IBC lounge: roll call, support and just a good place to hang out
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I’ve sent amarantha a message from us all.
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Hi Folks ! Thank you so much for worrying about me ! I'm fine, have just been busy running from one opera house to another writing reviews. And watching ....OUTLANDER on Netflix. Totally addicted. Now I have a bit of a respite from my opera reviewing because all of France takes time in February off for ... skiing !! I don't ski so this always seemed an absurd time for a vacation to me, just when things were getting started again after the winter doldrums. I had another round of chemo yesterday, and next one is next week, then I'm off gallivanting from city to city for reviews again. Meanwhile a new evaluation via scan will happen on the 11th of March, and a meeting with the oncologist on the 19th of March. The cancer does not seem to be evolving in the right direction under this new onslaught of chemo, but rather changing slowly on the right side, skin more and more indurated, raised, tough, and pain in the ribs. I can no longer lie on my right side. I talked about this with the pre-chemo consultation intern yesterday, whose only reaction was to prescribe more pain meds. I am always shocked by that. I want to say, "no, no, no, I do not mind the pain ! I just want you to have this information, I want to find out why it is there ...". ,And she seemed to think another month to wait before seeing the oncologist was just fine and not to worry. Bla bla bla. But anyway, basically I'm just fine, with nothing much to report. Sorry to be so boring !
I have just caught up on everyones's posts. I am sorry to see that there are scary evolvements in LoriCA, Minnie.
I loved seeing the pink square on TT's not very hairy chest.
Hang in there, everyone !
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Amarantha, how good to read your message. I'm so glad you're galavanting about the French geography and immersed in opera. In addition to reading every Outlander book published, I, too, watched the TV series. It's such a beautiful story, and with the acting, costumes, and scenery (and the occasional peek under Jamie's kilt)--well, we're not the only addicted ones!
Lori, good on you for advocating for yourself to get back on the H&P. Hopefully the targeted therapy will nail any cells that want to go rogue. Are you doing OK with all the rain there in CA? My friends in Ventura messaged yesterday that it was snowing in Malibu!
I would post an almost seven-years-after-rads photo but I bet the Mods would object. It's pretty funny, actually. The weirdly colored, stained by rads skin meets the stretch marked abdominal skin of my DIEP "breast." With a gorgeous 3-D nipple tattoo as the cherry on the piebald cupcake. That armpit doesn't sweat, but the other one sure does--a fact I discovered after thinking I was too old to smell bad, and ditching my antiperspirant.
Traveltext, it's Steve Irwin's birthday today! Crikey!
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Amarantha I'm so glad to hear that you are doing well and taking time to live life. It's inspiring to hear of all your traveling while undergoing chemo. You are one tough lady! I am sorry to hear that it seems to be progressing on Halaven. That is a long time to wait to see your oncologist when you think things are going in the wrong direction, good that you have travel and writing to take your mind off of it. I hope the time passes quickly, that your scan goes well, and that you find a chemo that works.
SB the rain hasn't impacted me much directly other than one truly horrendous drive to treatment. It did snow yesterday in places near the coast that don't typically get snow and it was funny to see all of the social media posts. It's been unusually cold and wet all winter, but we've been spoiled in past years with unusually dry and warm winters. I've decided to be happy about it - since I haven't been up to prowling around the desert this year, at least I can console myself with the fact that the weather hasn't been much good for it anyway. The coldest night I spent in a 3-season tent was 14F and it was miserable - there is no way I would put myself through that now!
You made me laugh because I have to keep reminding myself to use antiperspirant on the left side! I am wondering if the right side of my throat/neck is going to have a strange tan. Most of the rest can be covered with clothing, but I'm imagining having to explain to people why half of my neck is a different color.
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I have to say that Crikey is what I think when I read posts here. Good to have your news Amarantha, and glad that you keep yourself so distracted while negotiating the arcane ways of the French medical system. Being treated patronisingly is surprisingly common in the cancer treatment industry, but I often feel sorry for those folks having to deal with us patients day in, and day out. My chest was shaved before radiation, so what you see is regrowth. What never re-grew was any hair in that pink square or under that arm. And neither did the sweat glands recover.
SB, your description of your piebald cupcake was another Crikey moment. Lori, you don't have to explain anything, let people guess about your strange winter tan.
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Hello All
So glad to hear from aramantha... Now I'm going to binge on Outlander.
LoriCA, i have the rad scar on my neck. It was really pronounced back in 2016, now not so much Occasionally a store cashier will ask if I was burned,(oddly intrusive) as soon as I say Cancer Treatment, silence.
I'm going on my 4th year NED with Triple Negative IBC.
Remember my dark days TT.? You and meadow and purple minion really helped me through.
Waving at all, hoping for treatments that work.
Val
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Hey Val, nice to have you check in. Indeed, I remember your dark days. If something could go wrong with you, it did!
Anyway, it's really great that you have your four-year NED milestone in sight. For me, five years since IBC diagnosis.
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Val four years NED with TNBC is fantastic, congratulations. I'll never understand why people think it is acceptable to ask strangers questions about their physical appearance. Good for you for making them speechless haha!
Rads took 40 minutes today and I had that darn cold breeze blowing over me the entire time ugh!! My RO came in to take a look and FINALLY sees noticeable improvement (and not "I think maybe"). It took four whole weeks before we could see that this is doing some good.
I want to thank everyone who posts on this thread for being here. Unless you've gone through IBC you don't understand how truly miserable and frightening it can be, and I don't know what I'd do without all of you.
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Well, woo hoo, Lori. How many more rads to go?
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Not sure TT, we assumed it would be roughly six weeks depending on how things go. I need to ask my RO at my consult on Thursday. I'm guessing we'll do as many as the maximum dosage permits now that it's working, and I'm not sure what that is. The most I've seen anyone discuss is 33 plus boosts, so my guess is somewhere around 35 (no boosts)?
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Today was mixed news but mostly good - my RO believes there has finally been measurable change and we're doing a new scan tomorrow morning for comparison. She did confess that she was worried the first two weeks because there was no change at all & I told her that I was worried too (and very depressed), and it's a huge relief to have her believe that this is finally working. Hopefully tomorrow will confirm.
Down side is that my skin is suddenly so burnt that she's giving me a day off treatment tomorrow so I have a 3-day break instead of 2. Since my skin will continue burning over the next several days, she'll see me before treatment Monday to decide if I can handle more right away or need a longer break. Told her I'm okay with burning to a crisp if that's what it takes, now that it's finally working - short term pain for long term gain. I've never heard of anyone having to suspend radiation treatment because they are too burnt!
TT I asked how many sessions and as I thought she is playing it by ear. She had me scheduled for an initial 28 to start (today was #22), but now that we're finally seeing results she said that she might push the envelope on max dose as long as I'm handling it well. I kinda threw things off track because it took so many weeks before we saw any progress at all, but my labs still look great so it's not affecting my bone marrow.
On a related note, it seems that I am allergic to Calendula cream. The more I slathered it on, the worse my rash got and the steroid cream wasn't helping at all. Apparently if you are allergic to ragweed, you might have an allergic reaction to Calendula because it's the same family. I stopped using the Calendula two days ago and the rash has improved significantly already.
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Lori, Finger's crossed for tomorrow's scan.
There's no issue with missing a day's treatment. Many people have to do this when they are in your situation. I sort of like your request to the RO to just fry you regardless, but they know your skin's limits, so hopefully there's some recovery by Monday. It's amazing you've made it to 22 with the burns. You've not done this before, have you? As to the best cream, have you tried aloe vera?
Be sure to rest up on the weekend. Is it warm enough to get your chest into some dry air?
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TT she actually expects it to be worse by Monday since rads continues to damage/burn the skin for days/weeks after treatment). She wants to see exactly how bad it gets over the next few days before subjecting me to more. I picked up some Aloe Vera with lidocaine on the way home. I also have Aquafor, but that stuff is the consistency of vaseline and makes me feel sticky. Yes this is first time getting rads, at RO's recommendation we kept in the toolbox until I became chemo resistant. I think the rash was so bad that I didn't even think about how burned I was getting, except for a spot under my arm. I barely turned pink even after a week of using the bolus. it's only this week that I even started showing any real color, and then WHAM! The palpable tumor on the side of my breast and under my arm also appears to have shrunk almost by half in just the past few days.
I've been reading that while 50 gray is fairly standard for non-IBC breast cancer, with IBC they often do as much as 60-72 gray to overcome radiation resistance and it sounds like she is considering the high end as long as my skin can hold up.
Yes it has finally warmed up a bit, it was 68F today! I hope to get some fresh air before the next storm comes in this weekend. I read that you are having your hottest summer ever on record. How are you holding up?
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Actually, it's not been a hot summer where I live which is half way up the east coast of Australia. In fact, it's been a lovely, mild summer.
I can see why your RO wants toget those grays amped up for you. What a trial treatment for this disease has been for you.
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Lori, glad the rads are working! It's too bad your skin is getting so fried, though. I'll have to look back to see how many g's my treatment involved, but it was pretty high. Like you, my skin barely turned pink during the first couple weeks of treatment, and then they had me start Xeloda along with the rads. Wow--instant owie! I also missed a couple of days to let my skin take a breather.
I wound up with a fairly large area of "wet desquamation" that took months to heal. What finally did the trick was a gel-based dressing, but it was pretty miserable in the meantime. Like constant road rash. The aloe vera with lidocaine might help, at least for a bit. Topical lidocaine usually burns for a few seconds, then provides some temporary numbing. Aquaphor made me feel greasy and sticky too.
TT, hoping for a lovely, mild summer here in Colorado. They usually are! SB
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TT glad that the heat isn't affecting where you live.
SB moist desquamation was my biggest fear when my skin looked like it was about to ulcerate again. I was sure that rads would crack it open any day. We discussed those fears a lot in the beginning, so I think she is trying her best to prevent it from happening. My skin looks so much better and I'm in a better place now mentally to handle it if it does happen, but I know it's no fun at all.
They are creating a whole new treatment plan for me now, so I have to wait for a phone call so I can go through set up/simulation again before we can restart treatment.
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Dear Lori what a trial you are enduring. May your new treatment plan work, our hugs are with you.
Yes TT you remember my dark days, didn't think I'd still be here. Funny I used to hate how fast time seemed to go, now I look forward to driving fast looking occasionally in my rear view mirror to see how far back my cancer dx is getting.
Hooray for your upcoming 5 years.
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Thank you Val, I need those hugs! When I discussed this plan with my doctors the first week of January the idea was that I'd be finished by the end of February. Guess my situation is so complicated that we're already 3 weeks behind the anticipated schedule and now we're talking about doing more than the originally anticipated 6 weeks. The thought that I have another month (or more?) of daily treatment left is daunting. I started in January and won't be finished until April!! I have one really bad spot under my arm that is scabby and peeling, but the rest of my skin is holding up well. My team has been great, a few times they had me in after hours so they could spend the needed time with me, and my regular appointment is at noon so there is no one scheduled after me for another hour. I hate being the complicated patient, but they've been great about it.
Fatigue is hitting hard now, especially since I'm back on Herceptin. I am so ready for this to be over, just trying to keep my eyes on the prize.
TT five years is considered a major milestone in the cancer world - congrats on reaching it (although I know it hasn't been an easy path for you at all).
Hope everyone is enjoying a beautiful weekend. No rain here today, a rare day with sun this winter, but it's so chilly outside (by southern California standards haha!) and windy that I tried sitting outside to get some sun and fresh air but had to come in after a few minutes.
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Lori, I wish I were there with you to wrap you in a down comforter and sit with you in the California winter sun for a bit. You're such a warrior, and we are so proud of you. This has been a difficult, exhausting season in your life. Climb on the raft and we will hold you up. SB
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Yes, Lori, as good as being members of this forum is, I'd like to be of more practical help to you. I hope you have people nearby who give you lots of support, both physical and practical.
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Thank you both, I truly appreciate the emotional support. Wish you guys lived closer, would be so great if we could all get together.
I'm blessed to have a wonderful husband, he takes very good care of me and is there for me in any way that I need. He's self-employed (we both were) and has been working 6 days a week to make up for my shortfall, but we manage to make it work.
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Lori, what an ordeal! It doesn't matter that you'll be in therapy till April, as long as there's light at the end of the tunnel. I've been reading your messages and rooting for you.
I thought you'll all get a chuckle from this: I called the hospital to ask when it's my next CT appointment. They said: "You're a regular, just come whenever you want." I'll go in April, after a fun weekend with my colleagues.
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Lori, if you need help with anything relating to text, let me know. I was a freelance writer, editor, publisher for 40 years. Still do the odd job and would certainly help gratis if required.
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TT thank you so much for your very kind and generous offer, but if I'm not out exploring and photographing off the grid in remote locations there is nothing to write about, at least not until I figure out how to reinvent myself again (or if I even want to). I worked hard to rebuild my strength last summer in anticipation of this desert season, and for the second year in a row my timing couldn't be any worse. There's always next year.
Moreshoes thank you and I hope your next scan goes well.
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Lori, could you manage a drive to the poppy reserve? No need to get out and hike around if you're not up to it, but by all reports, it's going be a spectacular season for them.
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I could for fun if I wanted SB, but I'm not really into dealing with the Instagram selfie crowd and those places are absolutely mobbed right now with the "super bloom" going on. My local hillsides are covered with wildflowers, no travel required, and I am currently enjoying watching thousands of Painted Lady butterflies swarm by on their migration from Mexico.
For paid work I need to hit the backcountry.
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Cross posted in Skin Mets (Stage IV) forum but I wanted to give you guys an update:
This week both of my oncologists were very happy to see how much progress rads is making and how good my skin looks. There is no better feeling in the world than seeing a smiling oncologist after 6 months of nothing but bad news! Next week will bring me to 61.2 gray, and as long as my skin continues to hold up well (she checks my skin every few days now) we will probably do one more week to bring it to 70.2 gray. My labs haven't wavered, still rock solid. The spots where the mets were have turned white & leathery, looks funny in the midst of pink radiated skin, but I'd rather having scarring than active mets. My skin is actually less red now than it was three weeks ago, my RO said it's the difference between the vascular red of the cancer and now the gentle pink of radiated skin Tumor lump isn't gone but it has shrunk drastically and is softer, most importantly it's no longer under my arm where it was constantly irritated. Pain is gone now (other than the typical radiation stinging) and I'm finally starting to feel a bit like myself again. Time for me to get back in the gym and start fighting off the fatigue.
Hope everyone has a wonderful weekend!
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Wow, you've made my week Lori, that's such great news. Only a specialist would notice the difference between the vascular red of the cancer and the gentle pink of radiated skin! And smiling oncs are always a bonus.
Enjoy your short break from rads and best wishes!
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That's great news! And you're going to the gym too? wow! You'd be able to take one more week of rads since it's helping so much.
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Great News. Smiling oncologists a wonderful thing.
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