TRIPLE POSITIVE GROUP
Comments
-
Kay, thank u, ddnt even think abt that, and i have had my ordeal w l/e ish side effects after node biopsy, thank u
0 -
GO BIG BLUE!!!
0 -
Fluff, do you think completion of primary standard therapy means completion of 1 year if herceptin also or just completion of chemo? I think I meet other criteria, but will be getting herceptin until nov 2012 so maybe im not eligible.
0 -
Awnoo.....glad to have a fellow Colts fan on here!
0 -
shore - the way I read the exclusions it does not say Herceptin must be over, just chemo.
fluff - they are recruiting at Walter Reed, which I could def go up for. Based on these criteria I also qualify and have military med benefits. They are recruiting in Hawaii too - which sounds a lot nicer, but that is a bit of a commute. The only thing I may have a problem with is that I am allergic to albumin so if they use that for the vaccine itself I can't do it.
0 -
Fluff I'm curious if I would qualify since I am node negative, LVI negative and node negative. My last herceptin was Sept 6th, last chemo Jan 18th 2011. I think it's either too late or I need to be either LVI or Node positive and within 6 months of finishing chemo.0
-
lago - you are grade 3 and Her2+ which satisfies the first requirement even if you are node negative, I think you qualify if your last Herceptin was within the last six months if I am reading it right.
0 -
Do you know where I could find locations for this trial? What are you doing up? I know I need to get to sleep too
0 -
SpecialK,
Gonna have to look at it...wonder if they're offering it at Wright Patterson...
0 -
You don't have to be done herceptin? I would like to see if I qualify. Is there a number to call? My cancer center will actually be starting a vaccine trial, but I don't qualify. I forget why.
0 -
Awnoo, you're welcome. I got a pretty hard case of LE right before starting rads. It is under good control now though. But it is always in the forefront of my thoughts. Good luck with your BMX.
0 -
I just shot off an email to the North Carolina arm of this to see how to get in...I meet the criteria, but don't think they'll take me because of cardiotoxicity. But doesn't hurt to ask!
0 -
Kay what did you do to get your LE under control. Mine isn't to bad but I do wear my sleeve. There is a spot that's sort of thick. My LE MD says it may go away but so far I've had this since late summer and I'm thinking no.0
-
Does anyone know what HLA-A2 is? I've never looked at trials before, and can't make sense out of some of this (at the NCT00524277 page). Also, does Phase II mean that availability of the vaccine (if ever approved) would be years away from now?
0 -
Phase I trials: These first studies in people evaluate how a new drug should be given (by mouth, injected into the blood, or injected into the muscle), how often, and what dose is safe. A phase I trial usually enrolls only a small number of patients, sometimes as few as a dozen.
Phase II trials: A phase II trial continues to test the safety of the drug, and begins to evaluate how well the new drug works. Phase II studies usually focus on a particular type of cancer.
Phase III trials: These studies test a new drug, a new combination of drugs, or a new surgical procedure in comparison to the current standard. A participant will usually be assigned to the standard group or the new group at random (called randomization). Phase III trials often enroll large numbers of people and may be conducted at many doctors' offices, clinics, and cancer centers nationwide
So the answer would be yes, years away from approval.
0 -
lago - I was up because I am sleep challenged!
Here is a link: It shows the locations conducting the trial and has contact info for recruitment.
I was having trouble posting the link, so go here click on breast cancer in the alpha list and it is fairly near the top
I believe the HLA part is our Her2. Not sure about whether or not completion of Herceptin is necessary, I know you cant be too far out from having finished.
0 -
Lago, it's a relative term. Compared to where it was, it is under control. That's because I faithfully wear the sleeve and glove every day and a night garment every night. At its worst, during rads, my right arm was a little 20% larger than my left. I couldn't even get my arm in the mold they made for me at the simulation a week earlier. Now it is about 6% larger and staying very stable, so relatively speaking it's under great control. It's still slightly swollen, but I can see my wrist bone a little and my veins a little, but not as much as the left arm. The MO told me I'll get to the point where I won't have to wear the sleeves every day, but the PT is not so sure. PT did tell me the compression is the best thing. I was doing some exercises and massage, but he told me it's not really necessary to do that any more, just to wear the sleeve every day. That is the only thing that will keep it from swelling up like a balloon again according to him.
0 -
HLA-A2 (A2) is a human leukocyte antigen serotype within HLA-A "A" serotype group (wiki) - it's sortof similar to blood groups A, B and O only different. It's a major histocompatibility class 1 antigen - I think those are the what they match when they do transplants.
0 -
Kay I wear my sleeve all the time but I was told just the opposite. That if you exercise eventually you won't have to wear the sleeve all the time except for exercise and flying. Ironically my right arm has always been bigger than my left. The left has the LE. There is just a little noticeable swelling that most folks wouldn't see unless I pointed it out. I don't have a night sleeve.
Thanks SpecialK
0 -
omaz - from what I could discern the HLA is part of the vaccine, so they have to determine if you are already pos or neg for it prior to how you are sorted in the trial. Was that your take?
0 -
SpecialK - I think the HLA + or - refers to the innate type of the person - either someone has the HLA A2 antigen or they don't and the trial is testing the responses to the vaccine depending partly on the the HLA type of the person.0
-
I just recived the document with trial participation details . Pm me your email address and I will forward it if you want the information.
0 -
The hla + or - decides which version you recive.
0 -
Congratulations SPECIAL K AND PEJKUG!!! Wow!!! time is going by so fast!! Cheers to you both!!
0 -
Oh and welcome moonflower!!! these ladies r the best!!!0
-
On the Vaccine trial...here is the response I received.
Thank you for your interest in
the breast vaccine trial offered at Wake Forest. Attached to the email is our
consent form for your review. I have also included additional information
regarding the study visits required and general operating procedures.As you may be aware, all
medical records from your treating oncologist will need to be reviewed prior to
signing the consent. Your treating oncologist will also need to write a brief
note (can be on rx pad) stating that he/she is aware of your interest in
participation and validates that you are in good health and without metastatic
disease. Recent blood work will also be needed within 2 months of enrollment:
The blood work needed is a CBC with diff and CMP- Example: if blood work was
drawn on 12/15, you would have until 2/15 to enroll. Once the records are
received and study eligibility is confirmed, I will contact you to set up a time
for you to come to Wake Forest to sign the consent and have the HLA blood draw
performed. Blood draws can only be done M-W since the lab in D.C. is
closed over the weekend.The HLA results are normally received at Wake Forest within 72hrs from the day of the blood draw. Your trial arm randomization is based on the HLA results and is assigned by the Chief
Study Nurse at Walter Reed. I will then call you to notify you that the randomization
is complete and will discuss the date/time of when the DTH and vaccination #1
can occur. This visit will require you to be in North Carolina for five
days (Mon-Friday). Please remember that the trial is blinded to you and
that information about the trial progress is not distributed to the Study
nurses or study participants.Example: Monday: Blood draw and
DTH #1 admin ( length of visit 30-45 minutes)
Tuesday: Activities on your own
Wednesday: Injection site evaluation, digital photo of site,
and inoculation #1 (length of visit 1.5 hours )
Thursday: Activities on your own
Friday: Return to Wake Forest for injection site review ( length of visit
15min)The remaining visits will require a total of 3 days in NC. This will occur 7 times. Each visit must occur 3-4 weeks apart from the date of the previous injection.
Example:
Mon, Tues, or Wednesday: Blood draw and Injection ( length of visit 1.5hrs)
Return visit (no weekends) : injection site review ( length of visit 15 minutes)
Keep in mind that we operate on the calendar that Walter Reed follows. There may be holidays that they honor that we do not . This may impact our scheduling of blood draws . This is usually
not a large hindrance.The booster portion of the trial is similar to the active injection portion with the exception of an additional blood draw. The boosters occur at 12,18,24, and 30months.
Example:
M-W: blood draw and injection (length of visit: 1.5hrs)
Return 48hrs later: injection site review ( length of visit 15 minutes)
Return for blood work only 3-4 weeks from the date of injection: M-W
I realize that this is a lot of information. Please review this and call me with any questions. There are no payments for participation or charges from Wake Forest to participate. Please contact me if you would like to establish a visit to enroll in the study.
0 -
I have all the details of this trial in a word doc she sent...if you want them just PM me!
0 -
That is a lot of time commitment, and a long commute, especially if you have young kids. What are your thoughts? If I do it I would go to Walter Reed directly, only because my son lives there (not at Walter Reed, close by, lol!) and I have a lot of friends up there that I have not been able to see in a long time.
0 -
I can't afford that many flights out there. I'm out
0 -
Yes it is a lot of time. I'd have to stay in a hotel. I'm looking at Lexington NC as about 7 1/2 hours from me and Washington is over 9. And I hate Washington. The traffic makes me cuss.
Plus I'd rather enjoy NC....maybe I can find someone here (in Ohio) who also is interested and we could split the expense of hotel....
Kids....lots of details to work out if I decide to do it.
0
