TE TROUBLE
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One more thing. I have 4 fills left on left TE. It seems HUGE the first day of the fill, then seems to relax a little after a day or 2. As the week progresses, it seems not so big at all. Maybe I'm just slowly getting used to the size? Or the skin has done it's thing and settles down? I get 60cc's everytime I go. I seem to have turned into this paranoid freak about the littlest things. Next fill is Friday, and I'm going to ask for a week off so we can enjoy St. Augustine without the big boob lol.
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So, ladies... I have a new surgery date of November 9th for a UMX on my 'good' boob, and a double DIEP. I meet wtih the new PS next week, so will ask if I have sufficient tummyage to make two foobs of at least a-cup or if I will need to get a couple of little implants as well... will let you know. Kind of freaking me out now that the surgery is more 'real'.
Chickadee - I've heard that some folks do reject the alloderm... I wonder if my body will tolerate the implants, if the PS thinks they are needed... I've heard that the rejection of the flap (DIEP) is not likely at all, so that gives me comfort... Hey - and I think that SpecialK and I are likely the same age (51), so you'd better watch it with those age comments girlie! (LOL)
debbiey- let us know how your PS appts went...
jbennet - So great about no drains...so the worst!...
Whitney - sorry you needed to join the club, but welcome...
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Gosh I don't post for a few days and wham, we get new ladies. debbiey and WhitneyV welcome although we all wish we hadn't had to join. I haven't been through near the things some of these ladies have but they have been a huge support through my TE issues.
DLL66-hope your still doing well, yeah on the implants, how do they feel?
Mich_M-hope your having fun on your Vegas trip. I hear ya about the rash thing, doesn't it just drive you batty?
debbiey-you have done nouthing to cause this TE trouble. You've been living your life taking care of your children. It's just like your initial BC dx-shit just happens, but do try to take it easy and give your body some rest (know thats hard with 4 children, I have 3 and find it difficult).
jblcsw10-protein, protein, protein. Before BC I wasn't very good about my intake of protein, mainly eat alot of fruits and vegs, but found that during my surgeries and chemo, I healed quicker when upping my protein intake.
fluffqueen-I keep telling my BF that I want to go to Mardi Gra when this is all done, cause I've already flashed everyone in Ky, need a new audience.
jbennett38-hope your feeling well after your surgery and yeah for no damn drains.
SpecialK-I miss tailgating at the Bucs games.
WhitneyV-it gets old to hear I know, but hang in there girl. Hope you'll find that the rest of your TE journey is a little easier having found women who have been through the same crap, definantly makes you feel less alone in all this.
chickadee-Good old Tammi, she can be a bitch. I had terrible insomnia to start with, but knee joint pain but she tood pity on me and calmed down her bitchyness. Have you tried taking anything. I couldn't do the Ambien because it game me terrible nightmares.
Momof3-we have a right to be paranoid,hell our bodies already betrayed us once with the dx of BC. I get the itching right where my nipple use to be and of course it's numb, and yes it drives me crazy to. Kinda like phantom pain.
Just_V-yeah for getting surgery date, makes the light at the end of the tunnel that we've been chasing come right up and bit you on the but.
So my rash that the PS was soooooo convinced was an infection was not, 2nd culture came back again negative and he finally stopped draining the little pockets of fluid I form, Had to admit that maybe I was just a fluid girl and that the rash was probably due to the massive stretching my skin has been doing (going from less than A cup to now being closer to a C). I was like "no shit sherlock".Anyway, exchange scheduled for Mon-can not wait, do you hear me, I CAN NOT WAIT. No nerves at all, just excited. Will be in a little more pain than just exchange, having port removed and ovaried out to but could care less. Just ready to get on with my life. Nipple grafting and tatoos to come later, but thats in office stuff.
Hope you ladies have such a great day, sorry for the long post, but had to catchup.
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Dawn, next Monday! Wow! Too exciting.... good for you!
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Yay Survivor - good news on that 2nd culture! I'm excited for you about the exchange. It's that light at the end of the tunnel that we're all searching for! Congratulations:)) I think we are on the same page about the rash - when I get a fill and am stretched to the limit it comes back. Then after about 2 days it's gone. WTH? Anyway, good job and keep us all updated once you get that wonderful exchange!
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Will do, thanks ladies.
Same thing with my rashes, always go away after a few days-would be nice to have known this before we started having them
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Ugh, lost my post. I started by commenting how chatty you all are this morning.
JustV-SpecialK is a LOT older then you
Re: itching-I have got it on the new TE in the cleavage area. Drive me NUTS. Didn't have it the first go around.
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Yay, Dawn! Glad to hear you are scheduled for exchange.
The implants feel great. Apparently I was very silly while being prepped for surgery & told the nurses to make sure they would be squishy. Squishy, they are! No fair talking to me while I am all kinds of doped up!! Glad I was entertaining, at least.
There was no evidence of any sort of infection; there was just a little more fluid in there, so it is somewhat of a mystery as to what caused the skin on my non-radiated to give out.
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Hi Everyone. I am coming to terms with having my TE removed as it seems I am not alone. I had the infected wound opening packed with some kind of seaweed packing and dressed. I need to have this done 3 x a week untill it is healed. What a bind. I do have a life. PS thinks it will be 3months before he can try another TE. The end of all this is even further away now! I struggle to get used to everything being out of my control.
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Debbiey - I started the recon path with a TE, planning on an implant... now I am heading down the path of DIEP (they take skin and tissue (no muscle) from your tummy and make boobs from it)... and I consider my TE failure as a blessing b/c I think the DIEP is a better option for me... no foreign materials for my skin to react to... just my own flesh... have you considered other options?
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Okay ladies, I'm older than all of you! (57). If I ever can figure out how and find a decent picture I'll add it to BCO....somehow I don't have pics of myself. Unfortunately, I am looking more and more my age these days...
Special K: did you ever get on the right antibiotic? hope you're well on the road to recovery from the uti.
JBennett: Yay! Glad to hear things went well, it sounds like you're back on the path.
JustV: Nov 9 will be here before you know it. I have just been researching DIEP. I am thinking it might be one of my options, I don't think another TE is going to work where the old one was removed because the skin is really damaged and scarred. I see PS in 2 weeks, and new PS the following day for 2nd opinion.
Survivor - you must be pretty excited about Monday. It's so good to see some of us moving forward. Gives us hope!!!
Debbiey: You've been through a lot, that wound treatment sounds pretty awful - do you have to go somewhere and have it done or do they send a visiting nurse to you? How do you manage all this with 4 children. I can barely do it with one still at home! And she's a teenager. It does get better, the coming to terms with the disappointment. And it is such a huge disappointment, especially after all we've been through already.
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Hi Just V I have had skin and tissue taken from my back on my LHS to reconstruct and it is fine it was only done 4 weeks ago so it is still a bit sore and swollen but my PS thinks you get a much more natural result that ages with you and if you lose or gain weight the breast changes with you. However he uses a TE to stretch the skin before doing the flap surgery. This is why I had the TE put in on the RHS. Now it has been removed the skin is s contracting so I have no other option but to have the skin expanded with a TE before my reconstrucion. I wish with hindsight that he had waited and done an immediate flap reconstuction at a later date. The PS thought doing both flap reconstructions would have been too much when I had recently finished chemo and was on herceptin so was only going to do LHS.However I persuaded him to remove my RHS and put in TE so my breasts were more even. I would of had a C cup reconstruction on LHS and a saggy double D cup on the other side which is not a good look but better than the look I have now.
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DLL66-thanks for the info, can't wait to be squisky. As an OR nurse, got to tell you intertaining patients are a huge treat. Mainly we have to do alot of hand holding and comforting for patients that are scared, so to get someone who is a hoot is really nice.
debbiey-my heart just breaks for you. Although I've been able to hang onto my TE's I know that I was so depressed when I thought for a short time that I might lose one. I am sending you all my prayers for strength and peace with this so you can move forward. Big hugs.
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Jane - this is a web video of Beth Isreal Hospital BMX and immediate DIEP - interesting - learned a lot http://www.orlive.com/chp/videos/breast-reconstruction-deep-inferior-epigastric-perforator-full-surgical-version-?GCLID=CKqhru%2DIq6YCFYbb4Aod%2D2itmg&UPDATEAPP=false. I will let you know how my surgery goes.... seems like most women are happy with the DIEP (not the TRAM which involves the ab muscle, but the DIEP), except for the tummy healing which is suppose to be a bit of a bitch...
Debbiey - did not know about the rest of your history - Beth Isreal has a LD video too... but you've already been through it, it seems.
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Oh boy...just got my surgery date for the right TE replacement....November 30th. (Big sigh) So nervous, but at the same time, just want to get this darn show on the road already!
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hi girls, my name is Bev i have just had a bilateral mastectomy with expanders, unfortunately 3 weeks after i had them removed due to infection and necrosis on left side. a week later i have what seems like fluid build up, then blood poored from the sutures................is this ever going to heal i am so fed up, if anyone has advise or has experienced this please let me know. thanks for listening Bev
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Sorry to hear that, Bev. You are on the right thread & I'm sure someone will be along soon with more experience...
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Bev - I, too, had my TE removed after only a few weeks... and I had the necrosis - but not the bleeding from the sutures... I think you need to call the PS and tell them what is going on -- the bleeding and the fluid buildup, especially on the heels of the infection. They will want to make sure that no infection still exists (the fluid may concern them although fluid build up is not uncommon).
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momof3 - just hope the Rays can hang on with just a couple of games to go!
I did have alloderm - not sure if it caused issued with that left side - my necrosis was on the lower half of the TE, so maybe...
WhitneyV - welcome but sorry you are here. I don't think I should do anything with my foob/prosthetic collection, just in case I need them again. Same with the wig and underhair - I certainly hope I never have to do chemo again, but who knows....
dll66 - hope things continue to be good for you - smart to do what you can to rest. I need to do the same, although I seem to be sleeping better these last few weeks.
All - it has been one year since I was diagnosed - I can't believe it! I celebrated by having two doctor appointments! I saw the derm to have a look at my missing fingernail - culture revealed both fungus and bacteria - lovely! They are reluctant to give me oral meds because of the stress on my liver after chemo. I will be using a medicated nail polish instead. Also, I already take Lipitor for high cholesterol which is hard on the liver, so they don't want to compound that. Then I finally saw my PCP for what was supposed to be the follow-up appt for the UTI, but it was really to get the right antibiotic - yay! Now I hope I am not allergic to it. The pharmacist said she has not had anyone have a cross-sensitivity in her 17 years of practice. I will probably be her first... My instructions are to go straight to the ER if I react. Can you say anxious?
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Special K-which antibiotic is it? I have been fine on al the onex I have had so far until the infectious disease doc put me on doxycycline when we were stepping down off the oral drugs. OMG...I took it for four days, was feeling miserable and it didn't dawn on me that it was potentially the antibiotic. Finally looked up the side effects and I had them all. He switched me up.
JustV-I watched that video when I was trying to decide what I was going to do recon wise, as DIEP was what I thought I wanted. Thought I was going to puke. Then I heard them say it is a 12 hour surgery. I had never even had a one hour surgery. That freaked me out. I also was concerned about the issue of having to utilize a different area if you would need a heart cath. so, I totally chickened out. Then after I had to have the TE's removed, I reconsidered it, but my PS told me that since I had lost 30 pounds and toned up, there wasn't enough fat there to make boobs.
Go figure...the first time in ten years that I change my eating habits and exercise, I can't have the tummy tuck.
My exchange is in 23 days. If you subtract the 10 days I will be in Hilton Head having fun and not thinking about BC, it will only be two weeks!LOL.
I have mentioned on a couple other threads how much trouble I have been having with the whole "Moving on" concept. It is not going well. So...I am going to start a discussion thread called Living in the Moment....mental health therapy by and for breast cancer survivors. I have read such nice , uplifting things on varioius threads, especially some of the signature quotes, that I am going to try and get us to post it as a place to go for a little pick me up.
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Hi Bev that is what is happening to my left hand side (cant bring myself to call it a breast as it is just skin). I had my TE put in 27th Aug and removed due to infection on 22nd September about a week ago. So we are probably in about the same place. My wound started to leak 2 days later when the drain was removed. I have s small hole in the wound where the wound has broken down and where the fluid is draining from. It is about the size of a finger nail. I actually dont think that is small but it is always refered to as small. My PS thinks that the leakage of blood and fluid is normal. He plans to pack my wound 3 x a week until it heals, about 4 weeks he thinks. I am on high dose antibiotics too. I will let you know how things progress. Keep me posted on how you get on. I just want things to heal as quickly as possible so I can get back on the reconstruction treadmill. I will be having a back flap reconstruction when eventually the skin has been expanded.
Speak soon
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fluff - I am allergic to penicillin and this is the cross reactivity they are afraid of. I actually picked up the medicine last night (Cefpodoxime) but didn't want to take it until today when I will be awake. I am a little nervous. During my BMX they gave me Levaquin. OMG - huge welting and weeping itchy rash all over. I was the color of an eggplant, BS had to pull my drains early and give me steroids. PS was terrified because they inhibit healing, but there was no other choice. I had an enormous amount of fluid under my skin all over my body, you could actually push it around. Of course, these are the two drugs that are perfect for this strain of bacteria!
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OMG the awful rotten packing dropped out of my wound then dropped out out my dressing. I noticed my PJ top was damp in the morning. When I opened it to check what was going on there it was sliding down my tummy like a rotten scallop. It was awful the breast nurse is not at work today so have stuck on another opsite dressing and hopefully everything will be alright until tomorrow. I know this is gross but has it happened to anyone else and is leaving it 24 hours OK.
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debbiey...I would not take any chances. Could someone else at the doc's office help you? That's crazy that they would make you wait 24 hours. I am so sorry for what you're having to deal with. Good luck and keep us posted.
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SpecialK - During my pre-op appointment (for BMX & TEs next week) with PS yesterday, he reviewed my allergies, and I told him I'm allergic to Ampicillin. So he was pondering his preferred antibiotics (at least for post-op) and decided on -- oh no -- Levaquin. You have me scared now. When I picked up the prescription, it came with 7+ pages of explanation -- have never seen this with my other prescriptions, and haven't read it yet. PS had wanted to choose Keflex, but it's in the 'cillin' family. The other two antibiotics on his list are Cipro and Bactrim DS. I don't know why he skipped those, but I think they are not as wide-sprectrum, more often given for UTIs (for which I had them both before). Do you recall how quickly the welting and rash appeared? I haven't been given Ampicillin for over 30 years and just had an itchy rash all over from it (but allergies can ramp to the next level if you get them again). Oh dear -- how can there be so few options?0
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Welcome to the new ladies. You're not alone!
Momof3: Your TE replacement surgery is one day before mine! That makes us surgery twins. ;-)
SpecialK: Crossing fingers you have no new reactions to Rx!
Fluffqueen, will check out that new thread! Sounds perfect.
Debbiey: Agree, get in to see your doc today so they can repack you. Ask them to place a large gauze pad over it and then *paper* tape to hold the dressing in place so it doesn't fall out again.
AnnAlive: I was on Levaquan for 3 weeks, towards the end had tummy trouble but otherwise tolerated it well. Good luck!
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Wow. Tampa Bay seems to be a real popular city for this forum. Ann Alive - I hope all goes well for you next week and you don't end up having a reaction to the antibiotics! Or the TE's! I had Keflex post op both times. I am sure glad I am not allergic to antibiotics!
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Rennasus and Chickadee - Thanks for your well wishes on the upcoming post-op Levaquin. I have since read on some other threads that it's in the same family as Cipro, which I have taken before, so maybe I'm fine with Levaquin.
Meanwhile, a new problem that could threaten getting TE's at my BMX next week. I have an oozing toenail. My nails are all discolored from chemo, but this left big toe is worse, possibly fungal, with nail lifting a bit. I called the PS office and they got me a podiatrist appointment Friday. The nurse did scare me a little by saying that because TEs are foreign objects, I may not get them if I have an infection. The podiatrist will get back to the PS after seeing me. Any wisdom on this? Here I am asking in the TE Trouble thread, and I don't have the TEs yet!
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Rennasus...I have a feeling we will be up late night talking our "pain meds" talk after our surgeries - lol. Glad to have a compadre, thanks for letting me know. I've had headaches for the past few days - I thought it was from sleeping wrong because my neck feels funky like I just need to pop it, but I bet it's stress/anxiety over all of this stuff. Think I'll get a pedi tomorrow to try to relax a bit.
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AnnAlive - I had trouble with several things post-op so it is difficult to pinpoint the start of the antibiotic problems, but definitely before I left the hospital. I stayed two nights. I am also pretty allergic to tape and of course they put that velcro-like fuzzy tape over the incisions and the drains. Bad idea. I am allergic to detergent also. As I am typing this I am thinking I should be living in a bubble. So anyway, they wash the hospital sheets in some sort of nuclear detergent so I had a rash on my hiney and backs of legs, rash where my tape went, and began the Levaquin reaction on the torso, which then moved out to arms and legs. Eventually it was up my neck to my face. The BMX was a breeze compared to all the other stuff!! I have a weird fingernail from chemo too. I just had to have it cut off completely. They cultured it and it was fungal and bacterial. The fungal infection takes a long time to clear and the culture takes a long time to grow. Not in time for your surgery. Maybe they can start your antibiotic early? Where are you having your surgery?
I took the new UTI antibiotic this morning. I was too scared to take it last night for fear I would have a reaction while sleeping. So far, so good, but it takes about 48 hours for it to work. I had to go to my research study today from 10-12. I was squirming around on my hard folding chair. I was supposed to be meditating and breathing but I was faking it and squirming.
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