TRIPLE POSITIVE GROUP
Comments
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Oh yeah SpecialK - how could I forget about Greece!!!!
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SK...you will have a ton of free time. This last time, the week one, I went in on Monday....bloodwork, and a test of the actual vaccine on my skin (all done on your thigh). Was there about 90 minutes only because they had a hard time getting my blood to come out (was regretting being deported). Went back on Wednesday....took pictures and then gave me the real stuff with Leukine, or Leukine, whatever I am getting. Sat there an hour while they watched to make sure I didn't blow up or have some kind of reaction....took about an hour. Went back Friday...checked everything out and sent me on my way...20 minutes.
From here out, I will go one day, have bloodwork and get the vaccine and then go back for the 15 minute check two days later. I am flying in this time, on Wednesday morning and out on Friday about noon.
I am in the AE-37 arm. I am also HLA negative if I remember correctly. She said it is nearly impossible to figure out what I am receiving as most of the side effects are related to the Leukine. She also said it is cumulative, as I was all smug that I didn't have any itching at the time. Now I am waiting to break out in massive hives, lol.0 -
fluff - the amount of free time is another reason I would like to go to D.C. because I know so many people and there is lots to do. I did have my histologist friend do my A2 typing, I am positive so I would get the GP2 peptide if I get the real McCoy - if you are in the AE-37 arm than you are A2 negative. I had dinner with a friend tonight and was telling her about this trial/study and her DH is an airline pilot, she said she would give me "buddy passes" to fly up. I would have to go stand-by but I am only looking for one seat, so yay! So free flights and free places to stay - why wouldn't I do this?
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Wow specialK - how cool that you could do this essentially free!!!
So, to both of you - neither of you will know if you are actually getting the vaccine or not, right? Until after the study? (It's blinded?) Sorry if I asked this before. Chemo brain...ah, ha, ha...just now starting to use that excuse!
What side effects/risks did they tell you were involved? (aka like the itching)
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Ok, since this is a share the information thread...lol. Most of you probably already know this. Color me far behind but here it goes.
Eyes. Vision. Went to a very skilled wonderful civilian Opt. yesterday because, since taking Tamoxifen my eyes have just not been right. I've always had mega great vision etc, but along about chemo I got a ton of floaters, eye strain, and sometimes I can read from a distance, and sometimes I can't. Not to mention the annoying halo effect at night. I wondered if 9 months (about on Tamox) damaged my eyes.
The Opt is VERY familiar with Tamoxifen. Said there is tamoxifen toxicity in the eyes in a very small number of women. So small in fact, in his 40 plus years, he's never actually had a patient with it, but has read up on it, talked about it at seminars, etc.
Good. Great.
So he runs me through a series of tests, the most thorough eye exam I've ever had. In the end this is what he told me.
Between the ages of 38-42 most people with good (no glasses) start to need reading glasses of +1. It's an age thing related to the eye and the changes the eye goes through. You can't do anything to stop it. It happens in every single person on the planet. It may come earlier, or even a few years later, but it really comes down to when and not "if."
So, in my case, these changes were likely ushered in on chemo and which happened at the same time I got older..har. Estrogen, while not my friend with BC, helps to keep the eyeball hydrated (didn't know that!). Once a woman loses her estrogen, or starts losing it, the eyes become dry.
So? Dry eyes are no big deal right? (And yes, I asked him that.)
Dry eyes are essentially dry spots on the cornia...and if left untreated long enough, can lead to permanent vision loss and even blindness! He said if it gets out of control things can get really ugly.
I have no estrogen, and my eyes have "several dry spots on the cornia."
Everything else is normal, except I need reading glasses of +1.
Here's the part I wanted to share:
He said I have to use eye drops, tears, twice a day religiously for the rest of my life. First thing in the am, and then after dinner.
Here's the interesting part.
He said most people use bottles of Visine, bottles of gel, etc, or whatever. Over the long haul, that actually causes more damage to the eye than the temporary relief it provides!
It appears the bottles are required to have preservatives added to keep bacteria from forming since they are made for many uses. While this isn't a big deal for a once-in-awhile user, an everyday user suffers irritation to the eye ball (usually unknown to them) while the preservatives are actually irritating and over the long haul, damaging the eye tissue.
So he told me to go to any drug store and buy the "preservative free" or "no preservative" single use tears, or drops. The key is that they be preservative free and single use because as of right now, all preservatives used are harmful to the eye over long periods of time. He said brand does not matter, cheap or expensive, just that they be single use and preservative free.
Just wanted to share because I've read a lot of women here suffer from dry eye....and who knew that long term eye exposure to preservatives could actually cause damage?
Not me!!
And just as an aside, back during chemo when the last Opt wanted to put Pyrex stints in my tear ducts, the current opt read that in my chart and about hit the floor. He said, "That is so old school. It isn't even recommended anymore in the field. We've discovered it does more harm later down the road, than good in most cases."
So glad I went with my gut on that one!!
Also posting this on the Tamox thread.
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As ANOTHER aside:
Did you know crying has a "detox" effect? Real crying not fake.
There was an actual study! The tears of actors were analyzed against the tears of people crying for a reason, ha, and the actors group were "clean" but the people crying for reals, full of toxins!
He was such an interesting person!
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Thanks for the info Ton; very interesting. I hit 51 last month and I started "needing" reading glasses at 50. Was very proud of that fact; there are 6 siblings and my little brother and I are the only ones that don't need glasses (or in my case, didn't). I will remember the single-use eye drop thing.
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Tonlee, interesting about the eyes. I was in my mid forties before I notice a change in my eyes. Before that I had perfect eyes. Although it was difficult to read fine print, I only need reading glasses inside. If I'm outside with natural light I have no problem reading. I have noticed since taking herceptin that my eyes are a little worse. The other night driving home from a place that I'm not familiar with, I had a hard time reading the road signs. That was scary. I'm going to have to go in and see a opt to have my eyes check. I hate the idea of having to wear glasses to drive.
I don't take tamoxifen so I' know that's not why my eyes are worsening. I have no problem with dry eyes.
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Ciao, ladies! Just got home from Italy Thursday night and it was wonderful! Most of the time I really forgot about the C and just enjoyed every minute! I did find out though through email with my MO that my oncotype came back indicating no benefit to chemo, so she cancelled my appt for the port surgery and I'll see her Tuesday to go over the report and treatment plan ( likely to be only Arimadex for five years ). I'm anxious to see her though because I haven't received my results from the CT scan or bone scan and I've received an appt notification for a pelvic ultrasound on June 8th.....probably just a followup to the CT?? ....just won't know what that's for until I see my MO on Tuesday.
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Jill,
That's great news about no chemo. Have things changed in this arena the last year or so? I haven't really kept up on it, but I was told HER2 + was automatic chemo because Herceptin is given in conjunction with chemo.
So you are HER2 + but not getting Herceptin?
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chacha, welcome back and man, am I jealous! Italy? My mom's home country and I've never been. Where all did you go and was the food as amazing as I imagine it would be? I am with Ton though; I though HER2+ was automatic for chemo? When mine was +, my MO even had it re-run to make sure.
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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.
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Chacha: Hope you had a great trip. I'm with others here (just finished chemo last June) and I too was told chemo is standard for us HER-2+ girls. Awesome if things have changed....
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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.0 -
Been out of town the last few days so just checking in.
Tonlee my ophthalmologist told me my ducts are clogging a bit with oil so my eyes too are dry. She said to use drops as needed (but not the visine kind). What do you mean by single use? Use the drops once then toss the container away? I know I have a very tiny bottle but it's not single use. BTW I've been using a 1.5+ for computer/reading but my ophthalmologist said for real closeup like reading she recommends 2+. I tried it but it seems too strong. I think my eyes were just dry when she tested me.
As far as probiotic. I take an acidophilus capsule once a day, eat yogurt and also a teaspoon of Nutra Flora (recommended by my gastroeninoligist several years ago). Love the nutra flora. Did this all through chemo too.
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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...
Jenn0 -
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...
Jenn0 -
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!0 -
Chachamom, it does sound like the trip of a lifetime. Glad you were able to go and enjoy it.
Keep up updated on the Onco results. My tumors were larger than yours, but I also had multifocal with DCIS EVERYWHERE in the right breast. There truly was not a single slide of tissue from the rt breast that did not have DCIS in it! But more than anything, it was the HER2 results that convinced my MO to do the chemo.
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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 tumors to have a valid study of the potential benefit of chemo...so it seems like in my case the size trumps the HER2+.
<br />I'm waiting for the other shoe to drop!0 -
My onc was talking to me about a patient that he was fighting for herceptin now. She came back her2++, and the tmor was small and apparently the insurance company was saying no. He was arguing with them about the importance of herceptin even if she didn't have the three plusses. I havent seen him to know if he won the battle yet.
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chachamom - yes, there are women < 5 mm who have chosen not to have chemo/Herceptin. I've met them on this board. It is a very controversial topic and not an easy decision, either way. I wish you all the best!0
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There are also people who do not have the resources to manage doing all the time-consuming efforts involved in doing chemotherapy (constant doctor visits, labs, imaging, effects on physical ability to work when they don't happen to have "sick leave" coverage or even babysitting coverage, etc. etc. Those people may be able to manage doing trastuzumab alone, but some end up doing without either one because the "standard" is to do both.
I think that is very poor medical practice -- especially when the addition of chemo is so hit or miss anyway.
A.A.
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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.
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AA-not sure herceptin alone would impact anything you noted. Even with just herceptin you have bloodwork every time, a heart scan every three months and even more appointments because it takes a year. Chemo can be givn at the same time. Depending on the chemo, I am sure there is some truth to missed work, but I really felt the side effect from my weekly taxol were more manageable than the every three weeks herceptin. That wiped me out for a few days.
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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 issue0 -
What do you ladies know of this AE37 vaccine. Is this something that we could benifit from if it works ? Is this something that would possibly work for us that are +++ ?
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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
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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).0 -
I have a friend that had a breast tumor so small that they couldn't even see or feel it. The only reason they looked harder for it was that she had an enlarged lymph node in her arm and one in her neck that were growing tumors. Personally I wouldn't want to mess around just because a tumor is tiny if one is Her+. But I'm not an oncologist. I would definitely get some second opinions.
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