IBC lounge: roll call, support and just a good place to hang out
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Hey there SBE. It's nice to have this safe place where everybody gets it, so thanks. This too shall pass. Is it time for your Alaskan adventure yet?? Let us know how it goes; I hope you have a wonderful time.
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The Great Alaska Salmon Coax launches tomorrow, thanks for remembering! Today is crammed with packing and preparing. We've been looking forward to this for a year so it better be a fishing trip that goes down in history.
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Ooooh, I know you're excited. I hope you have a fabulous time. Share a few photos with us so we can live vicariously through you! Take care.
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yes we get you LW! It’s ok to be angry, sad, shocked etc. we have been thru a lot esp Mara. I too was a calm happy go lucky positive person until dx. Often when I have my bulky hot night sleeve on, awake because mouth is so dry, with only one boob, I shout to my self, WHAT the heck happened to me!!!!! Feel like bawling. This all sucks but yes at least we are alive. Hang in there everyone
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Hi everyone! Seems like the forum software issues are never going to be fixed; I hate that people aren't coming here anymore. I just wanted to check in and see how you all are. Mamacure, I think we all have those "where'd my life go?" days but I think I'm coming to terms with my new reality...maybe!!
Hope everyone is doing well. Check in and say "hey" to us.
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I think most of the technical issues have been fixed.
I'm fine, thanks LW. Just been reflecting on the passing, two years ago, of one of our lovely members, Amarantha:
You can read about her in a couple of my posts on this page:
https://community.breastcancer.org/forum/81/topics...
Mamacure, sorry about the arm: what a burden in the hot weather.
SBE, don't forget we'll want an update on the Salmon Coax.0 -
Amarantha, you were classy, funny, articulate, professional...amazing. We love you and miss you. You were one of a kind.
The Great Alaskan Salmon Coax was a total blast. We were fishing on the Kenai River, where the sockeye are currently running. It's a completely different style of fishing than I've even done. These fish begin their journey in the Pacific Ocean and swim upriver, a long and treacherous journey, to the streams where they were initially hatched. There they spawn, and very soon afterwards, die. When they leave the ocean to head upriver they are only interested in reproduction and don't eat at all, so no regular bait is effective. You toss in a line with huge fly rod and drag it through the water, hoping the hook will snag a salmon's mouth. My hubs and I caught 15 or 16 fish between us. We filleted and froze them and flew them home in an insulated box as checked baggage.
I discovered an odd physiological fact about myself. I can pee in the parking lot porta-potty, then put on my waders and boots, collect my stuff, find a good spot, step into the river...and instantly have to pee again. Must be the breast cancer.
Here's a nice one I caught in a beautiful spot. Alaska is amazing.
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Beautiful picture sbelizabeth, nice outdoor scenery.
I am still doing fine, I never really think that I have been through very much as many more people with MBC have adjusted to many more treatments as progression sets in. Other than spot treatment in my brain, original treatments have been successful, nothing from the neck down shows up, brain has been stable after the spot treatment in 2018. Even people who deal with a recurrence but not MBC have to go through treatment all over again. I am used to my scans, Herceptin and echo appts. Only have to talk to my MO every three months. Pretty easy for me.
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Well, SBE, all that fish and the physiological discovery. Doesn't get much better.
mara, I've always thought your situation was unique. Do your medical team think this too?
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Hi everyone. I had my 3-month checkup today and it was a non-event. I have gained a couple of pounds and got a lecture about having a colonoscopy but other than that nothing to report. I see my plastic surgeon tomorrow for a 1-yr checkup and to discuss a slight revision on the end of my scar. There's a little "puff" there that he said could be stitched in his office to lie flatter, so hopefully that can be scheduled. He has to get approval from my MO before any cutting, though. I'm also going to ask him about additional lymph channel bypass connections in my arm; I'm still freaking out over LE.
TT--I don't believe the forum glitches have been fixed; my understanding is that they are looking for a whole new platform to migrate to. I just don't understand what is taking so long. I worked in IT for 30 years and have never seen such as this.
Mara--I'm glad your little cat is feeling better and that you are doing well.
Mamacure--what kind of night sleeve do you use? Is it one of the big "oven-mitt" things? How are you feeling these days?
SBE--what a great photo!! I'm so glad you had a great trip. I'm sure the scenery was swoon-worthy. Thanks for sharing.
Becky--check in when you can and let us know how treatment is going. I've been thinking about you.
Hope all the IBCers are doing well.
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TT, my situation has been unique in many ways. Inflammatory breast cancer that included a mastectomy BEFORE chemo and radiation which I came to find out is not how it normally goes. My MO does think I am a miracle walking around because having IBC and most likely having had cancer cells that were not picked initially, I should have long since died. But she likes to bring in new cancer docs to see me and literally tells them my condition is a miracle. No evidence of disease from the chin down for almost 7 years after treatment, my brain was only ever affected in one spot. A 10 cm cancer met behind my right ear, craniotomy and whole brain radiation with spot treatment in 2018. I was lucky as the met was not in an area that does a whole lot. I recovered from the initial effects of all the steroids, surgery and radiation within a month or two and don't feel impaired. I pretty much came out of the whole brain radiation same as the person I was before. Her2 positive is good because there are a lot of treatments. Just have the 3 month MRI to watch the brain and 6 months CT scans to watch for mets from the neck down. Heart echo is done every 4 months now since my heart is not affected by Herceptin to this point. Spreading to the brain first is becoming more common due to treatment improvements but having only one area of mets or oligometastatic as they say is apparently good for survival.
I am basically healthy and strong, only deal with fatigue most from the Herceptin. I have strong appetite and need to lose some weight, but overall, one of the luckier people who are stage IV. I feel lucky everyday when I hear sisters/brothers who struggle to be able to be stay on one medication and deal with a lot of side effects. There are more people like me surviving than used to be and the IBC apparently responds well to chemo. I don't honestly get reminded of how cancer feels except the loss of a lot of hair permanently, wigs help of course and visiting for my Herceptin every 3 weeks.
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Great post Mara. Thanks for telling your story, since it is fantastic for you and a huge encouragement for other IBC folks.
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Hi TT!
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Oh, hi kicks, thanks for the head’s up. It’s like old home week. ❤️As a 13-year IBC survivor you have a high place in the BCO hall of fame.
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Hi everyone,
SB, I Had a bladder of steel prior to DX but now I have to go way more often.
LW, glad to hear that your three month check up went well. mine is coming up in one month and I’m flying back to see my onc. I hear good things about City of Hope so will check them out. I get back pain sometimes so I can’t carry a big purse but getting better. I went thru a month of depression after treatment & moving but better now. Depression also triggeredprobably after hearing of online friend having a reoccurrence exactly 1 year after xeloda. She was in her 30s. This made me very upset. LE is doing good. My night time sleeve is oven mitt type LOL but it sure works. It’s by Sigvaris. I’m going to try a roller ball massager I saw on Amazon. I need to eat more greens & stretch more & stay positive. Thanks for keeping in touch! IT for 30 years, I’m impressed!!
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Mamacure, glad that your depression is lifting somewhat, it is so insidious sometimes, you don't think of it until it is there. Hope the roller ball massager and the overnight sleeve keeps the LE under control.
Kicks, 13 years is amazing, so glad for you.
My only thing I need now is more exercise and better diet. I get very lazy or tell myself it is too hot when it is not really. If it felt like 40 C or 100 F that would be different. Will work on it as the weeks go on. Need to be able to handle winter walking with my cleats. I stopped walking all the time before the first snow of 2021 because I fell and fractured my elbow and I honestly think my cheekbone as well. Feels like there is a dent. Since then, I became fearful of outdoor walking. I am gradually losing the fear and lifting feet along with keeping feet slightly wider apart since I do believe I trip over my own feet sometimes. Diet wise, I enjoy peanut butter too much. Eating less of it and more beans and rice type stuff.
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Hello all; hope you're doing well.
Mamacure, I'm sorry to hear about your friend. I hope your checkup goes well; will that be your last at that facility? I hear ya on the depression--it seems to sneak up on me from time to time. Recently I was reading online about IBC and got a new case of "shear terror," just like when I was first diagnosed. I swear, I believe we have PTSD after a cancer Dx. Let me know how the roller thing works; it seems like my attempts at MLD aren't very effective.
Mara--you inspire me with the talk of walking and a better diet. I need to make some positive changes but somehow I just keep making excuses.
Take care, everyone.
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LW, it is a struggle to keep myself motivated for the eating better and moving. I do move at least three or four days per week, some days, I do nothing. I had been extra tired after my last Herceptin. I do know not to buy any chips for myself or more than 1 chocolate. I also sometimes have peanut butter as a meal when I do not know what I want to make. As long as I can walk outside for at least 30 or more minutes without dying, that will be a step in the right direction. I have started reading just yesterday, newer VC Andrews book called Secret Brother, related to the Flowers in the Attic series. It was not a long book but I finished it already. Crazy I think.
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IBC warrior, Lori, a long-time member of our group who is only on Twitter these days, has asked me to share her good news.
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IBC warrior, Lori, a long-time member of our group who is only on Twitter these days, has asked me to share her good news.
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Dear TravelText, wow, I am so happy to be hearing from our LoriCa!:) She's been amazing. Hugs to her,
Saulius
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Thanks for sharing Lori's success, TT! I know it came with a struggle, but so glad she's doing well.
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Nice to see another person doing well after five years. It is wonderful to hear.
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Hey everyone, Just wanted to say hi and wish everyone in the IBC Lounge well. Thinking of you 🤗
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Hey MommaCamps! So great to hear from you. How is treatment going? I hope you're doing well with it. Keep in touch.
Hello IBCers!! How are you all? I've been keeping busy and trying to learn how to manage lymphedema... the gift that keeps on giving. Last time I went to the LEPT at MD Anderson, she told me that most of their LE patients had been treated for IBC! I suppose that's because we get the sentence of ALND, plus the fact that MDA has an IBC dedicated clinic. Anyway, just one more "Bonus Point" to the lucky IBC participants in Cancer Roulette. (I'm in acronym overload with this paragraph.)
Looks like fall is finally on the way, so woohoo. Take care and let us know how you're doing.
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LW, sorry about the LE. I had all lymph nodes removed on the Mx side (2 out of 23 proved cancerous) but have kept LE at bay for eight years now. Mainly this is by treating scratches and bites quickly. I wonder if other lymph nodes have learned to take up the job of those removed axilla nodes. Doesn't sound very scientific, does it? Next week I'll put a link here to an interview I did with the talented BCO stalwart, Mara. Can't wait for its publication.
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Hey TT; hope you're doing well. How exciting that you will share your interview with Mara!! I'll be on the lookout for it.
Thanks; I was so hoping that I'd be one of the lucky ones and not have LE but so far my bad luck is holding (sort of like the IBC diagnosis)!! At least I got a year before being Dx with LE. I hope you never get it but I've read that the risk is lifetime so you are wise to remain vigilant. Right now mine is mild and I hope to keep it this way so we'll see how it goes. Take care.
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Tt, thank you for the heads up about the interview, it will be good to read it.
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Hi LW! Treatment is mostly done or at least the active treatment. I finished chemo, had a BMX with 13 lymph nodes removed, radiation and a full hysterectomy due to BRCA2 and needing to go into menopause. I am finally done with lots of appointments- at least for now. I'm currently just on Lynparza and Letrozole daily. My bones are hurting so I'm going to have them check my mets and hope for the best. Hopefully, I can just maintain on these meds until reconstruction. Fingers crossed.
How are you? I am so scared of lymphedema. I joined a trial for a prophylactic lymphadema bypass but unfortunately wasn't selected to get the surgery at the time of mastectomy(blind study with 50/50 chance). The good news though is because I entered the trial, I'll get extra monitoring so if they see signs of lymphedema, I may be eligible for the surgery if it starts. It may be something to look into if your LE gets worse. I'm at MSK but I believe MDA has something similar with a good plastic surgeon.
I'm going to get better at checking this site so let's keep in touch. Us IBCers need to stick together. All the best!!
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Hey again MommaCamps! Wow, you've been through a lot; now it's time to kick back and let your poor body recover. Did you have an ALND with only 13 nodes removed? Were all the nodes on one side since you had the BMX? My dissection removed 32 nodes on one side! (And not a single one had evidence of cancer... so poop.)
I had the lympho-venous bypass during my mastectomy with four good connections made in my axilla. The PS and RO were unable to predict how rads would affect the new bypass channels so the thinking is that rads "cooked" them and reduced the effectiveness of my outcome. My hand and arm were fine until a couple of months after radiation. The preemptive bypass will probably be a better solution for patients not facing radiation treatment. I'm grateful that they made the attempt, though. It was a huge disappointment to me when my ring finger and lower arm began to look a bit puffy; I'm terrified of LE but learning how to care for it. It's just a shame that after surviving BC treatment we are handed the life sentence of LE.
I was supposed to have met with another PS last week to discuss additional bypasses in my arm, but after waiting an hour and a half to see him and then being informed that the wait would be "at least" another hour and a half I decided to cancel and leave. I was quite pissed that a surgeon has so little regard for his patients. A young woman (whose appointment was an hour before mine and still waiting) said she had been there weekly for the past 3 weeks and EVERY SINGLE TIME had to wait over three hours. Maddening that some doctors have zero respect for their patients. (And this was at MD Anderson where everyone in that waiting room has cancer!) So I decided I'll just see if this is manageable on my own and with PT assistance when needed. I might go see a different PS at some point, though.
Take care and I hope you continue to do well!!
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