TRIPLE POSITIVE GROUP

Anonymous · June 2012

Toni: your logic seems reasonable to me....but I'm still new at this. I DO think it would be worthwhile to discuss this with your MO.......and as Lago said consider the variant risk/benefits of using an aromatase drug instead of Tamox. What I get out of the article Dance gave (thanks, Dance!) is that a lower dose MAY be just effective as the higher dose, but without further clinical studies, there does not warrant the practice of giving a reduced dose in actual practice. I know that there are women who stop taking ANY hormone therapy based on negative SE's....perhaps there could be a future study with women who are unwilling to take a full dose, but are willing to try a lesser dose?

Anonymous · June 2012

On another subject...when my MO went over my Oncotype report, we talked about the score and predicted risk/benefit of chemo.....but what we didn't discuss....and I just read in my written reort that was mailed to me....is that in the Oncotype I was rated as HER2-!

Does anyone know which test, the FISH or the Oncotype takes precident?... I'm afraid get too excited...but I went from "equivocal" pre-FISH, to positive in the FISH (4.42), to NEGATIVE on the Oncotype (10.4 score with 10 .7 being the cut off before equivocal and >11.5 before positive)

I can't believe my MO didn't discuss this! I've sent her an email asking about it....but OMG!!! Is the HER2+ measuring THAT variable?

Anonymous · June 2012

YES kayb!! Muddy, muddy,muddy! I'm flying on a high thinking I may NOT be HER2+

My first MO refused to order an oncotype saying the HER2+ status took precedence over any oncotype.....but with my concerns about the HER2+ variable and his insistence of NO chemo/Herceptin based on the size (3mm), I sought a second opinion and that MO thought it reasonable to get an oncotype....not protocol but worth it.

The oncotype gives a score for the HER2 gene...in this case negative....so I need to get this discrepancy clarified. Is NOTHING in BC black and white?

lago · June 2012

The FISH test for HER2+ is the reliable test. It does take precedence over oncotype. I don't believe the oncotype measures HER2. As stated if you are HER2+ you don't get an oncotype. If your MD sent the sample in with HER2+ noded your insurance wouldn't have paid for it.

NCbeachgal · June 2012

I'm triple positive. My MO knew this going in and still ordered an Oncotype Dx which came back with a score of 35 (24% chance of recurrence). My insurance paid for the test without question.

I was confused as to why I needed that test and why my case was presented to the tumor board. I suppose it was because the tumor was small and nodes were negative. I thought the HER2/neu piece necessitated chemo. Anyway, I had DD AC x4 and DD Taxol x4 (after my lumpectomy), doing radiation now and will be on some hormone drug soon.

I hope this helps.

ArleneA · June 2012

Hmmm. Neither of my oncos would do the oncotype because of the HER-2+ and my tumor was small and no nodes.

Everyone watching all the news about the TDMI - the new Smart Boom drug that attacks breast cancer and no side effects. Believe it is for the HER-2+. Just being used now on advanced stages but looking at early stage.

Omaz · June 2012

Arlene - What do they say about the heart and the TDMI - that was what I thought about when I heard about it earlier. If you are prone to heart damage from herceptin what happens when you add a chemo drug to it?

dancetrancer · June 2012

chachamom - I remember reading somewhere that the Oncotype is not a valid test for HER2. From what I understand, FISH takes precedent as Oncotype has not been validated for HER2 testing (yes, it does test it, but it hasn't been validated for it). I would definitely discuss this with your onc. Does this mean your oncotype score is correct???

kayb, treatment for tiny HER2+ tumors is controversial. I have the same size tumor as chachamom. One onc told me no chemo/Herceptin, only hormonal treatment. I sought a second opinion at MD Anderson. They said my recurrence risk was 20 to 25% and strongly recommended chemo/Herceptin. I decided to take the aggressive treatment route - but it was NOT an easy decision, given the huge range in opinions on this, and limited research done on it. It is not a black and white decision, for sure.

lago · June 2012

NCI (I think page 76) does recommend chemo/herceptin for triple positive tumors .5cm +

dancetrancer · June 2012

That is correct Lago. Treatment for > 5 mm is not controversial.

ArleneA · June 2012

Omaz: Didn't mention the heart side effects but seems there is no sickness, hairloss or any of the SEs that chemo hits us with. I'm thinking those of us finished are probably not eligible but definitely worth checking with our doctors since it will be available in the next couple of months...

dancetrancer · June 2012

kayb, that was my thinking as well. It's why I decided to go the more aggressive route. Even so, I still question my decision at times...especially when suffering the chemo side effects...uggghhh!!! It is a very difficult and personal decision to make. I don't think there are any clear cut answers - really depends on the individual's risk tolerance for cancer recurrence vs treatment risks.

Anonymous · June 2012

I agree with everything said...but remain hopefully confused! I'll let you know what my MO says...and Lago: both my MO's are kaiser providers...one refused and the second ordered the Oncotype without hesitation.

beachbum22 · June 2012

Hi Gang..I have two questions..I can't be on Tamox because I have an issue with blood clots so my MO has me taking monthly shots of Lupron and will soon put me on an AI. Has anyone else gone this route? Also, I keep reading people refer to EF but I don't know what that stands for...can someone enlighten me?

Thank you

TonLee · June 2012

Lago,

Sorry I missed your post earlier....I will ask about the other AIs. He just seems reluctant about them....but I could be reading him wrong...thanks

lago · June 2012

Beachbum22 I have a friend that is in the same boat. She was diagnosed with her 2nd breast cancer (first was DCIS in other breast) while I doing chemo. She didn't need chemo and did another lump/rads so she had to take some kind of hormone suppression. She seems to be doing OK but might have started with some hot flashes. Do you want me to ask her any questions?

Kelloggs · June 2012

beachbum - EF stands for ejection fracture. It measures the percentage of blood your heart is pumping.

Kelloggs · June 2012

oops...gotta love autocorrect, it's ejection FRACTION

geewhiz · June 2012

Dance and Fluff...I have suffered from the hot flashes nightly, and at least a few a day. The night sweats are ridiculous. I have tried all kinds of crazy things, natural and not natural, lol. I think Lago sent me a cool necklace linky for hotflasehes that was adorable. It looked like a Wilma Flintstone necklace made of ice cube material.

I am 45, and was in chemopause with borderline hormonal panel done last month. I was given the option of switching to an AI. I am staying on tamox and will reevaluate hormonals every 90 days. It is scary...there seems to be controversy as to the whole metabolizer/non-metabolizer issue for her2. I will switch to an AI at some point. i sure wish it was a little more clear cut. Fluff, you mentioned your daughter likes hot yoga. The ONLY time I get relief from the darn infernos is when I do bikram at least twice a week. .Kickboxing, running, tennis...doesn't seem to make it go away.

The eyebrows and lashes are still super thin, WAY worse than pre-chemo...and I am months past the 2 year mark. I am buying brown eyepencils every time I pass by one in the drug store, lol!

TonLee...I saw The Big C once...YUCK. Hated it. It seemed surreal. i think we all go through a bit of "what if's"...I had some travel dreams. I worked hard, saved some wampum and took my kids on some great adventures over the last few years. My llist had The Grand Canyon on it too, and we will cross that off next week. And now, I am at peace. I am a mom and wife first too. I think I needed to travel the whole world to realize I am happy most, right at home. So now, I started a bucket list, but in reverse. Sort of a "glass half full" approach. I made a book and put photos and memories from things I HAD experienced. I am so greatful to still be here almost 3 years later!! Anything else at this point is just gravy

moni731 · June 2012

beachbum- ejection fraction is measured as the amount of blood ejected from the left ventricle during a contraction. Most places measure anything above 50% as normal. You may also see it as LVEF. Hope that helps.

rozem · June 2012

hi ladies...i have rec'd 3 emails today from friends all about TDM-1. Apparently it is a "super herceptin" and combines H with another drug which is not as toxic as chemo (only attacks cancer cells) Our local news station reported on it and interviewed doctors at the ca center where i am being treated. I know it has shown very promising results in phase 2 trials and is the big news at the chicago conference going on now

i am wondering what that means for her2's of all stages? would a drug like this be used for patients who have completed treatment? when herceptin was approved i know that women went on even 2 years after treatment because the benefit was there

lago · June 2012

rozem it still isn't approved for stage IV/mets yet. Once that happens (after phase 3) then they will start trials for early stage. It will take some time. I'm not sure if we would even need this drug now that we've completed therapy. I would think this would be instead of what we got.

Moonflwr912 · June 2012

Lago, I am thinking you are correct, it would be the treatment of choice instead of the general chemo we got. It seems to be built on the research from Herceptin bases. Here's hoping the new trials go as well, to avoid all the SEs r are going through, and hoping for a real cure! Exciting news. Even if I don't benefit now, I might in the future if I recur. Hope not though, bit it would ne nice if this would be available. But it has a way to go just yet. Cautious optimism here!

Iamstronger · June 2012

Hi ladies,

Boy, it has been awhile since I have been here. I guess that is good!!

Kayb, I have had two brain MRI's. One a few months after I finished TCH and then I had another one about a year later. I was having some weird pressure in my temples and head and Onc wanted to make sure it wasn't anything. Which, thank goodness it wasn't! My MRI's never lasted over 30 minutes. I honestly thought they were closer to 20-25. If you are at all claustrophic, tell the techs, they can give you something. It wasn't so bad, but, as we all know, scans are rarely fun. Wishing you good thoughts and clean scans! Also, I liked Omaz idea about inner ear. I know that chemo really screwed up my sinuses and all that is connected.

TonLee-HATED the BIG C! Enough said about that.

Hope everything is going well for everyone and that life is good!

V

Hindsfeet · June 2012

I had my 6th herceptin infusion today. I'm having weekly infusions hoping it will be more tolerable and easier on my heart. It would seem that I would hardly notice such a small dose, but it feels the same as the larger dosage. I came home and slept for 2 hours. My heart is racing. I drinking a lot to hopefully flush it through my system. I will be making an appointment with my new cardio dr tomorrow.

While in the infusion (chemo lounge) today, I spoke with a nice man who was getting his first chemo. He is getting a new type of chemo that doesn't have the severe side effects such as losing hair or nausea. I'm not sure if he is on some type of trial or what. Sounds promising for those who take chemo.

Tonlee, sorry to hear about your bone pain.

wasgij96 · June 2012

There was something on youtube that talks about treatments (sorry can't remember what it was called but i did a search on her2 in youtube and it came up) and how they are breaking things down to specifixs of the many different types of cancer make-ups(ie. Her2+/Her2 -/ER/PR ect) that was interesting. They are starting to figure out to some extent what types of treaments work best for each. This TDM-1 has opened up some new ways of looking at fighting this cancer. Things are starting to look more promising for this breast cancer to be more treatable each year.

wasgij96 · June 2012

What is the difference of carboplatin and cytoxan ?

slousha · June 2012

Hi vasgij 96,

AS From Wikipedia:

Carboplatin, or cis-Diammine(1,1-cyclobutanedicarboxylato)platinum(II) (trade names Paraplatin and Paraplatin-AQ) is a chemotherapy drug used against some forms of cancer (mainly ovarian carcinoma, lung, head and neck cancers).^[1] It was introduced in the late 1980s and has since gained popularity in clinical treatment due to its vastly reduced side-effects compared to its parent compound cisplatin. Cisplatin and carboplatin, as well as oxaliplatin, interact with DNA, akin to the mechanism of alkylating agents.

Cyclophosphamide (INN, trade names Endoxan, Cytoxan, Neosar, Procytox, Revimmune), also known as cytophosphane,^[1] is a nitrogen mustard alkylating agent,^[2] from the oxazophorines group. An alkylating agent adds an alkyl group (C_nH_2n+1) to DNA. It attaches the alkyl group to the guanine base of DNA, at the number 7 nitrogen atom of the imidazole ring. It is used to treat various types of cancer and some autoimmune disorders. As a "prodrug", it is converted in the liver to active forms that have chemotherapeutic activity

You should get more informations from your MO.

Best wishes!

Usha

TonLee · June 2012

4 days off Femara, ab work yesterday, and today my back hurts. Not as much as on Femara, but enough to make me think this is an injury exacerbated by Femara.

Talked with Onc yesterday. He's not really open to another AI. Said to stay on Femara, or go back on Tamox for a year before switching back. I am not getting a hormone panel.

When I had ovaries, I don't think Tamox worked for me. I may be resistant, or maybe I produced too much estrogen and needed more Tamox. Who knows.

So back to the devil I know.

I asked about dosage. Why do I need the same amount of Tamox/AI as a woman whose ovaries are roaring?

He said the research just isn't out there yet. That a smaller dose may do the job, but he is not comfortable prescribing anything but protocol (Shocking..heh)

So I am really going to start looking at the science of Tamoxifen at the cellular level. Once I feel satisfied with my knowledge of how it works, I will decide if I am going to take the whole dose, or just half. It does not seem illogical to me to speculate that lower amounts of circulating estrogen = required amt of Tamox decreases.

So in a week or so, I start back on Tamox, but I will start with half a dose.

Omaz · June 2012

TonLee - tam has to be converted by one or more enzymes in the liver to the active ingredient - you may want to consider the genetic test for the ability to metabolize - it might be important for the decision to go with a lower dose - i.e. if you are a good metabolizer then lower would work but if you are a moderate or poor metabolizer you may want to stick with the regular dose.

TRIPLE POSITIVE GROUP

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