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Old 02-04-2005, 12:40 PM   #1
Kim (mamacze)
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Lolly, Brian, Kim, Marianne, etc,
Are you having a good response to the gene vaccine? Any discussion with dr. Disis about how long it should last? I am on my final screening; (waiting for one last clean CAT scan) and I am curious about your progress to date...(ps Lolly, thank you for the encouraging words today!)
Kim from CT
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Old 02-04-2005, 03:04 PM   #2
Lolly
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Hi Kim, I don't know what my response has been yet, they won't be testing for antibody levels until I receive the third vaccine, I think. So it's early days for me yet. I feel fine, but I don't think I can say it's because of the vaccine yet, as I've felt good for months now, since going off Navelbine. Maybe Brian will post, his wife has finished up the trial.

Love, Lolly
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Old 02-06-2005, 08:16 AM   #3
Brian
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Dear Lolly, Kim and Marianne,

Sorry, I haven't posted in awhile, but we have had a difficult January. Lisa completed her sixth vaccine treatment on January 4, 2005. We came home and the following week she took her quarterly scans. To our shock two small tumors appeared in her left lung where her old tumor had been. To make a long story short Lisa had the upper lobe of her left lung removed on January 28, 2005 and she is recovering as we speak.

Although this is bad news, there appears to be some silver lining to this cloud. Lisa was tested after her second vaccine treatment and was having a strong immune response (as were all of the participants up to that point.) When these two small tumors appeared (3mm and 8mm) in Lisa's lung and we decided to have surgery, we immediately contacted Dr. Disis and Dr. Salazar. The requested that staining for t-cells be done to the tumors to see if the vaccine was having an affect. We received the pathology report two days ago and discovered (among other good things) that in fact two different types of t-cells had "inflitrated" the tumors and were "reactive", whatever that means. We contacted Dr. Disis and we have decided to obtain the slides from our pathologist to do more testing. The good news is that at this preliminary point the vaccine appears to be doing its job. More tests will have to be done to see what is going on, but at this point we have great hope.

In addition, the pathology indicates that the cancer was small and limited to a very specific area. Dr. Disis is hypothesizing that this could be the result of the vaccine. At this point our oncologist believes that the surgery might be all of the treatment we need in light of the early point at which we removed the tumors, however he is proposing to add gemzar to her herceptin treatments for the next few months as a precaution. We plan to investigate further the possible impact the Gemzar may have on Lisa's immune response and further to see if can further boost the response if there would be a negative affect.

In sum, we have had a set back here, but I believe that in the end the vaccine will be of benefit and that ultimately we will achieve the permanent remission we seek.

I will keep you all posted.

Good Luck and God Bless, Brian
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Old 02-06-2005, 11:45 AM   #4
Lolly
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Dear Brian,
Thank you for sharing this with us. You and Lisa are in my prayers, and I'm hoping her recovery goes smoothly. Please do keep us posted, and I hope you don't mind if I e-mail you privately.

Love, Lolly
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Old 02-06-2005, 02:01 PM   #5
MarianneWA
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I had my last vaccine back in April 2004, and because it was a trial done by GlaxoSmithKline and just administered by UW, they don't get any info. on my bloodwork. We may all hear about it when the trial is complete and they publish the results.

I'm feeling fine - here's a brief bio:

Stage II April 2002 (grade3, her2+++, er/pr-ve, poorly differentiated, vascular invasion, extensive necrosis at center of tumor, blah blah -all bad signs!) , lumpectomy, 1.8cm tumor, 1/27 nodes +ve, 4 Ac, 4 Taxol, 35 rads. Began vaccine trial January 2004.

Marianne
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Old 02-06-2005, 06:46 PM   #6
mamacze
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Aww Brian and Lisa,
For 13 years you have been slogging through this and to hear your uplifting attitude in the face of this true crisis is a real testimony to your perserverance, faith and "kick-ass" attitude. I am so proud of both of you. Thank you for the update, please keep updating the rest of us who look at you in awe for making it this far!
And Mariaane and Lolly...
What counts to me is that you are all doing OK...you are all holding your own...thank God for health even if it is just to get through the next day...thank you all for sharing; and please lets keep each other posted on this discussion board...you all give me such hope...
XXXOO
Love, Kim (from cT)
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Old 02-07-2005, 09:30 AM   #7
Brian
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Dear Ladies:

Thanks so much for the encouraging words. I have great appreciation for your courage and tenacity in the face of this awful disease. My wife and I are determined to do whatever we can to prevent the return of this disease and to try any reasonable means of treatment to that end (that means no witch doctors.) After talking to Dr. Disis about their follow-up studies from 1996 and after finding that Lisa's tumors contained "reactive" killer t-cells, we have hope that the vaccine treatments will have a beneficial effect. We are also encouraged that we caught this recurrance when it was small, contained and localized. Our doctors would not have authorized surgery if they thought it would not have helped. This was not a "palliative" treatment. Lisa also had a complete response to her herceptin treatments and was NED before this for almost two years. Our hope is that this a set back and nothing more.

I know that you all have been faced with the same trials with this disease, and I also know that progress is being made every day toward containing and curing it. If we all can stay around long enough, we will be here when the cure is finally found.

All e-mails are greatfully accepted.

God Bless you all! Brian
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Old 02-07-2005, 11:24 PM   #8
Kim in CA
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Dear Kim,

I received my last vaccination on Jan. 25th. I have not yet contacted Dr. Salazar to see if I have had an even greater T-cell response since they last measured it. I will post as soon as I find out. In the meantime I continue to feel great. I did notice a decrease in my energy level after this last blood draw, but other than that I continue to do well, much better than I could have ever imagined!

Kim in CA.
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Old 02-07-2005, 11:43 PM   #9
Kim in CA
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Dear Brian,

I am really sorry to hear of Lisa's setback. I haven't posted in awhile, so it's always sad to learn that one of us has hit a bad spot in the road on our journey to reach NED. I do believe Lisa will get there though and am keeping you both in my prayers.

Kim in CA
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Old 02-08-2005, 10:40 AM   #10
mamacze
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Dear Kim in CA,
Please let us know your T-cell response...and I hope your energy levels bounce back up...hopefully it is nothing that a good strong cup of coffee (or green tea!) won't cure...let us know what Dr. Salazar says...

And Brian (and Lisa)...
I think you are right; if we can all just hang in there a few more years; we may be on the cusp of new and promising technology with these vaccines...and ohhh, I can see us rockin' those grandbabies in the not too distant future....
XXOO Kim (in CT)
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Old 02-08-2005, 10:42 AM   #11
mamacze
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ps Lolly,

I LOVE your picture...if I wasn't so darn computer illiterate; I would post mine as well; now come on everyone; we should make an effort to get pix or family pix posted with our names...I will put my 17 year old to work on it...!!!

XXOO
Kim (in CT)
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Old 05-07-2005, 08:10 PM   #12
mamacze
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Hey, Kim in CA
I was wondering if you heard what your t cell response was...if you have a moment, can you share your update with us?
Love Kim from CT
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Old 05-11-2005, 01:29 AM   #13
*_Kim in CA_*
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Hi Kim,

Sorry I haven't checked in for awhile. My immune response seems to have dropped off a bit. I had a very robust response measured after my 2nd vaccination. Then, the measurements they took after my 6th vaccine showed I no longer had what was considered a positive response. I still have not received results of my most recent labs, drawn on March 29(I know, I know, I need to call them and find out!) but, my tumor markers were the lowest they have been since my original diagnosis in 1997, at my last doctor visit and that was great news for me!

I will try and post the results of my latest bloodwork from UW soon. In the meantime if you or any of the others ever need more info, please email me directly if you'd like because I don't check in as regularly as I used to.

Take care,

Kim in CA
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