Hormonal Treatment for Stage IV
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Marybe,
I am wondering if people taking femara or other al's and also taking those med's will have similar ineffectiveness of the al's. Honestly I think every little bit helps in the fight against cancer and this is like a kick in the gut.
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Dear Marybe:
Hi, it's Lindy and I'm back again!
Last night I had some time to go back and read postings from 2009. When I read your experience with your first oncologist, I was deeply saddened, but also angry. I have three node negative friends (all diagnosed in the late 80's) who were given Tamoxifen, are still on it and have no mets. I do believe my first oncologist helped me live by giving me Tamoxifen and that was two years before your diagnosis. Although we can't go back, it's sad that these things happen to so many of our BC friends. I do believe that hormonal therapy for ER+ PR+ HER2- patients has to help. Our cancers need the hormones to grow, so why not take them? If you're child bearing age (which I was) and want another child, then hormonal therapy may not be the answer (as it throws us in to menopause quickly.) We have lost 5 women from our original Under 50 Stanford Breast Cancer Group ( which was 20 yrs. ago) who complained of pain and symptoms to their oncologists and were not treated in a timely fashion. Three had small children and their symptoms were obvious. Janet was 34 when she died and complained for 3 yrs. without getting a second opinion. By the time someone listened, she had mets to her lungs, brain and liver. She was ER+ with one node and was not given hormonal therapy. As you can see, I'm pro-hormonal treatment for all ER+ HER2- breast cancer survivors. I'm a little past 4 years on Aromasin/Zometa and always wonder what the next PET will show...it's scheduled for May 11th and I see my oncologist May 13th for results. I don't understand why you were never given a PET Scan, as they are so conclusive.
I'm sure that Harley has been right there with you. I have two Himalayans (Sushi + Nat Nat the Nantucket Cat) who are my constant companions. We were fortunate enough to vacation in Nantucket when our son Matt was going off to college and our daughter was 7 mos. pregnant. It was 2002 and I thought I was cancer free...little did I know that year. Hydrangas grow wild on Nantucket Island and are a sight to behold...all colors everywhere. I do know we're only sorry for the things we haven't done and there are so many things I still want to experience. I often think that if I had chosen to have radiation it would have killed off that one node, but we only have today and hindsighting (like worrying) is counter productive. I know we're on the same page about LIVING and everyone is terminal, but what you've been through is unreal. I've lost three girl friends before they were 50 from gram negative sepsis, leukemia and and an embolism. They all thought I would die first because of cancer and worried about me all of the time. I do miss them so very much.
You're a brave, inspirational lady with a phenominal attitude and I'm sure that has helped your survival. The fact that you've never missed a day of work with all the meds you've been on is amazing...you are truly an inspiration. By the time you read this, you'll have had your scans and I do believe in the power of prayer. I know all of us have asked "Why Me" yet continue with the "hand" we are dealt. We all need "joy" in our daily lives and sometimes that takes "work." Again, thank you for sharing your story. There are so many others that my heart goes out to...I'm there with you ladies and I care.
Much love and many hugs,
Lindy
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Anne, I have no idea if the other AIs are affected by any of those drugs or not....I do know that my onco had me on paxil when I was doing aromasin and the aromasin worked. He had me try a lot of antidepressants because they were supposedly helpful in reducing hot flashes....they did not. Also they always had me take benedryl as premed before my scans, but that was never for an extended time period.
Lindy, Thank you for your kind words, but I honestly do not think I am any braver or have reacted any differently than most women in the same position would have. I have never been one to sit in a corner and think Woe is me and I certainly am not one to take to my bed. I am a BAAAD patient in that respect. When I was in the hospital for a PE the doctor came to check me while doing his rounds and they could not find me because I was in the computer room. When he did see me, he said You want to go home, don't you? and I said I sure did and he said well, he guessed I could get my lovenox injections at the office until they showed me how to do them myself so I got to go home.
The one time I was feeling very un-positve was when I found out I was Stage lV and read a little bit about it. I was certain I was going to become a statistic, but with each year that goes by I worry about it less. I consider myself to be very fortunate in that I have responded favorably to almost every treatment I have been on. Am not so positive now, but knew it was only a longshot that the hormonals that worked for me in the past just might work again. Oh and just to show that I am not really brave at all, I did NOT go for my CT on Monday. I put it off until Friday because I didn't want the results to ruin my weekend. I am getting the bone scan done this afternoon and my onco will have the results when I see him Wed. morning. I am hoping to pick up copies of the reports myself tomorrow afternoon because I don't like surprises adn if it is a written report I can see right there on paper what is going on. I think it is BS the way they make people wait a week or more for their scan results...they read them right away.
There was talk of putting me on tamoxifen, but it was still in the trial stages and they told me it would only reduce the chance of recurrence by something like 5% ( don't quote me on that, but I know it didn't make a huge difference) and there was very little reason to believe this would happen since my tumor was less than a Cm, and all 19 lymph nodes they removed were negative. And if the cancer did come back and they used it as preventative, then they would not be able to use it for treatment and it was the lst treatment my current onco put me on and it did work in shrinking the tumors. Of course I would have been much happier if the tumors had not come back to start with, but there is no point in crying about that now. I do think that had they done chemo, it would definitely have kept the cancer from coming back, but they did not see the need for that and naive' me was happy to hear that. And the rest is history.
Harley has only been with me about 1 1/2 years. It was my first Silky terrier, Sydney who went through everything with me. I got Sydney the week after my reconstruction was completed because I wanted to wait until I was over so many office visits and would have the time to raise a dog. He was the sweetest dog ever TO ME, but I hate to think of how many people he bit...he even got two mailmen. He was the best dog ever and I still miss him. He lived to be 17 1/2 and developed oral cancer of all things. I felt terrible, being a dental hygienist, that I didn't discover it, but he had a tumor before in his prostate and it most likely had metastacized from that. Harley is a sweet little dog and I love him, but I would not have gotten another Silky had I not seen him on Craigslist. Craigslist is my favorite place to shop and I have just about furnished my Dad's house off it....my friends think it is funny how I am making trips all over the state to look at some treasure I found on Craigslist. I love finding a bargain.
I feel very very fortunate to have been Stage lV for as long as I have and to have been able to work and pretty much carry on as usual. But in reality I am no more brave or amazing than you or any of the other women on these boards. I have learned a lot on here and feel as if I have made some good friends, friends who can relate and know where I am coming from. There have been some women who have posted about things they have have endured and I just shake my head in amazement. They go from one treatment and then on to another. I was a coward and quit my chemo after 22 treatments because I just felt I could not take one more treatment, was afraid my neuropathy would not go away (it has not totally). I have a good friend doing chemo now and she has only had 2 treatments so far and is not dealing with it very well so far.
Hope you all have a great day. It looks like it is going to be a beautiful one after our weekend of rain. Get my injection for the bone scan at noon so have to go get ready for that. I will keep you all posted.
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I am like you I have dental issues. I also would like to know more about bonefos. I have to go
back to the doctor this week. He is going to want to put me on Zometa. I do not want to go
on Zometa for one because I have dental issues and the side effect. Also can have bad effects
on your kidneys.
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I have been on zometa for about 9+ years...aredia before that. My kindeys are fine. I would express your concerns to your onco and tell him you already have dental issues. I think it's if you have an extraction that you get into trouble.
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As a matter of routine, I have my entire meds list on board with the pharmacy, the onc's office and my psychiatrist's office - whenever any medication, supplement, over the counter or otherwise is added to my regime - I have them run the program. The pharmacy will conclude that your office issuing the precription will have already done the interaction program - if it is over the counter, you will have to request that it be run at the pharmacy. Just because we are in the computer age - do not take it for granted that information is shared between all your treating physicians - HEPA laws prohibit certain accessibility and it is truly up to the patient to be certain that ALL your meds are listed everywhere you are treated. I keep a typed copy of the list on my computer and print it out anytime I am going to see a new doc or re-visit one that hasn't seen me in awhile. It is my life and I am the one who is managing it.
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Before going on the zometa or any other biphosphonates (sp) - have your dental work done first. Cleanings and regular checkups and fillings do not seem to pose issues - only the more intensive dental work. I have advised my dentist of my medications and if an issue should arise, we shall have to look at the options BEFORE doing anything - consult with the onc.
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I think I must be in the same study-Arimidex alone or *rimidex with Faslodex. I started on Arimidex 2 yrs ago and it's still working. I was originally dx'd with DCIS in 1982 at age 41. Tumor was 1 cm. Had a single mastectomy thinking it was the only way to be sure it wouldn't come back. But it did anyway. They didn't make me do chemo or radiation. 26 years later, two yrs ago dx'd with stage 4 with mets to liver and surface of lung plus a couple of mediastinal nodes. Onc got me into study right away and have been on Arimidex ever since. The worst has been the hot flashes. They have been killer intense. Took Effexor for quite a while but didn't like the sexual side effects that come with SSRI's. Am now on a clonidine patch, and that has kept them at a bearable level. I have noticed that I get several when I go to bed so will try taking Arimidex in the AM. Weight gain has been a problem. Also have a lot of stiffness in feet and knees when I haven't been moving for a while.
But here's the good news. One liver tumor is gone. A 2nd is barely visible, and the largest has shrunk from golf ball size to pea size. The surface of my lung is much less lumpy, and the nodes look normal. Tumor markers came down to normal and have stayed there. Onc says he thinks the Arimidex could work for many years because of the way I responded--that is slowly but steadily. I'd sure like to be NED, but I'm pretty happy with where I am. It does worry me that I :have read that mets to liver have a much worse prognosis than bone mets. But I get the pep talk every month from onc and forget to worry.0 -
Spiper,
In my humble opinion mets is mets. From personal experience and being introduced to quite a few ladies with Liver mets it is very treatable. I worry more about my bone mets than the lesion I have on my Liver.
I have been having a real hartime with my bone mets flaring. It is no joke.
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spiper41 - wow, I sure hope I can get 2 years from Arimidex! That would be sweet. And so glad you are getting excellent results - keep going girl!
Renee - I still only have it in my bones and although my scan were mostly good - there was one area flaring a bit and blasted...it hurts like a MF! MRI soon to determine if we want to hit it with some rads.
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Through the port. Port been in for 6 years.
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Hi marybe:
I've been looking for your May 5th results, keeping positive thoughts for you daily. Please let me know how you're doing. Your constant positive attitude is an inspiration, regardless of your humble reply. So often, my heart is heavy when reading about the physical and emotional pain of my Stage IV friends. This website is a blessing. When I feel alone (even though I have a supportive family and friends) you all know what I mean by "feeling alone."
Love to All,
Lindy
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Lindy, I am sorry to have kept you wondering, just don't post too much on the hormonal board since I guess that part of my treatment is over (for which I am very sorry since when it did work for me, it did a wonderful job with so few SEs) I showed not only a 1 cm increase in the liver, but also many new bone mets and progression in the existing mets...SOOO, it's back to chemo and I had my first treatment of navelbine yesterday and so far so good. Infusion went smoothly, they gave me aloxi in the IV to combat any nausea and I know it is too soon to tell, but so far no SEs. My onco assured me this is a gentle treatment so we shall see. I am very happy to report that last night I slept, really slept, and that is something new for me and something I needed. I only woke up once and that was to go to the bathroom and then I went right back to sleep. I don't know if I have been worried and now feel we are doing something that will work or if the navelbine made me sleepy or what, but I am just so thankful I got some much needed sleep. I never thought I would be happy to go back on chemo, but when I saw all those lit up white areas on the bone scan it really scared me and I am no longer looking at chemo as the enemy, but as something that will possibly get my cancer back under control. I will keep you posted. Thanks so much for thinking of me....I do believe in positive thoughts and prayer and have a lot of people helping me out with those.
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Hello everyone,
My name is Vickie and I'm a new BC club member on April 26, 2010. My tumor couldn't be seen on mam, but it could be seen on ultra-sound, so I'm thankful. It has mets to my lymph nodes under my left arm, in front of and behind my collarbone and in at least 2 lymph nodes on the right side of my breastbone. My cancer has only been there apparently for 4-6 my onc says, and quite aggressive. I'm just sick in my heart. Terrific husband, 16, and 18 yr. old sons. I don't have any symptoms except my lump in my breast. If I hadn't lost 26 pounds, on purpose, I wouldn't have found the lump. Today, I didn't sign to take part of a study that would do 2 chem's Avastin and something else, I'm going to do a double masectomy (excuse the spelling), removal of both ovaries, and start the Tamoxifen. What I'm wanting to know is --Is there anyone else who is doing this, or has done this and has lived longer than 3-5 yrs. My God is so powerful, I wish and pray that he will "show-off" just a little bit and save my live--I would love to hold my grand children one day--Any advice--am I making the right decision-new to the BC scene and especially the scene of stage 4.
Vickie White
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Hi Marybe
Count me in with prayers!
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Hi Vickie
I am sorry you had to join our special group and I am welcoming you with a big hug. I know how scary this is..I was diagnosed Stage IV on 4/8/10. I can't answer your questions but I am sure someone will come along soon with some advise. These ladies are very knowledgeable and very special. I did Tamo for 5 years after my chemo and tolerated it well. Started Femara last month to battle the mets in my neck.I'll be praying for you and sending lots of positive thoughts your way!
Hugs!
Robin
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I am assuming an oncologist recommended the double mast, and tamox afterward? So that means you will be using the tamoxifen as treatment rather than as a preventative, correct? They used tamoxifen as treatment for me when my cancer recurred and it did work in shrinking my tumors, but eventually had to move onto something else. I kept my ovaries and do not recall anyone ever suggesting I have them out although I know many women have....is that what they call an ophrectomy(sp?). What do they say about the lymph nodes...do they feel tamoxifen will work on them? Sorry I seem to be asking more questions than offering information. Don't lose hope as there are many many treatments out there.
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Hi Vickie,
Welcome aboard. I am so sorry you have to deal with this dreadful disease but dont give up hope. I had stage 2 ILC with 2 nodes positive in 2003 and I have been stage 4 ILC mets to bone for over 3 yrs. I take Zometa infusions every other month ...was every month for 3 yrs...and I also take Aromasin. The tumor on my spine was the size of a large marshmallow and Aromasin and Zometa shrunk it so it could no longer be seen on scans. I am doing ok and hope that you will too. A word of advice...ignore the statistics you see on the internet. With the treatments we have and/or the combination of them we can live a long time. My oncologist has told me I could live a near normal life span and I plan on it. Hugs, Mazy
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Hi Mazy
Thanks for the post...you made me feel better! I see you are also ILC..not alot of us girls around. I am on hormonal therapy right now...my mets are in the lymph nodes in my neck on my affected side I plan on being here for a long time too, now that I have seen from all these women that Stage IV doesn't translate into "next weel". I'm sure our paths will cross again. Thanks and take care
Robin
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Hey hormone treatments have kept me stable (or almost stable - very slow progression) for 3 yrs. I spent a year in chemo then when stable started tamoxifen and when I progressed again, femara. I have had a tiny little bit of progression in my lungs but have not seen the doctor since the scan - so any results are not official.
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Hi Dreamwriter
So glad to hear you have been stable for so long with hormonal. I am sure that after I get thru my first scan after dx, I will settle down some...but for now, it's still all new but I am learning quickly!
Thanks dreamwriter. Looking forward to seeing you again.
Robin
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Well, change of plans! My onc surgeon didn't want to do the double mas, and now I'm waiting to be seen by a new onc at Emory's Crawford Long's office--this gives me new hope. I go on Thursday morning--haven't started any treatment yet-can feel some pain in my breast tumor is in, and different pains under my right arm. or am I just scared! I don't know what to do--I just want someone to help me, give me a plan and stick to it! I'm really excited to go to Emory, I just wish and pray that it was tomorrow and not Thursday-but I'll take Thursday. Glad to hear that there are more out there like me--I don't feel quite so lonely--I just wish I could have started at stage 1 or 2 and not jumped right in to 4. But that's water or tears under the bridge now--I just want to LIVE!
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Hey there RamblerMom,
Nothing like the old cancer whiplash is there??? I am 44 and was diagnosed with a low volume of mets to my lumbar spine last fall. Prior to discovering the mets, I was slated for a mastectmy. Just when I got my head around that, the mets were found and my first oncologist suggested I would start with chemo. ... and then I met my current dr. (and also had my complete pathology report). She had me start with tamoxifen (still on it) plus zoladex (ovarian suppression as I am premenapausal) and zometa (bone booster). So far I am stable. Because things are stable, I was able to have the mastectomy last week. (Just a relief to have it over with.) Anyhow, I can't offer a lot of advice I haven't been at this too long, but just wanted to say hang in there.
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I have also just been dx 2/15/10 with mets to my liver and bone primary in both breasts. Once they found that it had spread they said no to surgery and started treatment with Tamoxafin and monthly Zoladex injections, I am 47. I have only been in treatment now for 4 weeks so it is too soon to tell if it is working. I go back May 27 and hopefully we can see something in the blood tests that it is working. I feel fine, would never know. I also take 2000 IU of vitamin D a day, had my vitamin D checked last blood test will find out next visit how it is. I plan on living a very long time and had time now to get my mind around it and I'm fine mentally, wish I could say the same for my husband. The way I see it people die every day, on their way to work in a car accident, allergic reaction things just happen, you just cant think about it go on with life. If we kept thinking about it no one would ever leave their house. I am very comfortable with the no surgery option and have seen other women on this and other sites with the same treatment that have been very successful. So far the only SE is hot flashes at night, and each hot flash is fine with me because I know its working.
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I'm 42 and I was diagnosed in March 2010 -- left breast and 4 places on the bone (2 on the spine, right hip and left arm). I was originally scheduled for chemo until the PET scan results came back with the bone spots. I've changed over to hormone therapy with an oophorectomy and Arimidex with an infusion of Aredia every 4 - 6 weeks. I also have ITP, which means my normal platelet count is around 40 and that's made chemo and surgery problematic (my platelet count fell to 19 after the ovary removal). The idea is to shrink the tumor and do a lumpectomy in a few months. I'm due for a scan in about 4 weeks to check progress. Like Suebus, I feel fine with the exception of the hot flashes, which are irritating, but I'll take a hot flash over cancer beating me any day of the week. The original prognosis was 2 years, but this forum is giving me hope that it will be longer than that.
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Stats mean nothing. My original doctor did not expect me to last more that a year... 9 to 12 months. In December it will be 5 yrs. You are not a statistic. So get going and live - dont worry about dying.... it will happen when it is supposed to. But inbetween, put all the living in that you can. Every smile is a victory. Living is learning and doing. Have fun doing both.
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I am kind of new to this world. Initial dx stage IV (post menapause). Involvement seems limited to lymph system. I am now in my fourth month of femara. Good news. No progressions and some shrinkage of larger lymph nodes. Side effects not too troublesome. Some joint pain mostly relieved with Ibuprophen. I have had fatigue since before dx. and have had to take medical leave from work. Had initial scan at dx. second 3 mos. Next one planned for 6 mos. Hoping the good results continue. Striving to follow in the footsteps of others who live with this as a chronic disease. Hoping the best for all my sisters.
Nopey
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Dream...well said !!!
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Nopey
Congrats on the great scan. My first scan is next month and I am on femara too....hoping to follow in your footsteps!
Robin
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Has anyone been given Lupron? My doc wants to give it to me as I've finished chemo and am 48, premenopausal. I have bone mets (spine, femur, shoulder) and am worried about SE - bone loss, bone pain, weight gain, mood swings, etc. See that there are quite a few law suits relating to long term SE and the thought of taking this is scaring me.
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