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03-19-2005, 11:15 PM
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#1
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Hello All,
I had my third dose of the Her2 vaccine yesterday, along with a BIG blood draw to determine if I'm beginning to make antibodies...at my next visit in April I'll get the results if not before.
I've had a pretty good local reaction, my upper arm has what looks and feels like a giant bee sting where the vaccine was injected! I'll be looking forward to getting the results from the blood draw.
If anyone has any questions, feel free. I'm happy to answer to the best of my somewhat limited ability :D
<3,
Lolly
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03-28-2005, 10:28 AM
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#2
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Guest
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Hi Lolly,
I missed you! I was there last Wednesday with my daughter...Devon Webster and Doreen were so pleased with your suggestion to give us a calendar to diary our symptoms and a map of downtown Seattle....the folder they gave me was great!
We had a wonderful time; went to Fremont and bought coffee and dessert, bussed to Pikes place then shopped 'til we dropped at Nordstroms rack store. A friend brought us to a restaurant called Salty's; a GREAT view of Seattle.
My vaccine site is fine, after this second round, I have had no side effects...I will be heading back again on April 26th, then again on May 20th...how about you? Do you live nearby or do you have to fly in?
Love,
Kim (from CT)
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03-28-2005, 11:12 AM
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#3
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Guest
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Lolly,
If you don't mind, I'm curious why you chose the UW trial as opposed to the one in Windber, PA? How have the logistics been to get up there on a regular basis?
Thanks,
Eric
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03-28-2005, 07:14 PM
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#4
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Kim, sounds like you're weathering the vaccine fine, me too! Seattle is a beautiful city, and we fortunately have some wonderful friends who live 15 mins away from UW, and they are letting us stay with them when we come up for the vaccine, so i'ts really convenient. We usually drive up, it's a five hour trip from where we live in Oregon, but this last time we took the train. It was an adventure, but sort of tireing. My next visit will be April 11, I've been making my appts. month to month, sounds like you're scheduling further in advance...might not be a bad idea :)
<3,
Lolly
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03-28-2005, 07:20 PM
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#5
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Eric, I decided on the UW trial because I didn't want to go all the way across the country! We live in Oregon and it's only about a 5 hour drive for us to UW, much cheaper than flying somewhere. Also we have friends there, and can stay with them. I didn't base my decision on any perceived difference between the vaccines. Also, my oncologist, who I consider a very astute doctor, was enthusiastic about the UW trial. That meant something to me.
<3,
Lolly
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03-29-2005, 07:18 AM
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#6
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Guest
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Sorry I meant to pose the questions to Kim from CT.
Thanks,
Eric
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04-01-2005, 09:24 PM
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#7
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Guest
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Hi Eric and Lolly,
Lolly, I am sorry I will l miss you on the 11th, but I will send you warm thoughts and prayers. Please say hello to the "gang" for me. I envy you the short distance you travel...my daughter is dying to go to Portland Oregon, (we call her our "tree Hugger")..is it all that it is cracked up to be?
Eric, I picked the Seattle study because it seems like Mary Disis has been at this work for the longest time. I understand she first started with the vaccine in 1991. She is well funded and has a good reputation. She also has depth in her research team. She seems to be well regarded with the FDA; they approve her research protocols quickly and the breast cancer fund raisers also seem to respect her.
Frankly, I was leaning toward Larry Lachman's study at MD Anderson at first because I thought the use of a viral vector made more intellectual sense than a peptide vector (the Seattle group uses) for the vaccine; but Larry is still waiting for funding and is not ready to launch the Phase 1/II study yet.
Feeling "a bird in hand is worth 2 in the bush", I applied for the Seattle study. Now that I have been out there 2 times, my hunches have been confirmed. If I understood Dr. Webster correctly, Dr. Disis has been at this since 1991...38% of her original group of women are still alive...she will be announcing the results of her work to date at the next ASCO study.
Oh, Lolly, I have been struggling with hives this month...how about you? I think mine are due to the penecillin I had to take for a UTI...time will tell....
Love Kim
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04-01-2005, 10:55 PM
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#8
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Kim, now that you mention it I have had a few very mild, short episodes of itchiness on my back...so mild I didn't think about it too much, but as soon as I read your post my back started itching!!! Placebo effect?
I changed my appointment to April 22, we'll go in the afternoon and then have a nice evening and part of a day with our friends, then homeward bound.
Portland is a great little city, full of culture and flavor and gritty realism...Also has a pretty good museum, zoo, and Oregon Healty Sciences University where Herstatin was discovered and developed, now on the verge of Phase One trials...
"...The discovery of a naturally produced peptide called Herstatin, with the potential to treat several cancers, has spurred the launch of an Oregon Health & Science University spinoff company called Receptor BioLogix.
"It has the potential to treat a broader spectrum of cancers than Gleevec. It is estimated that 40 to 50 percent of cancers could respond to this," said Gail Clinton, a biochemistry and molecular biology professor at OHSU's medical school...
Unlike Herceptin, Herstatin is naturally occurring and targets more types of cancer--including gastric, pancreatic and prostate....
...Clinton holds 12 patents related to the Herstatin discovery. She expects the company will target gastric cancer for the first-round FDA approval because of its high fatality rate and lack of other treatments. Pancreatic and prostate cancer treatments would follow.
© 2003 American City Business Journals Inc.
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04-02-2005, 11:09 AM
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#9
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Guest
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Kim,
Makes sense but do you mind me asking how you work out your trips to Seattle from CT? Do you fly out there on your own finances or are you using the corporate flights that someone had mentioned a while back?
Thanks,
Eric
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04-07-2005, 07:45 PM
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#10
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Guest
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Lolly and Eric,
Oh, I am sorry, it has been a few days since I checked this site...my kids have taken over our computer and the beautiful weather has been distracting...anyway....
Lolly, I started out with very itchy skin (primarily on my shins, under my arms and over the site where they did a lumpectomy)..then the hives erupted..but they are few and far between, and are easily controlled with benedryl...the occurances are getting less and less severe as time passes so I assume it was the penecillum I was on. The hives always disappear within minutes of my morning dose of synthroid...so it makes me wonder if there is a cause/effect.
Also, I was wondering what kind of diet everyone is on and if diet effects severity of our stage 4...I will post that question on the main page.
Lolly, I will still miss you...I am flying out on 4/25; my apptment is 8 am on 4/26 and I am flying back at 2 pm on 4/26. This is the first time I have done it in 2 days; we will see how it works out.
And ERIC! Sadly, I am paying privately for these trips. I had heard a whisper about the corporate program; but frankly, did not know enough to check it out. These visits cost me in total about $500 per month...thank God my disablilty was recently approved....do you have any more info on the corporate program?
Oh, Lolly; thank you for sharing the info on the herstatin...VERY interesting....it seems like we are just around the cornor from a real break through on this disease....
Well enough perseverating...off to bed...please take care of yourselves...and maybe one of these months our visits will overlap...
Love Kim
pps, My May visit is on the 20th...
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04-10-2005, 10:31 PM
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#11
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Guest
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Aloha,
How does one contact the University of Washington about the Her 2 trials?
Are these trials being conducted in other parts of the United States too?
Elaine
http://langetc.tripod.com/health11.html
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04-11-2005, 05:10 PM
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#13
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Senior Member
Join Date: Aug 2001
Location: Oregon
Posts: 1,756
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Elaine, if you click on the "News" page above, then click on "NEW Clinical Trials Page, you'll find links to information on various HER2-related trials going on around the country, including UW's vaccine trial which to my knowledge is only being conducted at UW/Seattle at this point. However, there are other vaccine trials elsewhere, just not the same vaccine as UW's. Contact information for each trial is usually found contained in the trial outline, usually at the bottom of the page. Good Luck!
<3,
Lolly
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04-12-2005, 11:06 PM
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#15
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Guest
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Hi Lolly,
Mahalo for the help. I am sending the info to the oncologist and saving it to read later. I am new to the Her 2 Support. Org website and I am still learning my way around.
Peace,
Elaine
http://langetc.tripod.com/health11.html
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