TRIPLE POSITIVE GROUP

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  • ashla
    ashla Member Posts: 1,581
    edited October 2013


    LeeA


    I am on anastrozole. Both my MO&BS felt it was best for me but I've always had femara in the back of my mind because I have a friend who is a brilliant world renowned research scientist .... women's reproductive health...and professor who had BC about 12 years ago now . We spoke about it last summer and she had just stopped taking femara. She told me it was controversial about taking it so long but it was her educated opinion. She had started on arimedex but had severe joint pain issues especially in her hands.

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  • ashla
    ashla Member Posts: 1,581
    edited October 2013


    OK ...


    Just had my 2 year from dx MAMMO and US. I had the 3D MAMMO ...tomo synthesis. Costs an additional $75 .


    It was much faster than regular MAMMO. Don't know if the tech was better but I think it was the machine.


    6 mos ago I was upset because I had my MAMMO... Had to make all kinds of calls to get the results faster than a week later snail mail and when I got the letter... It said ' you've got very dense breasts , come back in 6 mos'. I was freaking.


    This time the MD came and talked to me personally. I still have very dense breasts but she got a very good look through 3D . The MAMMO looked good but there were 2 tiny fatty cysts along the scar which she said is very common after rads. The US wasn't as clear on the fatty cysts so she did it again and then saw the cysts as cysts too. I am still birads 3. That means there are changes since the last mammo but they are 99% not cancer.


    I think I am 19 mos NED . Looks like I'm never gone get a clean mammo.

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  • ang7894
    ang7894 Member Posts: 540
    edited October 2013


    ashla--- I had mine too today and I am having the same my scar tissue is easily seen now it was not last years. And I apparently have a cyst now that was not there last year either. My guess is that I will probably be called in for an ultra sound. Gosh I hate this... They really don't tell me much It gets called or sent to my doctor then my doctors office will call me. Could take up to 5 days I was told .

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  • ChickaD
    ChickaD Member Posts: 1,025
    edited October 2013


    Hi kids.... back from my cruise for my CruiseOne National Conference... it was fabulous as usual....it will take me a few days to catch up ... you girls have been busy busy busy......


    Need your help... our CEO of CruiseOne gave us a challenge to meet before October 31, 2013.... to add at least 100 names to our email database on our personal websites.....so if you have an email.... would you please consider adding it to my website www.TravelByDana.com (right side of page in a green block it will ask for your email and zip code for exclusive offers and discounts)...I would really appreciate any help with this challenge!


    Talk to you all soon after I do about 100 loads of laundry - LOL


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  • NickyJ
    NickyJ Member Posts: 722
    edited October 2013


    well, I had my MRI on my knee. Found out that my tibia is fractured horozontally, and that the cyst is filled with blood. Looks like I'm off to see an orthopedic specialist.....


    Nicky

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  • ashla
    ashla Member Posts: 1,581
    edited October 2013


    Aw Nicky!


    How were you able to travel with that? You must be in a lot of pain..or do you think your pain meds masked the problem? Is it a Baker cyst?

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  • ashla
    ashla Member Posts: 1,581
    edited October 2013


    ang7894


    According to radiologist this is very common.

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  • Eileenohio
    Eileenohio Member Posts: 460
    edited October 2013


    OK Dana.. I joined 1 down and 99 more to go !!!

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  • ChickaD
    ChickaD Member Posts: 1,025
    edited October 2013


    Thanks Miss Eileen

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  • SC60
    SC60 Member Posts: 416
    edited October 2013


    ChickaD- added my email for you!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2013


    I will probably be moved over to an AI in the next year. I thought I would this year, but he decided to wait a year more.


    In the same vein, which brand has the least hair loss as a side effect, or if you had hair thinning or loss, was it significant, or just a little?


    Niki-I fell up a step a couple months ago. Crunched my knee into the top step. I let it go for a while, and then when it wasn't getting better, had it all checked out. No fracture, but sprains of the lateral and posterior miniscus and an IT band issue, and then some fluid at the back of my knee. Started physical therapy this week and will be seeing an orthopedic doc when I get back from my vaccine booster trip to Wake forest tomorrow. Not fun to go from being really flexible to not at all.


    I wonder how much of a role chemo, and tamoxifen have played in the issue with my big toe joint (hallux rigidus). I had surgery on the other one years ago, but the right one had been doing really well. Then suddenly in the last year, it got a lot worse quickly.


    I am having the worst time walking and things now, as my left knee hurts and kind of pops, and my right toe doesn't bend and is even more painful than the knee. I really need to break down and have the surgery now, but I wanted to get through the holidays. I'm starting to think I may revisit that.

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited October 2013


    ouch to nicky and fluff. Ouch! WOw sympathies on the knees. Ive been limping for years and wanted to get my bone on bone replaced. But BC had other ideas. So, DONT WAIT! Get it taken care before something bumps it off your calendar. Now I wish I had done it years ago. Its not in my future for a couple of years. So again, if you need it get it done.


    Chick, done.


    SpecialK, I thought it must be something like that.


    Much love to all.

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  • NickyJ
    NickyJ Member Posts: 722
    edited October 2013


    ChickaD,


    I'll happily add my name, but will it count if i do? Not being in the US? Let me know!


    Ashla, yes, it is a bakers cyst, the reason I was sent for an MRI is they said that a cyst only forms if there's an underlying cause. Looks like they were right in my case! I'm sure my meds must mask some of the pain. I've been limping on that leg for a month though, and because the other leg has LE I limp on that one too!! Before I had one 'bad' leg. Now I have a bad leg, and an even worse leg!!


    Nicky

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  • soriya123
    soriya123 Member Posts: 662
    edited October 2013


    Chick D just added my email :)

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  • Bren58
    Bren58 Member Posts: 1,048
    edited October 2013


    Nicki, moon & fluff, sorry about your knee pains. All this other stuff added to the BC really sucks.


    ashla, glad your Mammo turned out as well as it did.


    Welcome back ChickaD, glad your had a great time!

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2013


    Excuse me breaking in here, but we are looking to show your faces, names and quotes at our fundraising event in October (www.rockforbreastcancer.org), and would love your help. This event is one of our largest fundraisers of the year and we'll be joined by hundreds of generous donors.


    Specifically, we will have two projector screens up during the event, and want to show the people attending the event YOUR faces--- the women of our community, the women who use and rely on BCO ! Having the opportunity to share your photos and quotes that night will reinforce to our donors, in a meaningful and personal way, just how vitally important their contributions are to our community.


    For this, we are looking for people willing to share a photo of themselves (either alone or with family, friends, pets, other BCO members, etc.), allow us to use your first name, say where you are from (it can be from anywhere in the world!), and give us a quote on how important BCO is to you. We are looking to have at least 40 people and have (only) a few weeks to work on this.


    If you are interested, could you please email Melissa at mjenkins@breastcancer.org, with your photo, first name, where you live, and your quote? Also, PM us if you have any questions!


    Thank you, thank you, thank you for helping us!!


    Melissa

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  • Pbrain
    Pbrain Member Posts: 863
    edited October 2013


    Chick, added my name too.


    Had Herceptin today--I calculate only 3 more...yipes! Then I'm out there on my own. I have a diagnostic mammo on both breasts on December 2nd and I'm nervous already. I heard from a good friend who is out 5 years that I will learn to relax about these things. I sure as heck hope so!

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  • ang7894
    ang7894 Member Posts: 540
    edited October 2013


    Mammo came back everything is fine :) won't see my doctor until Dec after that every 6 mo.

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  • Bren58
    Bren58 Member Posts: 1,048
    edited October 2013


    Ang, glad your mammo was good.


    Had another echo today, supposed to have Herceptin tomorrow if all is well. Then it's only one more after that.


    I got my compounded pain cream over the weekend, so hopefully that will help with the continued ALND post op pain and swelling. I sure would like to get this under control and start to build some muscle in my right arm again!

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  • Shasha10
    Shasha10 Member Posts: 297
    edited October 2013


    Sorry about this question but here it goes. My sister who is recently diagnosed with 1 cm ILC went to her breast surgeon today. it was removed clear margins. A couple of weeks ago According to her bs they don't grade ILC. She is not her2. They are waiting for her onco type to see if she needs chemo. Her bs told her to see the mo next. I wasn't there and she is flipping out. I think that the mo will oversea the next step weather or not its chemo or radiation. It doesn't mean she needs chemo yet. Am I wrong or right?? Any ideas???

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  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2013


    shasha - I am wondering if she misunderstood her BS - ILC can be graded like any other BC as long as they have enough specimen. Sometimes ILC does not present as a lump so possibly can complicate the pathology process. Does she have her hormonal status? MO referral does not automatically mean chemo but they oversee all systemic treatment, including hormonal therapy. A radiation oncologist would deal with rads if she need it.

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  • Shasha10
    Shasha10 Member Posts: 297
    edited October 2013


    Special K


    She is progesterone positive, her2 negative. Her bs had said she would need hormonal therapy. When I was with her at her last apt & asked about the grade her bs said they don't grade it. And that they would do an onco type to determine if she needs chemo. Her path report : pt1b pno ILC 0.9cm that's all the info they gave us. She wasn't very forthcoming. Anyway, you confirmed what I told my sister about seeing the mo. I couldn't make this apt. And felt guilty. Will definitely be with her next time. Neither she or or her husband asked any questions. I'll ask my mo when I see her for me what to expect.


    Thanks again for the info. Really appreciated

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  • naiviv
    naiviv Member Posts: 535
    edited October 2013


    Chika D, signed up.


    Sorry to hear about knees and other areas in pain.


    I wish you all a great night, need to try and sleep early PS appt tomorrow.


    Sweet dreams


    Vivian

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  • rozem
    rozem Member Posts: 1,375
    edited October 2013


    im sure im late to the game here but I think the new drug approval of perjeta is so exciting!!!! someone on the her2 board is already having it neoadjuvantly


    I have perjeta envy! I think we are so luck we have all these great targeted treatments for us her2 gals - I just wish they would hurry up and develop more for our TN sisters

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited October 2013


    Shasa they DID stage it. p1B refers to pathology specimen, 1 b refers to a size 0.5 to 0.9 tumor pN0 refers to pathology of Nodes zero were affected. ILC 0.9 means that the tumor was invasive lobular cancer of 0.9 cm


    My AJCC is p1C pNO. 1.6 IDC


    That is mine is larger than your sister so I got a C because it was larger than 1cm and smaller than 2 cm. pN0 because I had no nodal involvement. 1.6 IDC because the invasive DUCTAL part was 1.6


    I hope that helped. If there were other organs involved, metastisized cancer, that number would have an M following the pN0. (Well it probably wouldnt be N0 if there was mets. )


    Much love.

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  • NickyJ
    NickyJ Member Posts: 722
    edited October 2013


    Ang, great news about the mammo!


    Sasha, your sister is lucky to have you on her side. It's amazing how much knowledge we have picked up on our journeys. I tell friends I feel like I've done the first year of med school!


    Moonflwr, I think in general stage IV has node involvement, but I'm N0!


    Nicky

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  • Pbrain
    Pbrain Member Posts: 863
    edited October 2013


    Shasha, I've worked with pathologists and grading a cancer type is very subjective. I wouldn't worry too much about that part. However, the onco typing is pretty dang informative (at least it is all we have at this point) so the decision on chemo will be based on something more substantial than the opinion of grade set by a pathologist who may have hit a fire hydrant on his/her way to work, didn't have coffee yet and is a pissy mood.


    The fact that she is seeing an MO is not indicative of her need for chemo. The surgeon does the surgery and then allows the "medical" side to manage the case. So tell your sister to hang in there. She is probably just radiation only...betcha. She has a pretty tiny tumor.

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  • ashla
    ashla Member Posts: 1,581
    edited October 2013


    Incredibly good research news from the UK for HER. 2 pos!


    "

    Scientists break blood-brain barrier to allow cancer drugs in

    Wednesday 9 October 2013

    Cancer Research UK Press Release


    Cancer Research UK scientists have found a way of delivering drugs more effectively to treat life-threatening cancers that have spread to the brain, according to research published in theJournal of the National Cancer Institute1.


    The study, in mice and tissue samples, used a protein called TNF that can track down sites in the brain where cancer has spread by recognising a marker found only on tumour blood vessels.


    The scientists, from the University of Oxford, found that TNF can home in on these sites and temporarily open the blood-brain barrier (BBB) allowing drugs to pass from the blood system into the tumour.


    The BBB acts as a shield that prevents potentially dangerous particles such as bacteria entering the brain. But it’s this same shield that stops cancer drugs reaching tumours that have spread to the brain.


    The TNF protein only broke down the BBB in the blood vessels that pass through the tumour, leaving the healthy parts of the brain undamaged by potentially toxic drugs.


    The research shows that when TNF is injected into the bloodstream the breast cancer drug herceptin (trastuzumab) which is not normally able to cross the BBB, can reach cancer cells in the brain.


    As well as preventing drugs reaching tumours in the brain, the BBB prevents the early diagnosis of the tumour’s spread to the brain as the dyes used to highlight the tumour cannot penetrate the BBB. This new approach will also allow diagnostic dyes to access the tumour and enable earlier diagnosis.


    Study author Dr Nicola Sibson, a Cancer Research UK funded scientist at the University of Oxford, said: “Treatments that work very well against the original site of the cancer lose their effectiveness when the cancer spreads to the brain – as these drugs are prevented from getting to the tumour because of the blood-brain-barrier.


    “A number of attempts have been made to open up the BBB but they’ve all struggled because they’re either not specific enough to open the BBB only at the site of the tumour or not effective enough to allow the drug across to kill the cancer.”


    Dr Kat Arney, science information manager at Cancer Research UK, said: “Getting treatments through the blood-brain barrier remains one of the greatest challenges for cancer researchers. This exciting result points the way to a potentially game-changing moment in finding ways to treat cancers that have spread to the brain. We now need to test this approach in cancer patients to see if it will have the same effect.”

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  • ChickaD
    ChickaD Member Posts: 1,025
    edited October 2013


    Hi my friends...did my Rads mapping today....I should get a medal or at least some mardi-gras beads for as many people touched my boobs today...lol...I officially start Rads next Wed...woohoo and ugh......

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  • Moonflwr912
    Moonflwr912 Member Posts: 6,856
    edited October 2013


    hey ChickD! Happy you are on your way towards the finish line. Sometimes it seems they keep moving it though! LOL

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