Hormonal Treatment for Stage IV
Comments
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Dear Caryn,
My daughter picked for me - the grandmother name- It is GoGo. I have since a child been pretty hyperactive...At that time nothing was called ADHD. I still stay on the go all the time...The family named me GoGo. Actually it fits well. And of course like the rest of Boomer grandmothers I did not want to be called Grandmother for goodness sakes....signing out from Nashville. GoGo
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Hi Essexman,
I have been on taxotere and it is a difficult drug to tolerate. I was on it in 2009 and did not hit stage 4 status til this spring so it was probably worth it. BUT the nickname is taxoterrible soooooo but I knew a lot of women on the thread five years ago who actually worked 40 hours a week on it! everyone has an individual reaction but I started having difficult breathing so I did 4 out of 5 rounds and called it a day. Good luck!!!!!!!!!!
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Carolyn,
I love Gogo and the story behind it. I got to choose my own grandmother name, but dd had veto power. No, I was not about to be called granny!
Caryn
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essexman- I did taxotere when I was first diagnosed with stage 2 and found it very difficult like Valerie. I do have a stage IV friend who has been on a few rounds of taxotere following treatment failures on several regimens. She finds it easy to tolerate and has has such great results that they have decreased the frequency of the taxotere (significant regression and lowest tumor markers to date). I know an acquaintance on xeloda who has been stable on it for a while. Best of luck to you and your wife. The biggest challenge for me on taxotere was staying properly hydrated. I felt significantly better with fluid infusions.
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Dear Caryn,
I really really like your comments...I feel as if you and I are kindred souls....Thank you for your comments....You are a special person and I hope to meet you some day...And if not....well at least you know that someone out here is your friend....If you head South, come see me in Nashville, Tennessee. Carolyn from Music City By the way I spent all of 2008 living in Long Beach, N.Y. It was one of the most wonderful experiences of my life....I am beyond Southern and yet I love New Yorkers particularly those who live on Long Island....those dear people looked at me like an alien that a gal from Nashville would move to Long Beach, N.Y.
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Carolyn!!!
I just read your post and it made my day. Thank you so much for saying such lovely things and may I say the feelings are mutual. Trying to imagine a Southern gal on Long Island is quite funny, but yes, there are some lovely places there. Some of my favorite childhood memories are summer days spent at Jones Beach. Believe it or not, I have never been to Nashville but would love to go there someday. Here's a precious grand baby story for you. My younger dd and SIL, who have been living with me since January, just bought a house and have been moving in this weekend. Older dd, was bringing dinner over to feed all the hungry helpers, so I drove over there. I walked up to the door, rang the bell and almost fell on the floor laughing when the door opened and my little (almost 2 1/2 year old) granddaughter, with a sweeping arm gesture, said, "Come in, come in". I guess she though she was the mistress of her aunt's new house! Take cars.
Caryn
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after being bc free for 5 yrs i was told i had stage 3 squamous luung cancer. I thought great. Here we go again. So imagine my horror when they do a biopsy on the lymph nodes in my chest and it turns out its my breast cancer. No chemo but he did put me on faslodex. Does anyone else take this?
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after being bc free for 5 yrs i was told i had stage 3 squamous luung cancer. I thought great. Here we go again. So imagine my horror when they do a biopsy on the lymph nodes in my chest and it turns out its my breast cancer. This time stage iv instead of 3. No chemo but he did put me on faslodex. Does anyone else take this?
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They told me that my prognosis was better since my lung tumors were breast cancer instead of lung cancer. Breast cancer tumors have so many more treatment options. In my case though, I have brain mets too so whether I was lung or breast I was Stage IV.
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Hi SusaninSF - good to see you on the thread. Was thinking about you this morning for some reason and realised I hadn't seen you for a while. Was hoping you were doing well.
Regards,
Terre0 -
DebbieC there are many of us here who take Faslodex. We are affectionately called the "Fanny Pack"....bottoms up girls! I tried to copy a link, but I'm not sure I got it to work. I'm a little tech challenged :-)
Come on over and ask your questions, as there are many ladies who have been on Faslodex for quite a while. I have been on it for almost a year, and my scans last month showed no progression, so I am thankful to have this treatment available to me.
((((HUGS)))) Birdlady
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Hi Debbie, I also have BC in my lungs and on faslodex. I just finished a series of 2 shots x 3. I'm wondering if I will now progress to monthly doses. I see onc on the 20th. My first BC was 28 years ago with a mastectomy and no further treatment. I became stage IV in 2011 and just finished 31/2 years on arimidex. Caring hug, Nancy
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Thanks Terre!!! I'm doing quite well! Went to the Ocular Oncologist and for the first time they are seeing real progress. My eye tumor is shrinking and there is a lot less fluid. I have had a lot more energy and my lungs have been feeling good.
Hope you are doing well too!
Hugs, Susan
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Very good to hear SusaninSF! I am still doing well on my drug trial and yes I also think that most days I have a lot more energy! Lungs may be slightly better .. seems so when doing stairs.Cathy
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Hi all - just checking in here after a break from the boards. I've been on Arimidex for the last year. Xeloda for the past year and a half. The pain in my muscles and joints has gotten really bad, and I'm convinced it's from the Arimidex, because it started a few months in. The doc has given me Vicodin to take and also wants to change me now to Femara. He says if the switch helps, it could take weeks to show improvement. I am so doubtful that it'll make a difference. I mean, the meds have the same action in the body, so I don't see how switching from one to the other helps anything. But I will try it.
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Liz,
I was on Arimidex for over 2 years and joint pain had become almost unbearable. I switched to Femara almost 8 weeks ago and so far, so good. I know these meds are similar but many who've had difficult se's with one have switched and done better with another.
Caryn
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Thanks Valerie:It appears that your treatment plan is nearly the same as my wife's plan. We would like to find ways to extend living for a few more years. I'm constantly searching for promising new treatments.
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Susan and Cathy - great news!!! I am so thrilled for both of you!
I needed some good news today. I'm feeling whiny and rather pathetic.
I'm just sore, sore, sore. And I have my MO appt next week, so I'm always (emotionally) a mess right before I see him. I am going to see if I can switch to Tamoxifin for a few months if everything is stable and see if I can get my joints back to semi-normal, get some exercise and lose some weight, and then go back to Femara. I'm partly sore because I overdid it at work and I forget I'm not 25 anymore. Hugs to all,
Terre0 -
Liz I was on Arimidex for fifteen months and it nearly cripples me! I can say thank goodness for a progression as that got me changed to Femara and literally within a few weeks I felt like me again! There have been a lot of women who have changed between the AI's due to SE and found that the change has been better for them........there are also others that have changed and found there was no change. All we can do is try and hope for the best.
Goodluck!
Love n hugs. Chrissy
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Caryn & ChrissyB - Oh thank you for telling me this. There's hope at least. Ok...I'm switching TODAY! Maybe I'll have the same luck. I've been feeling really down and mostly frustrated, and am so happy to hear that a switch can work at least some of the time. I've had this debilitating pain for just over a year now, and it's on my last nerve (no pun intended!).
My pain is really bad. When I get up from a sitting position, I can barely move because of the stiffness and pain. You'd think I'd been sitting in the same position for days to see the stiffness. Even the BOTTOMS of my feet hurt when I first walk on them! I was like, how is that even possible? Turns out, in my research I've found that's actually a common side effect of Arimidex! Who knew.
Thanks again for giving me some hope! I will post progress here to hopefully help others having the same/similar situation.
Love & Gentle Hugs,
LL
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Good for you Liz! Hope you do as well with a change as I have. There is always hope when it comes to meds, SE and trying to minimize them.
Yes please, do keep us in the know as to whether you are feeling better.
Love n hugs. Chrissy
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Hello Ladies,
Thought I'd add my 2 cents worth
I was diagnosed with infiltrating lobular carcinoma, grade 3 in November of 2009. After the 1st biopsy, I literally watched it spread to my nipple. The breast surgeon my primary care doctor referred me to wanted a second biopsy and wanted to refer me to my old oncologist to work on a "plan". I am a lymphoma survivor (made it 4 years) after R-CHOP chemo (lots of SEs). They spoke without the MO even seeing me and "decided" I should have a sentinel node biopsy. I stewed on that for a little while and decided I wanted a second opinion. After all, I saw the MO every 3 months and reported my severe and lingering fatigue and bone pain and she never picked up on it. It was then I made the best decision of my life. I made an appointment for a consultation at a breast center - this one has an "excellence" grade. My first appointment was the Friday after Thanksgiving, by this time the mass had grown horribly large (8cm). I told him about "the plan" starting with a sentinel node biopsy. He was surprised they did 2 biopsies and said he would rather do a PET scan to get a better picture of my status. I had the scan that Sunday and met with my MO for the 1st time. It was then I found out I didn't pass go but went straight to Stage IV with bone mets to sternum, cervical and thoracic spine. I began taking an AI (anastrozole) that day and received my first shot of Xgeva to protect my bones. I also take 5000 iu's of vitamin D and other supplements recommended by the Naturopath on the "team". The next appointment (March 2014), my breast tumor had shrunk to 1 cm. I had another PET scan the Sunday before my latest appointment (7/13-7/14). I am now in remission. My MO told me to think of this as a chronic disease, just like a diabetic or someone with COPD. He has patients who are in their 2nd decade of remission. I've found that physical therapy and gentle exercise help with the bone and joint pain side effects. There is nothing but a fan or a cold shower that will cool those hot flashes, but I'm good with that. Much better than the alternative. Now I not only believe I may see my son get married (in 2 years), I may be around to meet my first grandchild! Hugs and prayers to all of you as we continue on our journey. Stage IV doesn't always mean it's hopeless!
Sharon
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Hi Sharon,
So glad to hear that you're doing well. There are a lot of opinions on this forum, from lots of intelligent, critics thinkers. I do think that since the survival rate for MBC is still only in the 1-2% range, that for most of us it will be the cause of our death, eventually. 1-2% is barely statically significant. Although it can be treated chronically, i.e. for many years, I wouldn't put it in the same category as diabetes and COPD. Still, I am optimistic about treatments coming down the pike and hope we all live long enough to see them. Here is a thread you might be interested in.
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Thanks for the link. I am under no illusion that this will kill me if something else doesn't first. I don't expect I'll be in that 1-2% that survive this. That said, women are living longer with a better quality of life than they were even 10 years ago. My aunt (by marriage) died of complications of diabetes, not before it caused her to go blind. I'm just at the start of my journey and I will continue to hold out hope that I'll be around a while to live, laugh, and love. Every moment, day, month and year I can spend with my family is precious to me. Here's hoping we all can embrace the time we have, fight this and hold out hope for a life measured in years. Looking forward to my first BC "cancerversary"0 -
Great attitude, Sharon! I think being positive helps - if not the length of survival, at least in making the most of the time we do have. The statistics aren't reliable, but the chances of 5 year survival are more than double what they were a few short years ago. And no one knows what tomorrow may bring!
Hugs to all,
Terre
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Dear Kiwi, I am sorry you are so uncomfortable! When I have days permeated with pain whiny is my good side! I can get downright mean! We have plenty of reasons to feel a tad pathetic at times...we can feel sore, tired, stiff, scared, confused, misunderstood and did I mention sore? Some days it is very hard to put our happy face on or even our whatever face. Just remember that you can come here and whine or bitch any time you like. We each take our turn and we all listen and support! I'll be thinking of you as you wait and have your MO appointment! Positive vibes, calm thoughts and deep breathing!
Virginia
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Thanks for the kind words and encouragement, Virginia. It means a lot! I'm less sore today and life looks better. Being able to vent and whine sometimes does help get it out of my system. And feeling understood means even more.
Most of my friends and my husband are in denial and basically don't want to hear it. They're not without empathy, but it's hard for them to hear, I think, because it forces them to face my reality. Once I have finished packing up and moving (the movers come on Monday), I'm sure I'll feel better. And after I see the MO, even better yet!
Hugs,
Terre0 -
KiwiCatMom -
Is there a place that I can find stats that say the 5 yr. survival rate has doubled? Everything I can find says 2.5/3 yrs. is average survival rate from diagnosis.
Thank you,
LL
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LizLemon - not sure about the Stats because I don't believe them. On Monday (8/18/14) I will be 6 years with Stage IV BC. Living a wonderful, productive life while on treatments.
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Bourscheid - I agree. That said, MD Anderson's stats from last year said 40% chance of five year survival from diagnosis. Previously, the statistic was 20%, but they have bumped it up to 40%, which I take as a really good sign. Note that the statistics are not current, they do not take into account all of the recent advances, and are typically based on median survival, which means it takes into account all "phases" of Stage IV at diagnosis. What I mean by "phases" is someone with a few bone mets which are easily controlled by AIs, to someone who was much more advanced and harder to treat when diagnosed. From what my oncologist tells me, he has 12 and 14 year survivors who were diagnosed at the same "phase" as I am and who were also ER+/PR+ and relatively easy to treat. He doesn't see why I won't be around at least that long; he reckons it may well be longer because things are advancing so fast.
So, I wouldn't spend much worrying about stats except to note that even the caveats noted above, the estimated survival rate has doubled - and is likely more than double what it was before.
The best advice I've gotten with regard to statistics was from a coworker who's mother in law was diagnosed with "terminal" cancer with "one or two years" and she prepared to die. Refused to go anywhere, do anything, etc., because she was dying. Ten years later, she finally had a stroke and checked out. Wasted a lot of time not visiting her children and grandchildren, not enjoying life, and waiting to die. So, rather than dwelling on 'average' lifespan, statistics, etc, probably better off figuring out how to live as happy a life as possible despite the diagnosis. Easier said than done, but I figure I can be as happy or unhappy as I make up my mind to be. And as my husband says, "always remember there are lies, damn lies, and statistics."
Hugs to all,
Terre
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