Hormonal Treatment for Stage IV
Comments
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Amyjo,
WOW! So happy your tumor markers have decreased so much. Now I'm a little nervous about switching to generic Femara. We'll see what happens!
Lane
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That is incredible, amyjo! Just goes to show, sweating is good for us!
Rochelles, I hope you can get a proper diagnosis soon. Maybe it's time to switch doctors?
Bobbiek, I'm sorry your bc has spread. Arimidex has helped many in your shoes. So hang in there!
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Generic Femara caused a skin rash and severe itching after 2 weeks on it. My Onc gave me a new prescription with "No Substitutes" written on it and my insurance company did not give me any problem.
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hihopes - that is what my onco did also and I have not had a problem with them paying for the brand name of Femara. It is still expensive since the last assistance program from the drug company ended June 31, 2011. I went from paying $10 to paying $206. At least it is not the full $453 price. My onco is helping me look for another assistance program that will bring the cost back down to something I can actually afford and still pay the house mortgage and buy food.
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Marybe, I had my first Faslodex on Thursday and they put one in each hip. The one on the left swelled quite large and I have extreme bruising from it. My onc said that they found that doubling the dose isnt' that much more toxic but I sure felt toxic after I got it, I have had pretty consistent se with the Femara for the last 2 years so maybe I am just one of those that reacts to that stuff.
I had blisters on my tongue the night I got the shots and it scared me that I might be allergic to it but they soon went away. Doc said we wouldn't know until Oct if this was going to have any effect on the liver tumors or not. I have to have two more shots on the 18th so I hope that the bruises from these are gone by then. Darla
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Darla,here are some practical tips I received from posting my very first question on this site before I got my first Faslodex injections just two weeks ago. These hints worked for me and I hope they do for you, too. First, make sure that the nurse has warmed the Faslodex to room temperature. S/he can do this just by warming the syringe between her/his/your hands for a while. The drug is suspended in viscous fluid in the syringe, which has been refrigerated. If it's not warmed up, it will take the nurse forever to get it into you and cause more bruising than otherwise. Second, relax your leg completely when getting the injection; put all of your weight on the other leg. Third, have a friend or significant other massage the injection site several times when you get home. I had a bit of bruising and a lower back ache for the remainder of the day after the first injections and was fine the next day.
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Hi, everyone,
I asked my onc if any of his patients had mentioned se's from generic Femara. He said, so far, "no," but that only a few are on it so far. I will switch in a couple of months and let you know. I see a neurologist today about my wrists, hands, and now sometimes my feet - stinging, throbbing, all that stuff. In a way, I'd love to blame it on Femara, but it is working so well for me, it's probably best if it isn't. Hope I get answers soon.
Wishing everyone a good day,
Lane
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Hi:
Lane: Good luck with your appointment, hope you get some answers. It sometimes seems hard to figure out if the pain is a result of cancer or a s/e of the drugs.
Amyjo: Hope your onc will be able to find another cost assistance program for you. You seem to be doing so well now. Good for you!
Regards,
Florence
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Hey there ladies, This has nothing to do with hormonal treatments, except that it has made our family really happy. We now have a new grandson, Micah James born Aug. 6th, 8 lbs. 11 ozs. and 21 inches long.
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I have recently been diagnosed with stage 4,ilc, into my lymph nodes up to my neck and mets to bones in like 6 places... my onc had put me on femara and monthly zometa ...it has only been a month so othing to report... however , there is such a part of me that wonders why they dont just zap it with chemo so they can operate. now my doc says some studies show removing the original site of the cancer may not help in the reoccourance.
I am beginning to understand more after reading the posts from all of you wonderful ladies! and am realizing its about daily survival living our life ... i am trying hard to keep working and busy ,but these achey bones and exhaustion make it hard some days... i am only 53 and 3/4 lol , and want to continue living ,but there is a part of me that want to go on SSD so that i may live my life not just work ... however insurance is the issue , as i would never afford cobra for more than 6 months .. and you dont get medicare until out for 2 years................. just dont seem fair ..
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It isn't fair, I'm in the same boat! You would think with our dx it wouldn't matter.
Foxy0 -
Great news !!
I wil lhave my first pet scan since beginning Femara the beginning of OCT.... am hoping for no progression...
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i am stage iv ilc, into nodes up to my neck and bone mets in like 6 places... on Femara for past month and now doc wants a pet scan end of sept after only 2 months?? she originally said it would be 3-4 ... so of course I am nervous and thinking oh crap she must have felt something in my lymph nodes ... somy wuestions is " HOW DO YOU GIRLS KEEP YOUR FAITH AND KEEP MOVING in the positive direction ??? I have strong faith and lots of support but when I get into my bed at night I just begin to weep because I am afraid and I think of my grandkids etc .. .
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Hi Rosie, sorry you need to be here but glad you have found us. Keeping the faith is not that easy, first of all you need to accept what is happening and learn to go with the flow. That's easier said than done I know, and at the moment, you are still dealing with the fear that this disease brings with it. Take it from me, that time is a really good healer. Let the tears come as they need as they are a form of release and healing for you. I have been dealing with BC for a while now and find that living just one day at a time is a good way to get through. Enjoying each and everything that presents it self on that day to the fullest helps to keep your mind busy and away from dwelling on the fact that your life has been shortened. If you are having real difficulty sleeping or with being depressed, ask your doc for some meds to help you through this period, it doesn't mean that you will need them for ever, just for now.
Coming here to ask questions and just chat is a really good thing to do also as we truly do get where you are coming from.
Love n hugs. Chrissy
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Rosie - Chrissy is so right, the tear are a release and a big part of the healing process. So jut go ahead and cry even if you don't know what exactly is wrong and cannot express what you are crying about to other. My DH (truly dear) quickly leaned not to as and just hold me close for a while. Feel free to express anything you are feeling or questions you have. As for keeping the faith and moving in a positive direstion, it is not easy. You have to make a conscious effort everyday to stay as busy as your health will allow and if you are at a point in life where you are free to volunteer, then do so, it will help keep you mind on your diagnosis and just live life the best you can each day as it comes. I have a good support system of friends and family, but this is the best place to express how I feel and what is going on with me. I also have a webpage blog at www.caringbridge.org. It is free and I have let all my friends and family know about it and they can choose to get updates whenever I post anything. I tell them what is going on in my life and the good parts of how I am doing and if there is something I need them to pray about. I do not tell them everything as I don't want them to worry about things that are beyond their control. I do tell the ladies here everything, good bad, and ugly and the love, encouragement and support they have shown me over the last year since I joined has been amazing. So glad you found this place of safe experssion. Know that we all have been and are going through the same things you are so you are not alone and we love and really do care about you.
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Faslodex No 16 yesterday. Almost becoming routine at this point, if exposing your butt and being given two shots can ever be routine. Markers haven't moved so oncologist assumes that I am still NED. They won't order more scans for a while. I didn't ask when since I don't really want to know particularly.
My only disappointment was that the volunteer fridge didn't have V8 which I allow myself as a "reward" for getting the treatments. Had to settle for a ginger ale.
*susan*
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Susan, that volunteer fridge sounds like a great idea. Good sign with the markers!
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I've been on weekly taxotere along with aredia and faslodex. No SEs at all with the faslodex except some muscle pain at injection site.
Xxoo
Melissa0 -
I got back the results of my labwork and everything is still A-OK. This means there is no hurry to get a scan. My onc wants me to wait until a new machine is installed in a month. He feels I'm good now to get scanned just once a year after that. I did tell him I have this dry cough. He says it could be the ozone pollution. I think it's the Femara. It's drying everything out!
Tomorrow is my 4-year cancerversary! Three and half years on Femara. Looking ahead I want to ask my onc about this study, excerpt below and link here - http://www.ascopost.com/articles/june-15-2011/'paradoxical'-result-tying-estrogen-to-reduced-risk-of-breast-cancer-is-consistent-with-laboratory-data.aspx
Finding out more about how estrogen functions in cells that have been deprived of estrogen for years will provide additional tools for developing therapeutic paradigms, Dr. Jordan said. He cited the Study of Letrozole Extension (SOLE) trial, which is comparing breast cancer recurrence rates among women who have completed 4 to 6 years of adjuvant endocrine therapy with a SERM and/or aromatase inhibitor and were then randomly assigned to letrozole either continuously or intermittently with 3-month drug holidays every year for 5 years. "Let's see if the woman's own estrogen, like little pulses every 3 months, can improve recurrence rates in the intermittent-letrozole arm compared with the continuous-letrozole arm. That may just drive antihormone therapy more," Dr. Jordan said.
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HeidiHill,
Congratulations on FOUR years! That's wonderful! I read the article, and my onc has mentioned to me the possibility of stopping the Femara for a few months when it stops working, rather than switching to a different AI. It sounds interesting, and makes sense to me.
I saw a neurologist and had a brain MRI to make sure there was no metastasis nor MS, due to my burning/stinging in the feet and hands. Those 2 things have been ruled out - a huge relief - and I passed the EMG test. Only a very small amount of weakness and numbness. So, she suggested I wait a couple months and see what happens. I've been given a prescription for Neurontin from my family physician, but I'll wait and ask my onc what he things on Thurs. I don't know whether I'm ready for a 3/day drug at this point. The pain comes and goes and is tolerable, just an annoyance. Also, I'm sticking to my thinking that it's the Femara causing it all indirectly. My D and B12 are normal. I think I'm just horribly hormonally imbalanced! If it doesn't get worse, I'll just try to keep my mouth shut, I guess! I'm doing well on it, so know I shouldn't complain.
Lane
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Amyjo,
Little Micah is adorable. You must be bursting with pride!
Lane
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Well wish me luck. I start Anastrozole next week after my leg surgery. I have the script in hand.
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I just joined this forum to see what other women with similar diagnoses have experienced. I went from not knowing I had cancer to learning that I have Stage IV in the past month. I just began treatment with generic Femara last Friday. I feel unprepared for the impact of both the cancer and the treatment on how I feel. My doctor is great, but I don't think she has the day to day personal experience that might help me know what to expect. I will be reading your posts to try to get a glimpse of where this new road will lead. I pray I can walk it with courage and grace.
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Welcome Pilgrim to the club no one wants to be in. I started out Stage IV crom the get go too. My mets were extensive - bone, liver, lung, skin, and pleural effusions. I did rads to my tibia and humerous, then chemo (if you feel like reading a book check out my bio) and now my cancer is under control enough to switch to Anastrozole.
There are a great group of women and men here that can answer any questions you have or just listen to you vent if you want.
Feel free to start a new thread with any questions you might have or just to introduce yourself (youe post here can get lost in the crowd).0 -
Thanks, Lane! That's good news that they've ruled out mets or MS. Whew! And your onc's idea sounds pretty good to me. Why switch if you can resensitize? Plus you can have a long break and detox. I make it sound like going to a spa, which of course, it isn't!
Reesie, good luck on the anastrazole! Glad you're forging ahead.
Pilgrim, I'm sorry you're here, but if there's anything a veteran Femara-taker can do to help...
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Hi Pilgrim
I also presented with a low volume of mets about 2 years ago. No symptoms. I have been stable on Tamoxifen for 2 years, hope you get good results from Femara.
It did take some time to get my head around this dx. How you feel about your dx now is probably not how you will feel three months from now. (Definitely takes some getting used to!) My center has a counselor who deals with cancer patients exclusively. There are also some good support groups near me.
Hang in there.
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Hi Pilgrim,
I have to say ditto to what EnglishMajor said. I presented with bone mets from the get go almost 2 years ago. Once you're settled into your plan things will seem less surreal. It takes some time to wrap your head around it. Hang in there and keep in touch with this site. It's been a life saver for me.
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My mother in law (50) was just diagnosed with metastatic BC after 10 years of being "cured" in which she had a masectomy and 4 stages of chemo. It has now shown up in her lungs and bone. I am concerned with what her onco is perscribing for treatment. He suggested Femara. My research shows this is a option but may not be the best. If you have experience with this please let me know. Her onco did not give her any indication of the statisitcs of this stage and I fear she thinks this is the cure.
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Pilgrm and tavish - I have been on Femara for 13 months now and is has worked really well for me. I was diagnosed at Stage IV with mets to bones, liver and lungs as the original diagnosis in July 2010. From my labs test last month my Circulating Tumor Marker Count is down to 1, it started at 620 last year. My CA 27/29 is down to 27 from over 6,000, which is extremely high even for Stage IV. It is not a cure but has gotten me to a point where if the number stay where they are and the tests, (MRI, PET/CT and Bone Scan) do not show any progression they will say I am NERD, No Evidence of Recurring Disease. I do have a lot of joint pain and some mussle pain from the Femara which has gotten worse over the last couple of months, but I also have had arthritus since I was 17 and I am now 61 so most of the joint pain is to be expected. All in all I have done very well on Femara and plan to stay with it for another 4 years. At that time I will decide what the next step should be. Both of you please keep us informed about what you do and how you are doing. If you have any question you can PM me any time.
Amy Jo
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Thanks for the welcome. I am pleased to find this site and hear about your experiences. My medical oncologist next will be sending me for an oral surgeon to examine my mouth before proceeding with some kind of IV bone strengthening treatment. Does anyone know why the dental exam is needed? I think she told me but I was kind of preoccupied with the fact that my spinal biopsy had come back positive. So far so good with the generic Femera--but then again it will only be one week as of tomorrow. I don't know my labs yet. I see some of you have been on Femera for a long time. Are you able to work full time? Do you find the sites of the cancer hurt, or is there more pain from the side effects of the meds?
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