Stage IV NED crew : lets support each other
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Hey, ladies! HAPPY MARCH! We've almost made it through winter. Happylujah, am I right?? LOL.
Everyone doing okay?
I just had a checkup and my TMs are still within normal range! It's just a miracle I'm still alive, much less NED! Thank God and Xeloda... 8 ½ years since DX, 5 ½ at Stage IV... I am thankful.
Check in, ladies!
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Happylujah, lulubee, on your news!! Thank God, indeed!
Had my TMs taken in January and all normal as well.
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Heidi, I'm so SO glad. Us two old-timers here still alive and kicking-- isn't it amazing? Years of living with aches and pains and other side effects can be a drag, but I'm still so thankful for the meds that cause them.
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Hi there lulu and heidi, good news from both of you making this great day much brighter! NED news is the best! So pleased! I am working hard at not thinking about my next check up bloods, two weeks away and counting. Hope to be happy dancing again along with you both soon.
Anyone got any thoughts on diet and exercise? I am convinced that a combination of diet, exercise and a positive approach are plans a big part in helping me stay NED, but however mush I walk, swim and practice yoga, my body remains a bag of aches and pains, stiff muscles and creaking joints. I'm keen to loose weight as body fat stores oestrogen. but was recently moved onto Tamoxifen and no matter how hard I try i just cant seem to budge an ounce...Sigh.
Wishing happy spring days to all who read and all who share on this thread.
Boo
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lulu & heidi -- glad you got good news! I'm on an AI after having a full hysterectomy, and I'm in the same boat as you Heidi. I just did a 10k, and didn't lose any while training for it.
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Yes, it's amazing, lulubee. Us oldtimers will have to grow old together.
Nbnotes, way to go on the 10K!! That'll be a milestone for my dreams. I'm sure you gained plenty of muscle even if you didn't lose weight.
I agree, Boo, it's tough to lose on Tamoxifen. I try to eat a ton of fruits and veggies, restrict carbs and try to not eat anything after 7 pm or earlier, if possible. I take painkillers (ibuprofen or celebrex) when the pain keeps me from moving. Usually, moving helps with the pain though. Knee surgery might be on the horizon for me. I'm contemplating whether it is smart to see a knee surgeon as a friend suggested if I want to push surgery to a distant horizon.
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At my February checkup, my onc told me, "You have a hall pass for a few weeks, so go live your life and think about cancer as little as humanly possible until your next checkup."
My hope and my goal, always, is to be a cancer patient on the days I have to see doctors and nurses, and on all other days, to use whatever energy I have on that day to cultivate life and liveliness into my identity-- to wake up and say, "Today, I am still an alive being living a lively life."
That awareness is always followed by gratitude, and gratitude always opens the heart and heals. I'll take all of that I can get.
Blessings to all! Winter is fading and the flowers are about to wake up and startle us all over again. I can't wait!
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I am incredibly grateful that I am not only alive, but able to dance at this point. It makes me feel alive and beautiful in spite of everything treatment does to me. When I am dancing, I am in the moment, just feeling the joy and the energy. I feel like it could be snatched from me at any time, so I feel the privilege more intensely. I did the audition for the "advanced" group, and am now waiting for the evaluation telling me what to work on before the re-test.
Lulubee, I'm glad you bumped this thread for March. So good to hear that you and Heidihill have been NED for so long. I love the "hall pass."
Boo, and nbnotes, I think that the exercise and good diet is very good for us, even when it doesn't result in weight loss.
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I'm very glad to find this thread. While grateful every day, I feel guilty all the time about my amazing good fortune to be NED. I was diagnosed with Stage IV HER2 positive with mets to the liver and bones in January 07. I received one treatment cycle of Taxotere, Carboplatin and Herceptin, at the end of which I had a complete response. Have been on Herceptin ever since. Other than DCIS in 2011, have been NED.
I am doing volunteer work with women with mets to try to give back for the amazing blessing I have received.
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Cynanthia,
Welcome and congratulations on your great response to tx. Guilt is for the guilty, and you are guilty of nothing. We have no choice about the course of our disease. There is a great mystery surrounding why some do well and others don't. So, unless you have a secret tx that you are not sharing with us, 😉, try to let go of the guilt. Your volunteer work is a wonderful thing. Enjoy the people you meet and the good that you do
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cnanthia, You should never feel guilty about doing so well. For those of us who are not (yet) NED, people like you who achieve that status and post your news, give us hope. I read this thread often. If I begin to lose hope, the posts here remind me of what can be. I am thrilled for you. I am dancing for you. I hope that I will be able to post the same kind of news about myself someday, but even if that never happens, the joy I have for you and others who are NED will not be diminished. Celebrate!
Lynne
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Thank you all so very much for the warmth, acceptance and support. I really appreciate it.
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Just checking in with everyone... catching up all on all my threads. Had scan/bone scan a few weeks ago and still NED - three years at this point. I feel very grateful. Still struggling with aches, pains, stiffness and weight that will NOT go away in spite of diet and exercise, but I remind myself that I am very lucky. I am sure I am somewhat hard on my family as I want to do eveyything NOW, while I can.... realizing that this current state of "good health" may not last forever. I feel like I am walking a tightrope sometimes. So happy to read all of your posts.... very supportive and inspirational.
I have a question. I am wondering how everyone feels about being asked by some friends/acquaintences.... how you are "feeling". I feel like people that I know only distantly asking me is one of the hardest things about this diagnosis to deal with. I FEEL like I should be grateful that they are asking and are probably only being kind, but part of me gets so frustrated because I feel like when they see me, all they see is someone with cancer. I have a few close friends that constantly referred to me as a "miracle child" when they saw me and I finally asked them to stop....I told them about bc.org and that there were lots and lots of women (and men) with Stage IV that were very successfully LIVING with it and were just as "healthy" as I am. Sometimes I want to move someplace that nobody knows me.... am I being selfish and ungrateful? Thoughts?
XOXO
Andrea
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Hi Andi,
Good to "see" you and it sounds, scoliosis aside, that you are doing well. Living well with stage IV is a bit weird. Sometimes it's hard to believe that I have a terminal illness. I don't think most people see cancer when they see, but every now and then, someone mentions how everyone admires me. I thank them, compliments are always nice, but explain that I think I have just lucked out so far. I don't think I have done anything, certainly not anything extraordinary, to have achieved my current state. I am upbeat and always look on the sunny side, but I was always (save for the sullen teen years) like that. Life is nothing but unpredictable, what else can I say?
Wicked was fabulous as we expected. The set was a bit less elaborate as this was a touring company. The first two times I saw it, San Francisco had a standing company, it was there for a couple of years, so the set was semi permanent. Still an amazing show.0 -
So interesting Andi that you ask your question !
Today my wife and I were just taking about that and her response .
Her answer when asking "how do you feel?" Is
"I feel with my hands !"
That is a little numerous way deflects the question and you don't have to really answer it
That has been her way of dealing with it and it seems to work for her
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I usually just say something like, "Depends on the day. My intention is to enjoy every day whether I feel good or bad. How are you?"
That usually disarms and deflects all in one fell swoop. And it usually keeps people from complaining around me too much, which I like a whole lot. LOL.
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hello ladies! I feel almost guilty posting my scan results with so many having problems. But I have now made it 18 months of NED from completing chemo/operation/rads.....now they want me to thinks about getting my ovaries out. ...sigh
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Screech, congrats on 18 months! Getting my ovaries (well, I had everything taken out) actually wasn't too bad! Keep it going!
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Screech, Woohoo! Congratulations for 18 months of NED. I love hearing news like that. It gives me so much hope. You should celebrate that milestone before you make a decision about having your ovaries out.
Lynne
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Congratulations Screetch! That is great news... you should definitely just celebrate for a while....
Andrea
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The last time i went to see my oncologist he said all the bloods and scans look good! see you in three months!!! Guess that is NED
Congrats to all of you!!!
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melp27-Welcome!
LInda, 50s, Andi, etc....thank you for the congratulations~ I'm starting to actually turn the corner on this mentally-I'm thinking about it less and less and feeling more like myself. I told my onc that I'll think about the ooph until my next zometa/trelstar in July but I already think I will do it in the late fall after all the summer/fall fun is over. His words were something like "because you are doing so well I think we should consider this and it's really not a big surgery" - crazy "gold star" right? haha. LInda-thanks for the reinforcement that it's not a HUGE deal. Here's to good health for us all!
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Congrats, screech! No big deal sounds good. Lots to celebrate.
I had a good report from my onc as well and have graduated from 3 months' follow up to 6 months.
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Congratulations Screech!! Wonderful News!
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Congratulations to Screech. Haven't posted since I've joined this thread in December. Time slips by and seems I stay too busy....helps to occupy the mind. I have recently heard NED from my onc and feel extremely blessed with a little guilt. Knowing so many suffering....just have to pray harder. You all seem very insightful and thankful for each day. That's how I try to stay. Thankful for today. I'm still on Perjeta/Herceptin every three weeks and tolerate pretty well. Mostly stuff sore muscles. Achy legs. Oh well......it's working!!
Hugs to all!
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Heidi! Yay for you! I still go quarterly to see the onc, to get zometa but the pets are six months apart. If you don't mind me asking - how often do you, or do you, get zometa?
Thanks teacher and babyduck!
I'm a bit achy/stiff, but I sort of had that to begin with, but it doesn't seem as bad now as it did a year ago.
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Screech, I'm headed for the ooph too. I was hopeful Lupron would do the trick but my ovaries are being difficult. Thankfully my last scans still show NED. It was 1 year for me in March.
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I had Zometa for 5 years at longer and longer intervals until it was an annual thing. I switched back and forth from Tamoxifen to AIs after that so my bones didn't need the extra support from Zometa. That's my guess since Tamox strengthens bones for postmenopausal women. My last scan was a year ago but I was having my tumor markers and other lab work done quarterly. I think he's now waiting for a change in my tumor markers to do another scan. I'm happy with that.
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Thanks for the info Heidi. So if your blood work stays cool then you don't have to get more scans-that's fantastic! Maybe we'll do a meet up in Karlsruhe someday-I'm trying to figure out my summer schedule but there is so much going on-all good-weddings, graduations, etc!
Goodie-they give me trelstar and apparently it's working great, I don't have to get the oooph, but the oncologist thought it would be one less medication-and I'm on-board for that!
(and ps-congrats on one year)
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Another good checkup! I've been NED for almost three years.
Question for you: Does your oncologist use the term "remission" to describe your status?
Yesterday my onc (of almost 9 years) said, "So you are still in clinical remission!" It sparked my curiosity because I have read here on the boards-- some years back, admittedly-- that the term remission does not apply to MBC, that we say instead that we are NED. Obviously some oncologists do not see it that way.
So I am wondering why some see a distinction between the two terms. I googled it, and came up with several MBC sites that apply the term "remission" to BC metsters who are NED. So I wonder if the tide is turning on terminology.
What is your experience?
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