Hormonal Treatment for Stage IV
Comments
-
Hi alesta29,
You will be fine. I have been diagnosed recurrence last September with mets multi-liver, multi-lung, and bones(spine+ribs). I had chemo Taxotere+Avastin and Zometa for 7 cycles, and then Avastin maintenance+Aromasin+zometa. I am so far so good.
0 -
Thanks for that plumblossom. I think I am starting off on Tamoxifen but not confirmed yet. While I am strongly hormone positive and have great hopes for a run on hormones, I do worry that they won't work (alongside the million other damn worries that keep popping into my head!)
Laurie x
0 -
Please forgive me for jumping in on this discussion and I don't mean to change to another topic, but I've never been on one of these forums before. My wife has stage IV breast cancer metastacis. She has been on Femara for 2 months and has radically elevated AST and ALT levels. The AST is at 276 when normal range is 15-41. The ALT is 454 and normal range is 14-54. Has anyone taken this drug and experienced this? Her doctor is now recommending a PT Scan to find out what is going on. Thank you for any help you can give us and, once again, I'm sorry for jumping in and I admire all your courage during your battle with cancer. God bless, Sean
0 -
Sean, Both of those have to do with liver function I believe. I don't know if Femara is supposed to be hard on your liver or not.....many drugs are. Do you know what the numbers were before she started on the Femara? Don't apologize for jumping in, you are being a good husband doing research for your wife.
0 -
Mary,
Thanks for your reply. Her numbers were normal at 32 on AST and 36 on ALT right before going on Femara. She did go on vitamin supplements around the same time, so it could be either one.
0 -
Sean
it might be useful if you post a new message in the main stage IV forum with some more details re: location of your wife's mets and treatment so far etc and you'll probably get a ton of people chipping in.
So good to see you supporting her and looking out for her.
Love to you both
Laurie x
0 -
First dx, umx, chemo 1994. 5 years tamoxifen (manageable side effects). Dx stage IV Feb 2010 w/ mets to skelton, skull, lung - six rounds chemo, continuing on arimidex & zometa.
My onc has just recommended that I go on Faslodex in addition to Arimidex, which I have been on since finishing chemo a little over a year ago. NED until I started having a lot of headaches last summer. Had an MRI of head in August, showed NED. Continued to have headaches and generally felt crappy. Had a bone scan a couple of weeks ago - appears to show mets throughout my skeleton including skull. Onc thinks there is likely progression, but that bone scan can make it appear worse than it is because healing areas will light up as well as mets. Waiting for additional PET scans and check of tumor markers (which had dropped from 4000 to 400 with treatment as of June 2011.) My confidence in scans is shattered - they used to make me feel so confident I was cancer free!
Anyway, I thought his logic for staying on Arimidex while adding Faslodex was interesting. He said that not all the cancer cells are going to mutate at once, so that there are multiple "colonies" of cells - those on which the Arimidex is working and will continue to work, those that the Arimidex is no longer working on that might respond to Faslodex, and possibly cells that would never respond to either or that are responsive to both. Hoping the side effects won't be terrible.
0 -
Thanks Laurie! I'll try that. We will say a prayer for you and your family this evening.
God bless, Sean
0 -
I'm new to the Stage IV group--I had an MRI on 11/04/2011 and a few days later, a Bone Biopsy (lower spine). Bone mets have been confirmed and I had my first doses of Falsodex and Zometa just today. So far, so good--I'm feeling okay!
I had my first dx in 2003, Stage I, a lumpectomy and 5 years of Arimidex (had some joint pain and hot flashes). Then, in the Spring of this year, a new primary tumor (I cm. stage I) in the same breast. I had a mastectomy, started on Aromasin and figured all was well. Hah--should have known better. Cancer is an evil, sneaky beast.
Now, bone mets to the lower spine...Gaaahh! ***Where is our "run for the hills" smiley?***
Hi to MaryBe! (We shared a meal with some local cancer warrrior-women this summer)..
SeanQ--thoughts and prayers to you and your wife.
Prayers to all,
Aerial
0 -
I saw my oncologist yesterday and found out my treatment plan.
He put me on Faslodex and Zometa. I got my "loading dose" of Faslodex yesterday, next dose on Dec. 5th and then monthly. I was expecting one of the pill form of AI's.
In reading, it seems that this is a drug that most went to after being on the other AI's. Not sure why he chose it first. Extensive bone mets, lesion in liver and there are some tiny lesions in my peritoneum maybe? Personal choice from experience? My age?
I was not familiar with this drug and didn't realize so many were getting it.
0 -
Naniam--It sounds like we are on the same drug treatment and on a similar time schedule. My next shot of Falsodex is on December 6th. Talk about a kick in the butt--I got an injection in each butt cheek!
Thankfully I am well padded in that area and I barely felt the needle. The Zometa is more troublesome because I am very creeped out by IV needles. I try to zone out by reading or listening to an audio book.
Take care everyone!
0 -
Ask about Xgeva. I was on zometa for many years....something like 8....and this past year he switched me to Xgeva which is just a simple little monthy injection....you can get it in your arm or stomach. I think it does the same thing as Zometa but there is less change of it causing kidney problems.....don't quote me on that, but I think that is the reason he preferred it. I have had no SEs with it.
0 -
i agree with marybe. i had been on aromasin for 5 years. femara and arimadex gave me terrible body aches but aromasin was much better and after 4 months there were no se. unfortunately i had progression so the doctor has had me on fasloddex [2 shots in upper tush] and xgeva[1 shot in fat of stomach] whole thing takes 10 minutes and i'm good for the next 4 weeks. only side effect is slight tiredness and dull aches in my hips for 2 weeks
0 -
Hi, I just found out I have mets to my liver, sternum, hip and pancreas (a small spot, he said) last week. I was so freaked the couple of days before I got the results from the bone scan and PET scan. I had horrible crushing pain in the middle of my chest. My PS said it was probably just inflammation flaring up from the rad damage. He was so wrong as the tests proved. Anyhow, I couldn't sleep because I was so afraid I wouldn't wake up. Isn't that just stupid??? I am so glad I found this forum. I was thinking my life was over and I would die soon. Reading this has given me hope that you can live with stage 4. I am so freaked out about them wanting to put me into meno. I am 47 but I am so sensitive to hormonal imbalance that I am afraid that I might not get through it. With my bilateral masts I went completely crazy in the hosp. I was crying and screaming and acting so crazy that my fiance left and went back to the hotel. The nurse finally said it was the sudden loss of estrogen from the masts. I am trying to get a counseling appt for the both of us to handle this. I am on Tamoxifen until I go back in two weeks to get the shot to stop the estrogen production and to take Letrozel. Has anyone experienced horrible depression and/or this type of behavior when going through this? I don't think my fiance could take me acting this way again. Any help ... would help!
0 -
Naturelover, I am sure the pain you were having was from the mets in your sternum. Before they discovered I had mets there, it felt like a little guy was in there with and ice pick just chipping away. You will probably be put on a treatment for the bones.....either zometa or Xgeva. I have mets everywhere you do with the exception of the pancreas. The good news is that now that they know it is cancer, they can treat it. Your life is not over, but most likely it will change. There will be a lot of doctor's appointments, probably some down periods where you wonder if it is all worth it, you will see changes in your body, but you will be getting treatment for the problem so you are in a much better place than you were before you were diagnosed. When I was lst diagnosed Stage lV I was 48 years old and still having regular periods, and I mean regular, they were like clockwork. I think maybe I had one period after starting on tamoxifen and then it was like instant menopause. Maybe you won't even need the shot to stop estrogen production. I had the hot flashes, night sweats, the whole bit, but it was not something I could not live with.....and the good news was it shrunk my tumors over 50 % and got me into remission....when the tamoxifen quit working I was on arimidex briefly before my onco switched me to aromasin since he had heard it got more dramatic results.....it did.....took my CA 27.29 ( tumor markers, you will learn all about this stuff) down to normal range and got rid of the tumors in my lungs and kept everything else stable....then when that stopped I was on faslodex and then that was the end of the hormonals for me. But they worked for 8 years. So far as your freaking out, screaming and crying, it was probably due to the fact that you had just had a rather painful surgery, they hacked off your breasts (and this is definitely something you have to adjust to mentally), and the reality that you had breast cancer hit you.....I don't know about it immediately effecting your estrogen levels, but I am not a doctor. There are meds they can give you to help deal with depression and anxiety and also hot flashes. And if your fiance' truly loves you, he will not only put up with your moods, he will help you through them.....just remember it's not going to be like this forever. Counseling may be a good thing for you both. The body is a miraculous thing and it will adjust. In my opinion the fact your onco is going to treat you hormonally and not jumping into chemo, is a good thing. Living with Stage lV is not always a picnic, but consider the alternative. By the way, I have been Stage lV now for almost 14 years and life is actually quite good. I wish you the very best.....you can do this. The women on these threads will help you a lot. Marybe
0 -
Hi Naturelover welcome to BCO. So glad you found this place as it contains some really wonderful women who are willing to share their knowledge, their shoulders and their laughter in order that you can more easily deal with this monster. If you have any questions feel free to ask any time there is usually someone around to answer.
BCO's main site also has a whole lot of information about stages, treatments and side effects so yoiu may find that also very helpful.
Oh, by the way, I was dx'd with bone mets in May 2009 and have been treated with AI's only and I am NED (no evidence of disease) at the moment so you definitely can live with stage IV it is no longer the automatic death sentence it once was. Have faith, it can be done.
Love n hugs. Chrissy
0 -
Maybe
I have to say I am in tears from your reply. I feel like I am not alone anymore. You know that feeling I am sure. I have had many problems with hormones all of my life. Even as a teen I would experience really bad PMS to the point I felt suicidal at times. It was always just before my periods and then after I started I was fine. i have been that way ever since. I was on birth control pills twice and went crazy (uncontrollable crying, angry for no reason and such) both times. The last time my gyn said I cannot take the pill because I was so sensitive to hormonal changes (that was years ago). Then with the mast (I did read that this can happen as there is much estrogen prodution in breast tissue) when I went crazy. I am just so worried that this will happen again. I mustered up bravery and told my new onc about this concern. He did start me on Zoloft last week. Then I read it can interfere with Tamo. AHHHHHHHHHHH. I don;t know which treatment to take... stay on the Tamo or do the shots and the Letrzol. I wish I knew what would effect me the least. The pain I probably can take as I have had more than my share of that. I just don;t want to do something stupid because I am in a hormonal hell zone. And you are right, the bone pain in the sternum is no fun at all. I was diagnosed at age 42 with DCIS, had a lumpectomy first, then a new spot came up that was invasive. Then went for the bilateral masts, 3 round of CMF (all they could talk me into) and 8 weeks of rads. My nodes were clean so I thought I had this beaten. They wanted me to take Tamo before but in the first couple of weeks I had terrible mood swings and depression and stopped taking it. Stupid, stupid. But I see people here have taken it and still ended up with mets.I have been dealing too much with rad damage, infections and pain from the failed reconstruction in the past year to keep up with keeping an eye on the cancer. I can't go back... only move forward. You all here have given me much inspiration. I need to make a decision in the next two weeks. I have been trying to read what other reactions people have had but I know no one knows how I will react. It is stupid because I want to live, yet I can get so depressed I don;t feel like living. My 21 yo son comminted sucide 5 weeks ago the day after I was rushed to the er with the extreme pain of the liver mets (that is what started this whole thing). There they found I had a lesion in my liver that night and sent me home on morphine. The next morning I went to the drs office with my daughter and my son killed himself that morning before we came back, This is already affecting my family so much. I need to be strong and try to find the best drug that will work for me and not make me crazy. Any other suggedtions from anyone I would so much appreciated. I know you all are not doctors, yet you all deal with what some doctors won't tell you about. Any good medications for the mood swings or depression that work? Any treatment that is less likely to cause this side effect? Thank you all so much for being here. Gale
0 -
My God, that's absolutely terrible about your son - you have so much emotional stuff to deal with just now, no wonder you're feeling overwhelmed. You really do need someone to talk to, both about your medical situation and your son. I hope you get the help and advice you need and come back to let us know how you are.
Best wishes,
Barbara
0 -
Gale - Sorry you have to be here on this thread and very sorry to hear about the loss of your son. ((HUGS)) to you. I do hope that you find a therapist that can help you and your family through everything that you are having to deal with right now.
Marybe - I too found inspiration in your post - stageIV is a very scary place to be. Thank you for your encouragement and hope.
0 -
Gale... my heart aches for you. I hope you can find a wise, kind counsellor to help you and your suffering family.
I wanted to encourage you about the anti-hormonals, if I can.
With your history of extreme hormonal woes, you might actually find you'll feel calmer once all your hormonal excesses are quelled. I've been on Femara (letrozole) for a year now. I was terrified to start an AI, and I put off an oophorectomy for three years because I was so freaked about it. And I'll be honest, there are plenty of cons to all these anti-hormonal measures, and you've undoubtedly read about them here on the boards -- the joint aches, hot flashes, etc. I have all of that, and I have to diligently take measures daily to help my odds of getting good sleep and keeping the zero-estrogen depression demon at bay. SE's are personal and individual... and so we each have to figure out what sorts of things actually help us with those challenges. The way I look at it now is that tending to those physical needs brought on by Femara is all a part of my every day life routine now, like brushing my teeth. So yeah, anti-hormonals are a piece of work, I won't deny that.
However, if there is a "pro" to balance all those cons, this is it for me -- I no longer have PMS. That was a real problem for me, a monthly nightmare that slung me around mercilessly from sad, weepy despair one hour to senseless fury the next and then back again without warning. Since Femara, that rollercoaster is GONE. I do not miss that horrible feeling of my insides grinding, racing and raging while my 'outside' was in heavy slow motion. I don't miss those suffocating thoughts that nobody really liked me or appreciated me and everything was pointless -- a feeling that absolutely ate me alive every month, starting exactly 48 hours before my period.
Nowadays I'm stiff and my joints ache a bit and my clothes are a size larger... but inside I am way more chilled now. I'm calmer, steadier, more patient, and more compassionate toward the whole suffering human race now. That feels pretty nice. I feel like a cloak of wisdom has gently settled down over my shoulders over the past year. That's nice, too.
I try to remind myself of these pros whenever the cons start to get me down. So all that to say this -- don't borrow worries from the future. It might not be as bad as you fear.
Stick with us, dear... we'll try to be there for you. Bless you.
0 -
Gale, I sent you a PM, but being so new to the threads, I am not sure if you know how to view a PM or even know when you have one....anyway, just wanted you to know that I sympathize with all you are going through and am so sorry about your son. Don't blame yourself for anything....for the cancer recurring because you stopped the tamoxifen, for your son, for anything. Not probably the best vernacular, but the truth, Shit Happens.
It is good you have a few weeks to gather info and figure out what is the best route for you to go. Do you think it would be good to get another opinion? Are there any large cancer/research type centers close to you? I went to MDA and was very impressed with the place.
That was an excellent post Lulu.....there are pros and cons to every treatment and often we don't know what they are until we try them. And unless we try something, it will be on the list of hmm, I wonder if that might have worked for me. Even our doctors do not know how we are going to react to a treatment until we are on it since we are all so different. As the saying goes nothing ventured, nothing gained. I especially liked what you said about not borrowing worries from the future....think we all tend to do that. Even though I know SEs don't happen immediately, I start looking for them the day after I do a new treatment or swallow that lst pill.
I had a patient today who has been on Femara for almost 4 years and she said she has a few SEs, but figures it is worth it. I always know when a person has had BC when I review medical histories and a drug I am familiar with pops up.
One thing I just noted on your post, Gale, is about you going to the ER with pain from your liver mets....they have always told me the the liver does not have pain receptors, but I have had a stab like jolt every once in awhile so question that. How large is your tumor? Since I am not on any treatment now other than my monthly xgeva injection for my bones, my imagination sort of runs wild when I have any aches or pains. I don't dwell on the fact I have cancer and am actually able to forget about it when I am busy doing things, but it is always there hovering in the horizon, that little black cloud following me around as it did Pooh.
0 -
Gale, I am so sorry to hear about your diagnosis and most of all the loss of your son. As a mother to 3 boys, losing your child is so devastating that you never really recover. I hope you are able to find a caring and compassionate counselor that will be there to truly listen to your sorrow and grief.
I had liver pain, mine was stabbing pain, pressure sensation, aching although the liver has no pain receptors, the encapsulated membrane does. I had progression and am now stable (hopefully just had CT scan today) I had numerous mets to both lobes and today they are so small that they do not show on the scan and 1 is a cyst. I am currently on Tamoxifen and have some mood swings,but am coping. There are meds out there to help you so dont be afraid to ask.
Marybe is our heroine. She has gone the gauntlet and is still strong, positive and is full of wisdom for us "newbies" kinda newbies"
Wishing you the best in whatever tmt you are comfortable with. Sending hugs Dawn.
0 -
Gale
Just wanted to say Hi and welcome and good to hear that you feel you're getting good support here. Sounds like things have been really tough for you recently and so sorry to read about your son.
With regard to anti-depressants, Venlafaxine (effexor) is, according to Harvard Health, the safest antidepressant to take with Tamoxifen as it doesn't inhibit the liver enzyme that allows Tamoxifen to work.
Laurie x
0 -
Alesta I heard that news from the UK and was just floored. It worked so well for me for many months that it seems an absolute shame. It really is different in mechanism that works much better than AIs for people.
0 -
First of all I would like to thank you all for allowing me to breathe this evening and for being a pillar of hope and inspiration. (I also want to apologize if I sound disgusted at times as my very best friend in the whole entire world is in the most pain I have ever witnessed and her oncologist JUST now got her in and diagnosed after months of pain and agony.) I just found this discussion board and now believe it was a path I was destined to find. My mom was diagnosed with stage 2 BC in 2007 and opted for the lumpectomy followed by radiation. She, too, was on Tamoxifen and took herself off after 2 1/2 years of horrible side affects. She began experiencing hip pain this summer and by labor day, she couldn't get off the couch. After seeing her PCP in Sept., he sent her home with steroids and a diagnosis of arthritis. Mind you, he didn't order any additional tests. He had all of her BC history, but failed to even look into that as a cause of her pain. She then visited the dr. that performed her knee replacement a few years ago and after begging for an MRI, they discovered she had 2 bulging disks in her lower back. The next option was surgery. Again, no cancer even being a blip on their radar as a source of any of this. She was scheduled for surgery the week after Thanksgiving, but by the grace of GOD, she went to a neurologist for another opinion, who FINALLY listened to her symptoms and probed further. None of her other doctor visits since September were concered with a SED rate of 85, which we now know describes inflammation in the body. He concurred with the 2 bulging disks but added that he suspected another source for the other pain that she was experiencing. Thus, he ordered a bone scan. Upon receiving these results, we now know that it is bone mets. Her scan lit up like a Christmas tree from her entire pelvic area, up her spine, in both shoulders, and in her ribs. She called her oncologist who said the earliest they could see her would be Dec. 22, which we were not going to allow. Thankfully, she was able to get in last Thursday. He confirmed the cancer and gave her morphine for the pain. (Not touching it, by the way.) She had a PET scan today and the results are due Wednesday. Needless to say, my sister and I have been in pure agony for her. I am worried that this has progressed to other organs and fear the worst right now. I am trying to remain positive and really wish she would come to Texas (MD Anderson) for her treatment plan. Her oncologist has decided that if the scan shows no other progression, he will begin fosilidex and another injection this week. I am a complete bundle of nerves right now and would love some information regarding this insane pain. My biggest fear is that we do not have much time left with her. Can you shed some light for me?
0 -
Hi Wendyleigh so sorry to hear that your mom is going through this. Welcome to BCO. Please don't dispare there are a lot of things that can be done for your mom and her pain. Once her onc has determined the full extent of her progression a treatment plan will be put in place. As for her bone pain, often radiotherapy is prescribed and this works well. Perhaps your mom needs to bring this up at her next visit.
Love n hugs. Chrissy0 -
Feb 2011 - radiation to ovaries
Mar 2011 - started Femara - normal SEs...tolerable
Nov 2011 - progression in liver - started Tamoxifen
Now I am a crazy, angry, depressed lunatic...
Someone tell me this will get better and please tell me if you've had luck with tamoxifen after failing an AI.
Love you ladies! B
0 -
Bruburn - I have not had any AI but am on tamoxifen (along with zoladex) due to liver mets. It is working very well and lesions are shrinking.
I hope the tamox works well for you. Don't give up - things will definately get better. It is just a matter of finding the right tx - maybe the tamoxifen is it!
Keep us posted
0 -
Bruburn - It will get better, in the mean time just get as much rest as you can and remember to drink lots of water. Both of which are always good for you. The rest will help with the crazy, angry depresses lunatic symptoms. ;-)
0 -
I was stage 1 in 09 did chemo, lumpectomy, radiation and was then on tamoxafin and was diagnoised this June with stage 4 with liver mets i took the meds everyday never had any side effects.
0
