Topic: TRIPLE POSITIVE GROUP

May 26, 2012 07:35 PM shore1 wrote:

tonlee - Thanks for all the eye info. Good to keep in mind, as I've only been taking tamoxifen for about 4 months so far. And if its true about the crying, at least im well-detoxed by this point.

May 26, 2012 11:28 PM fluffqueen01 wrote:

dance....yes it is a blind study. We either get Leukine, which is like neulasta, or leukine mixed with the vaccine, but don't know. Most side effects are localized, with some swelling, itching, hives. She old me that since I had never had neulasta, I might be achy and slightly feverish after the first one, but I wasn't. I will be anxious to see how next week goes. Special K.....I think that study details note that if the doctor feels it is needed to balance the study, they can put you in either arm. Don't know if that really happends or not. YOu will also have to sign off on a paper for the boosters down the road. Apparently some of the women have noted that after their booster and they got home they were breaking ouot in ginormous hives

Tonlee-good info on eyes. Mine didn't change, other than being watery on chemo, but my eye doc always tells me not to use visine. They hate it.

May 27, 2012 05:25 PM Jennt28 wrote:

I have the single use eye-drops. They come in a box with individual little plastic vials. All the pharmacies seem to have them in the same section as the usual visine...

Jenn

May 27, 2012 06:53 PM, edited May 27, 2012 06:59 PM by Chachamom

Toni, Vickie, and Arlene......I thought it was an automatic chemo/Herceptin treatment too! That's why I went for a second consult with a new MO. She also was concerned about the HER2+ status.......and ordered the oNcotype done which my first MO wouldn't do. I guess I'll get more info on Tuesday....from what I understand, the small size (3mm largest of a multifocal IDC)...along with no positive nodes is the issue......I'm confused, but trust this new MO. Vicki: we spent a week in a villa outside Florence (Mercatale)...a couple of days in Monteroso (Cinque Terre), and tree nights in Venice (my favorite!). It was a trip of a lifetime for me.....but hopefully not my last! Nice to get away from reality for a bit!

May 27, 2012 09:59 PM Chachamom wrote:

Thanks Vickilind. I've yet to find anyone else with HER2+ that didn't have the chemo and/or Herceptin....my MO says there is not enough people with <5mm>
I'm waiting for the other shoe to drop!

May 27, 2012 10:15 PM dancetrancer wrote:

May 27, 2012 10:24 PM scottie52 wrote:

Hello fellow Trip3's Sure wish I'd fould you all back in July when 1st diag. Down to only 4 Herceptin treatments. Had already lined up BS and PS, 4 a simultanous mastectomy and impants, now one has gone MIA (long story) lol! Will have to reinterview and reschedule. Thought I was almost done. Have a powerport but all but infusion team refused to use it, so got poked all the time. Had to lay off hercpt 4 about 9 wks due 2 questionable MUGA, but back on til the end, just a lower dose. Will update when I have more to say.

May 28, 2012 03:01 PM Chachamom wrote:

AA: my first MO said Herceptin would ONLY be given with chemo because that is the standard. My new MO said although it is the standard she doesn't always follow "protocol"
(I love her for that!). She said she has a patient now that gets Herceptin alone....age and other health factors taken into account. .....and they're BOTH Kaiser doctors so I don't think it's an insurance issue...more a doctor/patient issue

May 28, 2012 04:11 PM lago wrote:

wasq ij966 I think they are testing early breast cancer (disease free) that is high risk: node-positive or high-risk node negative breast cancer patients with any level of HER2. I may be wrong but I think those of us that are node negative and triple positive are of moderate risk. I believe node negative, HER2+, ER/PR- is high risk the node negative that would be eligible.

But I might be wrong

May 28, 2012 11:29 PM fluffqueen01 wrote:

Wasg....I am in that trial. A highly positive HER2 status was all it took for me. I is a phase two trial, so there would still be one more to go before it would ever be public. SpecialK is getting ready to start it also, but she was HLA+ (some kind of typing of your blood), so she will be in the other arm. I was HLA-, so I am in the AE-37 side. I don't know if I am getting the vaccine with an immune system booster, or just the immune system booster.

I ask the oncology nurse if she felt there really was merit to the study as they looked back from the original start to today. She said she felt there was...she wasn't sure at first because the group was very small, but now they have expanded it in this phase and she said what they have been seeing is very positive.

So....that is all I know, but my thinking is that a lot of women had to participate in a trial to get herceptin approved, so if I can help by doing this, and it really turns into something, I will feel good about it. Side effects are very minimal and mostly itching and hives around the injection site. (I haven't had those yet).

May 29, 2012 03:35 AM jackboo09 wrote:

Hi ladies
I don't know enough about how trials work. I live in the uk. When can I expect this vaccine to be available here?

Liz

May 29, 2012 11:35 AM kayb wrote:

jackboo - that particular trial is only being done in the US, Germany and Greece.

Clinical trials go through 3 phases. The first phase only has a handful of participants and they test for toxicity. Phase 2 (like this vaccine trial) recruits more widely and tests for efficacy. If the therapy appears to work, then phase 3 expands to an even larger group to see if the results hold up across a larger sample. Only if all of that is successful and the FDA approves, will the drug be available for use.
It's a long process and it's easy to see why it can take more than a decade for new therapies to make it to general practice.

Since this vaccine is still recruiting for Phase 2 and they plan to follow the patients for 5 years, well - no telling how long it will be before we see something like this available to us :-(

If you're interested, the website
clinicaltrials.gov shows all the trials approved by our FDA. You can search it for things that might interest you, and if you scroll to the bottom of the page of any trial, it will list all the places around the world that trial is being done. I'll bet your government has a similar site!

May 29, 2012 05:32 PM SpecialK wrote:

rozem - I went back full-time 30 days after the 6th TCH.  It did not go well for me, lol!  I knew I was having surgery 3 weeks after I went back, but I went back because I had exhausted all my FMLA, STD, ADA accomodation and LTD was indicating that they felt I would qualify for SSDI (social security disability) because of the number of surgeries, LE and my AGE!!!  So I just went back to work on the arbitrarily agreed upon date.  I was OK Mon and Tues - by Wed I was coming home and falling asleep in my scrubs, then waking up a couple of hours later unsure of whether it was day or night, and unsure of whether I had gone to work or not!  Needless to say, Thurs and Fri were a mess.  I did that for 3 weeks and then resigned, with a re-hire clause, because I was having the left expander put back - would be starting twice weekly PT for the LE, and weekly fills, as well as still receiving Herceptin every three weeks - with echo, CBC's, etc.  Just felt that work would suffer, and with direct patient care (transfusions) didn't want to make a mistake and hurt someone.  I had 5 surgeries in the 3 months prior to the start of chemo and that put me behind the eight ball, I found it difficult to rebound.

May 29, 2012 08:21 PM Chachamom wrote:

Hello, ladies!
My MO told me today that my Oncotype came back at a "low to intermediate" risk
(score 20), and that based on that I have a 1 out of 8 chance of recurrence in the next five years. She feels chemo would be higher risk than any potential benefit, so I'm going to be on Tamoxifen for 1 1/2 years and then switch to Arimadex for the next 3 1/2. I'm also getting follow up ultrasound and CT scans because I have several cysts on my liver, pancreas, and one in my ovary. Fingers crossed!
Thanks for all your support!

May 29, 2012 09:51 PM shore1 wrote:

Rozem, I have been on leave from work since august. I will have to go back in September, but getting the stress of work off my plate has been good for me. I wish I didn't have to go back at all, but financially, I do. Im a lawyer, and I took the leave of absence because I knew I would not be able to focus and would likely make mistakes as a result.