TE TROUBLE
Comments
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dll66 - Oh man! So sorry this is happening. Quite unexpected is right! Will you have to do a TE again? How are you doing emotionally?
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DLL66 -- I'm so sorry to hear you've come this far to then have this happen. I like your positive attitude and you should try again. You will feel better knowing your less likely to get an infection and then have to suffer through that.
Ann -- we're so focused on our bad tumor side that we tend to ignore the prophie side. I'm sorry I have no experience with contracture. How is your IV fluid infusion going at home??
My PS mentioned if I get through the next few weeks without an infection he wants me on IV antibiotices the three days before surgery and I'm to stay on oral until then. We know these little buggies can rear their heads without warning.
Momof3 - hang in there. You'll make it.
All, when I have a particular question that seems a bit complex I go to google and often it leads me straight to someone who has had the experience...often this board....but others too. Worth a try.
Hugs,
Kat
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My PS is a really good person. He called me at home (again) to check on me. I told him I had a big bottle of Scotch in the living room & he said that was a good idea. LOL. Emotionally, this is pretty rough but I will get through it. Not sure yet about having to have a TE again. Guess I will find out tomorrow...
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dll66 - will be thinking of you, please let us know when you know more.
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DLL66 - Huge bummer. I am so sorry you are still going through all this. I have been thinking a lot lately about this reconstruction "business". I would never have imagined it would turn out to be so difficult. I know we all would just like to get on with life post cancer...I know it will happen but it seems to be moving like molasses for many of us.
I admire all of you on this board for your courage and persistence. Honestly I have been reading the threads on "no reconstruction" more and more and wondering if that is what I should do. Still on the fence and glad I have until May to make up my mind.
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jblcsw10 - do you still have your Dec. meeting with PS #1? Also, a lot of merit in stepping away from the immediate situation, living life, and having time to decide what you really want.
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Yes - I am seeing him in 2 weeks and plan on keeping that meeting. I want to know what he thinks about my options...
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Renn, how are you? Can't stop thinking about you, hoping all is well and that you're resting comfortably. I'm up and about (but not overdoing it). Company keeps dropping in so I can't get my naps, but I'm kicking out the next round of visitors by 12:30 so I can get a good nap in before my little tornados come in. The boys all have tournaments this weekend in Clearwater and St. Pete, so I will have some good time to myself.
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DLL66: Oh I know tha "spot" and I'm sorry to hear u will lose the TE. Good luck today.
Momof3: How are you feeling today?
I came home yesterday afternoon, and like Momof3 also said, am in more pain than expected. This hurts! Thank goodness I have te use of my left arm. PS got rid of a lot of scar tissue and filled me to 200ccs (more than I thought). Altho it sure doesn't look like I have that much on that side. I am back in my compression vest and have 1 drain which is outputting much more than when I had the TE out. I also have a fever so am resting. Wasn't thrilled with my anesthesiologist; he gave me too much sedationdespite my talking to him prior. I never actually got sick, but I did not feel good. Next time I may lie about my weight!
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Momof3: Sounds like you have improved quickly! That is great. Dd you run a fever too?
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Hi Renn, no fever. My PS said to get up and get moving and to drink lots and lots of fluids. So I have to pee every 5 minutes! I threw up in the bushes outside the hospital because I was still so queezy from the anesthesia. I just wanted out of there! I'm not in any kind of compression vest, but am wrapped up like a mummy, very thick bandages. Also have a fanny pack with a pain pump in it. That should come out on Monday, along with one of the drains that isn't putting out much fluid. The other drain is putting out quite a bit so I'm sure it will be with us for another week or more. Keep us posted, I was up like 4 times last night taking pain meds. So far so good. Fingers crossed for all of us!
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Katarina - I'm still doing IV antibiotics at home, and that's doable, but I'm getting more side effects now, such as nausea. I had to dig out my leftover Zofran from chemo. I'll be done with this Wed or Thurs, but nobody was sure when the 2 weeks started, so I will press the issue (that the home care nurse find out from the doctor) if they still don't know by Monday. The nurse had to change my needle and dressing on Wed, and it has been very uncomfortable since then, even if I try to adjust the Tegaderm dressing (the kind with the clear plastic window), which is way too large. I'll see if the chemo nurse will change it when I go in for Herceptin on Monday and also try to use a less high-profile Huber needle that sticks out too much. It's different living with a needle that is kept in the port for 2 weeks!
SpecialK - Great advice to lie down for a week. :-) I anticipate by my PS appointment next Thurs that the drain will be ready to come out. But I still suspect the CC (and I wonder if he did too, but didn't say anything yet). If it stays like this, I will bring it up again. Unfortunately, the fix is surgery, isn't it? Yikes. If that's what it is, I so wish it had happened before the other TE was replaced last week, and could have been handled then if needed. It just started this week, and there was no fill to this side to make it more sensitive. I wonder if this could change when antibiotics are done. I have no idea if they could cause this symptom.
DLL66 - Did you have to have the TE replaced because of the contracture or is there some way to resolve it without surgery? I wonder what Singulair does for it. So sad to hear about your recon problems. Did you have rads before or after the implant was placed? I will have rads between TEs and exchange, but first have to get healthy TEs, or PS will give up on recon for now.
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annalive - I did notice that when I had the new left TE put back in last July my right one that had become pretty comfortable (for a TE!) felt unusually tight. I wonder if the displacement from your new TE, and pulling of the skin over both now, is making it ride up a little. It took a while for my left onet to feel somewhat normal again, once it was being filled to match the right one.
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momof3: I had a pain pump after BMX and it was great. I should have asked for one this time. Oh well. My DH says I ran a fever after BMX too, so he doesn't think this is unusual. (He is a pharmacist.) I am tired but have trouble sleeping. I hate sleeping on the wedge pillow. Are you in a recliner or using pillows?
Ann, you sure are a trooper! Pat yourself on the back, girlfriend, you have been through a lot.
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Rennasus- I just had BMX on Wedmesday and have tried the bed full of pillow and wedge and it was so hard to get comfortable. It was also rough getting in and out of bed. So now I have a recliner that we borrowed and it is much better than the bed. Hope this helps.
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DLL66 - Did you have to have the TE replaced because of the contracture or is there some way to resolve it without surgery? I wonder what Singulair does for it. So sad to hear about your recon problems. Did you have rads before or after the implant was placed? I will have rads between TEs and exchange, but first have to get healthy TEs, or PS will give up on recon for now.
I had delayed reconstruction. I did neoajuvant chemo, then a BMX, then rads. I had a lat flap on my rads side in July & TEs placed at that time. The skin on my non-rads side failed, but I was almost expanded enough, so I had my exchange for implants in September & had a lat flap on the non-rads side. In early November I had a spot on the rads side that opened up & exposed the implant. At that time, there was a lot of scar tissue removed. Singulair is used off-label to prevent contracture. I would have stayed on it for 6 months. I read up on it, & it can help resolve early stage contracture. My BMX scar runs all the way across my chest due to where the lump was located & that has added to my healing issues. There was still inflammation where my sternum was radiated as well.
In 6-8 weeks, we'll give it another shot with an adjustable saline implant as a TE. If I like the way it looks/feels when it is up to the size of my other implant, he can just take the port out & leave it in. Otherwise he can swap it for a silicone implant.
Glad to hear you are doing okay, Rennasus. Hope the pain subsides soon!
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jenny8675309 (LOL on the number! Singing it in my head now!) I may try to sleep in the recliner downstairs tonight. This pillow swituation is for the birds! Good luck in your healing from BMX. It is only up from here!
DLL: Thanks and sending you a pat on the back as well...you have been through a lot too! I don't know what Singulair is...what's in it?
I am trying hard to keep my posture straight but my body wants to bend over to protect my chest. I really can't believe I feel like ad another MX. Blech! Pain is better this afternoon, have only had tylenol today. Back on the vicodin tonight though.
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Renn, I chill in the recliner during the day, and at night use quite a few pillows propped up. I can't believe you are only using Tylenol today, you're a tough cookie. I already called the PS and asked for more pain pills because at this rate I will run out over the weekend. My appt with her is Monday at 10:45. She said I could take ibuprofen, so I just took some and am going to try weaning off the 2 pain meds every 4-6 hours. Maybe I'll take it down to 1 and alternate ibuprofen. She also gave me Valium to ease the muscle spasms. So I've been in lala land for the past 2 days! Hope that fever goes down. Drink lots of extra fluids and walk around. Talk soon!
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All - you can take Tylenol and Advil simultaneously - they work differently but together can be better at easing pain. Just make sure you eat something, and also if you take it with a caffeinated beverage pain relief will start faster.
Singulair is an asthma drug - apparently it has an off-label use in preventing CC? Who knew!
There is a plumber commercial here in Tampa and their phone number is 867-5309 - their commercial is a takeoff on the song - I have always wondered if they are paying whoever holds the rights to that song!
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Hi All...still sending healing thoughts to all that need it....
Saw my BS first (6 month check up) and she felt me up pretty good. She didn't seem to think I needed fat grafting. Then said she'd see me in a year. SpecialK-to answer your question...she wants to see me once a year now to check me for lumps.
Next apt was the PS. He liked the way things looked and wants to do fat grafting at nipple surgery (early march). Says it will help with the divits I have noticed on the underside. Also said I can do it with a twilight anestesia instead of general. Said I should be healed enough to wear any kind of bra I wanted. VS here I come!!
So I think...think....I am doctor free until february! Oh how I hope I am doctor free till february.
In the mean time I got a phone call from my DD oral surgeon. She is 7 and needs to have 4 baby teeth pulled and expanders put in her tinie tiny mouth. Well BCBS denied our request to do it under general anestesia so we have to go with plan B. The oral wanted to do general to avoid her freaking out. Then I get home from all this and my DS (9) had already been up to the office twice with an upset stomach.
So glad the day is almost over....
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chick - there is always something, right? Sorry about the kiddos! Can they do nitrous oxide for your daughter? My kids had it - my 21 year-old DD had it for wisdom teeth, slong with some narcotics. She doesn't remember too much about the whole thing!
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SpecialK- PlanB is some drinkable concoction that will make her very loopy plus nitrous oxide. He jsut wanted to try the general so that she wouldn't be able to grab at him. I was joking with a friend that BCBS probably saw the last name and said nope, I'd cost them too much money already!
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Chick - she will probably be out of it with that combo - my DD didn't move a muscle. They let me come in with her - I needed some nitrous by the time they were done! She had all four wisdom teeth pulled at the same time. It was a little gruesome! You may be right about the insurance, that is funny - I am so glad that ours is through the military, it has turned out to be one of the best benefits for those years of active duty service - I am eternally grateful!
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Mom and Renn - glad to hear that all went well with your surgeries and that your recovery is going well. Take it easy…don't rush things, and yes the night sleeps aren't great for awhile so rest as much as you can during the day.
DLL - I'm so sorry to hear your news and hope your next attempt is uneventful.
Chick - good that you're Dr free for a few months. Re BS follow up appts, I'm in Canada and don't know if this is standard, but except for a couple of post surgical visits, I don't ever meet with the BS again after surgery. Hope your DD's dental surgery goes well.
Hello to Ann, Survivor, SpecialK, Jane and everyone else. Hope you are doing well. Jenn - hope you're BMX recovery goes well and that you get some sleep:)
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SpecialK-I was put out for my wisdom. These are the eye-teeth and should come out fairly easy.
Mich-M- I think my BS is now acting kind of like a general doctor. Once a year to make sure I don't have any new lumps/swollen nodes.
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chick - your DD's tooth deal reminded me of taking my DD when she was little to the dentist (pediatric) to have one of her front teeth pulled because it was kind of dangling but wouldn't come out. Right when we got there the power went out and the exam room was dark so the dentist put a regular chair over by the window, wheeled her chair up behind it, put my DD in the front chair and leaned it back and used some dental forceps to yank that tooth out - just like in the pioneer days!
Mich_M - Hi! How are things in Canada tonight? Am I an honorary Canadian if my Mom grew up there? I have a bunch of cousins in Toronto area.
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DLL: I had a thinning, very blue area that exposed the expander on one side. My PS removed the expanders, excised the thin area and replaced the expanders. The whole thing healed well and three months later I was exchanged to permanent implants and never had issues with skin integrity again. I hope that might be the same for you.
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Thanks, Tampa. I hope so too!
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Tampa- so good to hear good news!
SpecialK: Yes, 1 Tylenol and 1 Advil together boosts the effectiveness of them both. (DH the pharmacist concurs!)
Mich_M, thanks!
Chic: I only saw my surgeon before and during BMX. Never saw him afterwards as I was then in PS's care. My PCP and ONCO handle checking me for lumps. YAY you don't have any doc visits till Feb!
Momof3: I hope I sleep tonight, I couldn't fall asleep today! I tried the recliner this afternoon...the bed is more comfy. I took away 1 of the pillows and it is better now. Still only taking tylenol (Vicodin is so constipating!) and it is taking the pain away. I still have a fever. I think I was fighting something before surgery and after surgery it kicked in. I don't think it is related to the surgery. I just ran myself down. Hopefully the Augmentin knocks it out of me.
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I'm sorry you're having to deal with this, DLL. I'm up waiting for pain meds to kick back in. It's been very manageable as long as I keep taking the pain meds. Will try to go from taking 2 to 1 tomorrow, then to ibuprofen during the days. The pain pump and one of the drains should come out Monday, leaving me with one drain - blahhh! But I do realize that they keep the fluid under control and prevent infection so I must make peace with it. I'm proud of myself for really and truly taking it easy this time around. Last time I think I overdid it and also feel like the drains were pulled too early. Learning from those mistakes! I hate the itching though. I have a hangar that I stick down my back so I can scratch.
Hope you're OK, Renn!
Chick - I look forward to the days of no doc appts!
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