Hormonal Treatment for Stage IV
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Welcome Dana..I have my DH and my kids, but no family close by. My DH works about three hours away so I only get to see him on weekends. I sometimes feel lonely with nobody close by. My two girlfriends live far away and another is moving away this year. I have a hard time asking for help, but I am learning. It is wonderful having these ladies to talk to and help me feel normal again. We are here for you..We have each other to lean on for support.
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Hi, Dana, Your journey sounds like an intense one, and I am glad that you have reached out to others for support! Many of us understand the challenge of dealing with isolation while going through cancer. In my circumstance, I had just relocated halfway across the country when I received my second cancer diagnosis; I hardly knew anyone, my new coworkers were polite but worried about whether I would be too much of a liability to our team, and there was no local breast cancer support group. Through this site I discovered a great deal of support and education. When I was diagnosed with mets three years after the second diagnosis, I joined this forum and then learned an incredible amount, not only about disease management but also about everyday coping, including the value of maintaining connection with others who face similar challenges. The support has been invaluable!
Your family photo is wonderful, and you and your kids emanate love for each other. I don't have children but I know what it is like not to want to overburden others with worries about your health and prognosis. My husband is truly one of a kind and very supportive, but there are some times I just don't want to put him through one more incident of concern or I want to delay what he has to hear until I am clearer myself about what I am facing or feeling. Others on this forum understand that and respond with caring. I hope you will find a great deal of support here and that you will feel more grounded in your life as a result. Let us know how and when we can help!
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Hi Dana. Nice to "meet" you...wish I could be under better circumstances!
Sorry you have endured such a particularly hard road. I have 2 special needs teens, do I can relate to the (at times) soul-crushing fears I have about how this affects them both now and in the future. I think you'll find this group to be a tremendous source of information and support -- I know I have!!
Hope you heard good news about the liver mets...please keep us posted!0 -
Hi Dana,
I am sorry about your news. I had a recurrence in February after 8 years, but at Age 62. One of the most positive things that has happened to me in the last three months is meeting three incredible women who have lived with Stage IV BC for 9-10 years. They are young enough to be my daughters ....let's say "baby sister" instead. But living does not describe them. Thriving would be a better word. They were inspirational to me and I am taking my cue from them.
See if the ACS has a chapter in your area where you can meet fellow survivors...in person. Here in Cleveland, we have a non-profit called "the Gathering Place" for all types of cancer patients and caregivers. Your local United Way may have places for you.
Good luck! Prayers with you.
Mary Ann
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Exemestane treatment started on March 18. My arms have been going numb at night during sleep with pain that wakes me up. Especially noticable in right arm, with fingers swelling. Is this just a side effect that I will have to live with? Anyone else experience this?
Thanks for your help. Doctor and pharmacist had no advice.
Mary Ann
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I noticed you've had bilateral SNB. Could this be lymphedema?
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I don't think so, and certainly pray not. I am doing many things that aren't helpful in warding that off, but that's life. My husband had a brain stem stroke and I do transfers to wheelchairs, toilets, bed, etc. so much for not lifting more than 10 lbs.
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Mag8, LE can occur at any time for any of us, even years out, and can come from only one or a few nodes being removed. Also, mets to the cervical spine or even arthritis and bone spurs or bulging discs in the neck spine can cause similar symptoms. You need to see your doctor! And if your doctor doesn't know, he/she should refer you to someone who can figure it out. Best wishes!
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to Nancyh: Don't feel regret since I took my Tamoxifin since 2009 after my treatment and I have just been diagnosed with Stage IV. It doesn't seem to matter, the cancer makes its own decisions.
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Interesting perspective.... The way I look at it is this: I was able to take tamoxifen for a little over 2 1/2 years, from 2009 through 2012, and during that time I maintained NED status. Before that I received hormonal therapy (arimidex, evista) and had no evidence of cancer from 2006 (time of second diagnosis) until early 2009 (time of mets diagnosis). Who knows what might have happened had I not been on any of these meds? There appear to be varying levels of disease management with each med, unique to each person. I am not trying to sound naive about the "power" of cancer, but I do try really hard to see various modalities, such as hormonal therapy, as tools in my efforts to reduce risk of progression (like in my early years, when I did what I could to reduce the risk of recurrence).
Rozann, I am truly sorry to hear that you are dealing with a Stage IV diagnosis. Regardless of what we have chosen to do or not do with regard to risk reduction, it is still a huge shock when faced with this diagnosis. I hope that you and trusted medical professionals will come up with a plan for future treatment that helps you to feel empowered about dealing with this terrible disease. That may sound kind of crazy to some, but ultimately we adjust to the news in whatever way we can, learn more about how to LIVE while dealing with this stage of illness, prepare ourselves the best we can to face possible outcomes that we would much prefer not to face, and try to meet the challenge of living in the here and now. I wish you the best as you continue to adjust and adapt, and I hope you will let folks here know when you need information and suppport.
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Mag8yrsurvivor,
I started Aromasin Mid May after being on Arimidex for about a yr. I really had no symptoms on Arimidex but my onc switched me because of rising tumor markers (300). I am not feeling numbness or really what I'd call pain but there is a difference. Funny but the best way I can describe how I feel is kind of like when Dorothy used the oil can on the Tin Man. My joints feel kind of creaky when initially making movements. It doesn't really hinder me from movement but is just a bit annoying. I swim for about half an hour a day on most days. Have you paid attention to the way you sleep?, like maybe more on the right side or anything like that? I take my pill late afternoon every day.
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I took Arimedex, Aromasin and Femara for a total of 18 months post chemo. The SE were so bad of joint pains in my legs. I could only walk w/help and the arthritis pills the pain was excruciating. I quit them after 18 months and told my Onc. So yes SE can be a huge obstical. I am to re-start Tamoxifem tomorrow and then 5 weeks of radiation to new nodule under my collar bone. Thankfully bone scan and organ scans were clean. Lungs may be iffy but I will pray and do what they tell me to this time ( well up to a point) I have seen way too much overdo of chemo as a hospice staffer some years ago.
RHH
Dx 12/1/2005, IDC, 1cm, Stage IIb, 1/22 nodes, ER+/PR-, HER2-Dx 7/25/2013, IDC, 1cm, Stage IV, 1/22 nodes, ER+/PR-, HER2-0 -
I am on here today for the first time...I have basically going this alone for over 2 years now...my Husband is in Assisted Living with dementia, so he can't be supportive...my best friend in the beginning told me to "Buck Up" (retired Air Force Colonel)...so I have...BUT now my ONC thinks I may have some new spots...and he told me I had to accept that I might have 4 years left or so...I am having a real hard dealing with that alone...
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Hi Totiredofdoingthisalone and welcome. Oh my, I would not call that person who told you to 'buck up' a friend, on the contrary.
We all need friends who understand what we are going through and what we are feeling and this forum is all of that and more. Having BC is a challenge not just emotionally but physically as well and just when we think we are making our way trough the maze that is BC we are hit with those words 'I think it has spread'.
There are a lot of women here (unfortunately) that know exactly how you feel and what terrors you face.......we are walking the same path so please feel free to come here to vent, cry, complain, laugh and express whatever else you need to as we are all here together to give you encouragement, get angry for you, give you many shoulders to lean on and laugh our heads off as often as we can.......together. Welcome.
Love n hugs. Chrissy
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Tired, Chrissy is so right. You can find such comfort here. Stage IV can make you feel so alone, but keep reaching out here, and you will find many who can help you hold steady, especially in regard to treatment decisions and just making it through another day. We ALL have to accept the limitations of a terminal disease but you don't have to accept an "expiration date." I wish you the best of oncology care and the sunniest of days ahead.
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I have had numbness in my right arm also...mine was a blood clot...hope yours is better by now.
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Thank you all soooo much...I was allowing myself to have a pity party...I will come here for support...I have mostly been looking to see if I could find anyone with HER2 that has survived more than 8 years...do you know of some???
By the way, I am totally blessed to be in treatment at the MD Anderson Center in Orlando. I drive 3 hours every 3 weeks for treatment, but it has been worth it.
Thanks again.
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Tired, welcome to the group. We are all here for each other. This is the best place to come for support. At first I liked the fact that I didn't have a face, nobody knew who I was. I could creep and not post if I wanted to. Now I post all the time...I could not have made it without these wonderful ladies. These women are so so supportive.
I have heard that some women with some types of cancers live long long lives. My coworkers mom has had cancer three times. The first time was about forty years ago. She just celebrated her birthday and i think she is in her eighties...So never give up. think positive. I plan to be posting here for the next 30 years at least.
So I was just wondering. If you are stage IV and they shrink the cancer, does this mean you now go back to stage II? After five years of no cancer does this mean you are cancer free, or will I always be stage IV.
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Hi Michele,
Sadly, once the horse is out of the barn, you don't go back to a lower stage. You may show no current evidence of disease but chances are, sooner or later, bc will rear it's ugly head again. Yes, there are some long time survivors, but they are the exception, not the rule. Wish medical science could figure out why this happens. Until then, we can keep hoping and doing the best we can.
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Michele,
I think a lot of us who have clean scans for a few years are wondering how long we can stay without any reoccurrence episodes. I'm 4 years out from stage IV with 3 years of clean scans. I'm always wondering when the shoe will drop. Maybe, we should let each other know for encouragement sake how long we each remain stable.
Terri
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Hello, I have been living with Stage 4 mets to the lung for just about a year now. My oncologist had me on Femara and scans every 2 - 3 months. Last scan showed I had a 30% increase of my lung tumor so today I am going to get the first injection of Faslodex. This is the first time I am actually feeling "scared" and I don't know why. I have been through a lot like all of you since 2008 and why now? Has anyone here had success with Faslodex? I would love to hear an encouraging word.
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Hi Moonwillow and welcome to BCO. I personally haven't used Faslodex (Femara is still doing its thing for me) but there are quite a few girls here who are on Faslodex and are having great success with it.
It's always hard and very scary when you hear progression when you were thinking all was going well. Feel free to come here for as much support as you need as often as you need.
Knowing these boards well, I know there will be others along to add their voice to mine.
Love n hugs. Chrissy0 -
Moonwillow, I wasn't on Faslodex long, but side effects were very minimal, which was GREAT. Women having good results may not be reading this topic to respond to you, but you can find women throughout the boards whose signature shows they have been stable on faslodex for quite some time.
Here is some info I learned recently from the post "Did Anybody Else See This?" from a researcher, (Wardells).
"....faslodex ... works amazingly well on cells in a dish, and reasonably well in cancer models when grown as tumors in mice. However, the clinical response to faslodex is not nearly so robust and the route of administration (IM injection) leaves much to be desired. We as a research community once thought that the limited clinical response to faslodex was because after tamoxifen or aromatase inhibitor resistance, targeting the estrogen receptor was no longer useful. Further studies have shown that it is actually the chemical properties of faslodex that are limiting to its utility - this drug was never designed to be a drug, more like a research tool. But it was so effective in vitro that we couldn't help but try it in vivo, in the absence of better drugs."
So don't be discouraged if Faslodex doesn't work for you. Better drugs are in development RIGHT NOW. (You can read more about it in that discussion.) With Stage IV there are many treatments that can help slow progression, which I'm having, too, and I'm scared sometimes too. With so many treatments to try, we will have ups and downs ... forever. We are all connected souls here, spending time around this "cancer campfire," passing along helpful advice and hopeful support, so no one feels alone.
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Hello and welcome Moonwillow. This is a great place with lots of wonderful ladies.
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Moonwillow, you are invited to join the Fanny Pack on the "Faslodex Girls" thread. You'll find lots of support, good information and valuable been-there-done-that tips.
Come on over!
Tina
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Welcome. Moonwillow.
I am fairly new to this all so I can't hare ny info about Faslodex. I started Letrozole (Femara) on Jul 30. My 1st scan is scheduled for Nov 5.
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Good Morning and thanks for the welcome. I will have to check out the "fanny pack" lol cute name.
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Moonwillow, I've been on Faslodex for over a year now, since I was diagnosed with mets to my lungs and spine. The CT and bone scans I get every 3 months showed more shrinkage of my tumors after each scan. Last week I got the results of my recent scans and it showed no tumors in my lungs and no new mets. The same results as the last scans 3 months ago. My oncologist said the average time on Faslodex is 1 year, but there are many of us who have been on longer. There is one woman on the "Faslodex Girls" page who has been on it for 11 years! The only side effects I am having is fatigue, joint pain, and back pain. Not sure if it's the cancer or the drugs half of the time. All I know is that I didn't feel this way before I was diagnosed and put on this treatment. The shots are painful and the site remains painful, for a week or two for me, and sometimes a lump remains till the next time I go. I also get a 1/2 hr infusion of Zometa to build up my bones (faslodex thins them) and to help keep mets from forming on my bones. Good luck and welcome.0 -
Lynne, congrats on your Faslodex results. Faslodex didn't help me. Such a mystery how all these drugs work for some and not others. If they don't work for me, I'm happy that they are producing good results in others. :-) Benadryl 2 hrs before and after my shots helped injection site pain.0 -
Thanks Ronda! I'm sorry it didn't work for you. I hope the treatment you are getting now is working for you.
I take claritin every day for my allergies, Benadryl would put me to sleep. I drive myself to my treatments (unless I'm getting scan results, then the hubby comes), and that wouldn't be good. I don't take the narcotic pain killers, and muscle relaxers during the day while I'm working or driving for the same reason. I use lidocaine patches and take ibuprofen and use the heating pad instead for my back daily. I use the heating pad at night too.
Hugs!0
