IBC lounge: roll call, support and just a good place to hang out
Comments
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Leslie no worries about that haha, my story has been crazy from the start and even I have a hard time keeping up with it some days (air hugs back). Yes, the IBC resolved and I had all new unblemished skin after I finished chemo last year but it took close to 6 months to get there. I continued on Herceptin and Perjeta for my liver and skeletal mets which only had a partial response to chemo. A couple months later I noticed skin changes again, an MRI didn't show anything concerning and my MO thought there was no way it could be the IBC coming back because I was obviously doing so well on targeted therapy (and it didn't "look" like cancer hah!), With the clean MRI he wasn't worried, thought it might be part of the healing or possibly permanent skin damage, so I tried to stop worrying about it. When I noticed a lump on the side of my breast and under my arm, I got a PET/CT (plus a new biopsy or five!) that confirmed it was in breast, chest wall and lymph nodes , but all of my mets were completely resolved. Who knew I'd be that one strange case where my mets had an amazing response to targeted treatment but my primary returned! Once that lump formed it grew really fast again and my skin deteriorated quickly, but thankfully not as fast as it did the first time when it landed me in the hospital within days and they weren't sure if I'd pull through. If it wasn't for this darned IBC I would actually be NED right now, something my MO said I'd likely never be able to achieve because my mets were so extensive. That's part of why this is so frustrating.
My RO gave me a bunch of samples of different lotions, including the expensive one. She said that I'll probably want to use the one with lidocaine, Miaderm-L, which is the most expensive of all hahaha! But if I can convince her to use the Mepitel film I won't need lotion.
SB - ugh I know how bad it is to have a wound that won't heal. When mine ulcerated the first time, my wound specialist had me using silver rope dressing which is pretty awful to deal with because it absorbs all of the nastiness and then you have to pluck it out of the wound. As if just looking at it isn't traumatizing enough. I never ever want to go through that again! I'll have to remember about that hydrogel dressing, but I hope I never need something like that again.
I'm not really brave, I just have no choice. We can't keep playing around with different chemos hoping to find one that works, it takes too long and I've already lost too much time with the last round of chemo that didn't work. I need something to stop it now and both my MO and my RO think this is the right way to go.
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Lori, I’m so impressed with your medical team. I’m also impressed by your determination to find appropriate treatments which will work on your most unusual diagnosis. IBC is the stubborn bugger with you. You get so close to solving mets issues as they arise but IBC drags you back. Did you call about the Mepitel?
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Lori, in my book, you are absolutely courageous! Made me thought of Oprah’s quote, “The true meaning of courage is to be afraid, and then, with your knees knocking and your heart racing, to step out anyway-even when that step makes sense to nobody but you...”. I hope you do get the Mepitel, but still the radiation area should be moisturized as much as possible. I slathered the lotion on twice a day as told, it did delay the nasty burn set in. You might want to ask your support group or nurses to see whether there are donated leftover tubes around. I lucked out with a friend eagerly wanted to get rid of the leftovers.
On the skin change issue, my skin didn’t change color until the radiation burn, ha. If it wasn’t the first biopsy concluded IBC had invaded the skin, no one could tell from just looking at it. My IBC had invisible cloak. That resulted a different problem, any slight skin change lasted over a week or 2, my MO wanted me to get the biopsy done stat, so I had 7 skin biopsy in the first 2 years, smiley (I invision where the eyes should be from the scars) decorated flat chest.0 -
Leslie - IBC brings the biopsy fun doesn't it? I've had 8 done already in just over a year. My RO gave me another stack of samples of the creams she wants me to use, so I have enough to keep me going for a while.
TT I did talk to her about the Mepitel film. She hadn't heard of it being used prophylactically and didn't seem very interested. Said she only wants me to use the creams she tells me to use and promised to keep very close watch on the condition of my skin, especially since there are two spots that are concerning. I don't understand why it's not used more often in the US, I haven't found any conflicting studies, I don't find that doctors are open to suggestions unless they come from another doctor. I can sort of understand the mindset, but I'm interested in why the Mepitel film is not used more often here when it sounds so promising from the study and real-life testimonies here (I'm like a 3-year-old constantly asking "why" haha).. I brought her a copy of the abstract I found, and another forum member sent me the entire study but it was 102 pages. I can only hope that maybe I spurred some interest.
The IBC spread a bit more before I could even start the first treatment. The radiation zone now includes part of my left breast, all the way around to my back on the right side, and includes the supraclavicular node in my neck. That's a lot of skin! She noticed a drastic increase in heat in my right breast after only two sessions, which would be early for a reaction to the radiation and could just be another IBC symptom. They are crazy busy right now, so in order to get started on treatment right away I had to wait on standby the first day for a call telling me to come in, I had one after-hours appointment so far, and I've agreed to be flexible with appointment times for the next few weeks because my time slot will change every day or so. Small price to pay for getting it done now, and thankfully I'm in a position where I can be flexible with my time.
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Lori, Glad that the rads have started and you're lucky you can be flexible with your times. New things always worry medicos, but good on you for pushing the case for Mepitel. I'm sure she's given you appropriate lotions, so be sure to take good care of your skin. Go for it!
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Lori, your RO sounds terrific! Even see you after hours;-) I do see Mepitel on Amazon, maybe because it’s over the counter stuff so the RO wasn’t aware. Doctors usually don’t hear about it until companies do major marketing campaigns. Good for you to have brought it to her attention. Hang in there, Lori, drink a lot of water... rooting for you!0
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Plan changed again today to include a larger area below my breast. I'm not even a full week into this and the area has been enlarged twice. If this beast doesn't stop spreading soon I fear we may soon have to fry my entire body haha!
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Oh Lori! I really like your attitude about the whole thing though I am so sorry the area has enlarged!
That’s what seems to be going on my left breast. I finally got a Dr to prescribe me the silver cream which she said might not work, I told her I’m willing to try anything! The wound has opened up the whole breast and spreading on the shoulder and under the breast as well. I had just weaned myself off the Percocet from the neck pain and now back at it again because the wound is now giving me pain. Is this open wound going to just stay open up or it will eventually dry up? I don’t see any new skin and it’s just very scary to look at!
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Minnie when mine fungated the first time the only thing that healed it was chemo. I don't see any chemo listed in your treatment? IBC needs aggressive treatment with chemo (until it becomes resistant like mine). The open wound is the cancer literally destroying your body, until you kill the cancer the wound will keep spreading as the cancer continues to grow, and if it's IBC it can spread very fast. That is why IBC can be fatal within months.The silver rope my wound specialist used was to absorb the nastiness and the cream was to keep it from becoming infected or help heal any infection that results from the dead cells, but it doesn't kill the cancer.
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Ahhh, I was trying to update my treatment and I guess it didn’t work! I was on Keytruda and upon learning this is an aggressive cancer, my MO switched me to Abraxane because Taxol has worked great on my mets before. I just had my second infusion this Friday. I am on every 3 weeks cycle. MO said we’ll know
After maybe 3 infusions to see if this one works. In the meantime I have a second opinion scheduled at City of Hope as well for peace of mind since the waiting game is driving me nuts. Thanks Lori for always replying despite dealing with your own issues. I’m so grateful for you and everyone here! 💕0 -
This forum doesn't make it easy to update treatments. After adding it to your Profile, it defaults to private even though you made everything else public, and you have to go into Settings and make that specific treatment public before it will show. Would be much easier if it could all be done in the same place, even more ridiculous that one is on the top menu and the other on the side menu.
City of Hope is a good place to go for a second opinion. I hope it goes well for you. We are fortunate to have many top notch cancer facilities here in southern California.
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Hi lori, Yeah all I needed to do was make it public. I still don’t know how to do the dates of when I took each chemo although I do need to see my records fir those. But I do see the chemos showing now.
City of hope is great but expensive so I can only afford their second opinion. My friend goes there for treatment and has 2 insurance coverage both PPOs just to go there. I can never afford that.
Abraxane is now giving me some piercing pain in my back as well on top of the wound pain so I’m Percocet dependent and pretty much asleep most of the day. I hate it.
I finally also filed short term disability at work since I can’t give them any time frame of when I can work. With the open wound,left arm lymphedema, pleural effusion and chemo SEs I don’t see I can go back anytime soon...I do miss working though or just maybe being useful/active. I feel very helpless and useless right now and it’s depressing...
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MoreShoes, I trust your lung tumor is still stable.
Amarantha, Are you off the codeine? How's the pain?
Minnie, finger's crossed for good results after your next Abraxane infusion, but sorry about the pain. How crap is it that the drugs we take are so vicious. Sorry that you're going to be off work for a while and I hope you can find a distraction at home to take your mind off treatment.
Lori, How's the frying going? They have such a large area to treat, what a nightmare it must be. Can you keep the burns under control?
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All good so far TT, but I've just had #5 today and I expect I will start to really feel it next week. Just some feelings of tightness right now. The only area that feels very irritated so far is under my arm, which I expected. If I only could fashion some type of brace to hold my arm out to the side hahaha!!The fatigue is rough already, but I went into this already fighting major fatigue from the last round of chemo, plus when the cancer is actively growing it is such a drain on the body. Hopefully I'll start to see some positive results by next week.
I get so worried about Amarantha when she hasn't posted in a while. I think her last update was that the mets had spread to her lungs. Hopefully she'll let us know how she is doing. She's been going through so much lately.
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Lori, such a brace exists, for patients with shoulder injuries or surgery--although it might be more troublesome and irritating than it's worth. Would a simple sling be of any comfort? It would keep your arm from swinging around and rubbing against the skin under there.
I'm worried for Amarantha too. I hope she checks in soon.
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SB I'm sure that even a sling would be more trouble than it's worth. I hate being limited in movement so it would just add to my crankiness.
Aquafor leaves my skin feeling tacky and increases the friction which increases the pain, but the Calendula cream and miaderm absorb well and don't increase friction. So I can slather the cheaper stuff on the rest of my body but definitely need to use one of the more expensive products under my arm.
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#7 and consult with RO today. She said that things don't seem to be improving yet but it doesn't seem "significantly" worse. Significantly was her word, which made me believe that she thinks it is somewhat worse haha. It's hard for me to tell because I don't know what radiated skin looks like and I'm getting red now. She asked me about my experiences with chemo again which worries me that she might be thinking that rads won't work or be enough. She acknowledged that IBC can be prone to radiation resistance.
She told me to hang in there and give it another week to see how things go, so I'm trying to stay positive.
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This was me near the end of treatment. Posted in solidarity with you Lori and always have you in my mind.
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TT you made me smile! Thanks I needed that. Did you get a permanent square-shaped tan, or did it eventually fade? I wish my skin looked half that good but it was already pretty trashed when I started and more than just redness, it looked close to breaking open. The new redness I am seeing now is on my other breast, my abdomen below my breast, my armpit, but surprisingly not so much on my upper chest and throat yet (maybe because that area gets sun year round), and I am seeing some textural changes - oval shaped "bumps" but they aren't blisters. I also have a large purple spot on the top of my breast with a mess of broken capillaries branching out, damage from the first time that got worse this second time. Since I started rads the purple has gotten much darker and the broken capillaries are now branching over to my left upper chest.
Please forgive me for not sharing a photo of mine hahahaha!!!!
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No, all I’ve got to show from the rads is four tiny tatt dots and a hairless square where the beams were directed. Since hair follicles never return after radiation, I have a hairless left chest. This and the scar freaked my grandkids out when they were young, but they’re fine now.
If your treatment side effects become too great, you can ask to stop the process, but the longer you can stand it the more beneficial it will be. Yep, hold the pics, we all have pretty good imaginations!
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Oh wow, I never even thought about how the hair issue would affect a man! I hear that all the cool guys wax their chests for the hairless look these days.
I asked my RO if she could give my left arm pit a couple zaps too so I wouldn't have to shave either side any more. I don't think she appreciated my attempt at humor.
I don't intend to stop unless my skin breaks open, and I'll let my RO decide if she wants to proceed at that point. I've been dealing with worsening pain since October. My tolerance is fairly high and I have drugs for the times I don't feel like dealing with it, so a little extra discomfort is a minor issue. For the most part I've just been laying low and keeping to myself.
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We're not talking about a cool guy here, more like a guy that's too lazy to often shave his face, let alone his chest! Oh, and get your underarm radiated and you won't need to use deodorant, since you won't sweat any more.
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TT any guy who can be as open and honest about what you've gone through is a cool guy in my book!
No sweating is another bonus, and now I really want a few zaps on my left side! I'm in hysterics thinking about myself shaving and using deodorant on only one side...or worse, forgetting to do the left side because I don't need to do the right side.
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I'm so scared too. I got mastectomy and PCR for Her2+ and ER/PR- last year. And now My breast looks like IBC. CA153 shows 38. I didn't do Pet CT & other test yet. But I'm so worried and can't not sleep. My daughter is just 1.5 years old. I'm waiting for the test arrangement by the doctor's office. Every minue tortures me.
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Welcome casax. Best not to worry too much, since most people posting here find they don’t fave IBC. In any case, you could let your doctor know how important it is for you to have a test (likely a biopsy). Then let us know the results and we’ll have lots of advice.
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So...they're not happy with the response (or lack of) so far, and today they added a bolus to increase the reaction. Of course it has to be adjusted and re-taped every time they change angles, so my treatment takes much longer now. They'll continue to use the bolus until they see the reaction they want. And here I was all happy with how well my skin has been holding up haha!
Minnie I hope that Taxol is going well for you. Hope everyone else is doing well!
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Oh, I remember the bolus. The idea is to keep the radiation nearer to the surface of the skin. That's logical for your situation Lori. Hang in there, you're such a trooper.
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#17 today and RO was happy to finally note some progress. My skin is starting to clear up, but the lump isn't shrinking yet. At least things are finally moving in the right direction. I was starting to lose hope. My MO also agreed to let me go back on Herceptin & Perjeta as long as I promise to watch out for any signs of problems with my heart like shortness of breath. H&P was doing a great job with my liver and bone mets so I'm very happy to be back on it.
The bolus gave me a wicked rash after a few days over most of the affected area front and back. Thought I would go out of my mind from the itching. RO prescribed a very strong steroid cream earlier this week that seems to be calming it.
How is everyone else doing? Still no word from Amarantha?
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Hey Lori, sounds like things are going (more or less) to plan. There's no easy way through rads, but the steroid cream must be a relief. How can you monitor your heart now that you are back on the Herceptin & Perjeta? Likely, not unless you take observations, so keep a diary listing how you feel heart-wise during the day. Your doctors will will recognise an issue if there's a pattern.
I'm hoping too, that Amarantha will report in soon.
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TT one is supposed to have an echocardiogram every 3 months to monitor the LVEF (left ventricle ejection fraction) when on Herceptin because it is cardiotoxic, but my heart was in such good shape that my cardiologist said he only needed to see me every 6 months. He ran some numbers and said I have only a 1.8% chance of having any problems. I was next due when all these problems got worse, so I was off the H&P while going through new scans and biopsies etc. and didn't worry about it. Shortness of breath would be the obvious warning sign and I haven't had any concerns. Then I was back on H&P for two doses (with chemo), but then right off it again in December so again I didn't worry about it. Now since part of my left breast is also being radiated (in addition to the IBC irritation), the last thing I want is that darn wand pressing hard against my skin haha! Once I'm finished with rads and my skin heals, I really should make an appointment for a new echo. My MO isn't concerned about getting an echo, just the combined effect with the rads even though my heart isn't in the area being radiated and my RO said she isn't concerned. My MO is just being cautious I suppose, but he understood my concern about being off the targeted therapy for so long. It would really suck to get the IBC under control again only to find out that my mets are out of control again!
I think we may need to try sending Amarantha a PM, I'm so worried about her.
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