch up with the lab work. If you are interested, contact the U of W Tumor Vaccine Group soon as they are working through the waiting list right now.

Re: Finally - a Vaccine Trial for me!
 

Thanks, Steph.

I live in Boston. I asked my oncologist to look into vaccine trials here. She said she would.

Keeping my fingers crossed for you!

Re: Finally - a Vaccine Trial for me!
 

Congrats Stephanie! this is great!!!
love
A+
sarah