IBC lounge: roll call, support and just a good place to hang out

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  • PurpleMinion
    PurpleMinion Member Posts: 165
    edited April 2016

    Hey Moreshoes, I don't think anyone thinks you are stupid! It's just that you've had a bunch of other treatments that obviously could complicate what you are able to get now. The standard of care for IBC is chemo, a non skin sparing mastectomy with full node dissection and rads. So, if you CAN get both the mastectomy and more rads that is what they should be doing for you, but we don't know if you are limited by previous rads etc. Man what a complicated mess this whole thing can be! You are in my thoughts, as are so many of the wonderful people on this thread, love to all.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited April 2016

    Geeper. Glad the taxol is going well for you. Not enough people mention ice gloves on the posts, so you could explain the procedure for those who don't know what they are. I'm sure the scans will show great progress.

    MoreShoes. I hate the word 'journey' for cancer of any kind, but you're certainly on a long trip! BC is after you, so I's say go for broke with your next treatment.


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  • Traveltext
    Traveltext Member Posts: 2,089
    edited May 2016

    Meadow. I don't know why Bon left BCO and, like you, I miss her comments and the hope she gave us all as a long-term IBC patient. I was out of touch when the topic disappeared, but perhaps someone can check back through their notification emails and let us know what happened. The important thing is that PurpleMinion has this new topic up an running and it is already serving a useful purpose in shedding light on IBC treatment options and individual experiences.

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited May 2016

    Just wanted to say how helpful this thread is. Please keep it going. I was a newbie and the other thread helped me so much. I'm grateful that Purpleminio started this and you long timers are keeping it going.

    This thread has kept me from feeling totally lost.

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  • PurpleMinion
    PurpleMinion Member Posts: 165
    edited May 2016

    That Bon left is sad. But, it had zero to do with the IBC thread, just so you all know. She had some conflict on the stage IV boards and because she had started that IBC thread we all loved, it went away when her profile did. I can assure you all that "we" had nothing to do with her leaving.

    I am so glad we have been able to reconvene here, this is a really great group of folks and we have a wealth of knowledge and experience. There are a few others I'd love to see here and I will try to look them up and invite them to join us.

    I know that in the early days I would have melted into a puddle of goo had I not had the wisdom, reassurances and support of you all (and Bon). Let's keep it going for us and for those who come to us in the future.

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  • Milwmama
    Milwmama Member Posts: 115
    edited May 2016

    Thanks to everyone for the responses. Just trying to plan ahead somewhat. This darn chemo thing keeps throwing loops into my plans. Had to skip another session due to low counts so I'm looking further into June to be done. Rats. On a good note, I definitely will get to go to my Def Leppard/Tesla concert now free of chemo and pre-surgery :)

    👍👍

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  • Meadow
    Meadow Member Posts: 2,007
    edited May 2016

    Rock on Milwmama!

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited May 2016

    Hydranne, best wishes and hugs to you on your surgery. I'm right behind you on the 24th. I agree with Meadow, rock on Milwmama. We will get thorugh this.

    Thanks Purpleminion for letting us know it was not the IBC thread that made Bon leave. She helped me a lot when I was first diagnosed and I miss her.

    Val

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited May 2016

    Hey guys, I see the surgeon on the 10th. He's currently on vacation but I trust him so I don't want anyone else. What questions should I ask him about the operation? Is there a link? 1st of June is the date.

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  • PurpleMinion
    PurpleMinion Member Posts: 165
    edited May 2016

    Hey all, I feel like I need a check in here. PET scan shows mets to bones. Boo hoo. The good news is that bone mets don't kill you. I start gem/carbo Monday, not a moment too soon. I am processing the new info and working through the realities of the situation. I sure hope every one of you is having a good weekend and happy mother's day to all the moms.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited May 2016

    Great that you're starting on the treatment PM so soon. Best wishes.


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  • Meadow
    Meadow Member Posts: 2,007
    edited May 2016

    Sorry about this, sweet Purple!

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  • jessozzie
    jessozzie Member Posts: 117
    edited May 2016

    Hi all,sorry i have not been on lately.If i could share with you my delight in all clear scans and NED.

    My Mo is calling me wonder woman,we have such a laugh...

    Chat soon...

    Jess.

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  • Meadow
    Meadow Member Posts: 2,007
    edited May 2016

    Oh my, I agree with your MO!

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  • jessozzie
    jessozzie Member Posts: 117
    edited May 2016

    Hi Meadow,Kicks,you 2 were my first friends here when our journey started about the same time.

    I hope all is well with you,and to the rest of our friends here.

    PS.i have not seen Akevia posting lately, i hope all is ok with her!


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  • jessozzie
    jessozzie Member Posts: 117
    edited May 2016

    Hi Meadow,Kicks,you were my first 2 friends on here when our journey started about the same time,

    i hope all is well with you and the rest of our friends here.

    ps. i have not heard from Akevia lately,i hope all is well with her.

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  • Kicks
    Kicks Member Posts: 4,131
    edited May 2016

    Hi jessozzie! Good to 'hear' from you and that you're doing great. (How is your teaching going?)

    I'm still NED and feeling great - Aug will be 7 yrs since DX! When I hit a yr post DX all my Drs told me at time of DX, they did not think I'd make it to a year. Silly me - majorty FOOLED them.

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited May 2016

    Purple minion, good luck! I also had Gem/Carbo. It's not as nasty as FEC.

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited May 2016

    Are there any things that I *have* to know about double mastectomy? Is there a link with info on this site?

    Thank you.

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  • PurpleMinion
    PurpleMinion Member Posts: 165
    edited May 2016

    MoreShoes, I am so hoping that you are right - FEC kicked my a$$ and put me in the hospital with neutropenic fever even WITH neulasta. Thanks for that comment, I will be holding on to that this week for sure.

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  • PurpleMinion
    PurpleMinion Member Posts: 165
    edited May 2016

    I also wanted to mention how grateful I am for this site and you people. I came here when I was first diagnosed, scared out of my wits and was greatly calmed by the voices here. I would not have had most of the insight I have now if weren't for bco. I would not have found a facebook group that I really connect with. I would not have found the amazing Dr C. So, thanks.

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  • Meadow
    Meadow Member Posts: 2,007
    edited May 2016

    Yes Jessozzie, You and Kicks feel like old friends, you were both there from the start. And Purple, I feel the same way, what a blessing this site has been, connecting me with all of you.

    Not sure how sweet Akevia is doing, need to check in Akevia, soon please.

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited May 2016

    Purpleminion, Gem/Carbo is heavy, it's really serious stuff. I had low red blood cells count and needed transfusion. BUT while doing FEC, the first three days after every chemo I was like a zombie. The only thing I could do was to wait for the three days to pass. Not that afterwards was much better. With the Gem/Carbo I could function. I hope it does what it has to do with the minimum side effects.

    Monday you had the first dose. How did it go?

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  • PurpleMinion
    PurpleMinion Member Posts: 165
    edited May 2016

    MoreShoes, I had the first dose today, just a few hours ago, so it went well, nothing weird, and now I wait to see what happens! They were about to give me zofran in the premeds but luckily I remembered in time to say no, because that stuff makes me sick and gives me headached and doesn't work - so I got emend instead. I have a whole slew of nausea meds here at home and I have the neulasta on body injector and lots of water and all of that chemo stuff at hand. I am doing this chemo at a different hospital in a different city with a different doctor so I had to find out WHERE the ER even is, just in case (the hospital is like 45 miles away, if I am not having a 9-1-1 incident I will not be going to any of my local hospitals, they aren't so great and of course my doctor wouldn't be there! Let's hope that doesn't happen. I had low counts on carbo before but it was the FEC that got me the transfusions and in-patient hospital stay. I have cleared my calendar for the next few days, except for a friend bringing me ice cream tomorrow, I think I can handle that appointment ;)


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  • MoreShoes
    MoreShoes Member Posts: 322
    edited May 2016

    The neulasta kept my WBC high enough. The Carbo brought the reds down. Hence the transufions. Good luck! The ice cream appt should be fine ;-)


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  • Milwmama
    Milwmama Member Posts: 115
    edited May 2016

    Good luck Purple, hope it all goes well. I have 4 more Taxol and 1 Taxol/Carbo to go and my counts keep getting lower so I get that part.

    Hope you enjoyed the ice cream ;)

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  • PurpleMinion
    PurpleMinion Member Posts: 165
    edited May 2016

    Hey all, sorry I haven't been to this thread in a few days. I had my chemo and survived the aftermath (and the steroid crash). I ate way too much ice cream! I have been busy making and attending appointments, seems my cancer is angry and roaring around causing me plenty of troubles. Bones for sure, now there's some thought that I may have a leptomeningeal tumor near my spinal cord at my upper back. Lovely. MRIs on Sunday again, then a spinal tap Monday. Ugh, I hate cancer.

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  • MoreShoes
    MoreShoes Member Posts: 322
    edited May 2016

    Oh Purple, it sucks.It definitely keeps you busy. Do you find the energy to do something fun too?



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  • Traveltext
    Traveltext Member Posts: 2,089
    edited May 2016

    That's some crappy news, Purple, but don't lose heart. It sounds like you are receiving great care, which is very important. Best wishes.


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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited May 2016

    So sorry Purple, sending virtual hugs.

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