Stage 2 Sisters Club

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited January 2015

    Thanks Hopeful - I'll be sure to keep logging the miles!!!

    As far as the snow - I am always happy to share!!

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2015

    I think you get extra points for jogging in the snow. :) Just don't slip and hurt yourself!

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  • NisaVilla
    NisaVilla Member Posts: 574
    edited January 2015

    Hopefull - aww you are so sweet. Thank you. Your experience is so recent. Hope you are doing well. Arimidex actually brought me the gift of osteoporosis. I did exercise, have no weight problems, took supplements recommended, and still developed it. I can deal with it... I just don't want cancer anymore!

    SweetHope - please post more! Any SEs yet? I read your profile and the chemo combo you just started is going to bring your oncotype score from an 18 to a minus 10, lol. Good for you. Please tell me about the clinical trial.

    MJ - we are definitely toasting on April 24/25! And if not before, at the 5 year mark we will have to meet up somewhere and do a happy dance together! I have to say that you are taking the "live your life fully" advice literally - you go on lots of vacations! LoL. Welcome to Arimidex....best advice ever from Ruth: keep moving!



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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2015

    Nis - Sorry to hear that you've developed osteoporosis; sometimes doing all the right stuff just isn't enough - sort of like trying to avoid cancer :) But, like you, I'd take osteo. any day over cancer. Not to downplay the problems it brings in its wake but it definitely is the lesser of 2 problems. And I say that as one who's seen relatives affected by it.

    So far, I'm doing o.k. - the occasional melt down, time in the black pit of despair, you know. Once I have to face radiation it will be another story. And if I end up needing chemo.... I don't even want to go there.

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited January 2015

    issamarie, I have a similar diagnosis. Currently doing TC x 4 (taxotere/cytoxan), possible radiation as well, have consult next week. Had left mastectomy and have tissue expander which surgery to exchange will be put on hold if radiation is needed.

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  • formydaughter
    formydaughter Member Posts: 213
    edited January 2015

    hi ladies. I just found this group! I'm slogging through Herceptin infusions, reconstruction procedures and just started Lupron to be able to switch from tamoxifen to an AI. Ups and downs, as with everyone. Just wanted to join this thread, so here I am!

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited January 2015

    Nisa - you only live once! I'm trying to make the best of it! This is our annual cruise trip with the kids since they are on spring break - both finishing college this year so I' squeezing in what I can betore they go off on their own lives! Making memories I call it!

    I am all for meeting up with you to toast on our 5th anniversary - if not sooner!!!

    Welcome to all the new sisters! Hope your journey goes smoothly and without many complications!! We are here for you!!

    Hugs to all!!!

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited January 2015

    Hello, checking in from my phone as I am on vacation in Arizona. It has been unusually warm in North Dakota so maybe I should have changed my ticket to be gone when winter returns. Oh well, it's still fun to get away!

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2015

    For My Daughter-welcome to our Club. We're glad you found us. It looks like you've been through the wringer. I hope it all pays off in the long run.

    Ruth - doesn't it just figure that the weather turns nice when you leave? I hope you still get to go home to better temperatures; it's such a rude awakening otherwise! Enjoy your vacation.

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  • clarrn
    clarrn Member Posts: 557
    edited January 2015

    Made it through chemo and rads :) To start tamoxifen soon (I filled the prescription just can't make myself start!!) I am doing okay, some PTSD but getting some help now that I finally admitted I have been through a lot and I need help! Started exercising again and it really does help!

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  • runningcello
    runningcello Member Posts: 110
    edited January 2015

    i completed a genetics test prior to the new year and results came in a few weeks ago... i tested positive for the palb2 mutation. anyone here with that mutation?? it's a fairly new mutation with little research

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2015

    Clarm - congrats on making it through all the worst of it. Please don't stress the tamoxifen too much. I know many women who take it without any issues; you just don't hear about it from them. I hope you'll be one of them. Good luck and enjoy your workouts. I bet it feels great to start putting this on the back burner and take your life back!

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  • formydaughter
    formydaughter Member Posts: 213
    edited January 2015

    running cello, what does the mutation mean? Is it like BRCA? Is it standardly tested with BRCA testing or something else to ask for?

    And thank you Hopeful for the warm welcome!

    Clark - Tamoxifen isn't so bad. I get some hot flashes and head aches. But I undestand that headaches are rare. You can do it

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  • formydaughter
    formydaughter Member Posts: 213
    edited January 2015

    that was supposed to be Clarm not Clark. Spellcheck got the best of me... I'm sorry!

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2015

    Here's a link to some info on the PALB2 mutation: http://ghr.nlm.nih.gov/gene/PALB2

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  • formydaughter
    formydaughter Member Posts: 213
    edited January 2015

    hopeful - thank you for posting the link. So it looks like PALB2 is a mutation off of BRCA2 and the 2 work together. When I had my genetic testing, they indicated there were 2 phases of it. Since I tested negative for BRCA 1&2, we stopped. Perhaps the screening for PALB2 is part of the phase 2 testing,

    Running cello - I'm really sorry you have to deal with it. My genetic counselor said that there are likely quite a few yet unidentified gene components to familial cancer groups. They keep finding more. With my family history, they think there likely is some genetic link, but they don't know what it is yet. At least yours is discovered so you know what you are dealing with. (Even though it all sucks.) And I'm praying that they have figured out great treatments for PALB2 gals.

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited February 2015

    Hopeful - I guess I did junx us!!! 7 inches overnight & 5 more to come plus 40mph winds. Let me know when you're readyfor me to share - lol!!! It is pretty looking out at the woods though

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  • mjsgumbas
    mjsgumbas Member Posts: 373
    edited February 2015

    image

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  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited February 2015

    Beautiful picture. Glad it is not us!!!!!!

     


     

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2015

    It is really beautiful. Feel free to deliver any excess to Mt. Hood. ;)

    California's Mt Shasta could use it, too, but they'll need to put in their own request.

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  • PoppyK
    PoppyK Member Posts: 1,805
    edited February 2015

    Beautiful! It's sunny and 65 degrees here in SoCal.

    We've had enough rain that grass and wildflowers are growing on the hills and fields by my house. When my youngest son saw all the green, he ask me who planted all of the grass and flowers. I love this kid!

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited February 2015

    I can picture the wildflowers, Poppy - it's always such a treat to see them spring up, isn't it? (How old is your son? He sounds sweet.)


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  • Delvzy
    Delvzy Member Posts: 527
    edited February 2015

    what a beautiful picture I wish we got snow here inAustralia where I live

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  • runningcello
    runningcello Member Posts: 110
    edited February 2015

    @formydaughter so i did the genetic test for brca1/2 prior to my surgery and it came back negative. I did additional testing after my surgery and they confirmed PALB2. basically there is very little research regarding the mutation - what they do know is the onset of breast cancer is at a 20-50% risk with this mutation .. the risk of a second breast cancer & the link to ovarian is still unknown .. they will MRIs every year and mamograms every year so that they are in a way where every 6 months I receive something. They will begin doing pelvic ultrasounds after my wedding in May (I'm too nervous to have anything inside of me as I am a virgin) and they will do blood tests as it will highlight something regarding ovarian cancer?


    That's all I know so far. I meet with my oncologist on the 10th and we will find out more at that time. It's just sad there is not a lot of information about this mutation. Luckily, I don't have fanconi anemia which is linked to palb2 because death by 30 is very common.

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  • formydaughter
    formydaughter Member Posts: 213
    edited February 2015

    running cello - thank you so very much for sharing this information. I am so sorry that you are going through this and hope that your upcoming wedding provides joy and the planning a great and fun distraction from C. Keep us posted on what you learn about PALB2. I'm wondering if I should be tested. Do you know why they recommended further testing for you after BRCA

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  • runningcello
    runningcello Member Posts: 110
    edited February 2015

    @formydaughter THANK YOU!!


    they recommended additional genetic testing because i'm only 24 years old and i was diagnosed with breast cancer. they basically said it has to be genetic because it's just so uncommon - and therefore additional testing was done. i will certainly keep you posted as i learn more. i would recommend additional testing as BRCA1/2 are the most popular mutations but they are definitely not the only ones. this mutation is more recent and therefore if you were tested prior to its discovery, you may still have the chance of it existing.

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  • PoppyK
    PoppyK Member Posts: 1,805
    edited February 2015

    Runningcello, I remember when you joined the forum. You certainly have a lot on your plate! Planning your wedding! A very exciting time!

    If anyone is interested in some basic info on other identified genes associated with BC here's a link: http://www.breastcancer.org/symptoms/diagnosis/other-gene-testing

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  • formydaughter
    formydaughter Member Posts: 213
    edited February 2015

    I sent a message to my cancer genetic counselor re PALB2 and will see what she says about testing me

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  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2015

    Runningcello, so sorry you are having to go through this. Keep us posted on what you find out, your information will help others too.

    Clarm, don't be overly worried about tamoxifin. Most people do NOT have major problems with anti-hormonals. It's just natural that the people who do are having difficulties are the ones who are commenting about it, the ones who are doing well are just out living their lives.  I've found that exercise really helps both physically & mentally in dealing with the whole thing. If you want a great group of online exercise buddies, check out the 'Lets Post Our Daily Exercise' thread on the fitness forum

    I just got back from a fun vacation in Arizona, so am ready to face the cold & snow again!

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  • runningcello
    runningcello Member Posts: 110
    edited February 2015

    @ruthbru i certainly will keep you posted as i learn more about the mutation


    @formydaughter share any information as well if your oncologist provides you with any

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