Any 40-ish survivors?
Comments
-
Hello everyone,
I have been on Tamoxifen since July 2011. Just started experiencing some knee joint pain, so I decided to try taking L-Glutamine powder again. I took it during chemo to help with the bone pain from Nuelasta shot and to help prevent neuropathy, and I believe it helped me then. Just started taking it again a few days ago, 5mg a day. So far it seems to be helping, or maybe it is just a coincidence. Don't know. Either way I am going to continue it to see what happens. I also take 50mg of B6/B12 twice a day. So don't know if it the combination or ???? Hopefully the pain continues to subside. Keeping my fingers crossed.
0 -
Can you all take my survey and please share it to others? It should not take more than a few minutes.
thanks
0 -
Hey friends! I'm going to start Tamoxifin and Herceptin soon--appt next week! My docs have totally assured me that I won't have like ANY side effects, so we'll see! I'm not encouraged by all you've had to say. ugh. So, I can't help.
I've been fighting this damned sinus infection--still taking antibiotics, but not feeling a whole helluva lot better. So, I haven't been on here much. I'm catching up though!
Great pic from the concert..too cute! I hope my kid wants to spend time with me when he's that age!
Lots of love to all of you!
0 -
Stacey.. I see you live in South Carolina... how far are you from Charleston? Is that the 3 hour trip to Dr Massey? She is amazing and I know women who have used her in both Charleston and she also come to NOLA and works with the docs down there... She had a patient in the NOLA hospital while I was there in August.
The DIEP usually requires just two surgeries... You have already had the BMX, right? So you would just need the tissue transfer. When I had my DIEP in August to fix my right side (so this is as close to what you would do as I can thnk of) I was able to do most things at about 2-3 weeks and could have gone back to work then but still had drains from my hip flap surgery (I did not have enough fat in abs)...
Then I will go back next week for revisions and nipple building etc... and will be out of work two weeks (luckily it coincides with Thanksgiving break)... For implants, there are many little procedures with fills and then the exchange and then future replacements, so I didn't see this as drastically more work... The hardest thing was the weight restrictions of no more than 10 lbs for 4 weeks... but I made due.
As for staying for free... You can stay at the Hope Lodge in Charleston for no cost. I highly recommend it!!
0 -
Hello ladies...
Michelle - Envious of the Winter Jam concert . Glad you made your way safely and it looks like you had a great time with the kids for which I am sure they will cherish the memory as they get older.
Profbee - I too will start Tamoxifen soon. Like whenever I go fill it at the pharmacy...ha ha..... Scheduled for squishy surgery next week (can't wait to get rid of some TE's) so I intend to start it immediately after...
Angelfromabove - Sure hope that stupid insurance company gets that MRI approved for you soon....
Had one last fill today, actually a small overfill in anticipation for surgery next week so I am a little sore & uncomfortable. Looks like I will kick back with some Advil and crap tv tonight while taking it easy....
Gentle hugs to all....
0 -
odie16, Yeah for squishies next week! Most (including me) will tell you that this surgery is a breeze. I only had minimal discomfort from my fill, usually the day of only (good excuse to do nothing).
I have been on my Tamoxifen since June, really some of us don't have side effects, or only minimal.
Getting ready for my cancerversery this week (11/11/11), must be a lucky day? Funny thing is you are the only ones that get what I am celebrating. Boy it has been a LONG year!
0 -
Betsy- I am 3 hours from Charleston. So it would not be hard to do the travel. I do not know about much yet. I have just really started looking into after reading some threads on here. I thought that I just wasn't a candidate for any flaps due to BMX and distance from doctors who do it. I sent in my information to Dr. Allen. I do not know of Dr. Massey, but I will look into her. I only found Dr. Allen by doing web searches. My thing too is will the insurance cover it since I have already had reconstruction with implants, even though they look awful. So that is my dilemma. Do I let my PS perfect what he has started or start all over again. The TE's and exchange surgery really weren't hard on me and the exchange was outpatient and I felt fine after with minimal pain. There is no question for me about having enough fat, but what if it doesn't take can they do it again? Also already had my nipple recon. done at the same time as exchange, would that all be scrapped to start over?
Odie- don't let me scare you about your squishy's, they really are soooo much better than the TE's. I was just large breasted and a larger woman and they didn't come out the way I thought. Excited for you to be a squishy!!!
Yeay! Christine! I know what you mean. I celebrated in Sept. and my husband didn't understand. He asked what there was to celebrate about in having cancer. I told him, I lived a whole year longer than I could have! So I will be celebrating with you, to be finally done with that long year!
0 -
Odie...we'll be in it together. Yeah, I have my scrip but thought I'd wait since next week I see the doc to set up the Herceptin infusions (doing those closer by so we don't have to schlep into Boston!).
Christine--thanks for the positive input for Tamoxifin. And happy cancerversary! YAY!!! A whole year!!! Everyone kept saying give it a year when I was dx. I've still got some time (March), but man...it's HUGE. Congratulations for getting through a really, really long, tough year.
0 -
Christine - love the pic of the concert, it sounds great.
I'm surprised about having scans after BMX, I thought I would be done with that?? Do I still see the BS after the BMX also?? I thought I would just see MO. I am definately not getting mammo and would prefer not to get MRI, but if that is standard, then I would. I will have to add this to the list of questions...
0 -
mamachick, I think they great thing about your surgical situation is there is not rush to make a decision. I know you are not completely pleased with your implant outcome, but at least you have time to consider your options. I know with my initial surgery, I felt rushed to make choices. I think that if and when the time ever comes that my implants need to be replaced I will go with a DEIP or another tissue transfer procedure. I would travel to someone who does alot of these and uses a skilled assistant to shorten surgical time. I do believe they would scrap your nipple, but no big deal, the big deal was loosing the originals, new ones are the easy part. Even if you have tattoos your options remain open. The great thing is we have options, we are young, happy and healthy!
0 -
profbee, thanks. Your year will be here soon enough. Get that tamox started, no rads for you, right?? Glad you don't need to travel so far for the herceptin. How is Jack this week? Both myself and youngest have colds.
Readingmama, I will see my BS in Dec, I think every year, no mamos, but MRIs to check my implants. Not sure if MRIs are needed for DEIPs, etc. Insurance is always another issue too. Have you scheduled your surgery??
0 -
Thanks for the encouragement, Christine. I am a hurry up and get it done kind of gal. I think that is why I didn't research more in the beginning. I just wanted the cancer out. I don't really care about the recon. nipples either. You are so right. Once the originals are gone who cares, can't get them back anyway. Sorry about your colds, we all have one here too. Have to keep reminding myself that yes I am still young even though I am turning 42 on Thurs. I AM still young!!! And I am happy and healthy too!!!!
I was never told about MRI's to check the implants, guess that is something I would find out about later too. Sorry I feel really negative today.
0 -
Profbee - I am sorry you are still fighting that sinus infection
I hope this last round of antibiotics will kick it to the curb! I was really thrilled that DD came to the concert AND that he had a great time. He just turned 17 in August and I will admit he is a TERRIFIC kid! He actually will hug me in front of his friends IN PUBLIC PLACES! and when we are walking around the stores or just going for a walk he will come up and hold my hand or rest his arm across my shoulders. He is my pride and joy and I just know Jack will do the same 
Odie - woooowhooooo! Yippee Squishy! I was so thrilled to get rid of those horrible TE's!
Christine - my cancerversaries usually pass without notice but I always celebrated the milestones...last chemo...clear MRI...clear bone scan...
mammachick - like christine, I will probably look into DEIP or something like it when it comes time for my implants to be exchanged...when I was first dx'd it just seemed like too much surgery and I did not want to be rushed into the decision. My recon results are great but I am always 'aware' that there is something foreign in my chest. I have heard FABULOUS things about Dr. Massey at NOLA plus she is very knowledgeable about LE and takes preventive measures to help limit the risks. She would be my first choice for DEIP but then again...who knows what kind of recon will be available in 10 years...
Meegan I was told I would be monitored every year for the first 5 years then every 2 years...I am not a huge fan of MRIs...I break out in a rash from the contrast solution and have to do a pre/post steroid regimen and of course valium just to go into the darn machine...
0 -
Hi Ladies. I've been busy the past few days and have been reading all that's going on - just not posting.
Profbee and Odie - I've been on Tamox for 3 weeks now. So SEs at all. I'm purposely not reading anything about SEs because I don't want to talk myself into it. I was already having hot flashes from the chemo and they don't seem worse.
I've just come back from 11/25 rads. My skin is feeling a tiny bit tender but overall still good.
I'm reading all your comments about reconstruction with interest. I'm seeing my PS in a few weeks but everything I've been told so far is that I have to wait 6-8 after rads for my skin to recover.
Pool News ... it is done. Yippee. We put the hose it to fill it on Friday. It took 49 hours to fill and looks fab. It was far to cold to get in though so I am just looking at it. The children were swimming on Saturday when it was half full. Yesterday the pool people came and added chemicals so we can't swim for two days. After that we hope to turn on the heat pump to warm it up a bit. After all the planning, waiting, building etc it's amazing that it's finally done. I will have to post a pic for you to see.
0 -
Yay Kiwimum!!!! You'll be kicking back at the pool this weekend!!!
0 -
My Anniversary is this week too... Nov 12
If anyone has questions about DIEP, stacked DIEP, hip flaps, stacked hip flaps, travelling for surgery, I would happily share my story... I went to New Orleans for mine... and think Dr Massey is on equal ground with the NOLA docs... Dr Massey usually works in Charleston but sometimes operates in NOLA and Utah.
0 -
Thanks for the clarification Betsy...I thought Dr. Massey was @ NOLA...good to know she is in Charleston...I wonder who the NOLA doc is I was thinking of
0 -
The NOLA doctors are Dr Dellacroce and Dr Sullivan.... but Dr Massey comes to NOLA occassionally and operates with the NOLA doctors at their hospital.. The hospital in NOLA is owned and operated by the Center for Restorative Breast Surgery.. They are connected... a small 17 bed hospital, with all private beautiful rooms, limo driver for transportation and chef who comes in persoanally to take your meal order... The nurses are awesome and flap surgery is their specialty, so they are very knowledgable.
0 -
I have been out of town and busy with other things...have not read all of the posts and am beyond the 40ish age group...but I am a patient of Dr. Massey. She did my surgery in NOLA, at Fairway Surgical Center in Covington-over the bridge from NOLA...because my Tricare Insurance is not too do-able at the Center...I did not have the Limo or Perks...rented a car, brought a friend or my husband for Stages 1 and 2 and had no trouble. Fairway has a zero infection rate when I checked them out. Small, personal and good care. Dr. Massey is amazing....if anyone wants a personal reference for her, please PM me and I will be happy to rave about my experience.
0 -
I did it. I did some exercise!
After much procrastinating and laziness I joined a gym 2 weeks ago with such big intentions. 2 weeks passed and nothing.
Yesterday I did it. Before BC I was very fit, I was a runner and regular gym goer. Now 8 months later I am larger and certainly less fit.
I was very proud to find I could manage 20 minutes running on the treadmill before feeling tired and getting the stitch. I didn't think I'd last 5 minutes.
When I got home I felt like I'd made an amazing achievement. It's the little things that make me happy nowadays.
0 -
Yeah kiwi - send me some motivation please!!!!!!!!!
0 -
Wooowhoooo Kiwimom! Please send some motivation my way too!
0 -
Nice one, Kiwimum!!
Happy Birthday for Thursday, Stacey - enjoy yourself!
Michelle - your son looks like a lovely lad/young man!
Sorry for short post, Sarah xx
0 -
Thanks, Sarah! And Yay! Kiwimum! 20min. is great!!! And congrats on the pool being finished. Have to say that I am enjoying the cooler weather though.
0 -
Kiwi mum, you sound so much like me. 8 months of hell and fatigue and unable to exercise and finally getting back to some kind of normal. I was getting impatient with myself at work-out when I could not do a single push up (could do 80 in a minute, the week before surgery) but then my trainer smiled and said 'you're doing great'. I can only shadow box since I can't have too much impact on the chest. The last time I was this big, I was 9 months pregnant. But I remind myself that it could be worse, and my chemo was curative not pallative and hopefully it will help me stay around for my 4 year old and 8 year old daughters. I will set goals and achieve them but I will try to remember to appreciate each moment.
0 -
KiwiMum - congrats on the pool being done, can't wait the pix. Now you can swim, as well as walk the treadmill! I have been walking a lot, mainly during lunch at work and on the weekends.
All, am curious about follow up for DIEP and the like with the BS. Betsy, do you see your BS? I can see they would monitor implants, not sure about own tissue though?
Christine - My surgery is scheduled for Nov. 30th! Seems to be coming up quick. I feel very at peace with my decision and am calm in that regard. Still feel I have a lot of reading I would like to do (only on 76 on DIEP thread...), haven't looked at TimTam's pix site, etc., need to get my shopping list ready, etc. Only 10 more days of work! It's hard to believe, but I'm out tomorrow for Herceptin, Friday is a bank holiday and I'm out Thanksgiving and Friday.
0 -
BrownieFranks - I have to remember that line 'my chemo was curative not pallative' when I get frustrated with the weight gain and other lingering SE's. Why is it so hard to remember that I did not have a tooth pulled or a minor out patient procedure...I had cancer! I need to remember to be kinder to myself and cut myself some slack! Now if I could only muster enough energy to exercise...even if it is only 20 minutes a day
0 -
Hi girls,
Pool party at Kiwimums!! So glad your radiation is going fairly well kiwimun, do be careful in the sun.
Readingmama, I had my BMX and TEs the week after thanksgiving last year. It forced me to get my butt in gear and do my shopping before Thanksgiving and the week of. I must admit it was nice to be done early.
I am also trying to add some exercise into my crazy days. Seems like we are pulled in so many directions, and I am still fighting some major fatigue. I have been done with chemo for 6 months, but did have surgery in July and Sept too. Ok, thats my excuse and I am sticking with it.
good night to all! I will be watching my mailbox for my invitation to the pool party.
0 -
thank you , I have 7 weeks of daily mon-fri rads. I am on week three. I have been keeping up the exercise, but I did get a terrivle chest cold that became broncitis. I went through the z pack antibiotic, but I still have the cough, and sore throat. I do have mild peeling from the rads, and the three scars from surgery are very pink, and a little sore, so I am hopeful that it won't get alot worse 0
-
Mamachick-- I am so like you-- hurry up and get it done! I had my bilateral mastectomy and reconstruction all in one surgery. But, it's important to do what you are doing to research which plastic surgeon is best for you. I'm fortunate that I live in Charleston where two of the best reconstruction surgeons practice- Dr. Richard Kline and James Craigie. It's great that you are so close to Charleston. Their success rates are some of the best in the entire country. Their office staff is wonderful as well and take of all of the insurance issues. Websites are a good way to learn more about the procedure, but I encourage you to talk to the surgeons. Dr. Kline spent a lot of time with me and made sure I completely understood everything. He so sweet and and extremely gifted surgeon- rare combination. I just can't say enough about him. I had my surgery at 49- a little more than a year ago. I look and feel great. One reason I continue to look at this website is because I have heard some unpleasant stories about women who didn't thoroughly check out their surgeons and things went very wrong. I absolutely think women should know all of their options with DIEP, only go to surgeons with experience and high success rates. So again, research and ask questions! Dr. Kline's website gives details about the surgery which might be helpful-- www.naturalbreastreconstruction.com. Good luck in your research-- hope all goes well.
0
