Hormonal Treatment for Stage IV
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I started letrozole (Femara) a week ago. At that time I had one tumor in my axilla, and mets in my spine. Yesterday I found another nodule about 2 inches from the one in my axilla. How long does it take for letrozole to work? Is this a sign that already it is NOT working??? I am so discouraged today - I had been feeling so good, finally recovering from many of the SEs and pain from surgery & complications, all the drugs that were giving me SEs. Have been walking, doing things that feed my soul, trying NOT to let my brain wander into the darker anxiety alleyways. I see my MO in 3 weeks - should I talk to her sooner?
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Linda--((hugs))! I am no expert but I do remember reading that the hormonals take a bit to build up in your system before they reach their full strength...and I am pretty confident that only having been on it a week would be way too soon. Having said that, if your anxiety is getting the best of you, I think you should call your MO's office and see if you can speak with her nurse or PA and get a professional opinion regarding the new discovery of another nodule. Also a good time to take advantage of an anti-anxiety med if you have them (or to ask for a script if you don't).
And we're here to vent to!! Let us know what happens!0 -
Hi Linda,
I'm on Faslodex (another anti estrogen, but it's given as 2 injections). They have me go for CT scans, and bone scans (it came back after 7 years last May, in my spine and lungs) every 3 months. I just had my 3rd set of scans, and it's shrinking the tumors and there are no new ones. I'm not sure how your oncologist is going to check yours, but this is what mine does. I just pray till the next scan that the treatment is working.
Good luck! Hugs!
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Ysa and Lynne, thanks! My MO is monitoring me clinically with the axillary lesion - if it shrinks, that is evidence it is working, if it gets larger, that is evidence it is not working. I like this approach better than having to go for scans so frequently. I think she will also do scans but not sure the frequency.
I am very new to stage IV, don't know what questions to actually ask, not sure what to expect. Have a lot of fear that the end is coming much more quickly than I thought ... I know so many stage IV have many years of good quality life with good treatment, but finding new nodule within a week of last visit made my brain wander into that fear area that I am progressing quickly. So I am trying to use all the mindfulness-based techniques I know to keep my mind focused on NOW and the moments of grace and beauty that I have had today and planning for activities that will feed my soul and nurture my body tomorrow. Thanks for being here.0 -
First, Linda, I hope that you are tolerating Femara and that you will have a really good outcome with it! I, too, practice minfulness techniques and find them helpful, and I try to rely on trusted others for support when I need it.
Second, I have a question for those who are using Aromasin. After having a horrid experience on Arimidex, then going through the SERMS, then taking a drug holiday, I was started on Aromasin. I have been taking it for four weeks, and my insomnia is terrible. It does not matter what time I take it--and I have tried at breakfast, lunch, and dinner--I will either not be able to fall asleep until the wee, wee hours of the morning, or I will fall asleep for a few hours and then wake up and be unable to return to sleep for 2-4 hours, or not at all. When I saw my MO last Monday, she prescribed 1mg lorazepam (which I have tolerated well in the past); I've had fairly good results with .5mg several nights and 1.0 mg several nights since. Silly me, I tried again last night to sleep without lorazepam (concerned about dependence), I was up until 3am, after taking lorazepam right before midnight in surrender. I got 5 hours of sleep. My question: Have others had severe insomnia with Aromasin or other of the AI's? Did the insomnia eventually subside as your body/mind adjusted to it? If the insomnia didn't subside, how did you deal with it?
Thanks so much for any helpful input!
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Brenda, a lot of ladies including me use Melatonin. It works well and there is a slow released on available which will keep you asleep. Dosage can be anything up 20mg but most people fine between 1 and 3 enough. The thing is, you need to try it to see what works for you. It is not addictive as it occurrs naturally in the body but age and illness can disrupt its natural production.
Hope this can help.
Love n hugs. Chrissy
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Brenda - I also have bouts on insomnia where I cannot fall asleep or I can fall asleep for about 2 hours then I am up for 2-4 hours then sleep for 2 hours. I tried the 1 mg of Melatonin and slept for 2 days straight, but then I always react more dramatically to drugs than most people. The point is if you take the Melatonin start with a low dosage and see how that does before taking a larger dosage. I have 2 different Rx for sleeping and one is lorazepam which works very well for me and keeps me asleep all night, or at least until around 5:30 am which is when I used to have to get up to get to work. The other, I cannot remember the name of just helps me get to sleep but does not keep me asleep longer than about 3 hours. Between the 2 of them I am able to get enough sleep to keep me somewhat sane. I'll have to go look at what the other one is but by the time I get to bed I will have forgotten what I was looking up the name for. Oh well, if I ever make the connection when I am on-line I will let you know what it is.
Hope everyone is had a restful weekend. AJ
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I am on Tamox only for now. MO is monitoring two chest wall nodes that were "inconclusive" on my last PET. I also take horsetail, Vitamin D, and melatonin. My next MO appointment is tomorrow, for tumor markers and bloodwork. My next PET is in April. Here's hoping it's working.
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Dr. Oz had a program discussing Melatonin. They said taking more than 3 mg will not work any better than the low dosage. I still take it nightly along with a benadryl and it seems to work, but I did reduce my dosage of melatonin. I did try Ambien extended release which worked well but I had SE's from it and had to stop taking it.
Terri
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Thanks to all who responded and recommended melatonin. After doing some research today and talking with my internist, I have discovered that taking melatonin would be too risky for me given that I also am on warfarin. I was diagnosed with a rare disease last year and currently am being treated with warfarin, which seems to have interactions with lots of medications. I have had difficulty getting regulated with warfarin and learning about all the meds with which it interacts. Melatonin seems to increase the risk of bleeding for those on warfarin therapy, so I will have to continue searching for options. I will check with my oncologist as well next week, again, but I think she tends not to worry about lorazepam dependence. Actually, she is aware that I have a great deal of meds that cause allergic reactions and a significant number that cause adverse reactions, so she is probably thinking, "If lorazepam works, take it!" I wonder if anybody else has had a similar experience and what solution they discovered.
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Linda, I was diagnosed with stage 4 right from the start in July 2012. I had enlarged nodes in my left neck and axillary area. One node was removed under my arm. I had an oopherectomy because my cancer is ER and PR positive. I was then started on Femara daily and an Xgeva shot monthly for my met to my spine. My doc also monitors me by symptoms and also blood work that shows my tumor markers. He informed me that it can take up to 3 months to see the full effects of the Femara. It is so scary to find something new. My markers did go down after a month and continuedd downward each month after. If I feel concerned and stressed I call my doc. It may make you feel better to call them and get an answer. I love my oncologist and if he is not worried I follow his lead. Please keep us updated on your progress. Hugs.
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Linda, I hope Femara banishes the axillary mets. I know it's a great feeling when tumors shrink. I felt mine all getting smaller during chemo. Femara is that powerful, too. Lanagraves, good luck on your MO appt.
That is interesting on the slow release melatonin, Chrissyb. That's probably what I need. My onc wanted me to take Melatonin when I was on a Femara break. He said it was antiestrogenic. But it would knock me out so much, I didn't like the feeling at all.
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I have been reading all day. Arimidex. Faslodex. Am starting these now. Lung mets. Nodes around bronchials too. Don't know what to say or think. I was sent by my new MO after the PT scan to a leading BC MO specialist / researcher in Indianapolis, for a second opinion. He did not tell me what she told me, think he wanted to spare me. She showed me the xrays from autumn 2011, and where they were described clearly in the PT scan from June 2012 and now had SUV on the PT from Feb. 2013. The lung mets were there from the beginning. Just didn't light up the PT until now, but nothing is changed except that. Both MOs agree, there was no surgery, radiation or chemo for this (first MO had said both chemo and rad and he had not told me about the lungs). I needed to be on hormonal treatments. So I will be on Faslodex and Arimidex, she said these could very well shrink the cancer giving me a new lease on life. She said if not both complementary, then the Faslodex alone was her second choice. I trust her, she has seen it 1,000 times and over again.
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Hi, Blue-bird Essa,
I wish you weren't dealing with the news you have, but I'm glad to hear that you've had access to a leading researcher/specialist. When I was diagnosed with chest wall/skin mets in '09, I went to a regional NCI center for a second opinion, which answered a lot of my questions to my satisfaction and helped me to place more confidence in my treatment plan.
I hope you will be able to tolerate the hormonal treatment and that you will have a very good outcome with it. I know it can be challenging to prepare yourself for more treatment while also trying to attend to the business of life and trying to appreciate and enjoy each day to the extent possible. I hope you have a good support system; it looks like you are very active on this site, where, as you know, support and input are always available.
I have learned even more, since my third bc diagnosis, that I need to build into my life more time for relaxation, good times, humor and creativity. What do you do to help you cope with the stress?0 -
Bluebird-Essa - I have lung mets also and the hormonal, Femara, has done a great job at srinking all the spots and I can breathe a lot easier. I also have asthma, but now I no longer need to take the asthma control medication which was making me so nervous and jittery. Hope you have the same success with your treatment. Hugs and easy breathing, AJ
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I am new to the forum and have been diagnosed with Stage IV since November. I stopped chemo last month (still have a port) and feel that I am not doing "enough" with just taking Femora. Chemo had such obvious side affects and Femora is causing joint aches. I am trying various antioxident supplements. Thanks.
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I was on Femara for almost 18 mo before it failed ... found it to be a great med. Yes, there are side effects like achy joints, etc (I call it the Tin Man Syndrome). Enjoy it while you're able to take it!
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Hi Prosper I've been on Femara for two years and going strong.........it is a very powerful little pill. Gentle exercise is good for the aching joints. Hoping you get good results and are stable for a long time.
Love n hugs. Chrissy0 -
I have only been on femara for about 6 weeks, have had virtually no SEs (am worried it may not be working???) - but my MO told me that the best way to prevent those aches and pains is to EXERCISE, even when I don't want to. She was very specific (first time a doc has ever been THAT specific with me) that it was to be about an hour a day, 70% aerobic and 30% strengthening, not necessarily that proportion each day, but overall average. I am managing to walk about an hour a day, but just can't seem to get to that strengthening part. But this is still a vast improvement over what I was able to do before starting femara as I was pretty much doing nothing more than yoga once every few weeks. And I really hated getting out yesterday, had such a bad pain day (neuropathy stuff, not new stuff from the letrozole) that I just wanted to curl up and not move, but did the walk and actually felt better.
So far, this has been so much easier than chemo or tamoxifen, but I have developed 2 new local nodules since beginning it, but I have read here that it can take up to 3 months to know if it is working or not, so I am trying to be patient and keep the anxiety down. Some days successfully, many days not so much. So it's time to get out and walk in the beautiful sunshine and cool breeze and find some beauty and joy today.
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Linda I have been doing hydrotherapy and have found it works well for all aches and pains. I was never sure if those I felt weredue to the Femara or my arthritis, but either way the gentle exercise has made things a whole lot easier.
Hoping your walking does the trick for you.
Love n hugs. Chrissy0 -
Hi everyone,
This is a really long thread and I haven't had the time to go through it all, so maybe someone already answered my question. If so, then sorry and maybe you can help again?
I just was dx with bone mets, after having taken tamoxifen for two years, which obviously didn't work...
My onc has switched me to letrozole (generic femara) a week ago, but said it takes up to eight weeks to see if it is working.
Are there people out there for whom tamoxifen failed, but an AI worked? My onc said the chances are lower that the AI will work for me because tamoxifen didn't work, but there is still a chance.
I guess I just want to hear some success stories, so I don't feel like I am letting the cancer grow in the next eight weeks while I wait to see if the AI is working...
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Latte I was allergic to Tamoxifen but Femara has worked well for me over the last two years and is still going strong. I know its going to be hard to get through the next eight weeks until you are tested once more to see if its working for you but in reality, those eight weeks are not really going to make that much difference in the growth of the cancer itself.
Hoping you get really good results.
Love n hugs. Chrissy
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Thx Chrissy. I just keep telling myself that if the AI works then that's the easiest situation for me, so it's worth the wait. On the other hand, my physical state deteriorated so quickly while they were trying to diagnose me that I am worried what 8 more weeks will do to me if it doesn't work...
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Latte,
I comepletely failed Tamoxifen too, and developed mets while on Arimidex. My MO seems to think that Faslodex and Arimidex or Aromasin combo might be the best course of action.
There is a developing theory that women with larger BMIs might need an increased dose of Arimidex to be effective, if that's your scenario.
Jennifer
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Thanks Jennifer. High bmi is definitely me. Do you have a link to any of that research so I could discuss it with my onc?
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Latte, I have to say I'm jealous of your 8-week wait. I was dx'd stage iv a year ago. Did tamoxifen for the last 9 months of that and they finally decided last month that it wasn't working and I would switch to letrozole. My next scan to see if the letrozole works -- 6 months! Knowing that my bone mets have run rampant and the buggers have moved into my liver in the last 6 months, I am not feeling very good about the long wait. I'd love to have some sort of check after only a couple of months!
My onc. will scan me sooner if I develop any new symptoms, but who knows... I don't have many symptoms now and I have mets everywhere.
Fingers crossed that the letrozole is magical for us!
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Oh kebab, you just made me feel better about my 8 week wait. I understood from most people that 8 is standard. I'm sorry you have to wait so long, did you ask your onc if you can check sooner, just for your peace of mind?
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Latte,
http://jco.ascopubs.org/content/28/21/3405.full
For info on Arimidex dosing and the high BMI patient.
Jennifer
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Thanks Jennifer!!
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I am new to this thread, diagnosed last month with two liver mets, and so far none found anywhere else. I have been taking anastrozole since finishing chemo in January, and so far it hasn't caused any noticeable side effects. I won't find out until May whether it is working or not.
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