Jan 29, 2019 02:28AM LoriCA wrote:
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.