NOLA in September?
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Am posting link to this article as it seems to be a timely topic..
http://m.oncologystat.com/journals/journal_scans/Impact_of_Sequencing_of_Postmastectomy_Radiotherapy_and_Breast_Reconstruction_on_Timing_and_Rate_of_Complications_and_Patient_Satisfaction.html#full
(This is a free article even if you may have to register)
This was a study done comparing patient satisfaction/complications with recon done either prior to or after radiation
Marcia
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OK wait - scan?? What scan? The MRA before surgery?
Rogam, this Charleston gal is praying for you too!
Susan
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Good luck tomorrow Rogam!!!
Amy, don't be afraid, getting the drain out is surprisingly painless and you will feel immediately better! You'll see.
Katheryn - YAY!!!! Good for you! You must be so relieved!
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Yeah, that CT scan was crazy! I felt like I was cooking from the inside out. Thankfully the ladies were wonderful and the hot flash was short enough. I felt a bit woozy afterwards and I worried them. That passed after a few minutes.
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I tried to post this earlier but posted crazy, so here it is retyped!
Kathryn--revisiting my previous comment, we are on the same page with our NOLA experience. I'm still trying to get a grasp on what my cancer is. Not only do I have stage 1 healing, I've got chemo hurdle to jump through. I'm finding comfort in the EnCourage videos on their site, as well as local support. However I have an incredible urge to have more of a connection with NOLA. I'm guessing it's because I'm in the trenches. My aunt is 5 weeks out from her mastectomy (she got diagnosed after me; I was the nudge for her to get a long overdue mammogram) and she's seen her surgeon every week for follow ups. And what wonderful news about your cancer free report!
Laura is sending me a new bulb for my drain. The little suction piece inside fell off but the bulb still suctions fine. My output is very straw colored but the amount is around 60. I don't have anything written down about what my output is supposed to be before pulling the drain! My drain runs through my belly and comes out my hip.
I also wrote to Laura about my pain and she said it was right on target. I have almost no belly pain. I've been off percocet for a full day now, so things are moving right along and I don't feel as stuffed sausage as I did before. I am eating less, which is a good thing. My goal is to lose 40 pounds before stage 2. I don't know if I'm fooling myself since I have to go through chemo. I've been so prepared to not need chemo that I haven't read up on it, and I don't have the heart right now. I do have a lot of pain in my chest: deep dull pain, sharp pain, heavy pain and numb. My range of motion on the cancer side is less than the other side. Laura gave me the go ahead to find a PT to help with that and cautioned me to do gentle stretching until the 6 week mark. I told her I just want to strrrretch it out! I also want to get set up locally with a lymphedema PT, as I've got armpit swelling and I want to be as proactive as possible (this adds to my motivation to drop 40lbs).
As far as activities, I've been walking 2 miles daily the last few days. I hope to be up to 3 miles next week. I went shopping with my sister today. Just to Kohl's; my 5yo nephew came under protest, but ended up loving running in the shoe aisle (despite the scolding!). There's a party this weekend that I want to go to. Hubs is grumpy and non-committal about it. But now that I'm back to driving, I may just go with out him! Our girls are 7 and 10 and he's been wonderful about taking care of them so I can heal. But he doesn't seem to have anything left for me. Just another cancer perk! Their last day of school is Friday. They'll have a week off, then start half days of summer school. I'm a SAHM, so while it's hard for me not to be in control of it all, I kinda like being 'off.'
Kaitsmom, I do not read People's Pharmacy. I will have to try MOM. I'm so sensitive to smells in general so the BO is driving me nuts. My husband found the house on VRBO.com. I also can't believe today was 2 weeks after surgery!
I also have to comment that now I'm feeling sad that I didn't meet anyone while in NOLA. But I have to honor my feelings at the time. I have to take it One Day at a TIme and know that I'm doing the best I can at any given moment. I know my husband and then my mother saw a few of you!
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i am about 6 hours away from my last drain being pulled. yeah. i cant sleep i am so excited.
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Cider, I'm in the same boat as you, healing up to start chemo. I read so many different things, people getting so sick and than betsy (from boards) gives me hope that although I will have days that will I will be really run down and of course hairloss..that I will make it..she came to visit me in NOLA and she looked great (she justed finished her chemo, I think the week b4) Katheryn was so right about someone to talk with while at NOLA, that would make a big difference to many of us...I know some of the women going there have been on this journery for a long time, but some like me have just been thrown into it ,I kind of felt like I fell overboard in white water rapids. Luckily this website led me to NOLA and I'm so greatful. Well I'm so proud of you for your walking, I went to my mailbox yesterday lol...not that I'm having trouble walking but haven't ventured out...I think I don't want to run into the neighbors..I'm also with you on the weight loss thing and the swollen arm is I think (besides the drains) the worst part..well I'm sorry we didn't meet but def understand ,but we have the boards!!! I'm probably going to my moms for bbq this weekend, think I'll feel better being out and acting normal..have a good weekend cider
Theresa........woohoo...I am soooo jealous.. hope your feeling great!!!
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Tig, is it OUT YET??
Rogam, thinking of you!!! Hang in there!!
NoWords is Friday!!
Hope you all are healing up well!
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I drove today! I made a Target run and picked my daughter up from school. Just as the other daughter got home on the bus the tornado sirens went off. So we're in the basement. Mother Nature is Pissed Off.
I went to the oncologist today. It was the second time meeting her and I think she's great. I don't think I got it until she explained everything: I had a 1.2cm IDC tumor that had gone completely undetected with all the MRIs and biopsies. That was the one that invaded my one node. It's the run of the mill IDC. My other IDC I was initially diagnosed with was mucinous, a rare form of IDC. So I'm not a special flower anymore! It looks like I'll need 4 rounds of chemo but won't need a port. Just an IV infusion once every 3 weeks. She then said I need radiation but I DO NOT WANT IT. Stolier said I wouldn't need it having only 1 positive node. She's going to talk to some more peers and try to find someone with flap experience, too. She said my recon aesthetics and increased risk of lymphedema are valid concerns. So I'm glad she didn't blow me off. She's only seen one other flap patient (it's not common here) and it wasn't a good job. She was so impressed with mine! And it's just phase 1. She was also very curious about my NOLA experience but I had very little time to share beyond the basics. She wants to be able to share with other patients, even though she's not first in line when patients are going over recon options.
So, I'm going to lose my hair. I'm most worried about my daughters reaction. My 7yo cringed when I told her. She also told me, when I picked her up, that it seems like I never even had the surgery. She also does NOT like to see my drain tube sticking out from under my shirt. My 10yo (she has mild autism) almost cried about the hair. Then she went back to the Wii. Everyone tells me how good I look and I just wonder how am I supposed to look? I'll take it I guess. Now I have to decide when to cut my hair. My infusion will start in about 2 more weeks. Onc wants me to have healed from my drain, so that's assuming enough time for my drain to be out and healed up.
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Cider - what a day - tornado warnings and the oncologist (sounds like there is some similarity between the two!) I hope your chemo goes well - and I'm guessing your kids will adjust. Talking about things is often worse than the actuality. If you go the wig route maybe they can come with you when you try them on. Could have a few laughs with that. It sounds like your oncologist is very open and that's a great quality. I am going to my first oncologist appt this friday and I'm a bit nervous about that.
Disneydawn - I found getting out and socializing was great therapy. Enjoy the bbq.
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Yes my drain is out!
I am so glad i didn't realize what is looked like before it was out. I was way better off not knowing! My friend who has been with me this whole journey (some of you met her) had seen my other drains pulled and i would ask her do i want to know what you saw? we went back and forth and i always ended - no i am not ready to know. lol
i am glad i was just able to trust the doctors and not really know until after what was in me. today i am two weeks post surgery and surprised at my progress. the first couple of days after surgery were tough and i wondered why i had subjected myself to reconstruction but now i have crossed over to the side where i am glad i did it! now i just have to focus on walking upright. for those of you that are walking miles already - i am trying to get to that stage. i am not walking too far but i keep going farther and farther each day and still am not getting to far. my medical doctor took out my drain and wants me to have physical therapy. first available appt is in june so i may be upright before that! the medical doc was pleasantly suprised how great my reconstructed breasts look. me too!
i am almost to the point where i can begin to think about stage 2!
now that the last drain is out i can start wearing my abdominal binder. once i find it in my unpacked luggage. i saw the dom and decided to use that after stage 2. lol
great meeting you all and reading all of the encouraging words here. it has helped so much. also meeting denouement prior to my surgery really helped me know that i could do this and survive. I did!
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Way to go Tigsun. Hopefully the binder will help you start standing up straighter. It may be easier when your tummy is supported. Your back must be awful after all this time hunched over
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Hi Ladies... So glad to hear everyone is on the mend, both physically and mentally..
So, I haven't cancelled my radiation simulation appt yet, but I will be.. so I will go forward 9as of right now) with my DIEP/hip surgery... my surgery is scheduled for 7am on July 21st, and so the countdown begins.
I have now read so many of you are now headed onto chemo... I have to say, chemo was almost uneventful... I think you have for sure been thru the worst of it, and chemo should be much easier. As Dawn said, I finished my 6th chemo 4 days before I came to visit Dawn, Theresa and Jerusha at NOLA (sorry I missed Amy and Cider)... and though tired, I was fine (albeit bald)... I did have and still have a port, and am glad, so if you need that, don't worry... it makes infusion day a lot easier... Once you all know which drug(s) you are on, let me know and I can try to help you find great threads, I was on taxotere and cytoxan.
I had a few great phone conversations today with NOLA stacked DIEP grads... very reassuring... I know that once I cancel my radiation appt, there is no turning back... and I find that daunting.
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So Betsy, you made a decision, at least for now, to do the bilateral MX and recon and skip the rads, sounds like? You feeling okay about it?
Tig, CONGRATS on having your last drain out!! whhoooop!
Cider, your ONC sounds great, really. At least she is listening to you and not trying to scare you to death right off the bat.
Kathryn, let us know how your appt goes on Friday!
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Bdavis, I could hear so clearly in your words that this is what felt right to you all along. Sometimes our true feelings are just so obscured; it takes a lot of work and torment till we can hear our own voices. I for one am of the "drive yourself nuts" school when making these decisions so I can spot a fellow traveler a mile away. So many angles to consider, so many opinions. But you did your homework and I think you've made a sound choice. Hope you are feeling a big PHEW.
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Cider - I got my hair cut short before chemo to get used to it, and had it buzzed as soon as it started coming out. There are some excellent threads on here with suggestions to help get thru chemo. Also, if you do go the wig route....check with your local Amer Cancer Society office...Nashville office had wigs, and I got a very nice one there for free. Do you know which "cocktail" of drugs you will be recieving? Congrats to those newly "on the other side" and Best wishes and prayers to those "On Deck"
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Rogam, Hope you are resting well tonight with your PCA pump and pain balls and top notch SCSH nursing care! Can't wait to hear the details. YAY for you! You did it!
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OK, I think I'm scaring myself to death about the prospect of radiation. Waiting and anticipation has been the hardest part of this whole journey. It really is not always as bad as anticipated, but that worry is hard to let go of. Serenity prayer for me--over and over. I've got strong faith but WOW. I'm on the edge and grief is hitting me.
I was able to get out to a dear-to-me support group meeting (not breast cancer) last night (in between tornado warnings and thunder storms!) and it was incredibly nourishing to be with my long time friends. It also felt good just to be able to be physically mobile and back into part of my routine. Of course, I did take a nap before I went!
I've been really anxious to vacuum my floors. I keep meaning to have my kids vacuum, but wrangling them right now drains the energy out of me. So, again, I just let go, and feel gratitude that hubs is keeping them fed, dressed, semi-clean, to bed on time, and to school on time.
Just bear with me ladies! I feel better already after writing this.
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Oh, my drugs will be taxotere and cytoxan, just what you had Betsy. I'd be grateful for any thread suggestions. I know I won't get a wig but I'll have to look into the penguin cap thing.
BTW, my name is Paula, I'm 39, I have 2 daughters, 7 and 10, and am a SAHM.
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Paula, I kept saying what is SAHM....duh I too am SAHM my name is Dawn just turned 40 (2wks after diagnois) 3 sons 13,11, and 8.. So glad your ok. I was thinking about tornadoes and hoping it missed your area : ) Why are they thinking radiation for you? I was told (in my case) if 4 or less lymph nodes than I wouldn't need...geez there are so many variations it makes my head spin..I'm going to my Onc next thursday, he already told me that I will have dose dense (every 2 wks) 4 a/c & 4 (think taxol maybe saying wrong) Going wig shopping next wed..just so afraid of getting port ! I know it's worth it to get but I'm such a baby and really don't want this thing jammed into my sensitive chest! I just sent Laura at the center an email ,as I still have my abdominal drains and output was 45 for past 2 nights, but she said dr d wants color to be clear(is that possible????) the only way I can describe the color..sort of like whiskey or light brown liquor...hope she says they can go..would make life a little easier
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Dawn (and others), I just talked to my onc--she called me from the car repair place! I love her more already. I feel much relief after talking to her, she knows how I want info asap and that I am a worrier. She talked to the tumor board yesterday and told me the chemo option, if no rads, will be just like yours: dose dense A/C followed by taxol, 2 week rounds, 4 rounds each. And I'll need a port. This sounds more in line with what Stolier and Sullivan suspected I'd need. I think the rads and T/C was a less intense treatment for effectiveness. Her peers did say the rads don't do well with flaps, so she's really respecting my concerns. The only thing she warned me about the A (adriamicyn?) is that I'd need a heart ultrasound? and there's a very minimal risk of developing lymphoma? YIKES. So that's why she prefers to avoid the A, but the dose amount is closely controlled. She still wants me to visit with the radiation onc, so I will. Right now I'm not afraid of the port but I don't think my chest is supersensitive.
Interesting about the drains; my one drain output has gone down to 48, 55, 45 the past 3 days. I'm still getting some clot strings. Mine looks like straw in the drain tube but more like red tea in the bulb. I thought I was getting close to finishing, but I guess not close enough.
What a ride we are on!
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I'll bite, what is SAHM???
Adrymicain is nasty stuff (I had it). Causes more neausea, risk of heart issues later and developing blood cancer (low risk, but still). If it was me, I would choose this over rads I think. Hard to make these decisions and yet somehow we do. I had to choose between 2 chemos and it took me a week to decide. I chose the more aggressive, then also did RADs!!
Good luck to all.
NOWORDS is up tomorrow.
Thinking of you Rogam!!!
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Paula, glad you got some news (hate not knowing what will happen next)
So happy, Laura from center called to tell me I can take one of my drains out!!! whoo hoo and than if other stays low and doesn't get redder I can take it out in a few days...gosh I will feel soo much better!!!
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stay at home mom
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Hi Paula... Don't be scared by the title, but TAXOTERE IS A NIGHTMARE is one thread and I started a thread TAXOTERE TOOLBOX... About the cold caps, ask your doctor, because mine did not want me using them due to the risk of scalp mets... he said you don't want to go thru all this and then get mets... The caps prevent the chemo from getting to the scalp, thus saving your hair, but as I sit here bald, I do not regret not using them... better to be safe than sorry... and to rent them costs about $1600, and they are uncomfortable (from what I have read) so add all those factors together and I chose not to... but mostly because of the mets.
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Dawn... don't fear the port... the first day it was super weird and my neck was very stiff... but after a few days, I didn't even know it was there... My veins weren't good enough but even if they had been, they told me that if it leaks it can cause 3rd degree burns, so I didn't want to risk anything...
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And Paula... I think AC-T is more aggressive than TC... I did not have AC-T, mostly because I have high blood pressure and didn't want the adriamycin, but I think they are almost as effective... I would do some independant research on the two courses of chemo and then talk with your MO.
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Thanks Betsy. I will get moving on those threads. My blood pressure has been elevated the past 6+ months, a few months before my BC diagnosis. It's not been officially diagnosed as high blood pressure or treated yet, so I better get on that. I keep hoping if I drop a few pounds it will help! I've dropped over 10 pounds since the beginning of the year, but I have almost 40 to go. I think my elevated blood pressure is from Effexor XR, though. I don't think I can function without it, though. I'm not liking the idea of adding more meds to my routine!
And good to know about the cold cap. My hair grows fast and I can't plunk down more $$ and the mets sounds like the clincher. I'll be passing.
And, hey, since one of my nodes was positive, that means I have micromet? Is that right? I'm overwhelmed with all I have to sort through right now. I forgot to ask my onc about that terminology.
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My treatment was AC, followed by Taxol. I had a port, and had no problems with it for the most part. They have great drugs for nausea and such, taking those is a MUST. I skipped it once on accident and I was sorry. I worked full time through chemo, and rads. I just took 2 hours off a day on the day I had treatments. The AC was 1 time every 2 weeks, total of 6 times. Then I did the taxol every week for 12 weeks. By the end of the 12 weeks I was done, mentally and physically. The side effects from that were slight tingling and numbness in my fingertips and toes. Then my fingernails and toenails were doing interesting things, and I almost lost my big toenails. But I survived, and everyone else will too! We imagine it way worse in our head than it really is!
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Hey ladies. Feeling better than I thougt i would. They said I did great. The surgery went longer than I thought. Up in the chair. Planning to walk later.
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