Hormonal Treatment for Stage IV
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I orginally went through all the aromotase inhibitors and tamoxifen 7 years ago with my original diagnosis, but had to come off each of them because of the side effects. I laste 3 1/2 years on them.
I was diagnosed 2 months ago with mets to my spine and right lung. I was having back pain and after an xray it showe I had a compression fracture to t9. I had the surgery w/biopsy and it was breast cancer. I also had to have a thoracentisis of my lung because I was getting out of breath so bad (took over 700 ml out) and they biopsied that and found it was also breast cancer again being ER and PR positive HER2 negative.
I started treatment a month ago. I am on Faslodex and Zometa once a month. The only side effect I noticed is that the hot flashes are back again (and they were finally gone after I had instant menopause after removing my ovaries, and everything else 7 years ago, after my first diagnosis, I was 43). I was still taking Neurotin for the hot flashes once a day, but my oncologist said to start taking it twice a day. It's helping. I did notice some pain in my shoulder while I was having the Zometa infusion though. And my first Faslodex shots didn't hurt (only the initial pinch), last week the other nurse hurt me a lot. They both hurt going in and the one on the right really hurt. I think she went to far over towards my side. I could feel the pain going into my hip and it went down the front of my leg too. I woke up the next morning and I could not put any weight on it without pain. It went away after a few days, but it was bad. I'm going to make sure I don't get that nurse again! I go again next Friday for both treatments again.
Good luck everyone.
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Hi Lynn so sorry you need to join us on the stage IV threads but glad you have.
Hope the Faslodex and Zometa work well for you without too many SE's. That last shot sounded very painful and I'd try to avoid that nurse also or make sure you let her know she was too far around to the side for the position of the shot.
Love n hugs. Chrissy0 -
Lynne,
I will bump up the Faslodex thread for you. There are numerous tips in that thread to make the injection almost pain-free. I get the pain down my leg on the left side some months and I know for sure it isn't the shot placement. [In fact, it almost helps to know someone else gets this strange thing.] I have never had problems putting my weight on that leg the next day though.
Come over to the Faslodex thread, and others will be around to support and help you.
*susan*
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Thanks Susan and Chrissy!
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Hello All, I am new to the Stage IV Community. You are all so brave and encouraging so I decided to join.
I am Stage IV Hormone Receptor Positive with bone mets up and down my spine, hips, ribs and left arm. Treatment: Xgeva & Arimidex. I went for a second opinion last week and found that the characteristic of the cancer can change and that I may possibly have another kind of breast cancer, hence the spreading. I will have to make a 21 year career decision very soon as my FMLA expires.....some days I am okay, others flat on my back. Praying for peace in making this decision.
Hugs!
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Hi Cella and though I'm sorry to have to say it, welcome. Are you going to have a biopsy done on your mets to see if the pathology has changed? Bone mets are no fun but if you are still ER+ the Arimidex should kick ass so to speak.
I'm ER+ and on Femara and it has kept me stable for two years already.
Have you asked about some rads for your pain? It really helps.
Love n hugs. Chrissy0 -
Hi, Yes I have had radiation one time and it did help. The tamoxifen and now arimidex seem to NOT BE the answer. I get scans every 90 days and each time they show more places....so the second opinion recommended Faslodex.
Looking forward to October scans to see where we are.
Thanks for your reply.
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Hi Cella, and welcome to this thread. Hope the second opinion will be able to give you some answers to help. I am on Femara and it has helped me get to stable for about 18 months. Please do not hesitate to ask anything that concerns you. There will be some one that can answer your questions. So sorry you have to be here, but we are a friendly bunch, so welcome.
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I thought I'd catch this thread while it's bumped up. Really too bad it's no longer a sticky on its own.
Good luck on your scans, Cella. I've been on Femara the past 4.5 years. Last month switched to Tamoxifen. I still have to find out if this is for the long haul or just a temporary switch. I haven't had progression so far as anyone can tell, but I probably was complaining too much about having to take bisphosphonates that my onc gave me a drug that's better for bones.
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Heidi,
What do you take to replace a biphosphonates? I've been on Zometa for 3 years, but got arthritis in my knee.
Terri
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Terri, I meant that Tamoxifen itself prevents bone loss, eliminating the need for bisphosphonates. I think Tamoxifen is much easier on my joints than the combo of Femara and Zometa. I've only been on it a month though.
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Heidi, I'm on Tamoxifen for extensive bone mets. I also get an Xgeva(a different bisphononate) shot every month. I am surprised to hear your onc stopped the zometa with Tamoxifen.
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Hi Cella. Welcome to the comfrt den of support.
I don't post a lot here, but I do read the posts and better than when I first found you.I did not particularly trust my oncologist--just wasn't the right fit for a few reasons. Will be seeing a new oncologist in the coming weeks. One thing she was pushing me on was a biopsy of the bone mets in my lower back. I didn't understand the push, but I never felt comofrtable about it. I had back surgery some thirty years ago now, andit is a flash point of discomfort and just the thought of a bone biopsy in that area, frankly, terrifies me. Blind cold fear, peeps. So then she went from that to a suspicious node in my chest--which would need the services of a thoracic surgeon under general anesthesia. But I have a whole slew of suspicious nodes in my right axilla and they're clear. It all seemed so over the top. Can anyone maybe share their experiences in this vein?
The cancer was locally advanced when I was diagnosed; but confirmed lesion ion on L5-S1 confirmed three weeks in after the PET/CT took all the docs by surprise.
Thanks all!
Scorchy0 -
SonnyB, I have been NED for 4.5 years - no active mets. I used to have the Zometa every 3 weeks together with chemo many moons ago. The switch to Tamoxifen came as a shock so I didn't really ask questions. (You wonder where your brain is when you need it.) Who knows, he may want me to have Zometa again in a year or two. I do know that Tamoxifen prevents bone loss and Femara causes it. So even without active bone mets, a bisphosphonate would help with Femara bone loss. Sorry for the confusion.
Scorchy, tough situation. My affected mammary node was near the surface so only local anesthesia was needed for the biopsy. I t never hurt before but after the biopsy it hurt quite a bit. So I understand your reluctance. I did not get a bone biopsy though. After 5 cycles of chemo, the bone and node mets were gone. In hindsight the biopsy was not needed. Maybe they want to see if you are a candidate for chemo? You probably could say my whole treatment was over the top, but I recovered and don't have any regrets, except maybe for the axillary dissection. Good luck on your decision/second opinion.
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Heidi,
The National Cancer Institute website says that one of the side effects of Tamoxifen is bone loss in premenopausal women.
I'm taking Tamoxifen plus a monthly IV of Aredia to prevent further bone problems.
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Thank you Heidi.
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Margaret, I am postmenopausal. That seems to be a rare side effect for premenopausal women. Tamoxifen is supposed to be an estrogen receptor agonist in the bone, but apparently not for some premenopausal women. According to one study women who go into chemopause gain bone density with Tamoxifen and women who continue menstruating after chemo lose it.
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Heidi,
Thank you. Very interesting.
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I am new to this site, Stage IV at diagnosis 9/2011, with mets to the liver and lymph nodes. I have a blocked bile duct and a biliary tube to resolve that. I am getting a biliary stent in December to get rid of the exterior tube. I have been on Arimidex and have had a great result so far. Doctor says Arimidex works for 18-24 months, and I am 14 months in. Anyone else have Arimidex experience, and what can come next?
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You're on a good path! There are no fixed timelines for this disease, so you could be taking Arimidex for a long time. I was taking Femara 4.5 years and switched to Tamoxifen. Femara had not stopped working for me but because it's harder on the bones than Tamoxifen, I made the switch. Good luck on your stent!
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My mom was diagnosed with lung and bone mets from the start in April. Her lung mets were so bad that she had to be put on oxygen. Her onc had her on Xeloda and knocked the lung mets back so much she was able to go off oxygen. Recently, her se were getting so bad that the onc decided to change her to Femara. Before she started, they did a PET to have as a baseline and found that she has had some slight progression in her lungs and bones. She is still going to start the Femara....just wanting to know if anybody started Femara after chemo and had success with it? Xeloda (plus Zometa) has been her only treatment thus far.
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I don't know how, but I've somehow managed to completely miss this thread until now! I'm finally back on hormone therapy after 8 months trying 2 chemos (Xeloda and Taxol), and nothing to show for it... So, I started Aromasin 3 weeks ago in combination with Saracatinib (as part of a trial in the UK), and will find out in January if it's doing the trick for me. I'm hopeful that I'll get a good response because I got nearly 5 years out of Arimidex and about 2 1/2 years out of Tamoxifen. Just wanted to say hello to everyone and join the party!?!
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Hi Jackie, I didn't have chemo prior to starting Femara but the Femara alone is doing good things for me so far. I have been taking it for two years now and am stable. Hopefully your mom will also do well in it.
Hi Angelfalls glad you found the thread, welcome.
Love n hugs. Chrissy0 -
I have only had Femara and monthly Aredia treatments from the beginning, July,2010. And I am stable now. They lowered my dosage of Aredia from 60 ml to 40 ml this last treatment because of concerns about my kidneys. They also slowed the drip down considerably this last time. Usually it takes about 2 1/2 hrs to complete the 60 ml, but it took 3 hrs. to do the 40 ml this time. Femara has worked really well for me and the Aredia has helped with the bone loss. Between the 2 drugs some of my bone mets have actually started to heal! Needless to say I am doing the happy dance these days and hoping Stable boy stays around a long time.
AJ0 -
This is my honey's and mine first run out of the gate in the wonderful world of stage four.
Left breast, left lymph node under the arm and the only met (so far) in her L3 lumbar removed. Some new soreness in a rib on her left side, but that could be due to the back brace she has to wear post surgery from sept 11th, or a damned met showing up.
My ladylove just finished radiation on her spine tuesday and began Anastrozole wednesday. She gets her second shot of Xgeva next wednesday, and goes in for a bone density test on the 27th. Followup scan in March, sooner if her rib worsens.
I have a feeling I'll be visiting this part of the S4 forum frequently. Wish none of us were here, but glad for the company and the info.
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Keith,
So glad you are fighting this with her. She should start feeling better with the Xgeva and the recovery of lumbar area. Hoping for good news with her scans in March.
Terri
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Keith welcome although we would rather you not need to be here if you know what I mean. It great that you are doing this journey together and I know your wife will appreciate that no end.
Take heart as the Anastrozole is a very powerful little pill that belongs to a very powerful family called the AI's. It can keep your wife stable for quite a long time........for me it two years and counting on Femara (Letrozole) after 15 months on Arimadex (Anastrozole).
There are another couple if threads that may help you both as well and they are the Bone Mets thread and the Arimadex thread.
Hoping good things for you both.
Love n hugs. Chrissy0 -
Keith, Welcome to the club so glad you are in this with your beloved. I know together the journey will be easier for both of you and draw you closer, at least that is how it has worked for me and the love of my life. Keep us updated on the progress, tests, treatments, questions and concerns. We are all here to help each other navigate through the maze of BC.
Joy and blessings.
AJ
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Hi Ladies, I'm now 38 yrs old just found out in December 2012 of Reoccurance w/ Stage IV Mets to Rib Bones, and Both Lungs. Originally Diagnosed at 34 yrs w/ DCIS + BRCA 2 positive. Was a told doing a Bi-Lateral Mastecomy in 2008 would illiminate my possibilities of a Reoccurance. Apparently not. Here I am now, Stage IV Mets.
I have a 5 yr old & a 2 yr old. Onco has me on Tamoxifen right now. Have an appt on February 21 to confirm if it's working. If not, I start Chemo right way. The past 3 months of waiting & not knowing is agony! I have not had many side effects at all over the past 3 months, so I hope that is a good sign.0 -
Hi mmarsh,
Sorry you have to join us but this is great group. I suppose, you didn't have a local recurrence but no one should have told you that a bmx would eliminate the possibility of distant recurrence. Cancer is far sneakier than that Anyway, there are many reasons to be hopeful. We have our ups and downs but you may be surprised at how well life can still be lived!
Caryn0
