Class of 2009 - Sisters in the same time frame
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Was diagnosed 5 years ago today! Check up last week - still ned thank goodness!
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Ainm, great job. Keep up the good work.
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Hi classmates!!
Had my last chemo five years ago today - had a three week break before starting radiotherapy. Since then I had unilateral reconstruction in 2011 - repair to that and 'lift' to other side in 2012. Nipple recon six months later. Bit of a delay then because the dr I was attending stopped providing areola tatoo procedure so it was February this year before I got the tatoo. Had a few other hiccups along the way, some associated with all 'this' some not. Was on Tamox for three years changed to arimidex two years ago (just started getting the generic version a week ago). Have been on pain killers daily over the five years and take a daily tablet for gastric problems which are a result of the continual use of painkillers and I suffered SE's from Tamox and I continue to suffer SE's from Arimidex. Five years - does anyone else find it hard to put it behind you when you've had these kind of procedures punctuating the years and continual medication and se's as part of daily life - or am I just being negative?
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Ainm, Great to see you. did you know that Meece & Patoo got to meet in person recently?!!!!!!!!!!!!!!!!!!!!!!
So far this year I've passed my 5 yrs of diagnosis day & 5 yrs of lumpectomy. Next month is 5 yrs from start of chemo, Sept will be 5 yrs stopping chemo, Oct 5 yrs starting rads, Nov 5 yrs ending rads & best of all, Nov 16-5 yrs of Femara & I am DONE!!!!
Good to see your smiling face!!!!
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I think if you have no more tumors or lesions everyone deals with our battles with cancer or no longer with active cancer in many ways. I've been on a brutal year of chemo thinking maybe just maybe I'd be NED. I didn't get my wish. Five new tumors in my lungs, almost all spine has cancer, it's in my kidneys, spot in the liver and stomach. So next week will start another new and different treatment. I will never be off cancer drugs in my lifetime I'm told. However, I'm still here and that is all that matters to me. I have more time with my daughters, I saw my youngest graduate top of her class this year and my autistic child get her first job. I would take any medication and side effects to be here to share life and daily sunrises with them. I too take stomach medication from what chemo has done to it, lyrica for the neuropathy, nausea medications 3 different type per day and take liquid morphine as much as I need. I fought taking pain killers but I found that what I take makes me able to share and not be totally in bed with spine pain. I see myself still here 10 years from now with cancer and still fighting the fight, I've realized that this is my beast of burden but I know I can deal with it one day at a time.
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Hi, Ainm,
Another hormonal sister here! Finishing surgery, chemo, radiation in one year, I found 5 years of hormonal therapy horrible. Reading posts about I’m seeing year after year the same reiterating complaints about SE’s and heavy decisions of “take or leave it”. Most of us dare not to do it. Little help from MO’s. As I read: It might be because oncologists are really focused on the cancer. Their focus is on beating cancer and away from the side effects," which they plan to deal with "later. It’s really hard to suffer from Femara or Aromasin. On the other side is giving hope to avoid recurrence! I suggest taking various painkillers from analgetics, Nsaids to low dose opiotics. I found ibuprofen the most suitable for stomach. Please, visit hormonal forums on BCO, I found there many women, sharing their stories and information.
All the best!
Usha from Europe
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M360, Girl-you are a hero to me. I sometimes feel mad/sad/crappy about the hand(s) I've been dealt. I just need to keep this last post of yours close by! May you live those 10 yrs and more and may your fight continue full bore by your ornery self! You are awesome!
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Well if your Dr. stops you in five years you are lucky. My Dr. is going with the new study and will keep me on Arimidex for 7-10 years. I don't have quire 4 years in yet. Side effects are horrible but I manage.
My main complaint is the neuropathy and Lymphedema.
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kittydog, luck has nothing to do with it....I told her that 5 yrs was enough for me. She doesn't seem to be arguing too hard.
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I can't believe it's been 5 years! It feels like longer to me and I've forgotten so much about the day to day stuff I had to go through. I guess that is a blessing - time heals that's for sure!
M360 - You are an inspiration. I can remember reading some of your posts and praying for you. I'm happy for you that you are seeing many sunrises with your girls and planning for many more - it's always a worry for us mothers to spend as much time as we can with our kids!
Ainm - I'm on Arimidex too - switched from Tamoxifen last fall after I was DX with a mets/recurrence/or initial spread that was missed? Anyway had another round of radiation last summer to clear that up and so far so good.
As for the side effects I found the generic Arimidex (Anastrozole) gave me more than the brand name. Mind you I suffered for years with the side effects of Tamoxifen and just "coped". When the dr suggested I switch and he listed the possible side effects, I listed the ones I already had from Tamoxifen and we were both surprised.
I started on Anastrozole (generic Arimidex) in September but was having terrible headaches and lots of bone pain. After a couple of months I asked the ONC to switch me to brand name and he did.
I find the brand name Arimidex better for me - must be the fillers or something in the generic that affects me.
I think I'm doing ok coping with my "new" normal so I'm just living my life and forgetting about cancer...
At least until my next appt!
I hope you all enjoy the sun wherever you are today!
Marie
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Hi '09 'ers. I am just a few days away from 5 years.
I was diagnosed the Tuesday after Labor Day.
In some ways it has been a struggle, lymphedema and side effects, and in some way it has flown by.
I had only been married about a year, sometimes I really wish we had more pre-cancer years.
I still don't know how to mark the occasion.
I am leaning towards swimming and fish tacos.
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Cookie!!!!! Congrats. Swimming & tacos without the fish, sounds like a marvelous plan!!!
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Cookiegal
Congratulations, be sure to post on the 5 year thread, a lot of 2009 sisters will or have reached that big milestone this year.
Dsgirl
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Congrats cookie!!
Dsgirl - where's the 5 year thread please?
Hi!! Eph! !
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Hi Ainm. Yes, where is the 5 yr thread?
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thanks all!
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thanks for all the good wishes!!!!
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Ladies, I will try to bump the 5 year thread, as I dont know how to make a link
dsgirl
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hi 2009 sisters! Good to see some familiar names & faces. ♥
Congrats on 5 years! I was dx late in the year so will hit the five-year mark in Dec (G-d willing and the crick don't rise, as they say around here).
Here's a link to that thread:
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Cookiegal - congrats on five years. I think I met you a few years ago at the get together in Niagara-on-the-Lake.
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Cookie,
Congratulations on five years!
My five years will be in October, but my five years have been seven different chemotherapies and surgeries and still Stage IV. Had a PET Scan on Monday and Doxil did nothing so tumors in lungs have grown and new ones have now appeared, more in my liver and still looks like buck shot throughout my stomach, no improvement in my spinal cord either, a year on Xeloda and then Six months on Doxil gave me no improvement and tumor markers that doubled or tripled every month. So next Tuesday I start another chemo this time weekly for the next six months. Have had trouble with left lung and now use oxygen. I'm still hoping that with my attitude I get to make it to our 10 year anniversaries.
Think of all you ladies often and hope that the summer was one of fun in the sun.
Take Care
Marianne
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M360- You are one strong woman, congratulations are in order for your most amazing 5 years survival, sorry your 5 years have been so full of one treatment after another.
I bet your attitude will get you to the 10 year anniversary. Will be sure to come looking for you.
Hope the new chemo sends cancer to the curb and out of your life.
Best wishes to you
dsgirl
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Marianne, Good to hear from you. Wish your update was better but with your attitude, I feel you are living your life to the full. Not sure that I would continue treatment, but of course, I am not facing that reality, thank goodness. I hope that your family and friends lift you up & that you maintain your energetic enthusiasm! You Go Girl!
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Hi 2009 Sisters,
I've not looked in on the group in years. Mostly because I felt like it kept me in my disease. But alas, here I am to toast all of you along with myself at climbing the hill to 5! did I say 5? years!!! One of the things that pisses me off on the back side of my gratitude is how much time I've wasted in my brain thinking I was dying.....worrying about recurrence....not being able to get back to the "normal" I wanted as opposed to the new normal I am. To those we've lost and to those that continue to have to battle the beast, my hat is off to you for your continued courage and bravery.
The reason I popped on was to look into what people are doing as they near the end of life on anastrozol. Each month when I call in my refill, the insurance refuses to pay for it because the standard timeframe is 5 yrs. Some studies are saying to stay on it longer (7-10yrs). I'm not sure what to do. After all this time on a drug that gave me all the awful side effects, my body has found a way to cope and they don't bother me so much anymore. Part of me wants to stay on it longer because maybe it is what has kept recurrence away....who knows, right?
Have any of you stopped taking anastrozol? Did you feel a lot better in your body once it leeched out? Have you decided to stay on it? I am curious where you stand, how you're feeling and if there was much of a difference from being on/off anastrozol.
Cheers to all of you! Mary
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echosalvaje, I'm taking my last Femara pill on Nov 13 '14. I can't wait!!! It's the only AI I have been on & I have talked to some who have been off it who say the SE are better off. Fortunately I haven't had to deal with too many of those & when they have happened I've powered through. Congrats tho on hitting the 5 yrs. 5 yrs ago I never though these days would be happening!
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Hello Eph3 12 and Echosalvaje.
Congratulation on the 5 years.
Have you posted on the 5 year survivor thread, it was started by the Moderators, and really is a boost for many of the ladies here.
dsgirl
PS, I will try to find the thread and give it a BUMP
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Hello All!
I'll have to look at this 5 year survivor thread too. Thanks for mentioning it dsgirl.
It's nice to see familiar faces/names posting on how you're doing 5 years later. I can't believe it's been 5 years!!
I'm doing very well and enjoying life with little or no side effects from my current AI. I started off on Tamox, was switched to Anastrozole after a recurrence/met (2013) and then switched to Arimidex a few months later (my choice).
I have a follow up with my ONC next week and blood work due at the end of this week. Everything seems to be fine but I always get a bit anxious and check on here before my appts. I'm just back to every 6 months appts with my ONC again.
Mary - My doctor has told me I'll be on an AI indefinitely and since I get my RX filled at the Hospital Chemo Clinic Pharmacy I have not run into any timeline issues with insurance. Have you looked into getting your RX filled that way as well?
Marianne - I see you posting on some of the other threads I'm on and I'm glad to read that your attitude has not changed after all you've been through. What an awesome role model you are for your girls!
I really do believe it helps to keep us all going - a positive attitude and fighting spirit.
Hugs to all,
Marie
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Hi! I'm a little late to the 5 year party! My anniversary was last month. Unfortunately I didn't make 5 years, I was diagnosed with a chest wall recurrence in January 2013. It had infiltrated my pectoral muscle under my DIEP, surgery removed 4.5 x 4 cm mass with a 2.9 tumour in the middle of it. More than half of my pectoral was removed, with part of the DIEP and they didn't get clear margins. I've been on Letrozole since May 2013 and am suffering through nasty side effects including extensive arthritis. Stage 4 is definitely a different world, it does take some time to adjust. I embrace each and every good day.
What we all need to know:
"Awareness" Campaigns are not doing anyone any favours. "Catch it Early" is a myth. 30% of those diagnosed will, at some time during the course of their disease, progress to Stage 4 metastatic disease. Approximately 6% will be diagnosed Stage 4 from the beginning. That's almost 40% of women (and men) who will progress to Stage 4, yet only approximately 3% to 6% of funding is allocated to metastatic research.
I'm in my 19th year of living with BC. As the pink ribbon culture grew and matured, a common philosophy was "not to scare the newbies and lower stages". I fully supported this, but in retrospect it was wrong. No one is safe, BC can recur 5, 10, 15, 20 years later. Despite what media and medical professionals say, THERE IS NO CURE. (It's also important to acknowledge that +60% do not progress, but joining that group is a crap shoot at best.) To increase real awareness and have more research funds allocated to metastatic disease, we Stage 4 people need strong, focused support from Stage 1 - 3. Common sense dictates this is an urgent need since the true recurrence rate is so staggeringly high.
Please, for the sake of ALL of us with BC, spread the truth and help us get the needed research funds so we can live. Stage 4 is not a chronic disease, it is deadly. Yes, women are living longer with Stage 4 now, but it isn't enough. Understand the life you save may be your own. I urge you to copy/paste or paraphrase what we all need to know to whatever form of social media you use. Help to stamp out the sexualization of this disease so we can focus on a cure, not silly games and silly names that have become socially acceptable for us, and no other type of cancer. Stage 4 is no game, and it sure as hell isn't pink.
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You are all a wonderful inspiration!!! If you haven't already, you should all post on the 5 Year Survivors thread to give newbies hope and encouragement!
--Your Mods
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Hi ladies. I don't post too often these days but wanted to pop in today to say hello and thanks for all the support over the years. Five years ago today I learned I had cancer. Today I'm celebrating my cancerversary enjoing life.
I hope you are all doing well. There's a special place in my heart for all of you. Please take care
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