IBC lounge: roll call, support and just a good place to hang out
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Traveltext, believe me, I'm thinking of it, but its only a few more days to wait. pant pant pant
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amarantha, I'm thinking about your condition again. When I turned up to my surgeon in a similar situation to you, my breast surgeon said she couldn't operate and sent me to the oncologist to get chemo started. I know you had various chemos,but there may be one that will reduce all that inflammation before the necessary surgery can take place. Should you not have an appointment with an oncologist?
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Traveltext, I know, right ? How is it going to work if the inflammation is so big ? I'm like you, I had to have months of chemo before my first mastectomy. But now I think we're running out of options. I've had everything but the kitchen sink. Now I've been on Halaven for a while, a good chemo, has done wonders for everything except this breast. My oncologist and the various doctors at the regional cancer center all talked about my case with the radiologists etc. and they all decided we need to try surgery. It was my oncologist who made the appointment for me with the surgeon. In fact we still don't exactly know if surgery is feasible, but she must think there is at least a chance, based on the last PET scans and various other scans. I do hope it will turn out okay for surgery ! Will let you know on Thursday.
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OK, you and your medical team really are on the case, that's very clear. TN IBC is such a nasty subset of this nasty disease and I'm hoping your meeting with the surgeon goes well for you.
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Has anyone heard from Kicks lately?
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amarantha looking at your profile makes my heart hurt for you. I hope your meeting with the surgeon goes well and I'm sending a big hug over to you!
On another somewhat tongue-in-cheek note, after hanging around the BCO forum for a few months and reading all of the posts from women who are certain they have (undiagnosed) IBC, I now understand why no one felt the same urgency that I did when I had what I was sure was full blown symptoms of IBC on the Thursday of a long holiday weekend. I have decided to forgive everyone who thought it was okay to make me wait for an appointment (before that appointment ever came I went to urgent care because the symptoms had grown even worse in just a few days, and was immediately admitted to the hospital for 8 days).
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LoriCA. Could have been me that told you to wait, hope not! Yes, nearly all the people posting with IBC symptoms learn that it's not IBC. It took me many weeks to persuade my GP to send me for an ultrasound. I was somewhat relieved when she called to tell me I had the "best" kind of bc. Best, that was a bit insensitive I thought at the time, but since hanging out here for a few years, I reckon that was a true comment.
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Traveltxt hahaha I'm certain it wasn't you unless southern California breast clinics have started outsourcing their phone lines to Australia (although that wouldn't entirely surprise me these days). I didn't find BCO until months later.
How could your IBC be the "best" kind, did she mean because you caught it before it reached Stage IV?? Mine was growing so fast that when I was first diagnosed my doctor didn't think I would last 60 days, so I don't understand how anyone could call IBC the best kind. It was like someone flipped a switch, one minute I was perfectly fine and then all of a sudden it was as bad as it could possibly get.
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LoriCA.It was the "best" kind because I'm ER+ HR+ HER2- I can see now that she was right. Since she hadn't examined me, she didn't see the inflammation. When I saw the surgeon two weeks later, she took a quick look and sent me to the onc. So began neo-adjuvant treatment.
Have you had a mastectomy? How are you going on the Perjeta and the Herceptin?
sbelizabeth, kicks was last on BCO in December last year.
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Traveltxt, ah got it and understand that completely.
No mastectomy and probably won't be recommended unless I have a palliative need for one. The plan is systemic treatment to see if we can get it and keep it under control, but I suppose things could always change in the future depending on my response. My prognosis still isn't good even though I feel a million times better than I did 7 months ago. They are afraid that when I stop responding to one drug they won't have much time to find something that I will respond to because of how quickly it spread the first time.
I was making good progress on Taxol but we agreed to stop it two months ago after I developed a severe atypical SE all of a sudden out of the blue that got worse with each successive infusion. I haven't had a new scan since being on just the Herceptin and Perjeta, so I won't know if I'm responding to the H&P until next month. On the up side, after I got past the load dose the SEs are bearable with the worst being the really bad fatigue, but I have reason to believe that the primary tumor might be growing again and I'm trying to not even think about the possibility. I feel the best I've felt since my DX and I needed the mental break, so I'm just trying to use this time to enjoy life a bit before my next scan.
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Hey, Lori, I'm a So Cal girl too. We might get some rain tomorrow! Whoo-hoo! Happy dance!
Traveltext, it's not like Kicks to be off the boards so long.
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sbelizabeth, and snow at 5000 feet! I'm in a south OC bubble that will be lucky to see some dark clouds and a light sprinkle, the mountains always seem to prevent rain from ever reaching us. Hope the rest of SoCal gets some real rain, we could really use a few good storms before things heat up.
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Wow LoriCa, thanks for the hugs ! looking at your profile,it's unbelievable how fast yours developed. Right from nothing to stage four. That must have been one huge shock. Well at least we're in this together. Sending huge hugs back.
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amarantha thanks for the hugs back, I'll take all I can get these days! Yes, it was like someone flipped a switch for me, one minute I felt perfectly fine, had never been sick a day in my life and led a very active life, and then all of a sudden the cancer started raging through my body so fast it made my head spin. I still don't understand how it happened so quickly because I got worse by the hour. Within hours of seeing a doctor I was in the hospital with extremely low BP and sp0, had to spend a few days in Cardiology before even being transferred to Oncology because my heart decided to play games (probably stress because my cardiologist says my heart is so healthy that he doesn't need to see me as often as recommended when on Herceptin), my scans just a few days apart showed big changes, and they didn't think I would make it. My mother likes to remind me that I never was very good at finding a middle ground, I always go all in haha!! I was so sick that I didn't even understand why I was given a private room with unlimited visiting hours until much later. When they let me go home (to die was the assumption) I still needed 24/7 care for a few months (my SIL flew out to help us) and in a morphine-induced haze went about "getting my affairs in order". It still confounds me when various doctors declare individual parts of my body "very healthy", I don't understand what triggered it to be so extreme (and neither do the doctors). I know that IBC is very aggressive, but mine was super-aggressive for some reason.
It was a long hard uphill battle but I am back on my feet now and doing much better after responding well to Taxol. But that's why my MO doesn't play games if there is any sign that it's growing again, he's concerned that if it starts growing again we may not be able to stop it in time, and why I am trying to keep myself from freaking out about possibly not responding to the Herceptin/Perjeta since we've stopped the Taxol.
Good luck with the surgeon tomorrow!
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That's an amazing account of the spread of your disease Lori. I've never heard anything quite like it hanging around many IBC boards over the past four years. I'm glad your MO is constantly on the case and wish you many successful treatments into the future.
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Thanks so much Traveltxt. It is a wild story isn't it? I felt like I was in a dreamstate for the longest time because it was so surreal how fast it all happened. You can't even imagine how excited my MO was with my first follow-up scan because no one expected me to respond so well, I thought he was going to start dancing. I've learned that every day is precious and I'm very grateful.
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Oy LoriCA that is rather a terrifying story, it's unbelievable ! how did you get through it ? I am so glad to hear you are back on your feet !!! Just incredible. Wow. I'm reeling !
Well it turns out, Traveltext you were right, the inflammation has inflamed too much, now they cannot operate, and are going to try "cooling" the disease with CEF - the first chemo I had back in 2013 - and then will operate as soon as possible, as soon as the redness calms down. (But will it ? hmmm cross fingers). I don't remember how well I tolerated it last time, I think rather well, but I have my first infusion on the 11th, and I have a trip to see an opera in Bordeaux on the 14th. I hope to goodness that this will not make me so sick that I cannot take the train and sit through an opera. On the other hand, if I am going to be sick, might as well be sick on a train and at the opera ... I'm disappointed but not surprised since I could see the breast getting redder and redder. Argh.
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I'm so sorry to hear that amarantha. Hope you do well on the chemo and that it brings down the inflammation. Day 3 after chemo was always the worst for me when I was getting premeds (the steroid crash). If you're getting premeds, maybe you can schedule it for a different day so you don't ruin your opera trip? I hope it doesn't completely spoil the trip for you because it sounds like a lot of fun.
As to how I got through it, most of that I try to save for the Stage IV forum because I know that many earlier stage people find the topic frightening (rightly so!), but leave it to say that I was on morphine every 4 hours for the pain (the tumor got into my brachial nerves and it ulcerated) plus fentanyl and gabapentin, and was on an antidepressant for several months. I'm sure that the drugs made it all easier to deal with, and for a couple months my body needed a LOT of sleep so it could heal. I was at peace with everything and did what I needed to do with the help of family. It was much harder on my husband than it was on me and having the conversations with him was the toughest part.
When I see how much someone like you has gone through, and for how long, or the problems some people have with mets and everything they have to go through (multiple surgeries, etc.), I thought I had it easier to skip all of that haha! It honestly frightens me more now that I made it over the hump than when I thought I was about to die any day. It takes a lot of strength and courage to deal with it for many years (unless you're one of the fortunate symptom-less people) and you are my inspiration. I'd love to be one of those Stage IV women who live a productive happy life for many years.
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Amarantha, I'm disappointed for you that the surgery is not possible right now. I wish medical people were more aware of how quickly IBC changes from benign to nasty. At least they have a plan, and I trust that the chemo will work again. I'd keep your opera date. If you do, we want a report on both the chemo and the opera!
Lori, Stage III people are pretty realistic about this disease and I, for one, really appreciate you sharing your story, since you write so clearly and informatively. Collectively, our experiences here are a record of great value.
I have a very good Stage IV bc friend (a guy) and he takes all treatments in his stride, hardly stopping for treatment before heading off a yet another trip to a foreign destination. All we can do is our best, and thank goodness (and the researchers) that we have so many drugs to help us stay alive.
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Traveltext, knowing that most people are at least Stage III when diagnosed with IBC is why I figured it would be okay here, thank you for saying so.
I hope to be like your friend soon, that is my goal right now. I'm still battling the overwhelming fatigue, I'm sure partly because I was off my feet for 6 months and my body needs to get used to being active again. Thank goodness indeed for the newer drugs we have, especially for those of us who are HER2+ and can benefit from targeted therapy.
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HI folks, well yesterday was the first treatment of EC (I thought it would be FEC but is only two drugs epirubicin and cyclophosphamide - they loaded me up with all kinds of anti-nausea and I felt great, this morning is a bit iffier, think I'll stay in bed ! Big month coming up several opera trips planned, plus my mother is coming from California !) - I've been having weird-good pain in the affected breast, which I hope is the dying screams of little cancer molecules in terror at the big guns bitch chemo which just hit them. Please say it is !
LoriCA IBC is IBC whether stage III or stage 400 - stay with us ! Fatigue is horrible, take it one baby step at a time, right ? Out of curiosity do you have a dog ? I desperately want a dog to take me out on walks. Husband not often game for that.
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Amarantha, how did that first FEC infusion go? Feeling up for the opera?
Well you answered that quickly
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HI Traveltext, thanks so much for thinking of me ! We'll see how I feel ! I have operas to review on the 14, the 18th, the 23rd, and the 29th, each one involving travel and an overnight trip, plus my mother is coming on the 16th and I'll fetch her by train at the airport, I've never had so many trips scheduled in one month ! I can't wait to post pics to be honest, certainly there will be moments of "meeeeerrrrde" hahahah.
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Well, that's a busy opera schedule. Who are the reviews for? So good that your mom is coming for a visit.
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I write for an opera website called Olyrix.com
Its so cool ! I don't get money for it, but I get free train rides and hotels, and opera tickets. It's a real breath of fresh air, the train is so expensive otherwise, without these opportunities I'd hardly ever get out !
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Amarantha, that's one of the coolest jobs I've ever heard of. I get a free flu shot from my job.
"Dying screams of cancer molecules"! Totally cracked me up. I'm sure I had that experience too, although my oncologist said it was my surgical incision aching. But I'd read other people who'd had it too, and it makes sense.
I'm in California, so I'm sending happy vibes and lots of sunshine with your mom. SB
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Amarantha I had those weird sensations in my breast when I started chemo. Sometimes it felt almost like things were "gurgling" and other times it was sharp pain. I'm sure it was the chemo killing off those nasty cancer molecules because my primary tumor did shrink drastically and I had no surgical incision. That's a busy schedule to keep up while on chemo. Get plenty of rest when you can! Hopefully not too many merde moments.
No dog right now, though I really wish I did because we are both dog lovers. My best buddy died a few years ago (on my birthday no less) and we weren't ready for a new one for quite some time. Where I'm living now there is a terrible problem with coyotes, cats and dogs are taken from backyards regularly and people have been confronted while walking even large dogs. As much as my heart really wishes I had a dog to cuddle with and take on walks, I don't feel physically strong enough right now to have to deal with the coyote problem, and I'm still not up to committing to a regular schedule of dog walking, especially during puppy training. My husband kept talking about bringing home a puppy for me when I came home from the hospital and I begged him not to because it's too much responsibility for me right now (he's also self-employed and works long hours six days a week). We have been talking about selling this house and maybe moving to another state, someplace with a big backyard again, and then I will definitely bring home a new best friend. Although right now he wants to sell everything and hit the road in an RV so he can spend every minute making memories with me before I go. I'm a writer too, actually a photographer who was asked to write and have been doing both professionally for five years now, until my DX.
sbelizabeth do you have sunshine? I actually got some rain yesterday (happy dance!) and today is heavy May Gray. This time of year the marine layer often doesn't burn off until late afternoon. Where in California are you? I'm in coastal south Orange County.
Lori
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Amarantha, checked out the opera website and it is very comprehensive. How good is it that you do reviews. Which operas are coming up? Hope you can get through the merde moments and be sure to post pics here.
sbelizabeh, I had the aching excision experience too!
LoriCA you have a lot of flux in your life currently. How do you feel about hitting the road? What to you write about? I spent many years writing travel guide books, but don't miss the travel at all. Nowadays I just write about cancer 😀
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Lori, I'm in Ventura County, and yes, it actually tried to rain a tiny bit yesterday and Friday. Today we have May Gray as well, and looks like it'll keep it up for a while. Fine with me! California has entirely too much sunshine, in my humble opinion; we need an occasional thunderstorm or snow flurry to enhance the variety. We have coyotes here too, with pets occasionally disappearing, but it's not as severe as what you're dealing with. We have two "hybrid" rescue dogs, each about 12 lbs, litter-mates. They're both diabetic, and get insulin shots twice a day.
I went to a conference in San Diego last week and took the train, so I probably chugged past your home. I love taking the train anywhere I can--it's such a relief from the traffic. You and your hubs should look into taking the Amtrak Coast Starlight up to Washington--it sounds like a wonderful adventure!
My initial lumpectomy and axillary node dissection was on the left side, so when chemo started and everything ached I wondered if I was having a heart attack. The pain would come and go, and even back then I read about chemo attacking cancer and leading to that weird, gnawing ache.
Happy Sunday, everyone! SB
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Traveltext I had a feeling you did something along those lines hehe. Bet it was fun while it was still fun. I write about exploring remote locations in the Mojave desert. It's physically demanding work, completely off the grid for days at a time, and I'm not sure if I'll ever be able to do it again. It was a dream after leaving a successful 22-year corporate career, and somehow I managed to make it happen against all odds. Hurts like hell to think I may not be able to ever do it again, but getting back to the wild is my motivation for healing. I grew tired of all of the travel I had to do in the corporate world too, but doing it while spending time in nature is entirely different for me.
As for living full-time in an RV, my husband loves to adventure with me and he knows it would satisfy my urge to explore and give me an opportunity to continue writing, although the adventures wouldn't be quite as extreme. We wouldn't be traveling to cities or campgrounds, we would boondock and sleep under the stars as much as possible. It would make both of us happy, as long as I have comfortable living arrangements for the bad days. But I'm the practical one - even if I could figure out the logistics of how to attend treatments and get my meds while on the road, in all honestly I'm afraid of being lucky enough to outlive the money and leaving him (or both of us) destitute haha!! We are too young to collect on retirement funds just yet and we've already lost my income. Health care premiums are no small sum (not to mention co-pays, etc.), so the idea of doing odd jobs while on the road just to put food on the table and buy gas won't work. It would require a substantial hit to our savings annually. There's always the concern of what we do if my cancer suddenly advanced again, especially if I go downhill as quickly as I did the first time. And more Stage IV talk here, but the plan was to sell this house and pay cash for a smaller retirement home with no worries, whether for both of us or just him. Using the proceeds from this house to buy an RV and finance living on the road, with no income (or possibly a modest freelance income), would jeopardize his future. I'm the one who had the corporate career with the executive-level pension and solid 401k, he followed me around the country changing jobs with every move until we decided to stay here for a while and I left the corporate world. My biggest concern is making sure that he is okay financially after I'm gone, and I don't want to do anything that might jeopardize it (more than the cancer already does). His only concern right now is spending quality time with me and making me happy, and he doesn't want me to worry about what might happen to him after I'm gone.
sbelizabeth I love taking the train down to San Diego! It's awesome to ride along the ocean while avoiding the traffic, such great views. Last couple times I drove down to San Diego it took me 3+ hours for a 50-mile drive, ugh. It's become so much worse the past few years - I had a speaking engagement at 7pm on a Tuesday a few months before my DX, thought that leaving my house at 3:30 in the afternoon would give me plenty of time to grab a fast bite when I arrived, but I barely made it through the door before I had to go on stage! I never even thought of taking the train north as far as Washington, but that is a great idea. I've often wished there was a train between LA and NY so I could take it home to visit my family (I absolutely hate flying these days).
I agree we are very spoiled with the weather here, but I'm laughing because I was just trying to explain to someone that we may not see the sun for several more weeks here in "sunny California" hahaha. Unknowing tourists can be very disappointed by our beach weather this time of year. But I am very glad that it keeps the temperature down while other parts of the state are heating up to triple digits. How wonderful that you've taken in some rescue dogs!
Happy Sunday all!
Lori
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