NOLA in September?
Comments
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Hi Rosemary... I am having nipple sparing on my cancer-free side, but on the cancer side I will most likely have them take the nipple... I am a candidate for nipple sparing there too, but my local BS says why risk it if I am having the MX to decrease my risk... so I tend to agree.
As for companionship, I can tell you what I am doing, although haven't done it yet... flying down alone on a Tuesday with surgery on Thursday. My local friend will be with me thru post op a week later, so she'll be with me for like 8 days... then my husband ing down the day after post op on a Friday and staying the weekend with me and we both fly out Monday.. So almost two weeks after I fly in. My DH can't take all that time off of work, and even though he'd rather be there on the front end, I HAVE to have someone fly me home, so this is how I planned it.
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Betsy, how are you feeling after chemo heading into surgery? My chemo is kicking my ass. I'll be able to have the 3 months before stage 2 to recover, eeking in before the end of the year. My hemoglobin was down a point+ this second infusion, so my fatigue is obvious. The Neulasta shot did it's job with the white counts. Just wondering if you were sub-par at the end of your chemo and have been building up or still felt good at the end and not much difference waiting for surgery. I'm sending Dr S my bi-weekly counts so they can see how I'm doing.
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Hi Paula,
I am fine... Chemo for me was not bad... I had a slow first week, but weeks 2 and 3 were always fine... by the end, that part was the same... but overall I think I was more fatigued and weaker than normal, but not hugely noticeable. Some of it could be due to the fact that I really laid low and didn't exercise much and generally not as healthy, plus working a lot (something I am not totally used to).
So, if I were healthier and exercising, I think I'd have plenty of energy and would feel great... I just get more tired now. My WBC were always fine during chemo, always above normal... so I think for me, surgery will be fine... I could have had surgery within a month of chemo ending. Everyone is different so you'll just have to see how you do... What chemo are you on again?
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Dose dense adriamycin cytoxin, 4 rounds every 2 weeks, then taxol, 4 rounds every 2 weeks. I get a Neulasta shot after each dose to boost my WBC (makes my bones ache!) but my RBC has been getting lower. 1 point since last infusion and about 3 since before surgery?? It's not in danger of needing a transfusion. My nurse said she only had one patient that needed that. But the fatigue is clear on paper. I probably need to take it easier than I have been. I had to get a heart ultrasound because A can cause heart problems at toxic levels, but my MO said we aren't getting anywhere close to it. Scary stuff.
I will definitely give myself the 3 months since that still leaves me mid-Dec for ins purposes. I was surprised/pleased when Dr S's nurse told me to send my labs throughout chemo so they can keep tabs on my progress. She told me to wait until mid-treatment to book Stage 2, to see how I'm doing then. Thanks for your feedback. You've got less than a month now!
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Laura-I'm sorry that you had such a hard time with Stage II. Hopefully, you can take it easy at home and your body will start to heal.
CIder8-I got DD AC/Taxol and I had increasing fatique as I moved through the AC rounds. My energy was better by the time I finished Taxol. I had an oophorectomy 4 wks post chemo. I think that surgery is easier then stage II but I really felt fine going into surgery. 4 weeks later, It's great that you can give yourself 3 months before surgery. I think you'll be pleasantly surprised how well you feel by then!
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The other side effect I've noticed is a sore throat and neck. Maybe because my IV was in my neck but not sure about the sore throat part? Other than that I'm doing good. Just now took my 2nd pain pill of the day, and laying down to get some sleep before we leave the hope lodge at 5:30am!
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Hi Dragonfly. (I forgot to mention we met too - but she doesn't remember!) Hope your neck feels better! I'm sure it's the intubation plus the IV. Have a safe trip home and say hi to Claudia (that' was her name, right? We had a nice chat while she waited for you...and laughed a bit when you kept dozing while you and I were talking!) Glad we got even a small amount of face time! Feel better.
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Yeah the iv in my neck was a bit uncomfortable! I tried so hard to chat with you too dang it
lol ... I couldn't say awake for nothing. I wish we'd had more time and I was coherent! We fly out at 7:30am and I'm ready to go.
Monday my daughter and I turn around and fly to Boston for 11 days!0 -
Hi Kathryn,
So sorry that you had such a rough time of it, but glad you are safely home. Hopefully the drains will be just fine. The need to hunch over resolves by 2-3 weeks. I've heard a lot of ladies say that they get horrible back aches. Be glad, be very glad that you feel so tight in front...my surgeon here at home told me that I could stand up straight right away "because I didn't pull you very tight". I could have punched him! Three years later, I was really feeling the need to have Dr. D tighten me up, and he did, but it was a lot to go through all over again.
Dragonfly, I just cannot imagine an IV in the neck. Glad that part is over for you, and I hope you enjoy your trip to Boston---safe travels!
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Yeah it was a bit intense with the IV in the neck. Getting ready for our 5:30 pick up! I was told do NOT put any cream or ointment on the nipples. Stacy said Dr S and Dr D tend to do some things different. Of course none of the shirts I brought are that loose, so you can see the madonna shaped things sticking out lol!
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Sandy. Thanks for the words of encouragement and the timeline. Glad to know I'll be looking my age (and not 85!) sometime in the near future. I can't believe your doctor didn't tighten the skin (but that's the one that didn't do a lot of things, right?) and had to do it again. Happy this is my first and last time.
Dragonfly - you're my hero - traveling again! It's all I can do to get from the chair to the kitchen to the bed these days! Have fun!
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Springtime - My surgery date has been changed to July 29th with Dr. Lagarde, Dr S and Dr. D. I'm a little freaked out about having a surgeon that I've never met but I'm hoping to have a telephone consultation with Dr. LaGarde before surgery. Just can't wait to get Stage I behind me!
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Toomuch, thanks for your feedback regarding DD AC/T. It gives me a little perspective. Stage 1 will be here and gone before you know it. I didn't meet any of my docs before stage 1! I took a big leap of faith and it turned out well. I did have stolier but I trust Dr S and D wouldn't use Legarde if she was subpar. I was initially assigned Legarde but was switched to stolier.
I got the official no rads recommendation from my RO. She had the slides reviewed here for some minor clarifications. People (what people I can't remember) said to be cautious because it's her job to give me rads. Well, my RO did not work that way. She was very happy to say the additional info took me further out of the grey area and into the no rads rec.
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Cider, I had the same chemo protocol, and round 3 of AC was my worst. The taxol was like a breeze and no more nausea by comparison. I also had rads and after that, my counts went below normal and stayed there for over 2 years. Not unusual according to my ONC. Just went back up this past May, PTL!!! I did exercise (mostly walk) and other things the PT gave me to do. It really helped me keep my energy levels up. I worked through chemo the entire time. I worked half time through rads.
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Too Much, I updated your listing and date above. Don't worry! You are in the best of hands. Everybody told me this, and it is true. Believe it!
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TooMuch - I had not met Dr D or Dr L until the day before my surgery and that freaked me out too. But I have to say it worked out fine. They are used to that and are good at putting you at ease. I was very nervous going into my pre-op appts the day before my surgery and I remember leaving the Center that afternoon (after meeting with everyone) totally at ease. I hope that you will feel the same.
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Has anyone had a one piece dom that went from the bra to below the knees? I just got one in the mail and realized I don't know what to do with the drains since there are no holes for them. Right now they're snaked up to the top of the bra and dangling down. Can that be right? Thanks.
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CIder, Spring, Laura - WOW, you are all so wonderful. I know that what you say is true. I will be in good hands. Now like Spring said, "believe it!"
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Kathryn, I am BEAT BEAT BEAT!! It's going to be a long weekend of doing absolutely nothing. I was so mad at myself and nearly in tears by the time I got to the airpoart at home. This morning I put my antibiotics in my purse instead of my pain pills. So when I was hurting I took an antibiotic, and couldn't figure out why I was still so sore. Went to take another one and realized what I'd done. So no pain pills from last night until just a couple hours ago when my bag came around on the carousel in Portland. I took a double dose!!!
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Hi Everyone, Can I say OMG thank you to all for getting me to Nola! What a wonderful Magical place And the best Doctors and nurses in the world. I am now Atlanta's voice for the center ! Thank you all for all the tips and thoughts , prayers everyone gave. Dr. S is truly wonderful and god gave him a gift and he is a blessing to BC
Kathryn Yes that is how it works i had one on when you came to my room your husband is so sweet.
Laura , I hope you are doing well and feeling good wonderful to meet both of yall when is your stage 2?
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Leslie, Glad to hear from you! You sound GREAT!
Dragon, our poor girl!! I am so sorry! This can happen to anyone! I have totally done things like that. You'll get a handle on the pain and I hope you feel better tomorrow!!
Kathryn, You can cut holes in the garment if you want, but I don't think it matters if you snake them up and out. With the regular "DOM" (nordy's term!) I snaked them up. I could not allow the plastic tubes on my skin, I am allergic!
Toomuch, Believe it!!! It's true!!! Look at what Leslie T just wrote!!!
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The 2 pain pills did the trick, I am taking it easy in my awesome recliner and just resting. I did get up to do a load of laundry though but that's it! I love my DOM still, and I remember being so itchy after stage 2 last time. Walking around scratching my butt lol
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Kathryn- I just put on my old Amoena cami on from my Mx and it is cotton put pads with slits around drains and abs pad on top zipped up dom over my cami with drain tubes going up and the are not bothering me at the moment . my last nurse had them come out of cut out and i said no way. I hope they slow down in the out put. One is Draining real dark and the other is light. I have not need any pain meds so i guess that is good but they only did my hips
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To all going to Nola for stage 1 or 2 and if you like art, Alex Beard has his Studio on Royal St . Hemmerling Gallery is also. Nola has some wonderful artist. But if you have children go to see Alex Beard
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louis13 I had a friend fly to NOLA with me. we flew in on a Wed.- pre op appts Thursday, surgery Friday. She flew home mid day Sunday. My husband flew down Tues. for discharge. I was at Fairway Surgical Center in Covington for the surgery by Dr. Massey and Sullivan. You really don't need anyone in the hospital...I mostly slept and dozed....my friend bought me in some food and books but I really didn't need anything....my husband helped in the hotel, getting food and shower assistance etc. Six days after surgery went to post op appt and then out to eat. Not sure how much surgery you are having. I had a uni delayed stacked DIEP and was out of surgery in 4 hours and up and around pretty well by day 6. I was also almost two years out from chemo and rads and MX.
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KathyrnLA I snaked the drains up as well...put some surgical pads between them and your skin to ease the discomfort and take a pain med if you need it. I had the uni stacked DIEP Stage 1 and was told that I could use high waisted spanx if I wanted to instead of the "DOM"...I did that until drains were out...much more comfortable...had the drains go out the bottom ...
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Question i can not figure the underwear thing out since the top of the belly is bigger than the bottom..everything just slips down to the incision line--Any suggestions??
Kathryn and Dragonfly hang in there!
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That's the problem I had after my 1st and 2nd stage.... hoping the ton of lipo he did Tuesday will help fix this problem? My pants and underwear were the worst!
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Hi Paula... Yes, I am now in a countdown stage... less than a month... i have been very busy... in Charleston right now and then back home tomorrow... a couple of weeks at home... then a vacation in Vermont and then NOLA...
I did not have that chemo regime, but I know it can be harder than TC. I too had Neulasta and the achiness, but that improved as each cycle passed... I have heard that once the bones ache and expand it isn't as bad with each cycle.... try taking claritin for that... I can't explain why, but it does help
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First shower done at home all on my own, felt so good. Plus I was able to downsize my DOM girdle already. So that's a nice feeling.
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