TRIPLE POSITIVE GROUP

16326336356376381337

Comments

  • soriya123
    soriya123 Posts: 383

    Somehow er/pr- her+ is not active as triple negative. Maybe not that many BC women out there with this type of tumor.



    I will have my 3rd TCH tomorrow, sometime I have doubt if this chemo is aggressive enough for me. I noticed other have same type of tumor as me have AC/TH. I am 39 years old I want to be aggressive as much as possible.



    I'm sorry I kno this thread is not for er/pr- but I read your thread eveyday n I learned a lot from you lovely ladies. Thanks

  • ashla
    ashla Posts: 1,566

    Soriya,

    Don't be sorry . You are very welcome here. There is something to be learned from all these threads really. I just focus on one now because I confuse myself if I flit around.

    In fact what you just wrote is pretty universal . We all have lots if doubts.... About everything it seems at one point or another.

  • rozem
    rozem Posts: 749

    soriya i think the efficacy difference between TCH and ACTH is marginal - like 1 or 2 % so you are getting the tough drugs dont worry

  • Pbrain
    Pbrain Posts: 773

    Shasha, get out!  No way are you 61!  I was wondering why you weren't piping up with responses to the younger BC survivors on here!

    6cats, my MO stopped me at an LVEF of 55%, but he started me back up again when he saw I wasn't going below that.  I dropped from >70% which is a big drop.  I have another echo next week.  Hopefully I can finish out my year on herceptin.  It is funny, I had more symptoms of a low ejection fraction when I had a hemoglobin of 6 last winter, but nothing now.

    Soriya, TCH is heniously strong in my book.  Don't compare your lack of side effects to whether the drugs are working.

    Bethcon, I suspect you'll need to consider the options that Lago mentioned.  Those two drugs are recently cleared by FDA and marketed by Roche/Genentech.  They are currently to be used in metastatic Her2+ breast cancer.  Let me know if you need any info since I work for Roche.

  • Pbrain
    Pbrain Posts: 773

    Oh and I was told today "well there is nothing remarkable or drastic about you.  Your kind of dull in fact" by my NP at the Cancer Center when I was getting herceptin.  I love it, we both started to laugh because she was talking about my breast cancer!  ha ha ha!!

  • moonflwr912
    moonflwr912 Posts: 5,945

    Pbrain, you are TOTALLY REMARKABLE!!! It's just your BC that isn't!! LOL

  • camillegal
    camillegal Posts: 15,710

    Pbrain hahaha dull--Oh I mean u'r breast cancer LOL----made me laugh cuz I've always told my one GF that we are 2 boring, dull people--she agrees now. LOL

  • lago
    lago Posts: 11,653

    Soriya I just sent you a PM. Just remember with TCH you can get the Herceptin right away. AC-TH you have to wait. Also you are not the only er/pr- HER2+ on this thread. I do believe it's about 50/50 as far as HER2+ being either er-/pr- or er+/pr+. Most of us HER2+ hormone+ are not highly positive either. We have a few that are though.

    PBrain what Moonflwr912 said

  • soriya123
    soriya123 Posts: 383

    Thank you Lago, yes I just read you PM. Thank you so much.



    Thank you to all you lovely ladies for your response. I feel better now. I had that question in my head for a while.



    My onco said TCH work really well with type of my tumor. He said in UCLA use TCH on their patient for same type of tumor, but after reading so many thread of course I have doubts.



    Thank you so much for such a quick response. :-)

  • goutlaw
    goutlaw Posts: 268

    Yes lago i did no reply yet

  • goutlaw
    goutlaw Posts: 268

    Anyone know what Richard and bloom scale is on path report? Is that the grade and how fast it is?

  • lago
    lago Posts: 11,653

    goutlaw check out this linky But the short answer is yes and 2 other things:

    • degree of tumor tubule formation (percentage of cancer composed of tubular structures)
    • tumor mitotic activity (rate of cell division)
    • nuclear grade (cell size and uniformity)

    Go to the link for more details on what this means.

  • cypher
    cypher Posts: 447

    Pbrain, I have dairy and meat but I always make sure they are organic or (preferably) free range/pastured.  Or goat’s milk/goat cheese.  It’s more money but oh well.  The study didn’t differentiate between dairy from cows pumped full of hormones etc. and pastured cows, so I’m not sure how meaningful it is if you avoid that stuff.  Also, pastured animals have a better omega 3/omega 6 ratio.  From what I can tell, goats are much more likely to be pastured than cows.  I have a hypothesis about this actually.  Omega 3s are antifinflammatory, omega 6s are proinflammatory.  Our diet has a big imbalance of omega 6/omega 3s, mostly because of the unnatural crap we feed cows and so forth.  I have been trying to have an omega 3 heavy diet and have been having fewer allergy problems (i.e., feeling congested from eating dairy, which isn’t exactly an allergy).  So I’ll snack on goat cheese and organic jack cheese and not feel super congested afterwards.  Last week though I tried a different kind of goat cheese and was SUPER congested – I wonder if it’s those goats’ diet?  Anyway that’s my hypothesis…

    Martie I ate like that (honeybair) during chemo.  One thing that helped were these smoothies I made out of nonfat kefir from pastured cows (lifeways), whey powder from whole foods, frozen berries.  But it was a PITA, and I would say that it’s better to eat not so healthy than not eat at all…

    Karen I took probiotics all through chemo (MO knew) and did not get any infections.  I also did not have a lot of the D and C problems that a lot of women had – I think the probiotics helped.

    Ladies I am still confused about the tamox.  So if you are on tamox, you’re not supposed to be getting your period?  I haven’t a clue b/c I don’t have my uterus anymore (fibroids … had it removed 8 mos before BC DX). 

    Beth, ugh.  I’m so sorry.  I know there are lots of other drugs in their arsenal, but I’m sure it’s very upsetting.  (hugs)

  • karenrm
    karenrm Posts: 69

    Me! I am 98% estrogen positive and 67% progesterone (or is it progestin?) positive. But I had been taking HRT, so that may have increased my hormone counts. I'd like to know what they are now that I've been off HRT for some time. 

    See rads onc today to begin planning rx. A little nervous, not knowing what to expect.

  • Shasha10
    Shasha10 Posts: 212

    Specail K thx for the info

    Pbrain thx I always thougth I was young, now with my fuzz not so sure.Wink

  • karenrm
    karenrm Posts: 69

    Cypher, my onc doc is very conservative about food and supplements: no uncooked fresh fruit and veggies. So what do I crave: salad!

  • Pbrain
    Pbrain Posts: 773

    Karen, radiation was a breeze for me.  On your first visit, you'll get into a CT scanner and they'll do a "simulation" on you which means they are looking at where your organs are.  They put BB's on the two ends of your scar from the lumpectomy to see where the tumor was.  It all takes about 20 minutes and there is no pain.

    They also make a mold for you.  They have this bean bag full of styrofoam beads that you lay on and when they have you postitioned, they suck all of the air out of it.  They'll use that everytime you come in to position you.

    The actual radiation appointments are @20 minutes.  My cancer center had it down to a science, so I only had one appointment where I actually had to wait.  You'll see your rad onc once a week to check on how you are doing.  My skin got a little red and I peeled, but I kept using lotion.  Don't use anything your RO doesn't suggest.  Some things make the radiation a little bit more intense.

    I didn't get tattooed, just got sharpie markings all over me then they stuck stickers on me.  I could bathe, they didn't come off too often, but if they did, they lined me back up and drew on me again.  :-)

    You'll be fine.  I got to know the waiting room ladies because we all had about the same appointment time.  The techs were wonderful.

  • specialk
    specialk Posts: 9,299

    karenrm - your percentage of ER/PR positivity is not connected to circulating hormones - your consumption of HRT would not affect those numbers.  The percentage number is the number of receptors on your cells - it is not a measure of level of hormone. 

  • karenrm
    karenrm Posts: 69

    Thanks Pbrain and Specialk. It helps to actually have accurate info! I will get tattoos, according to the rad onc. I already have a tattoo on left breast. Just hope they don't put black dots on my turquoise hummingbird!

  • camillegal
    camillegal Posts: 15,710

    Ph Karen I hope they don't screw up u'r tattoo, but those dots are so small and u get them so quickly I begged the tech to make one of mine with lines around it--like the sun, but he wouldn't, I didn't see what the big deal was, but I guess he followed the rules. And since u have a tat this will be like nothing, I din't even feel anything and like Pbrain said after that it just position and and a few minutes holding still and that's it. And again u'r usually in and out in no time so it just screws up u'r day--I did mine early soI had the rest of the day. And everyone was so nice. 

  • arlenea
    arlenea Posts: 1,150

    Hi Ladies:

    Quick question.  I'm having miserable pain in my arm that had the surgery/lumps/rads and the pain is from the elbow down.  Hurts to the touch and if I stretch my arm out.  Really hurts after coming in from a run. 

    Any ideas?  Not swelled.  I was just with my little granddaughter and carrying her a lot so guessing I could have pulled something but it burns too.  Guess time to go get it checked out.

    Thanks, Arlene

  • moonflwr912
    moonflwr912 Posts: 5,945

    When you get it checked, don't be surprised if it tendonitis. That's what it kinda sounds like to me. You could Try wrapping your elbow with an ace bandage see if it helps. Good luck

  • arlenea
    arlenea Posts: 1,150

    Moon:  It hurts on the inside and not the actual elbow.  Tendonitis huh?  Thanks, Arlene

  • specialk
    specialk Posts: 9,299

    Arlene - could be axillary web sybdrome, or cording.  Here is BCO's info on axillary web, I had pain from the axilla, down the bicep, inside the elbow, up over the top of my forearm, ending with pain in the thumb and top of the hand. If you look at a diagram of axillary web, I had a textbook case. It was exacerbated by being outside in the heat.  I eventually ended up with lymphedema in that arm, but axillary web is how it started.

    http://www.breastcancer.org/treatment/side_effects/aws

  • Annie54
    Annie54 Posts: 39

    ArleneA,

    Sounds like my arm. A couple months after my lumpectomy, the skin on the inside of my upperarm and elbow hurt to the touch and when I stretched my arm out. No swelling that I could see. I pondered it for a couple of days and then the lightbulb went off - lympodema! I actually did have some swelling but you couldn't see it because it was minor. I showed my onc and he referred me to the lympodema clinic. I really wasn't expecting lympodema because I only had 3 nodes removed and had healed well with no problems. I've since learned that lympodema can strike anytime after surgery - and sometimes years after surgery. So I'd suggest having your arm checked out for that.

    Annie

  • arlenea
    arlenea Posts: 1,150

    Annie:  That was my fear.  Who would I go to to have it checked?  My onco?

  • PatinMN
    PatinMN Posts: 784

    Arlene - not long after surgery my breast surgeon referred me to a physical therapist who specializes in lymphedema.  I saw her twice, and she did comparative measurements of my "good" arm and "surgery" arm, gave me lots of hints and pamphlets about how to avoid lymphedema etc.  So I think that's what you need to find - a physical therapist who specializes in that.  Probably one of your doctors could give you a recommendation.  I hope it's not lymphedema and is just tendonitis!

  • karenrm
    karenrm Posts: 69

    Met with rad onc and nurse. Have first sim on Sept 6. Underway!

  • specialk
    specialk Posts: 9,299

    arlene - I got a prescription from my onc, but just by asking - he did not examine me.  I called and made my own appt. with LE PT at Moffitt.  I am sending you a PM with phone numbers of PT in your area.

  • arlenea
    arlenea Posts: 1,150

    Thanks SpecialK.  I'll call onc tomorrow and get prescription and get set up while there is no swelling.  Arlene