Hormonal Treatment for Stage IV
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Brenda - I take Cymbalta. I notice from refill to refill that sometimes it seems that the pills one month are not as good as the prior month. Maybe Teva changed the way they put the pill together, different inactive ingredients. I wonder if you can call them and ask? You could also report it to the FDA, they encourage that kind of stuff for just this kind of thing. I would be in trouble if I was itchy, I am a "picker" and just can't stop itching when I have a bug bite, so I can't imagine itching all over! I hope you find a solution soon.
Amy
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Amy, Thanks for your suggestions. Finally I am better today, and I will see my MO tomorrow. I will discuss your suggestions and many other questions about the whole tamoxifen issue when I see him. He may wish to prescribe the tamoxifen with a specific different manufacturer, which I would try to take without worrying excessively about possible reactions, or he may have another idea. I have a list of questions, and I am taking my husband with me for this one!
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I had a difficult, disappointing and, frankly, troubling visit with my MO today to discuss my recent problems with tamoxifen and treatment options. He did not think that changing manufacturers of tamoxifen would address the problems I recently had taking it and agreed that it would be too risky to try that option. I have taken Evista in the past, which ended in my mets diagnosis. I also have taken Arimidex in the past, for well over a year, and it was an absolutely horrible experience; for that reason my MO does not think I should try another AI. He ultimately recommended Fareston, which I understand has not been used often in the U.S.. I am wondering whether anyone has taken Fareston and, if so, what your experience has been.
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Hello all, just a quick question if someone here can help me...my mum is stage 4 with brain mets and has been on femara since jan 2012. she gets abdominal dicomfort/dull ache almost like tied knot feeling every now and then...does any one here have any such similar symptoms..?
Thank u all xx
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Hello bestfriend05, sorry I can't help you with your question. I have no brain mets (as far as I know), but I had been on Femara from Oct. 2008 to Jan. 2010 when I was dx with lung mets. Before the Femara I had been on Arimidex for a year until I could not handle the SEs anymore. The Femara did not have any SEs at all for me, but everybody reacts different. When did your mom have her last PET or CT scan? If everything is fine with her abdomen, it might just be a Femara SE. It can take sometimes months before we get any SEs from a new tx.
Good luck to both of you,
hugs,
Helmie0 -
hi helmie, thank u for your response..yes was hoping some one else had similar experience from femara, will spk to doc again if symptoms continue though..thanks again xx
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bumping
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Whew! Had a very challenging two+ weeks recovering from my horrible reaction to and withdrawing from tamoxifen. I had heard that I might experience the mood swings, emotional lability, insomnia, and increased hot flashes that I had experienced in starting tamoxifen, but I was surprised when I had severe migraine headaches for four days in a row. I had experienced migraines when I started tamoxifen, and I guess I just didn't expect that would happen with cessation, but it did. I certainly hope I don't get more of them. I will give my body a few weeks rest before I start fareston. Here's hoping I won't have really intense side effects with that one!
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Brenda - glad that is over for you. Best of luck with the fareston.
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Brenda,
I know one other person who had extreme reactions to Tomixifen. She ended up in the hospital. Sometimes it is hard to remember that these drugs we take, and consider to be mild, are actually very powerful.
I am so sorry to hear that your last two weeks have been so very difficult. Let's hope that the fareston is more gentle on your system.
*susan*
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Brenda - glad the withdrawal is over. Here is hoping that the fareston is easier on you. Let us know how you are doing.
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I have noticed, that since I started Femara, I have much more severe muscle jerks when I am trying to fall asleep than I did before. They wake me up, and even my husband commented on how many more of these I am having. They are actually more of a whole body jerk, like someone gave me a shove. Is that normal? I usually have all the abnormal side effects of things...
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Mzmerz do you take magnesium? It's a great suppliment and does help with that sort of thing as well as helping with muscle cramps. The twitches you are getting are muscle spasm so the magnesiun should help a lot.
Love n hugs. Chrissy
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Actually my mag is low, and I am working on bringing it up. Maybe I should take up my doc on an infusion, I just hate them! They give me the "runs". Thanks for the info!
Amy
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Thanks to all for the kind support! I am feeling better each day and hope that I will feel strong enough when I start fareston in June.
Mzmerz, I think Chrissy's comments about magnesium are helpful. I also would like to mention that, in addition to intense muscle cramps in my feet throughout my experience with tamoxifen, I also had more "whole body jerks." I hope getting your mag up will help with your spasms.
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i am er-pr-. i wish you best of luck w the treatment. how are you feeling after your recent surgery? u are such a loyal supporter on these boards. thank you for all you do.
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hi bestfriend, sorry to hear about your mom's pain. i was diagnosed in jan '12 too with mets behind my eyes. i sometimes have abdominal pains, nausea and feels like a knot in my stomach. my dr said all three symptoms could be due to the femara and he gave me a rx for the nausea which i have just filled and haven't tried yet.
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Thanks pampam, sorry to hear about your disgnosis, hope u r coping well and wishing u all the best, yes trying to find out why mum has these side effects now, bloodwork has comeback and shows elevated bilirubin..don't know what it means?
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I was diagnosed in june of last year stage iv,ILC mets to t8,hips,one rib,sternum and lymph nodes up to my neck... began on Femara in late August 11... my TM were only 282 when I began , but after two months it went down to 181... and now a year later they are 34.7 and last scan (jan) showed NED ...(doc called it remission) however I call it ned .... I have had many days wondering omg when will it start up again then I realized that If I am worrying all the time then I am NOT LIVING .! ps I started the generic Femara by Accord healthcare mfg by Intas pharmaceuticals... and since switching and also taking them at night now , my side effects are almost completely gone !only on damp days do I have any pain in the joints..
I am praying for along run on these but who knows !
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sorry bestfriend05 i don't know what that means either. i was coping ok but today i got some bad news from my pet scan. found a 4mm spot on my lung. it really throws you, you know? i'm scared because i don't know what's next but will talk more with my onc tomorrow.
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rosie06ct, So glad to hear your very positive outcome with femara, and I hope you will indeed have a long run with it.
pampam, I know this news is very distressing and scary, but I hope your MO will guide you with developing a treatment plan that will tackle this progression and give you a good outcome. Sometimes just having a plan helps us to feel more in control, which helps to allay some of the anxiety and fear. Did you ever get your abdominal cramps and nausea under control? When I had that problem, I took the generic for levsin--hyomax--and it worked wonders.
I just started fareston yesterday, finally. I was SO sick with the tamoxifen reaction then troubled by quite a few symptoms with abrupt withdrawal, and it took well over a month before I could get myself physically and psychologically ready to start this new med. I have done a fair amount of research on fareston (still want to do more, if I can find the energy) and I have talked to my internist and a pharmacist with the drug maker about it. I decided I was as ready as I would ever be and decided to be optimistic about taking it. My internist said he hopes I don't get sick because there are so many meds that you are not supposed to take with fareston. I'm trying not to worry about that. By the way, if anyone else decides to try this drug and has private insurance, you can get $50 coupons (12 in one year) to help with the copay (mine was going to be $75) from the drug maker.
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rosie06ct - hope you have a long run with the Femara. I am going to check out which generic I am taking and see if taking a different brand would make a difference for me. The name brand is just WAY too expensive even with insurance.
Bestfriend05 - elevated bilirubin count means the liver is not doing its function of processing waste or metabolizing thing that go through our body. In adults it generally leads to jaundice or other liver issues. Definitely let your mom know to have her liver function tested at the next visit. I have bone, lung and liver mets since my original dx in July 2010 and I have been on Femara since day 1 and have had very good results with it so far. I am also on Aredia (IV every 4 weeks) for the bone mets. I do not have brain mets so far but that is what MO thinks will be next for me. The knotting feeling in the abdomen is one of my se's of Femara and the nausea medication does help, seems like after that feeling I do get really sick feeling after the knotting feeling starts. I don't know if I am going to throw up or pass out. Enough of that, just let your mom know the nausea meds work. She may also need to get something to help with constipation if she is having that problem also.
pampam - so sorry to hear about your progression. Try not to worry so much that you forget to keep living. There are so many treatment option available now and more on the horizon so just keep going one day at a time. {{{{{{{{{{HUGS}}}}}}}}}}
Brendatrue - glad you found some financial help for some of the expense of your new treatment. I know every little bit helps. I honestly don't know how we can keep on paying these high prices for our drugs. Even with insurance the name brand of Femara would cost me $562.13 and the generic cost $10.00 go figure. I wish the makers of the drugs would lower their prices when the generic becomes available. I have more and more intense SEs from the generic than I had on the name brand. Oh well, whatever it takes to keep us planning for the future.
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I have been reading, but have been silent for awhile, and just trying to get my head around what it means to be stage IV. My first diagnosis of BC came in 1987. I had a tiny 2 mm tumor. I had surgery with no further treatment. All was well for 24 years, but in January 2011, lung nodules were seen on routine chest X-ray. Biopsy soon followed, and then a trip to Roswell Park Cancer Center to see my MO. Yes, it was breast cancer again and this time Stage IV. I have been on Arimidex for 1 year and 5 months, and was NED at the end of 12 months. I am having some SEs. Knee pain is the worst and now my finger tips are sore and tingling. I'm 73 and pushing hard to stay active, and to enjoy the happy moments. I am so grateful for arimidex and the possibility that it may keep me NED for a little while longer. I also grateful to all of you, and that this is a safe place to share and encourage each other. Sending hope and hugs, Ninalee
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Hi ninalee -Welcome. So sorry that you have progressed to stage IV - sure goes to prove that this damn disease is so very unpredictable. I am happy to hear however, that you are currently NED! That is awsome. I hope that you continue to have a great run with Arimidex. Sometimes the benefits of tx do outweigh the SEs (as long as the SEs are not too bad).
Hang in there - May we all endure what life has brought us with grace and strength.
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Ninalee, I'm glad for you that arimidex has helped you to have NED status, and I hope it continues! I have maintained NED status for three years (with tamoxifen) and hope that will continue now that I have started fareston. Certainly I and many others understand the challenge of "trying to get your head around" what it means to have metastatic disease, and I hope it has helped you to have access to this site. It sounds like you are trying to focus on living in spite of the challenges of side effects. I agree with barsco about the benefits of treatment sometimes outweighing the SE's, although I have been in a situation or two when the benefits did not outweigh the SE's and I had to change the course of my treatment. Over time I also have built my tolerance for side effects, although that is not to say that I won't have to change treatment course again. Living with cancer/the legacy of cancer is definitely a challenging experience, and one that requires us to be vigilant and flexible. At least I can say that the learning experience has helped me to live my life with more awareness, but I would have loved to have learned how to do that better without cancer! I wish you well and hope your side effects will be manageable. (By the way, I take a glucosamine/chondroitin supplement for my knee pain, and it really helps. Also I had a friend who used B6 for neuropathic pain. Perhaps you can check with your oncologist about these options for side effect management.)0
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I was on Femara after my intial diagnosis Stage iv, but I had way too many side effects. Tried taking pain meds, tried taking it at night, in the end my onc stopped it. After a couple months of trying to recover, she started me on Faslodex, which has done the trick so far. Not as many side effects and keeping the spread down. I also had a new very small "node" on my left lung, and it doubled in size, but has since been stable. I understand the fear--much easier for me to handle the idea of mets to bones than mets to lungs. Keep on keeping on, ladies.
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Pilgrim4Life, I'm glad to hear that faslodex is working for you! I have had to discontinue the fareston after only about 12 days taking it. I started having almost the exact same side effect profile as I did with the tamoxifen a few months ago, and I was up all Saturday night just trying to stay calm when the intensity started to peak and become almost unmanageable. But I made it (I kept thinking of that old song: "There's Got to Be a Morning After"!) and now I am trying to support my body feeling better again. I will see my MO on the 17th, and I guess he will recommend Femara or Aromasin next, which raises a whole host of issues, since I have moderate osteopenia and a history of very bad reactions to bone building drugs. He has already told me that he wants to save faslodex for the time that I may no longer have NED status. Ugh...the choices that we have to make!
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I was having a lot of side effects on Femara and another AI I don't remember the name of. One thing that was consistent though, was that I could not tolerate them at all. Was sick in bed 24/7 until...... I started out with 1/2 pill for a week and then increased to the whole pill the next week. No problems after that. Might be worth a try for anyone with SE problems.
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Karen, I think that is a great suggestion as well. Each time I have started a hormal therapy med, I have started at half dose then slowly built to full dose. I plan to do that whenever I start the next med, and I hope that it helps me to make the transition better. I'm glad to know that you had no problems after you tried that approach!
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I am posting this both on this thread and the natural thread as I am not sure which is working (or maybe both are) but for me it is a good, no, great news day. I have been on Arimidex (getting from Arimidex Direct program) since April after being dx Stage IV in Nov. 2011. Didn't see an oncologist until March for lack of insurance til then but started on the Budwig Diet in January and have continued that even after starting Arimidex. I just received the results from the tumor marker tests from last weeks visit to my ocologist.
CA 15.5 March 100 May 49 July 25 (which is considered normal)
CEA 6.8 2.8 1.9
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