Hormonal Treatment for Stage IV
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Thanks, Chrissy, Cathy and Heidi. Next step is to find an arthritis med that works, but I'll take arthritis over the alternative any day. Apparently, at least for now, lettracord is my happy drug of choice.
Cathy - love the STABLE boy comment, especially since we just moved to a semi-rural area and have had the neighbours' cows roaming through our yard - I told my husband if this keeps up, I want a Stable Boy (as opposed to a Pool Boy since we don't have a pool!).
Hugs to all,
Terre0 -
I had such terrible side effects from hormonal treatments til i ran into my best friend Letrazole. I have no side effects and my tumor markers went from 800 and something to 126 in eight months ....along with faslodex and Zometa. Just asking cuz i think its great111
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Hi ladies, I may be at a crossroads and it may be time to change meds...need your experience and your input...please.
Here's the history:
I had Stage II BC in 2002. Was diagnosed Stage IV nine years later with mets to sternum and lungs.
Xeloda worked for approx. a year to reduce tumors greatly, then cancer growth
Tamoxifen worked for 10 mo or so and got me to NED, then had some cancer activity.
Afinitor and Aromasin combo worked for approx 15 mo and got me to NED again. My tumor markers kept rising but scans were still clear. So my onc and I (after much discussion) decided to leave me on Afinitor and Aromasin because it may still be working and just add Faslodex to the mix. I've had 5 Faslodex injections total (3 months on Faslodex) Now, my tumor markers are rising again. They rose a lot this last month...almost 30 points. I've heard Faslodex can take a long time before it lowers TMs. My onc even said it can take a while. He said I should do 2 more injections and then a scan. If we see cancer growth, he feels I should do IV chemo (most likely Doxil) next. I've pushed off IV chemo for 3 1/2 years now and really am not anxious to start it. I did all that with my Stage II cancer long ago. But, I know eventually, it is probably what I will have to do.
I've also heard of ladies who have tried all the hormonals first before switching to IV chemo. I've only been on Tamoxifen, Aromasin, and Faslodex. My onc feels like if this current one isn't working, it probably is time to switch to a chemo.
What is your experience? Have any of you had success with Faslodex and how long before it worked? I don't want to give up on a treatment too early. Anyone had Faslodex NOT work? How long did you try? Did any of you go through MORE hormonals before going to IV chemo? Or, do you think it is better to switch gears if the cancer is growing and hit it with chemo for a while? Any of your experiences will help me.
Also, anyone on Doxil? What do you think? What is it like?
I'm hoping and praying that with a little extra time the Faslodex will work, but would love to hear your thoughts just in case!
Thank you all so much!
Julie
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Julie, I started with Faslodex and Herceptin ...Jan. 2014 for MBC mets to the lung. My 27/29 has been in the 45-60 range but mainly settling into the high 50 range. My initial dx with IDC was in 2006 and tx for ER+ was the AIs..Arimidex, Aromasin, and Femara plus Herceptin for the + Her 2. I did have in 2006 tx plan Adriamycin and Cytoxin and Abraxane. It is discouraging isn't it to not have a more convincing response to Faslodex? From what I can see, many of the oncs will move to another drug with progression after 3 or 4 months on Faslodex. I also would be interested in hearing others' response to Faslodex . I also hope to stay with the Faslodex or one of the AIs until scans or increasing TMs. I hope that for you Faslodex is getting started and shows some clinical success. Hugs, Peg
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Dear Jnh,
All I can personally speak about is Faslodex. I was on Faslodex and Arimidex together for about a year and a half. It worked really well for me for a long time and then just stopped.
The side effects weren't bad, but everybody is different. I had achy joints and hot flashes. I'm post menopausal so the hot flashes weren't new to me.
I then was taking estradiol for a couple months. I'm now on tamoxifen.
I pretty much refused chemo from the beginning but have thought about Xeloda.
I hope this helps and I hope the more experienced women show up and share their experiences.anywho, the Faslodex/arimidex combo was pretty great for a long time. I wish I could have continued with it.
Good luck with whatever you decide. Wish me luck with tamoxifen!
Rebecca
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Good luck Rebecca.
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jnh,
I was on Tamoxifen after I was first diagnosed in March. I thought the plan was for me to go through the hormonal therapies first before moving to chemo but my MO said she wanted to see a better response on my lung mets (brain and breast tumors were shrinking but lung mets shrank and then stayed stable) so she put me on Xeloda. She said we could go back to hormonals after a bout with Xeloda. Don't know how long the "bout" could be. So far, the Xeloda has been tolerable but I was loving the Tamoxifen, no SEs at all. On Xeloda I more fatigued and I have mild HFS. At least it's in pill form.
Hugs, Susan
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Thank you, ladies, for your prompt and informative responses! I will speak to my onc about these if things don't go well. Hopefully, TM will go down soon and my scan in a month or two will be clear! Go Team Fanny Pack!
It helps SO much to have others to bounce ideas off! Thank you!
Julie
Good luck with Tamoxifen, Rebecca!
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Hi everyone, I'm a lurker in several threads but today I need your help. After a year and a month of taking Arimidex.Anastrazole daily and Zometa every month today my onc mentioned that my tumor markers have gone consistently up for the past three lab reports ( I get tested every three months) so we might be switching to Aromasin or Faslodex(sp?). This is the first time she has indicated anything wrong since first dx Stage 4 so for the first time I am afraid I'll hear the word "progression". She is going to try to get Medicaid to pay for a PET scan because last time they denied it and I had a Ct scan instead. Please give me any suggestions/thoughts.
Aurora
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Aurora it happens to all of us and is very scary. I had a progression while on Arimidex and was changed to Femara which has served me very well. Faslodex and Aromasin are both easy meds (if any are really easy) but work a little differently to the Arimidex. Hopefully you will have a good response no matter which one is decided upon.
Good luck with it all.
Love n hugs. Chrissy
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Aurora I'm still new to this. My first visit to the onc after starting anastrazole showed marked improvement. Somehow, I'm afraid that's not going to be the case when I go tomorrow. I've got a mouth full of fever blisters I'm so anxious. Ultimately, I just have to take it a step at a time.
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Oh Dune, mouth full of fever blisters is no fun. I'm fighting one right inside of the corner of my mouth and bitching about it. So I guess I'd better count my blessings that it's only the one!
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Terre, one or many, those things suck! i actually have medication for it, and knock on wood, my mouth feels better today. Oh, but I am soooo nervous about going to the oncologist today. I have to leave in 45 minutes. I will let y'all know what kind of news I get.
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Dune - my thoughts are with you. Keeping my fingers crossed that things go well for you.
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Thanks Nine Twelve. Tumor markers down. Looking good for now! I should have a beer later to celebrate. Right now I'm sleepy and in bed. LOL Lazy bum. (Shrug)
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Glad your appointment went well, Dune! Congrats!
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Dune, Happy to hear it went well. Have a nice nap.Linda
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So happy to hear your good news Dune!! Congrats, celebrate with a nap & a beer! Cheers! Dee
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Whoops! Had a donut. No beer today.
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Hi..I am new here but not new to beast cancer..been living with it since Nov 2012 ..I was re diagnosed stage 4 May 2013..Currently I get Faslodex shots..Lupron Shots, and Herceptin infusions,,I also have been having sleep problems since the doctor had me on Exemastene then switched me to Faslodex..I have always had sleep problems but it's gotten really bad..I currently take Ativan 1 mg at night but feel a bit groggy in the morning..I can sleep a little on my own than I take the Ativan to get more rest..I guess the Ativan just calms you down and makes you sleepy.,anyone else take Ativan for sleep or have long term?
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Hi Susannj, you might want to post a separate thread on sleep issues so more people can see it and respond. I only took Ativan once and it did help. I switched to Benadryl and used that while on chemo. Once I switched to Femara I found exercising outdoors at least one hour a day to be very helpful. Chamomile tea helps, too - I drink it everyday before going to sleep - as well as Melatonin, if the tea isn't enough. I hope you find something that allows you to get more rest.
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I've never taken ativan for sleep, but I've been taking xanax for sleep for years. It's the only thing that helps me. I finally got a script for ambien but it didn't work. I'm supposed to take the xanax for anxiety but I need it to sleep. I think ativan is a similar drug. I have taken ativan and don't like it, so there is some difference. With ativan I never had the sense of relaxation I get with xanax. So I could be loopy and not know it. Beware of that.
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Susan, tho currently I don't take ativan on a regular basis, it helped me with sleep more than anything else during the first couple years after diagnosis.
What I found is that when I took it, tho I might still wake up couple times during the night (usually to go to the bathroom), the ativan allowed me to relax enough, calming those anxiety ridden thoughts , so I could fall back to sleep. So it didn't "knock me out" but was an aid.
I took .5 mg, right as I went to bed. Maybe you could cut your pills in half and try that, or even take the 1 mg at bed time rather than wait to take it when you can't fall back to sleep. If you take it in the middle of the night, that may be why you feel groggy in the morning because you haven't been able to "sleep it off". Try to adjust it to how it works for you. If you are able, even taking it a half hour or so before bedtime could allow it to calm you so you get a good night's rest.
When I tried Ambien, it did sort of knock me out, and I always needed a second night's rest to not feel tired. I took it less than a week, just didn't like how it made me feel.
I have dealt with anxiety (not depression) since my diagnosis and take a small daily dose of buspirone, an anti anxiety med, which has taken the edge off the fear I experienced and gave me my life back. I still have ativan and once it a while will take it when I have an unusually stressful day.
Best wishes.
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Kudra,
Are you post menopausal? I thought you couldn't take Tamoxifen after you took Affinitor and Aromasin. This is all so confusing. I've been on about everything and my doctor will want me to do IV chemo that is more aggressive soon. I don't think I can deal with it again.
I was on Faslodex and it didn't work for me at all.
Xeloda isn't that bad. I was on it for about a year.
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Susannj30,
I was on ativan during IV chemo. It does help you sleep and helps with anxiety but it can be very addictive so only take it as long as you need it.
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DEbeachgirl, Tamoxifen can be taken even after menopause and is often used in the arsenal of oral meds unlike the AI's which can only be taken after menopause.
It gets really disheartening when we are face with IV chemo so I'm hoping for you that the treatment that you are on right now is working well for you.
Love n hugs. Chrissy
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Chrissyb
I am new to this site. I was diagnosed with stage 4 bone only October 13. femera worked for 10 months then my markers rose. I have had 2 shots of faslodex with a rise in markers from 180 to 200. I will have another pet scan this week. I am not sure I want to persue chemo knowing that there will be no cure. Anyone have any ideas
ER+.P- HER2 is questionable since it was only in the bone marrow
Grey days in iowa
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Hello,
I have been on Arimidex for 5 weeks and have no side effects. I read on internet you know it's working by the side effects. I had major hot flashes and night sweats on Tamoxifin but 3 1/2 years of that and have just been diagnosed stage IV. I am so scared this drug is not working but I have to wait 2 more months to see. I do not like the trial and error method.
Isn't there a test they can do on your tumor to see what works for your particular tumor and what doesn't?
Thanks,
Robin
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What was the source that mentioned that Arimidex is not working if you have no side effects ? Is it a reliable source? Unfortunately, trial and error is how this works. I know there is some chemo sensitivity testing (not widely used) but nothing that I know of for AI's. No guarantees either way.
I should add that I had few if any se's on Arimidex for the better part of a year. By the end of the second year, the SE's were very bad and I swtched to Femara. I've had no progression on either
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No se's after 5 weeks??? Trust me, they can and do show up sometimes after many months or a couple of years - that said my bff was on it forever (5 years plus) and never had an se and her cancer did not come back (it's been almost 11 years) - we are all different and sorry but trial and error is how bc is treated - frustrating I know but it's all we've got for now.
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