December 2011 Surgeries - want to wait together?
Comments
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Kam- the femara is to rid my body of estrogen. Even when your ovaries are gone your adrenals and fat makes estrogen and my cancer is estrogen+ so the drug works on that. I don't know what is causing the inflammation; possibly an autoimmune disease. I am off of gluten, dairy, egg, soy, peanuts, sugar and bananas. still I am so puffy and retaining so much fluid. I have the same problem with my joints when I sit for more than 15 minutes. Could be from the femara, the inflammation or the lymphedema though. I think inflammation definitely plays a part in cancer but am not sure that one xray would do it.
Hang in there...
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so --- first revision doing well, scar revision doing well. back from neuro and will be going to PT 3 times a week for damn disc issues. If not one thing, it is another.
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Kam-I am so sorry you're going through this "alone". You know we're always here for you, although it's not the same as being there...share your burden, we have incredible strength as a group.
Ginger48-I had oncotype score of 17 and ooph, too and of course the lovely frozen shoulder. Now the other shoulder is acting up-hope you get some help from the rheumatologist.
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Kam - the brava is a funky bra, kind looks like a darth vader. It has a pump that shapes and creates a fertile ground for the next fat graft. It helps increase the retention rate to about 85%. The next round of lipo will take fat from my hips and fill in the pockets that the bra creates. I hope talking to a counselor will give you another perspective. I think I'm preoccupied with all that is still ahead that all of it hasn't registered.
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Spunky- we do have a lot in common. Hope that shoulder resolves quickly!
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Faith- I googled the BRAVA bra - very darth vader. I guess i couldn't tell if it was internal or external. If it's external, wow. (I don't think it would make sense to be external, but do they remove it at some point? Is it like Alloderm, it will just become part of you?)
I have gone to a couple of counseling appointments. She's just getting to know me "and my issues" before starting EMDR therapy. This is basically reanchoring my issues with some sort of rapid eye movement and anchoring. I'm not even sure what to expect, yet!
Started my last and final chemo series yesterday - Carboplatin. This might be the first time I've enjoyed the companion Steroids one is given as I have lots of energy and absolutely zero feelings that I'm on chemo, other than walking was a little bit harder, but it is warmer today too. Not only that, I swear, my neuropathy from the Taxol has improved another 25% overnight, after being stuck at 75% of worst case since Sunday. I'm kinda liking this new chemo
Honestly, Saturday is usually when the full brunt of chemo hits, so I could change my tune.My MO gave me a pep talk...."it wasn't in my nodes and that one is a really important factor" but after discussing my Oncotype score, she increased my recurrence score from 12 to 18% (with chemo), so now I'm confused why I'm getting these two different numbers from two different MO's. And, afterall, Oncotype assumes no node involvement, so it's not like that is making a difference to those numbers. Must be the steroids, I'm still feeling much better.
Hope all are getting better too!
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Kam-so glad your on the final chemo series and REALLY glad you're feeling better-hope it continues! I find the whole oncotype thing somewhat baffling. It seems there's some subjectivity to how the scores are read. Do you mind me asking what your score was? I had cancer in both breasts and has scores of 17 and 18.
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Kam - hope she can help you find some peace with the reoccurrence rate. My onc didn't run the oncotype on mine, she knew I needed chemo either way. I do know my ki67 was very, very high - like in the 90s meaning that they were dividing very rapidily. Some days that really scares me, but on the other side that means it should be very responsive to chemo if anything did spread.
The brava is external. I will need to wear it 10-12 hours a week for about 4 weeks. Some ladies currently wearing it say they can see visible results.
Hope everyone is well -
10-12 hours a day that is
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Spunky- I'll leave my profile info on this message... But oncoscore was 39.
Faith- what is that bra made of? Looked like plastic in one picture! Is it suppose to create a shape? My Ki67 was 60%. Hard to believe over 20% is considered high. -
It's some kind of hard plastic. I went to the center yesterday for an appointment and talked to a few ladies that are currently using it. The first graft is pretty amazing. I will start using it on July 17th for about 4 weeks to prepare for the second one. He thinks I might get away with only 2 and the 3rd will be minor corrections.
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Thought I'd pop this thread back up for those of us still around. Hope everyone is doing ok??
Looks like I'll be finishing carboplatin either Aug 1 or Aug 8, then 3 weeks later on to more surgery (TE exchange, port removal and ooph). Should I be moving to an August surgery thread - lol? Oh, can I say this loud enough, chemo sucks! Really got dealt the bad hand (and foot) of neuropathy.
Faith - how is the BRAVA bra? Do you wear it away from the house?
Ginger - why Femara over Armidex? Hope yours and Spunky's shoulders getting better. And fitzdc - your discs.
Feeling less connected to BCO, but I still read it.
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Hey Kam, and all my other December sisters.
I just had my most recent surgery on Wed. (July 11). It all went well and I'm feeling better each day, noticeably better, in fact. I'm in the surgical vest/bra from the lumpectomy, it stays on better than the bandage the PS wrapped me up in which was falling off Thursday morning.
I hope you're all doing well and either on the mend, getting back to normal, or already back at it.
HUGS!!
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Hi everyone! I am a little over 4 weeks from my BMX and I'm healing very well. (....and 5 days away from the DMB concert YAY!!!!, I was very worried about still having drains and can happily say that is a complete non-issue) I did a very slow jog over the weekend. I know Tamoxifen is a week or so a way and I'm thinking anything I can do for my metabolism can't hurt. I know lots of people kept up excellent exercise routines through chemo, although I think I did fairly well overall that was one thing I lost over the last 7 months. I'm looking forward to a no excuse situation. Right know my excuse (mental) is that I'm not entirely comfortable going back to my old gym sans hair and boobs. Thats a very pathetic excuse and I'm working through it.
The BRAVA bra will be delivered today and then I have a follow-up appointment tomorrow where they will show me how to use it. I will let you know how it goes. Ready to get this next phase started!
Kam - I've rolled on and off thread themes based on what I've been going through or what's up next. At first it was the inital surgery, then what to expect with chemo, then reconstruction, then the BMX. My current read seems to be Tamoxifen. But, because I am logged in reading/searching I hop into all of the other threads. Some of which can certainly be overwhelming. I am hopeful that once I'm in the groove with that then the lingering focus will be strictly on the personal catch-up with the friends that I've met and I can file the reoccurence risk away.
Hope everyone is well. Cookie - glad to hear you are well. I see that you started the July surgery thread. I am sure you were a wealth of knowledge and comfort for those that are just starting their journey.
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Faith, I am glad you are recovering well. Kam, I also follow different thread depending what I am Goo.g through and still come here every day. Perhaps when my Exchange surgery is over, I will be here less, but I still need to have one TE placed! Cookie, glad the vest is working for you, and that you are feeling better. I am going to rehab because this stuff took a lot out of me and I am in sad shape. Much love to all.
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Hi ladies
I keep this thread in my favourites but mostly post in the Running thread. (See you over there, faith?) Not doing medical onco stuff like some of you. Have a DIEP revision off in the future (and keeping my eye on the DIEP stage II thread) but right now just trying to be normal for a while.
For me, "normal" is working my tail off. Since I returned to work, I have been basically doing double time trying to catch up because I know nobody's going to cut me any slack. I wish I could take some vacation, and I wish there was 36 hours in a day, and neither one of them is going to happen. That said, my concentration isn't bad, so it's going relatively smoothly, just a lot of work.
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Goldlining, good to hear. take care.
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Just back from PS. Had first revision June 13 and feel (and look) good. Next appt with PS in September for nipple and then hope to be done.
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Yay, Fitz! Light at the end of the tunnel!
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At least light for the BC issue. Now going to PT for neck issues. Taking new meds that make me so tired - all I want to do is eat and sleep.
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Maybe that's just what you need to do right now, eat and sleep. I am finally getting some energy back, but it is very low energy! Much love.
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Wow - nice to see our core group is still lurking here. Where did Blessings go? Is she ok? Spunky? I PM'd with AussieKate for a long time, but she has settled into the Australian thread.
Ok, all of these revisions!!??? Honestly, I've been only looking one step ahead...surgery, then chemo, now TE exchange in early Sept. Revision - what can I expect from that....one, two, three surgeries, appointments? I'm soon to run out of leave at work and need to put in for some donations, but have no idea what time these will involve away from work.
Cookie- a surgical vest bra? It always amazes me how differently surgeons deal with the post-care. I had nothing after my BMX...maybe somthing over the stiches, but honestly, I think just glue, some drains and some pain killer tubes (I should pay better attention to these things, but mostly I just don't even look). Never told me to buy a camisole or anything.
Faith - I'm glad to hear you are finding BMX recovery ok. Even having those drains....I've totally forgotten about those...I think I forgot to empty them, even, once!! (It was ok, but very full) .
For those on AI's, how is that going??
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Blessings has been busy getting her fat butt in shape, and lurking here on BCO!!!!
Kam - I started to post a reply last night, but gave up and went to bed. Thank you so much for reviving the thread.....it's nice to stay in touch with my December sisters! So sorry chemo has been hard on you....have they given you any drugs for the neuropathy?
CookieMonster - Glad to hear you are recuperating well!!!
Faithhopenluv - I will be VERY interested to hear your experiences with BRAVA, so please keep posting your progress!
Hi, Moonflwr! Wishing you the best on your next TE placement. I do my water aerobics class at the local Rehab Hospital, because it's really the only place I feel safe, knowing that the staff are professionals and won't cause more injuries. (Plus the water is heated to 94 degrees....ahhhhh.....)
Goldlining - I was so fortunate to be able to retire early. I remember those 60+ hour work weeks. Dang, working really gets in the way of your life! Hopefully, you'll see some relief in your future and find a way to rest and relax during non-working time.
Fitzdc - YAY on the good outcome of your revision!!! And new nips? WooHOO! I'm still thinking of finding a way to go see Vinnie for 3D tatts. Hope your neck issues resolve soon!
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After my BMX w/TEs in December, I got filled to 620 ccs in only five visits. At that time I asked my PS what would happen if he put in implants the size of my Amazon-sized TEs, and I later lost weight. He said the implants wouldn't change at all. "So I'd have stripper boobs?" I asked. He kind of laughed and nodded. "I'll get back to you." I told him.
I could have had my exchange already, but I decided to postpone it to lose weight.
After my surgery, my risk of recurrence was 1% to 2%. My MO wanted me on Anastrozole (generic Arimidex) right away. I said I didn't need it. I was post-menopausal (14 years) and had already had a hysterectomy. She kindly pointed out that estrogen was manufactured in - among other things- BODY FAT!!!
So in March, I joined the Optifast weight loss program at Kaiser. So far, I've lost almost 50 pounds, and am aiming for another 10 - 15 pounds. I wanted to go a little lower, since I heard that Anastrozole tends to put weight on you. But the docs will tell me when I've lost enough. (And the MO let me postpone the AI until the Fall...)
For the first time in years, I'm working out. I do water aerobics, go to the gym, walk, and ride my bike. My fibromyalgia pain (usually a "15") is now a 1 -2 on a scale of 10. Not because of the weight loss so much, but because I've gotten off all the white sugar, white flour, and gluten.
Now we're slowly adding back in real food, and in another two weeks I'll be cleared to go into surgery again.
As I lose more weight (and padding) the TEs seem bigger and harder. Sleeping at night is very difficult and painful. It's time for them to go. I see the PS on Thursday, and will ask for the next available date for exchange surgery.
Thanks again to Kam for checking in with us again!!!!
Later, Sisters....gotta go swim.
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Wow, Blessings! You have been busy! (And I don't just mean typing that huge post, LOL) so happy for you. Hope you get the Exchange fast. Much love.
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Blessings- 50 lbs. That is impressive! Are you eating well, or is that a very very low calorie diet? I'm so happy for you. I wanted to diet through chemo but all I got back was "not a good idea." I managed to lose about 10 lbs anyway, but that was just from anorexia after each infusion, then finally getting smart enough not to eat my way back to my pre-infusion weight each time. Also a fair amount of walking. I can't remember if I have 425 cc, 475 cc, 525 cc, or 575 cc in my TE's. Whatever it is, they don't seem that big, though a lot of the volume seems to be under my arm at the moment. I know my final goal was to be a 36C or 36B, but since I'm not wearing a "36" at the moment, not sure how I can really tell if that's where I'll end up when I'm at my proper weight. I read somewhere we shouldn't have these TEs in more than 6 months...I'm at nearly 6 months now, with a nother month or so to go!
Can you tell me what comes after Exchange? Or point me to a thread where "revision" is discussed? I know of the nipple surgeries, but mostly I need to have some idea of how long I'd be out of work for each type of surgery. I will be following you closely
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Hello all. Haven't been on in awhile and thought I'd check in. Have a bit of catching up as far as posts go but I hope everyone is doing well.
I had my exchange surgery in March and have been doing well since. I actually have a followup with my PS tomorrow. He'll want to discuss nipples, tattoos and fat grafting but I don't think I want to do any of it. I'm relatively happy with the new jubblies. They take on some weird shapes when I move my arms certain ways and I always feel them. I'm figuring that's the new me, nothing to be done about it.
I've been working hard at losing weight. I'm down 23 pounds. I'd like to lose another 23 but I'll settle for 10! Gotta get rid of the estrogen producing fat! Other than that, I've just been getting on with life. Enjoying the summer and the simple things.
Take care all and I'll check in again soon! Be well. -
Kam - yes - it was a VERY
low calorie diet (mostly liquid). For four months ("Fasting Phase"), I had four shakes, one soup, and one nutritional bar for a total of 960 calories a day. It was all Optifast products, and the program was very tightly medically monitored. Last Thursday, I started the "Transition" Phase, which will last for 14 weeks, and will slowly return me to regular, healthy meals. After that, we're in "Lifestyle" Phase for an additional year of support, to make sure we keep the weight off.It takes an incredible amount of discipline, time, and money to go through the program. But nothing else had worked for me. The first thing they did was take me off ALL my medications, and now all my labwork is normal. My BP is the lowest it's been all my life. I did have some side effects in the beginning, but those have subsided. I was never hungry, never cheated, and got my big energy spike somewhere around week 3. Even though it's housed at Kaiser, the program is open to the public. You must need to lose at least 40 pounds, and you must be medically cleared to participate.
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Hey, Chrissilini - good to see you here! Glad things are progressing along for you. I think I'm going to be like you....no fipples, no fat grafting, but maybe....just maybe.....a trip to see Vinnie for 3D tatts next year. (I will probably have my exchange surgery next month.) Congrats on the weight loss!!! My MO says that by dieting and exercise, I have reduced the risk of recurrence of my ER+ cancer by another 23%.
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Goldlining - I may join you. It would be great to have a solid goal and exposure of my progress. At my best I was running 5 miles, but then messed up a toenail and used the crossramp elliptical primarily. I need to do something, it is definitely time. It looks my chemo buddy firstcall started the running thread that you referenced. He is amazing and ran the entire way through chemo. I will be cheering him on in the Boston marathon next year.
Blessings - I'm so impressed with your dedication, and your hard work is paying off. We are cheering you on too....staying healthy and reducing reoccurence is our marathon as well.
Today was my apt with Dr. Khouri. He wants me to wait one more week before wearing the BRAVA. I'm almost healed, but still a little pink under the hanging scabby things. Due to his and my travel plans, my next surgery date will be Sept 13. I was hoping for around August 16th but that will be too soon, not enough time for the BRAVA to do its magic.
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Wow; it is great to hear from everyone. You guys have been busy!
I have finished my surgeries but am dealing with lymphedema and my frozen shoulder is finally thawing. I got diagnosed with sleep apnea and have a CPAP machine. Sleeping is making a huge difference. I am swimming 3-4 times a week and walkIng and riding my bike too. Have not seen the scale move as much as I'd like but keep plugging away. I am off of gluten, dairy, soy, eggs, peanuts and sugar so you would think it would be falling off. I have tons of inflammation and edema and am seeing a rheumatologist next week after a 4 month wait for the appt.
Hang in there ladies! -
Been on vacation and returned to a lot of posts to catch up on.
Blessings-congrats on your weight loss. I gained a few pounds on vacation (all the scones and sweets at tea time in Ireland), so I'm determined to shed that and another dozen or so lbs.
Kam-thanks for asking about the shoulder, unfortunately, both shoulders are now frozen. The original (left) shoulder was improving, but now it's stopped improving and the right shoulder is very painful. It makes doing upper arm strenth exercises almost impossible and things like dressing, hair washing, etc. is painful. I stopped taking my anastrozole during vacation thinking the pain would diminish, but it didn't...
I was going to make an appt for 3D nipple/areola tattoos next month, but my bmx scars are still pretty pronounced. I've tried using oils and creams, but they haven't done much. Anybody find anything that helps diminish the scars?
Hope you are all doing well today-
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