Well hell, that wasn't good news

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  • Emma12
    Emma12 Member Posts: 43
    edited February 2014

    All the best. Sending you cyber hugs and kisses!!!! Stay strong no matter what.

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  • ali68
    ali68 Member Posts: 1,383
    edited February 2014

    Well done you xx i really hope you get the all clear we are all thinking of you. How long do you have to wait?

    I'm having problems with my back and i think i will need a scan but having physio to start with.

    wine and chocs work for me xx

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited October 2014

    I doubt the treatment would be substantially different at Lahey or MG or DF. The only thing that would definitely be different is each place probably is running different clinical trials. So if you're inclined to get in a trial of some sort, that might help you decide.

    Personally I'd go for whichever place is doing a vaccine trial (if there is one). I think that's most likely to be DF but I know Lahey does good trials too. Interestingly, MGH seems to offer fewest trials. But the vaccine trials in general look very promising. There are reports of the vaccine alone taking people to NED.

    FWIW, my onc has a patient who has multiple mets in bones and organs. He got her to NED in 2002 and she's still NED! I'm sorry you gotta gear up again, but I know you can do it. You'll get rid of those pelvic mets, and then you'll go on maintenance treatments and you'll maintain NED forever!!

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2014

    Am keeping you in my prayers and best hopes forward.  I agree it's good to get a second opinion no matter how good your onc & subspecialists are.  You are strong and I know you'll handle whatever comes.  We're cheering you on !!   (((()))))  Shelly

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited February 2014

    Tech, what is that vaccine? Can you tell us more? pretty please? Thanks!

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited February 2014

    RT....Glad to hear things went well.  The waiting game is the worse, I hate it.  Still sending those prayers up and hugs your way. 

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited February 2014

    Hey roses - Just sending (((hugs))) your way. I hope that you are taking it easy and treating yourself very well. Ice Cream, wine, warm baths, good movies, comfortable soft clothes. 

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  • Holeinone
    Holeinone Member Posts: 2,478
    edited February 2014

    Roses,

    Hoping you are not too sore from that biopsy, thinking of you..

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  • RosesToeses
    RosesToeses Member Posts: 721
    edited February 2014

    Aw, thanks so much!

    I'm doing ok, kind of sore but not being too ambitious, so that helps.  I'm not allowed wine or baths right now, but I worked half a day and am working on soft clothes and sugary foods, so that helps :)

    They told me the results should be ready in about a week and I have an appointment with my onc to discuss then.  It seems like in the past they have always given longer wait times and then called sooner, but I think I'd be surprised if that happened now because of the appointment.

    Tech, that's really interesting about the vaccine and NED.  Lahey is doing the NeuVax trial but in the end I wasn't eligible.  Kathe, the summary of the NeuVax trial is here (4th one down) but I'm pretty sure there are some other vaccines also being tested in other trials.

    Again, thanks so much for the warm wishes, everyone, I can't tell you how nice it is to read them, you guys are the best!

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  • Momine
    Momine Member Posts: 7,859
    edited February 2014

    Roses, thanks for checking in. I have been thinking of you. Rest up!

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  • Elizabeth1959
    Elizabeth1959 Member Posts: 346
    edited February 2014

    I'm checking up on you too.  I hope you feel better soon

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  • RosesToeses
    RosesToeses Member Posts: 721
    edited February 2014

    Thanks, Momine and Elizabeth, resting and feeling better, I promise!

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited February 2014

    Add me to the list that's just checking in. Hope you are in a cozy & comfortable place. Many hugs.

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  • TectonicShift
    TectonicShift Member Posts: 752
    edited October 2014

    kathec, there are several different vaccines for breast cancer in trial right now.  There is AE37 and E75 (NeuVax). And there are others.

    Go to clinicaltrials.gov and search for "breast cancer" "vaccine" and you'll see a number of trials. Down near the bottom of each trial page it lists locations offering the trial. (Sometimes you have to "open" the list of locations by clicking on the little carrot.)

    I think they are just getting ready to start the AE37 phase III trial. 

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  • Tomboy
    Tomboy Member Posts: 3,945
    edited February 2014

    thanks, tech! i will! just prolly not before dinner and a movie! but i promiseyou i will be all over it tomorrow!

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  • Gitane
    Gitane Member Posts: 1,885
    edited February 2014

    The biopsy is behind you now.  Just hope you are comfortable.  Thinking of you and will be checking in like all the others.  Healing hugs going out to you tonight.

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  • lovujja
    lovujja Member Posts: 119
    edited February 2014

    My prayers and thoughts are with you. After going through cancer diagnosis and treamtment, i learned to see positive side of life. As you say body organs are fine may be you have to keep that in mind and fight back one more time. Best of luck.

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  • Sharon1942
    Sharon1942 Member Posts: 272
    edited February 2014

    Roses, sorry for the mets. We just never know what each ache & pain might mean, do we?  I have pain in my hips & my rheumatologist says it is osteoarthritis (I'm 71). Hope he is right, but I worry. 

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  • Gitane
    Gitane Member Posts: 1,885
    edited February 2014

    Just thinking of you tonight, RosesToeses.  Hugs, G.

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited February 2014

    Same here, Roses.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited February 2014

    Roses, I hope you're healing from the biopsy now. Things will also look better when you have the answers and a treatment plan in place.

    Sigh. I hate to welcome people to Stage IV (for obvious reasons) but we'll help you in any way we can.

    Leah

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  • hopefour
    hopefour Member Posts: 459
    edited February 2014

    RosesToeses...from what I am understanding you are still waiting on your results from your biopsy??!! Please, let us know how it goes and know we're here to support and encourage you either way! 

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  • RosesToeses
    RosesToeses Member Posts: 721
    edited February 2014

    Thank you, everyone, for the continued support and good wishes.  I did get my results the other day and, as they thought, it's definitely mets to my bones.  Actually a few different bones, which is more than I had thought, but still good that nothing is showing in the organs.

    I've been trying to lay low and just get used to the new reality.  She started me on a bone strengthener and talked about some different options.  My second opinion appointment is coming up, so I'll see what she has to say, too, and see where we go from here.

    It stinks and even though I was expecting the news, I think it's going to take me a bit to get my equilibrum back.

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  • ali68
    ali68 Member Posts: 1,383
    edited February 2014

    Hun, what a shock but you have the nice mets. I 'm waiting for my bone scan. Thinking of you xx

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  • Lily55
    Lily55 Member Posts: 3,534
    edited February 2014

    Rosestoeses, we are here for you but don´t rush getting your equilibrium back, as you will be better off letting it all out xx

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  • ziggypop
    ziggypop Member Posts: 1,071
    edited February 2014

    (((((hugs))))))) 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2014

    Roses,  You've been on my mind and just want to send you some gently cyber hugs and prayers.

    Oceana

    marvelous-nicole-rodriguez.jpg (180×119)

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  • Gitane
    Gitane Member Posts: 1,885
    edited February 2014

    (((((RosesToeses)))))

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  • jennyboog
    jennyboog Member Posts: 1,322
    edited February 2014

    So sorry to hear this.  My thoughts and prayers will be with you, wishing you NED soon....keep the faith. 

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  • gonegirl
    gonegirl Member Posts: 1,871
    edited March 2014

    Roses. I am so sorry. Mets suck. There's a very supportive group on Facebook too. Many do well for years with mets. I'm about 3 years out with mets to liver

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