May I join you? My last group had a big falling out and moved to another site altogether. I'm just not willing to leave this site.
Anyway, I'm almost 2 weeks out from recon, lift/reduction and feeling pretty good other than the fact that my butt is getting bigger by the day. The inactivity and Christmas goodies are a bad combo.
Warrior, did you go off Tamox during surgery?
Did I scare everyone off?
Welcome Renee! Of course you can join I am sure you did not scare anyone... just a busy time of year (I suspect)... lots of last minute shopping and wrapping.
Lilah is RIGHT on the money...crazy hustle and bustle...lol
Renee...WELCOME!! I love the pic of you and your friend. Was she someone you met in tx or is she from the boards?? My dr had me go off Tamox 3 weeks prior and 3 weeks after surgery. I am due to go back on Tamox in the next week again. I have my cycles and its weird, for the first time in a long time, I haven't had a period this month. Could be the surgery, stress or a combo of both..lol
To all my Stage 2 Warriors....I wish you a Merry Christmas and Happy Holiday!! I hope each of you are surrounded with love, family and friends!! It may be a bit slow here for a few days, but if you need me, please PM me...I will be checking periodically! xooxoxooxooxoxo
Wheeeeew. I thought it was something I said My chemo buddy is a dear friend's mother who went through chemo shortly after I did. She had lymphoma and an amazing outlook on life. We love to compare hair.
Re: tamox, neither my surgeon or my onco suggested a reprieve from tamox so I did a bit of research and they supported my decision to go off it. I'm back on now and sweating through life.
Merry Christmas all.
I gave up tamox after a year - now I can be seen to great effect all over the StageIV board while the SEs are bad and the guarantee is not 100% you really want to give yourself every chance of NEVER having to upgrade that staging
All the best
Thanks Fedilia for making a great point. The only reason I went off it, during my surgery, was the risk of blood clots. I had a tiny one in my lung after my ooph. My onco felt that going off for a short time would cause no harm. Three weeks total.
I will happily sweat my way through life if that's what I need to do. I save a lot of money of jackets
Sorry that happened Fedilia. Thanks for spreading the word. I have you in my favorites so the next time someone considers going off it, I'll tell them your story.
Hi all, I am an "oldie" with Stage 2B, and a positive node..I am now more than nine years out from being diagnosed. I finished up with my arimidex in 2007. You can see from my history, I have had many
different challenges. But I am here and wanted to encourage everyone..
Lisa...YOU are a great inspiration...Thanks for visiting us here!
For those of us on Tamoxifen, you need to request the CYP2D6 Test from your oncologist. It shows what kind of metabolizer you are. Majority of woman will be an extensive, some will be intermediate and a few will be poor metabolizers. Its important you know if you are a poor metabolizer. I tested and found out I am an intermediate. This means I carry one gene that DOES metabolize and one that DOES NOT. So, I am undercovering my next step, which is to figure out just how much that is. Mayo and Univ of Indiana are working on this test currently. Look up orange1 and her info on the test and Tamoxifen...... It is important to have as much knowledge as you can.........
Merry Christmas and Happy Holidays to One and ALL!!
Lisa... Seeing you 9 years out does wonders for my soul.
Warrior... How are you and DH feeling? I hope the holidays are good for both of you. You deserve it.
All My Stage 2 sisters... You have a WONDERFUL & HEALTHY CHRISTMAS AND NEW YEAR!
I am pretty new here and am glad to have found this forum. I was dx in June and had a bi-lateral mast in July. I was told my sentinel node was negative at first but a week later told they found a 1mm deposit with extra nodal extension. My tumor was 3.9cm and a 2nd was found as well, it was 1.4cm. I just finished 8 rounds of chemo 3 weeks ago and will begin tamoxifen next month after my exchange surgery. My surgeon wants to go in and remove a few more nodes when I do this surgery because of the node involvement, just in case. I am nervous about this and concerned about increasing risks of LE. They say if I don'twant to i can do 4 weeks of radiation 5 days a week. I don't really know what to do and was wondering if anyone knows which would be a lower risk of LE. They say the chances of finding any more positive is about 10% and even if they they find anything I won't have any further treatment because the chemo has already treated my system and that this is just to lower the chance of local recurrence. What? No further treatment? Ok, then I'm not sure I want to remove anymore. Help!
I'm new on this site. Like Renee, I was on the tamoxifen site, but needed to find a new home. Meg, I had the same dilemma, with whether to have more nodes taken out when they had to go back in for clear margins. I didn't want more nodes out, since I was very active, and have a physical job, so my surgeon had me see my future Onc. and talk to him. He said it really didn't matter since having more nodes removed, wouldn't change my treatment. I had to do 8 rounds of TAC, followed by 5 weeks of rads., no matter what. So, I opted to not have more nodes removed, and live with my decision. We will always wonder if they got it all, or if that one cell got away. It's the fear factor, and what you can live with. I'm on Tamoxifen, now, and had the CYP2D6 test, a few months ago. I'm an intermediate metabolizer.
Last week, I had my 2nd 6month appt. with my Onc. since finishing treatment. I have really bad aches and pains, all over. So he ordered a bone scan. By the time, I got back to my truck, they called me, and made an appt. for the next working day. I had the test Monday. Received an email from my Onc. that day, saying Happy Holidays, it's not cancer. Just arthritis from my shoulders to my feet. I must have lit up like a Christmas tree. He never said what to do about the pain, so I guess I just continue to take ibuprofen. But it's not cancer!!!
Wahoo Leggy!!! What a nice Christmas present
Leggy...WOO HOO..GREAT XMAS GIFT. I received a similiar gift but had to go through some BAD pain to get it...Yesterday, on Christmas, I had to spend the day in the E.R.!! I had an ovarian cyst burst....ouchy! I am basically bedridden for a few days and just managing the pain. But, the secret Santa gift was I did have a CT Scan which was normal for my organs! Normally as stage 2'ers , we don't get scanned unless there is a complaint, at least thats how my dr runs. Leggy, sometimes I hear that Tamox causes overall body aches, too. Speaking of Tamox...YOU are an intermediate metabolizer...SO AM I!! What does your oncologist want to do with the results? Are you pre or post menopausal?
Sunflower- I know how difficult these decisions can be...Sometimes you are damned if you , damned if you don't! Just remember...If in doubt, you already have your answer....hmmmm... a profound thought..lol GOOD LUCK!!!
Aw sorry to hear about the ovarian cyst burst Warrior! That sucks. Hope you are feeling better (you sure sound all revved up
Hey Warrior, except for a some spotting last month, I haven't had a period in a year, but my Onc. said Tamoxifen is the only thing between me and cancer for the next two years. I guess he still treats me as pre menopausal, and said my hot flashes were a good sign that the tamoxifen is working, and I certainly have the aches and pains. But, arthritis runs in my family and I sure have it. I just wish the report, hadn't said age appropriate degenerative arthritis. They really rub it in.
Warrior I hope you feel better, what a way to spend Christmas. Sure hope we all have a HAPPY NEW YEAR!!!! It's just got to be better, than last year.
LEGGY.....I'm so happy to see you here. I miss our old group. Great news BTW.
Regarding the Tamox metabolizing, my onco didn't recommend the text because I was having severe hot flashes. The funny thing is, I was still having them when I went of tamox for three weeks. I'll have to talk to him about that during my next appointment. Is there anyone here that's a poor metabolizer and still has hot flashes? I had a ooph.
I know this is a long shot in a predominately female forum but....any football fans here? We're heading down to Pasadena for the Rose Bowl in a few days to see the Ducks beat Ohio. Wish us luck.
Hi Renee, I was glad to see you too!!!! About tamoxifen, one time the pharmacy at my hospital, lost the renewal, for my tamoxifen, and I was all worried, but my Onc.'s nurse said it really has a long shelf life, in your system, so I'm not surprised you still had hot flashes. My Onc. didn't usually recommend the test, either, but because I had such bad bone pain, he thought it might be a good idea to find out if it's even working for me. No since in living in pain for 5yrs. only to find out I'm not metabolizing it. Plus, I think he thought I was a big baby. He's a bit of an odd duck... Now, I have the scan to prove it wasn't all in my head anyway.
I lived in Pasadena, after college for a few years, and went to the Rose Bowl, once. It was a lot of fun, and about the only time of year you can see the mountains, so it's usually beautiful. Have fun!!! Good luck!!
Very happy to find this thread! I am almost 4 months out of treatments for IDC (lumpectomy, chemo, rads, oophorectomym and now Arimidex) that included 15 positive nodes out of 17 removed. So I very much understand how frustrating it feels to have others celebrate their lack of nodal involvement. But I also understand how important it is for each of us to cling to whatever hope we can find for our own survival, and so it's easy to forgive.
Aside from opting for the lumpectomy versus the mastectomy, I have thrown every possible conventional treatment at my BC, and even some alternative ones. The rest is out of my hands, and I *try* to focus on moving forward from here.
And every single morning that I wake up and see my children's beautiful faces, I thank God for another day, no matter what it may bring.
May we all be blessed with many days to come
Oh, how sweet 5timewinner! You have so much hair! It's been over a year for me, and mine is still so thin. Bless you too!
I was diagnosed April 15th 2009..I had a bilateral mas. with reconstruction (expanders) I also had the CYP2D6 test and it showed that I am a poor metabolizer. Because I am premen. I had a complete hysterectomy and I will be taking arimidex. I will also be doing zometa every six months for I think 3 years. I also did chemo (TC) 6 rounds. I was dx with ILC stage IIa with two lymph nodes being involved. I will be having my expanders taken out soon. My question is should I not be taking arimidex if I am about to have sugery? I know I have just rambled away...but it seems thats what I do best lately. I wish you all the best...this certianly the hardest thing I have had to go through..what a journey!
I really enjoy reading everybody's posts....they do help
Hi Balsie. Wow..what a year you had!! I am not sure on the AI's. I know the Tamoxifen is recommended to be discontinued but haven't heard it for the AI's. Did you have rads too??? I had implants and rads followed, which can be challenging....arrggh
Hope everyone is making plans for New Years....weather its a quiet night in or a party with family or friends!!
5timewinner- Welcome! This is the place to come to laugh, cry, vent or just share!! No one truly understands unless they have walked the journey...You are still so fresh in your walk...do know we are ALL here for you!!
Lilah..Thanks for the kind words! When do you finish Herceptin? Did you see the movie..In Living Proof??
Hi Warrior! You are welcome
I finish Herceptin next summer. Fortunately, for me, it doesn't seem to have any SEs... so I'm ok with it. Hell of a lot better than the chemo!
I have not seen that movie. I have to put it on my Netflix list. It's the one about the discovery of Herceptin, right? I've read comments on this site about it... sounds great! I am grateful for Herceptin.
I had fll #2 today -- so far so good (knock on wood) -- only a little discomfort which advil handles well. Going to Atlantic City tomorrow to ring in the New Year! See you all in 2010!
No I did not have to have rads....Tell me what does Al mean? I will ask about discontinuing Arimidex for surgery when I go in on Thursday for my first treatment of Zometa.
Hope you all have a wonderful New Years.....We all deserve a wonderful year!
Lilah, are you from NJ?
Yeah Lauren I live in Northern NJ - up near border with New York State (north and west of NYC). What about you?
How has arimidex been for you? Any SE that you could let me know about. Hope all is going well with you & wishing for a good New Year for you.
Morris County here!
Oh we are neighbors Lauren! I'm in Passaic but right where it meets up with Morris