IBC lounge: roll call, support and just a good place to hang out
Comments
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Hi minimoocher, glad you are seeing results with Kadcyla. I am also on it after I progressed while just on HP. I have also had the HPT combo a few times to push back progression. I find the Kadcyla quite manageable.There is an active Kadcyle thread that you may want to peruse. There are some ladies who have been successfully managing on Kadcyla for several years. I hope to have a good long run on it also! Cheers!
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So happy for you to see improvement. So often we have to trust without knowing during treatment. I wish you continued success and comfortable treatment
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Keep up the good fight, Scwilly. Thinking of you.
Mini, glad you are seeing results with the skin mets improvement. Hello to you from across the pond .
Cheers to you, Margarita!
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Margarita, thanks for dropping by and sharing your story.
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One year ago, I knew I had cancer. This is also my birthday. I can now say time has flown. I went out with friends, walked and did many mundane things that I used to take for granted.
I would not be sane without the support of you ladies this past year. I am truly grateful to you all.
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Good to hear from you Valstim. Time certainly does fly by and it is good to hear you returning to more normal life. Glad you had a good time with friends. Hope you have a good holiday too.
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Happy Birthday Val. Your year with cancer (not to mention the stroke) has no doubt been a blur, but I'm glad for you are returning to a normal life.
Mara, last time you posted you were unable to eat, or do anything beyond lying down. How are you now?
BCO asked me to write them an article and they published it HERE.
How's everyone else?
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TT, thanks for asking. I still have no appetite but I am able to eat. I think with more physical activity my appetite will improve. I am able to do errands etc now. If tired will nap. I have improved.
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I have a question, I'm hoping someone might be able to guide me on.. I was previously diagnosed in 2003 with stage 3b breast cancer 10/15 nodes, ER+/PR+ HER2+. I had a modified radical mastectomy, chemo, radiation, and reconstruction. Last week I noticed swelling and a red patch on the same breast as was affected before. I am scheduled for an MRI on Monday, I'm just wondering if it is IBC, if anyone knows what type of surgical options there are since I've already had the MRM..
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Val, I don't believe it. My birthday is on 2nd of December, yours too? Happy Birthday to us!!!!
I can't believe that I'm still around. Last year on this day, i was in Amsterdam discussing experimental chemo treatments. Today I enjoy the day with family, friends and lot's of chocolate.
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Happy Birthday to Moreshoes and Mara51506 plus I am glad your feeling better Mara. Are birthdays sure are sweet these day. IT's great there's a bunch of you at once
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Hotmama... I wish I knew the answer, but I haven't even had surgery yet. As far as options: I was told when my surgeon believed mine is actually IBC (though my oncologist disagrees) that instead of doing reconstruction right away, they need to do radiation and then maybe reconstruction a year after. And I think they need to take more skin and nodes with an IBC diagnosis.
I can't say that is what you have or not, but that may help answer what surgery options are available if it is IBC. I think there are many skin changes that can happen that are not IBC but I'm not the expert on that. If the red goes away with steroids, one may think it is not IBC. It is not supposed to get better regarding redness from anything in my understanding. My redness goes completely away with 1 dose of steroids with my irinotecan infusion so ... I don't think mine is real IBC. I think it's just spreading to the skin and lymph and inflaming that area.
Good luck with the scan.
I hope it's nothing major. 0 -
hottmamahouse, welcome to the community, and we certainly hope that the new symptoms are nothing to worry about. It is really impossible for any of us to say naturally. We do understand the anxiety however, and how difficult it is to have to wait!
We're all here for you, and hoping it is all benign!
Warmly,
The Mods
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Just want to wish you all a very Happy Christmas. Hoping 2017 will be a better year for us all. Remembering our dear friend Purpleminion and others we have lost this year. X
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Merry Christmas to you minimoocher and to all. I am pleasantly surprised that all is good with me this year. Happy New Year
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Enjoy the holidays! Have a great time and a very happy, healthy 2017!
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Mini, I want one of those fantastic looking cookies please!
Season's Greetings to all the wonderful people in the IBC lounge. As PurpleMinion said: "I think it is really important for us to talk and share and learn from each other."
Looking forward to us all posting here in the new year in better health and with good cheer.
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Yes, Merry Christmas and Happy Holidays to all my dear friends here! I sat in the floor wrapping gifts tonight, and now they are under the tree. Christmas Eve is here!
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May we all have a prosperous and road to health new year. These boards and especially the IBC threads have been invaluable to me this past year.
Thanks to Bon who had the one I'd joined previously, our dear PurpleMinion who continued on this one, and all of you that continue to contribute. This is my lifeline. Thank you so much.
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Yes Val, I echo your voice here! Merry Christmas to all!
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Merry Christmas to my fellow IBC travellers. I am back on these boards ... recurrence of IBC diagnosed just a few weeks ago. I look forward to your company ...
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Merry Christmas, Happy Hanukkah for anybody celebrating.
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amarantha, Sorry to hear of your bilateral recurrence, but it's good news to see that you are ER+/PR+, HER2-.
Best wishes for your new treatment. Keep us posted.
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amarantha, we are here for you!
I am having a revision surgery on Tuesday, the 27th, to correct some scarring and cording from rads. Wish me luck!
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Good luck, Meadow ! correcting scarring and cording ! can they do that ? wow. I'll be interested to hear how that works out.
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Good luck with the surgery Meadow. Hope everything goes to plan.
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Best wishes for your surgery Meadow. Sending hugs to you amarantha. At least with your positive receptor status there is more in the arsenal for treatment?
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Yes Valstim and Traveltext, 90 percent estrogen receptors ! so we are going to take the Estrogen fighting angle for hormonal and targeted therapy. And good news, NO OTHER METASTASES ! other than the lymph node in the opposite side. However the oncologist warned me that there were estrogen receptors noted in the first biopsies of the original cancer too, and ultimately either they changed during treatment or else it hadn't been true. I am a bit confused about this, but anyhow, yes for now this is good news. I saw the oncologist today, because I was worried about the changes I perceive in only two weeks, so she took time to reassure me, saying it was a little less red, and the harder lumpier aspect of the site over the scar is actually evidence that the treatment is working. Breathing.
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Happy New Year to all,
Had my 6th Kadcyla treatment today. Spoke to my oncologist about a family event over in Ireland in February I'm hoping to attend so he's tweeking the treatment dates to accommodate the trip...... I'm very excited. Haven't been able to go to the Emerald Isle at all in 2016. Fingers crossed it works out. X
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