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12-30-2011, 06:21 PM
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#1
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Member
Join Date: Sep 2011
Location: Friday Harbor, WA
Posts: 14
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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
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01-12-2012, 07:44 PM
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#2
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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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.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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01-12-2012, 09:48 PM
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#3
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Member
Join Date: Sep 2011
Location: Friday Harbor, WA
Posts: 14
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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
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03-05-2012, 07:30 PM
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#4
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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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?
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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03-05-2012, 07:32 PM
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#5
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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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.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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