TRIPLE POSITIVE GROUP

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  • lago
    lago Posts: 11,653

    Sorry been MIA a bit. Very busy. Making Strides kick off breakfast on Wednesday

    gratitudeforlife CONGRATULATIONS.

    ChickaP (P for pin cushion) fingers crossed it works

    Welcome soriya123 Sorry to see you here. Don't worry about not being Pr/ER+ This is a fun thread. BRCA tumors tend to be more aggressive but just because you are BRCA+ doesn't mean you are. And just because  you BRCA- doesn't mean your tumor won't be more aggressive.

    BethCon1 What's next? Are they going to biopsy or test further? Hope it's just one of those inside body zits

    Eileenohio Yes. My Dermatologist wanted me to try GENADUR to hopefully unlift my nails but when I saw the price tag I said Yikes. She didnt think it would help the brittleness or the slight yellowish color. The pharmacist recommended Urea Gel as a cheaper alternative ($20 ). It did help unlift them/flatten a little. I do have samples of the Genadur but after months on the Urea I had enough.

  • eileenohio
    eileenohio Posts: 268

    Patin    That sure is better then $200.00  I am going to order Rejuvacote and give it a try before I spend $200.00

    Lago- Yikes is right- could not believe how expensive Genadur is.

  • lago
    lago Posts: 11,653

    Ask your dermo about the Urea Gel. The pharmacist called my dermo to see if she would prescribe that instead. No way could I afford $200 a month for 3 months. I'm still looking for permanent full time gig since I was laid off 5 months before diagnosis. If she said no I wasn't going to do anything

  • moonflwr912
    moonflwr912 Posts: 5,945

    Wow, .lots going on. Hugs to all. Eileen, I hope you find the cheaper stuff helps. Arlene, hope your D level comes up fast. Bethcon, hope it really is just a shadow or something. Welcome soriya, and bethcon, sorry to see you here, but welcome.

    Much love to all.

  • camillegal
    camillegal Posts: 15,710

    Oh I'm so far behine 'm sorry but

    Gratitude Congrats it's a great feeling.

    Bethcon Hopefully this spot is something u won't have to worry about when they figure it out.

    Welcome newbies, I really hate welcoming anyone here, but if u have to be here this group is amazing for info and what is not known they seem to find out about it right away. And very caring women, which I think u can see already. Wishing u the best in treatment and I have heard about those rads and supposed to be great.

  • Ella_117
    Ella_117 Posts: 48

    Interesting article...

    I guess us triple positive gals are considered to be Luminal Bs in this study?



    http://www.cancernetwork.com/her2-positive-breast-cancer/content/article/10165/2153907

  • lago
    lago Posts: 11,653

    Ella yes triple positives are luminal Bs. (linky) The study states at the end:

    However, results based on long-term follow-up can lead to the inclusion of patients treated in a noncontemporary fashion, which limits inferences on the effect of modern treatment approaches.

    I wonder if this is implying that Herceptin is not properly factored into the equation for those of us that are triple positive. I also wonder if taking AI, Tamoxifen etc is part of the equation as well for luminal A & B. Also note not a very big study: 1,951 women

  • soriya123
    soriya123 Posts: 383

    Thank you ladies for such a warm welcome! I am looking fwd to chat more with all of you lovely ladies. :-)

  • Ella_117
    Ella_117 Posts: 48

    Lago,

    I was wondering the same as to whether Herceptin was factored into the study since it began a few years before it was given to early stage.

    It would be interesting to know statistically exactly how herceptin has changed these percentages.

  • BethCon1
    BethCon1 Posts: 77

    Thanks everyone. Next I have to talk to my oncologist and my family doctor said he will most likely want an mri to look at the soft tissue around the spot. All I know is my back has been hurting me for over a month and I didn't do anything to it. I thought it was maybe the tamoxifen, but now I don't know. He showed me the bone scan image and you can clearly see the area, he said there is increased blood flow to that spot. I don't know what to think or do at this point.

  • BabyRuth
    BabyRuth Posts: 107

    Ashla- my first chemo experience had mixed results. While my tumor did not grow while on chemo, it did not shrink. My MO measured it at my appointments and it appeared to be getting smaller but once removed during surgery, it was pretty much the same size. The chemo did help in the lymph node area as they came back negative after the chemo.

    Cowgirl13-my Cyber knife treatment is here in the Atlanta area. Thank you so much for the offer. I start today at 2:30, I am a little nervous but I am sure I will be fine.

    Bethcon-sending good thoughts your way.

  • ashla
    ashla Posts: 1,566

    Baby Ruth,

    They are moving...if all too slowly for us...in so many different trials...toward better targetting of our treatments. So many of us have had to endure chemo with little or no benefit.

    I am in one of many hundreds of trials. It is through Mammaprint . It is for those who have had neo adjuvant chemo . They have my DNA and RNA and They know how each of us did with treatment and they are following us for at least 5 years to see how well we do. http://clinicaltrials.gov/ct2/show/NCT01479101

    There are several different trials tha are using herceptin as a delivery mechanism directly to our her2 pos tumors.

    http://www.sciencedaily.com/releases/2013/08/130810063717.htm





    many times since I entered this forum and most turned out to be " inside body zits " as Lago refers to them. I'm starting a list of the names of things that our worst testing fears have turned out to be. Please help me girls.

    Best wishes

  • bren58
    bren58 Posts: 688

    lago, hope your breakfast was a success this morning!

  • ashla
    ashla Posts: 1,566

    BabyRuth..

    Sorry..I somehow combined 2 different posts! I am soo screwing this up!





    Baby Ruth,

    They are moving...if all too slowly for us...in so many different trials...toward better targetting of our treatments. So many of us have had to endure chemo with little or no benefit.

    I am in one of many hundreds of trials. It is through Mammaprint . It is for those who have had neo adjuvant chemo . They have my DNA and RNA and They know how each of us did with treatment and they are following us for at least 5 years to see how well we do.
    clinicaltrials.gov/ct2/show/NC...
    http://clinicaltrials.gov/ct2/show/NCT01479101
    There are several different trials tha are using herceptin as a delivery mechanism directly to our her2 pos tumors.

    www.sciencedaily.com/releases/...

    Best wishes

  • shore1
    shore1 Posts: 591

    Hi everyone! It's been weeks since I've been on and have missed a lot - I hope everyone is doing well. Questions I'm hoping some of you might have some advice/experience to share. When I started tamoxifen on 2/8/12, a week after chemo ended, I researched on the boards about the different manufactered brands (ie; mylan, watson, teva), and decided to go with mylan based upon what many believed were the various side effects of each. I realize the active drug is the same, but the fillers in the different brands can causes different SEs. Mylan is temporariliy unavailable frm express scripts, and I have also checked local pharmacies, which only dispense teva or watson (at least for now). So my next refill is Teva brand. First question is whether there is any difference in the effectiveness of the drug if I have been taking one brand for 18 months and am now having to switch to another? Also, among the various brands, has anyone experienced face breaking out? I'm wondering if maybe this lovely SE might be better on a different brand anyway (aside from this, I have done pretty well on mylan brand). If you did have break outs as a SE, what did you take/use to help it? (I'm seeing dermatologist tomorrow, but am afraid to take anything that might interfere with effectiveness of tamoxifen). Thanks so much for any advice.

  • rozem
    rozem Posts: 749

    hi shore and kayb nice to "see" you both

    i just had a discussion with the pharmacist about the different brands - apparently teva and mylan are owned by the same company now so the fillers would be the same.  There wasnt a 3rd available to me (here in canada anyway) because i was looking to change to see if it helped my joint pain

    bethcon -please keep us updated....im so sorry you are dealing with this  -i am hoping there is another explanation for the spot. 

  • camillegal
    camillegal Posts: 15,710

    Bethcon when the Dr. showed u the spot didn't he say anything to u or just this is what hurts and had no idea what it was??? Did he order more tests or is fine with what it showed--is it normal thing that he sees all the time?

    Sorry I sound like u'r under a bright light and I won't give u any water, but I'm curious as to what's happening

    BabyRuth please keep us posted on this procedure.

  • BabyRuth
    BabyRuth Posts: 107

    My cyber knife procedure was canceled today and has been rescheduled for tomorrow at 1:30.  The RO was still working on my particular case and was not comfortable preceding yet. Fingers crossed that tomorrow will go as planned.  Big days ahead as I am meeting with cardiologist on Friday and MO on Monday.  I am due for some good news. 

  • BethCon1
    BethCon1 Posts: 77

    I went to oncology today and they set up an mri for friday morning, they also want a pet scan done. They said depending on what the mri shows them they might want a biopsy or if it really looks like cancer they will just skip the biopsy and send me for radiation. The paper I got from them today says "there is amorphous activity demonstrated within the L4 vertebra. This is concerning for metastatic disease given the relative absence of degenerative change seen on the lumbar spine. MRI is recommended for further assessment"

  • Pbrain
    Pbrain Posts: 773

    Ashla, I have no idea about the workings of our corporate patent lawyers, but I'm willing to bet a few people lost their jobs over that one...

  • BabyRuth, well, that totally stinks for you that the cyber knife procedure was delayed. It is so stressful, as things are, so just want to let you know that I am thinking about you, sending positive thoughts/prayers your way. May the procedure go well tomorrow.

    I have been taking Tamoxifen for 6 months now,and I have had no skin breakouts. Maybe it's my age as I am 50. For those of you whose skin broke out, are you young women? older than I?  Maybe that's a factor. My SEs are hot flashes, dryness in the "nether" regions and intermittent headaches.

    Lago, I hope, too, that your Making Strides breakfast today was a HUGE success!!!

  • camillegal
    camillegal Posts: 15,710

    Beth I'm sorry this has happened. All these tests or maybe not is chit. It's hurry up and wait. I hope they re all good results.

    Baby Ruth what a wasted day--when they postpne something it's like this OMG let down, whatever it is u want it over with and go from there. Sending u good vibes for tomorrow.

  • goutlaw
    goutlaw Posts: 268

    How can u tell when u go in store if the food is processed or not processed?

  • goutlaw
    goutlaw Posts: 268

    I'm so sorry Beth. Did u have scans prior to treatment?

  • lago
    lago Posts: 11,653

    Bren & gratitudeforlife Breakfast tomorrow. Need to finish my speech still.

    shore1 Teva is an Israeli  manufacturer of  many generic drugs. I specifically order my Anastrozole to be Teva brand (don't want the brand from India).

    Babyruth my fingers are crossed for you too.

    goutlaw if it comes preprepared, precooked, in a box and and/or in a fancy bag the it's probably processed food.

  • goutlaw
    goutlaw Posts: 268

    I wanted to ask when ppl post 2/2 nodes......Does that mean they had 2 lymph nodes and 2 were positive?

  • rozem
    rozem Posts: 749

    goutlaw - that means that they only had 2 sentinel nodes and yes both where positive.  Everyone has a different number of sentinal nodes OR  She may have had 1 sentinel and 1 axillary node positive aswell and the surgeon decided not to remove any more based on new studies coming out that that removing more nodes does not increase survival (when getting other treatments like chemo/rads)

  • lago
    lago Posts: 11,653

    goutlaw You can have anywhere from 1-5 sentinel nodes. Most have 1or 2. I was unfortunate and had 4 light up so they took out 4 sentinel nodes on my right side. The more nodes removed the higher the risk of Lymphedema. I don't have lymphedema in my right side but do have it in my left arm (10 nodes) even though I didn't do radiation. Very manageable but I do wear a sleeve daily.

  • NickyJ
    NickyJ Posts: 372

    It seems to me there's a lot of waiting going on on this post at the moment!

    Beth,

    I'm sorry you have to go through all this, I really hope its good results.



    Baberuth,

    Crossing everything for you, too



    Iago,

    Hope your breakfast is a huge success, can't wait to hear!



    Well, me and Portia were at the hospital on Tuesday, so that gave the nurses a laugh! All good for the moment, saw my onc, and he's booked a PET scan for sept 19 (so I guess I'm waiting too!). I'll see him again on the 24th, so he'll have the results then. I asked him to reduce the dosage on my fentanyl patches, I want to see how I get on on a lower dose. Will be changing this evening so I'll let you all know how that goes.

    In the meantime, now that I have the date for the scan, I went and booked tickets to visit my family in Ireland. I'm going myself for a week the last week in September and dh and my 2 ds's and I are all going together for 10 days during the Halloween break. Even though I talk regularly to my mum, I know she needs to see my to know I'm doing ok, and she's looking after my grandmother so can't get over to me very often. Can't wait to go!

    Nicky

  • Jennt28
    Jennt28 Posts: 1,095

    pbrain - it appears that it is the patent office in India that would not extend the trastuzimab patent any further than the end of this year I think. Seems that the Indian authorities are trying for a "land grab" on a number of medicines that legally have a right to stay on patent. They want to be able to use generics in their country - bypassing the part of the development process where the company that developed the drug can make some profit before it comes off patent.



    Jenn