IBC lounge: roll call, support and just a good place to hang out
Comments
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Thanks so much for the input from everyone! much appreciated!
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Oh no Fran, sorry to hear about all of that. Hope the clot dissolves safely for you, I'm sure that is scary. Did they find during a scan?This is first I'd heard of Herceptin plus Navelbine so I spent some time checking it out on the web. May I ask how long you've been off Herceptin, and how long you were on it the first time? I'm also HER2+ so I like to know what some of my options will be in the future.
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Hi Lori- it was truly a crazy late afternoon on Friday but it's Monday morning & I'm feeling a whole lot better! Since I had such apparent swelling in my right arm, the onco decided to run "a quick ultrasound to rule out a blood clot" (she actually said to me later that she even she was surprised that the radiologist found one). This is my 3rd round of Herceptin during the past 8 yrs. First, after my initial diagnosis (post treatment) for a yr (which is protocol for Her2) and then again in 2015 with Herceptin/Perjeta. I did well after both and was NED for at least a year following each time so I'm hopeful that this new combo (Herceptin/Navelbine) will do the same since it just seems to keep "popping back up" in my lymph nodes. Saturday I was down for the count but yesterday I was able to go to Church and a bit of shopping so I'm anticipating being able to continue to work on this combo-fingers crossed! Have a great week!
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Fran, you're my hero!
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Fran, good thing she decided to do that ultrasound,and even better that the radiologist found it! Glad to hear that your first round of Herceptin and Navelbine wasn't too bad.
I'm not NED and probably never will be according to my MO, but so far Herceptin & Perjeta is keeping me stable enough with a good quality of life that I hope to stay on it until it stops working...and I hope that turns out to be many years. I know that you have to be off a chemo drug for a certain number of years before you can try it again, didn't know if that applies to Herceptin too, but sounds like it's been 3 years for you?
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Hey all, just a bit of news to say no news yet : my mastectomy date is changed for the 25th.
Thanks for telling us about the blood clot Fran, that sounds wild, thank goodness they caught it !
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That's why I say, no news is good news around here! Is your breast in good shape for the mastectomy Amarantha?
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Good to hear from you Amarantha, Hope it was rescheduled for a good reason and not due to any complications?
Hope everyone has a fantastic weekend!
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It wasn't really rescheduled, just that the surgeon gave me a date over the phone, and either he messed up or I heard wrong, or ... who knows. It was a nonsensical date because it was a Saturday and nothing happens on a Saturday apparently. Yes TT, my breast is in fine shape - I'll almost miss it, but I'm looking forward to being flat on both sides. Now what shall I wear ? I guess nothing for a while !
I've been to two concerts and written two new reviews since we last talked, I had such a great time, it helps keep my mind off of yucky things. Now hubby is suffering an attack of gout and feeling so miserable I gave him some of my codeine. I hope he feels better in time to be my slave after the operation !
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A. So pleased that you are cruising toward your op day and fitting in some opera reviews meanwhile. Be sure to avoid all germs so that the op is not postponed due to infections or colds. Gout is as bad as cancer IMO and it took me years on the old remedy, colchicine (taken after a bout) before going on a daily Allopurinol tablet. He can PM me on this topic if he wishes. I’m a world expert 😀.
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Amarantha, I bet it feels solid to get a plan moving forward, even if the date might be scrambled. My mom's been flat on both sides for a long, long time and she really likes it. She wears comfortable, soft undershirts and then dresses in loose-fitting, drapey tops, frequently with a jacket, sweater, or blazer. She looks fabulous.
Gout! Poor guy! I have heard that gout and kidney stones rival childbirth when it comes to ouchiness. Hope he's better very soon.
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Hi everbody ! I'm alive, surgery was difficult according to the surgeon. Now I have a big hollow on the right side of my chest like the crater of a volcano ! Feeling great though, and have a lovely english speaking roommate.
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Wow, big cyber hugs for you Amarantha. I'd suggest a crater might have been expected! Take it easy in recovery and keep us posted.
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Welcome back after all that anesthesia, Amarantha! Glad you're alive, crater and all. Rest, recover, repeat. SB
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Glad to hear that you came through a difficult surgery feeling great Amarantha. Rest up and take good care of yourself.
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Big cyber hugs Armantha. So good to hear from you so soon after surgery.
Val
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Amarantha, about that crater. We can all come and bring some spackling paste. We'll have that crater filled in and smoothed over in no time. You'll love it.
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Oh Amarantha, so good to hear from you so soon after surgery. Lots of wishes for a good recovery.
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So wonderful to hear from you Amarantha! Take it easy and give your body time to heal. Wishing you all the best:)
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Thank you, darling friends ! I'm bumbling along, feeling mostly pretty wonderful considering. sbelizabeth, come on over with that spackling paste !
How are you all doing ?
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It's getting down to the wire for me--I have thirteen more days at work before RETIREMENT and about sixty projects to finish up. The house is up for sale, which means every...tiny...thing...is spotless, de-cluttered, fresh flowers, no-one-really-lives-here "staged." I told my hubs he must pee in the backyard and never think about touching the bathroom towels. All of our real STUFF is in boxes, stacked up in the garage, trying to look unobtrusive but failing miserably. Movers come on October 29th, ready or not!
Amarantha, lovely to see your message. Glad you're doing well--we'll take "bumbling along" anytime. Rest, recover, heal. SB
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Amarantha, have you been given your post-op pathology report yet? I was wondering how they went with margins. Obviously if you're left with a deep crater, they went for it.
Sbelizabeth, you are at a crossroad. Hope the house sale goes well and you don't have to pee in the backyard for too long
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Hi TT, I'm looking forward to the pathology report, but it will take at least three weeks I am told. It is a long process. Meanwhile I will soon be back on Halaven.
sbelizabeth - emptying your house for staging - that's what my parents are in the midst of as well. I empathise !
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This YouTube clip not a glossy promotion, rather it's real people talking about their disease. I'm easy to spot.
https://www.youtube.com/watch?v=bFoHlCXPOMQ0 -
Oh TT, great video! Real people telling how it is. The motto "breast cancer is more than a tumor" made me cry.
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Hello I was diagnosed in Sept of 2006 with IBC, staged 3B at that time. I was 2 years in treatment. 3 Rounds of Chemo and 35 treatments of Radiation. I was deeply burned and took months to heal up. But went back to work as I was out of funds, sold my home, went through 3 401K's and drained all my savings and checking accounts even with insurance. I have also had In Sito breast cancer in my left breast and went through surgery and another 35 treatments of radiation. I also have had skin cancer, which keeps reoccurring. Now I have CLL a form of leukemia which has no cure. I have longer than any of my surgeons patients by over 2 years and she quoted me that in 2007. She said she had one patient that lived 10 years at that time. So I think of myself as an Energizer Bunnie at this point in time. Any one else need someone to talk too. I am retired because of the Leukemia and other serious side effects that my long treatments for both breast cancer caused.
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Welcome Lissa, that’s quite a dreadful run of bad luck. You’ve had all that medical toxicity and financial toxicity to boot. The fact that you are a long-term survivor is the best news of all.
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((((Lissa)))), you are a very strong person, clearly. We are very sorry for all that you have been through, and are going through now.
We truly admire your strength, and appreciate you sharing your inspirational story of long term survival. We hope you find support and comfort here and in your life.
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TT I thought of you while watching the premiere of a new TV drama series on ABC called "A Million Little Things" because one of the lead characters is a MAN with breast cancer! Apparently the message is getting out.
Status quo here, hope everyone is doing well.
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LoriCA, status quo is not a bad state!
I’m aware of that show and have seen the trailer. What a great boost for male bc awareness it will be. Will look out for it when it makes it to one of the channels here.
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