Hormonal Treatment for Stage IV
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I have been so achey on arimidex that my onc today told me to go on a medication holiday for 2 weeks and see if that helps. If it does, then she said she will move me to femara. I have been on arimidex for 18months now (since initail diagnosis) and the aches seem to be getting worse lately. I was wondering how others are doing on femara. Doesn't it also have the same side effects?
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Lowrider,
Good to hear you have had good tolerance to the Faslodex and Xgeva. I started Faslodex and Aredia Feb 2010. I have some arthritis problems and the Faslodex does somewhat affect those. I switched to the Xgeva Feb 2011 since I have only 1 kidney due to kidney cancer (not a met from the breast) that is in Stage 4 failure. Xgeva is a blessing for that.
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Hi, Frapp,
I've been on Femara for 27 months and have been NED for almost 2 years. I had no SE's with Femara until 8 months in, then began having the pins and needles thing in my feet, and some joint and muscle pain. It would subside in one area, then move to another. Always interesting! But really not so bad over all, tolerable. For the past 4-6 months I've had wrist pain, mostly in the left wrist, but now also in the right and sometimes moving up my forearms, a stinging, burning pain which is not constant, but bothersome; and the areas are sensitive to even a very light touch at times.. My onc thinks it's unrelated to the Femara, but I believe it might be. I want something other than AGE to blame it on!!! I never had these joint issues prior to treatment, although I'm 61 now and admit some of it could be age-related or caused by estrogen-deficiency related to Femara. Just hoping it all disappears. And, maybe it will.
However, I hope you tolerate Femara well, and you might. Some have very minimal SE's, and each AI works in a slightly different way. You might tolerate one and not another. Good luck, and let us know how it goes. Femara has worked so well for me that I would hesitate to switch now, and I will see a neurologist as my onc suggested, if the wrist situation doesn't resolve itself. I want to believe he's correct in thinking Femara isn't causing this, although joint/muscle/nerve pain seem to be a common complaint with AI treatment.
Lane
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Hi Frapp,
I have been on Femara since diagnosis in July 2010 and have been haveing good results with it as my numbers keep going down, down, down. I have had a little joint pain in my hands, but I also have had arthritis in my hands since I was 17 and I am now 61. I am also on Aredia to help with the bone mets and that is the only one that causes and real SE. It makes me feel "fllu like" sick for a couple of days and I get really tired and sleep most of those 2 or 3 days then I am fine again until the next month when I have another treatment. As far as the femara I will take it until it no longer is working and I hope to follow Lane and be NED in the near future.
I wish you success in whatever comes next for your treatment.
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Hi Frapp, I was on Arimidex for fifteen months with horrible SE's so last October my doc changed me to Femara. It did cause sleeplessness to start but I changed from taking it in the morning to taking it at night and that little problem went out the window. I must admit that overall I have almost no other SE's at all from it. I do have problems with my feet if I have to walk too far but that could also be the arthritis I have. I am NERD at the moment so it's doing some good and I'm happy to stay on it until it stops working.
Wishing you luck if you change.
Love n hugs. Chrissy
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Thanks for all the feedback. The arimidex has done really well for me and I'm afraid to change, but this constant aching is starting to get bothersome. I'm glad to hear that it has been working well for all of you and that has taken away some of my fears. Thanks.
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Hi all.... me again.... the Dancing Queen. ;-)
So, I need some advice for the double-dosers amongst us. Having the faslodex injection on my left side has been extremely painful for me. Weeks of pain. Injections on the right side are a non-issue. They do the injection, and that is the end of it. So for the past four months, I have broken protocol and had all my injections on the right side instead of alternating.
Do you think having two injections on the right side is possible? Has anyone tried this? There is no mention of this option in the research studies, and of course Dr. Science Onc thinks this isn't a good idea, but she doesn't have to live with my backside.
And just in case anyone missed my happy post, my scans indicate that there is no evidence of disease. So, if I have to have left shots, so be it. NED sounds too good to fool around with.
*susan*
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Oh yay Susan!!!!! Way to go!!!! Happy Dancing for you. Can't help you on the other question though.
Love n hugs. Chrissy
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susan - what great news. I am joining in the Happy Dance for you.
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Words cannot express all the love, encouragement and support all my BCO sisters have given me since the start of my journey. I love you all and so appreciate your just always being there for me and each other.
Reposted this to other threads so all my sisters would know what I am feeling.
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Well, I've been off the Arimidex for a week now and I feel GREAT. No constant aches, I can get up from a sitting position easily. I feel 20 years younger. So, now I know it was side effects from the Arimidex. Guess I'll be going on Femara next. Does any one know what the difference is between the two? It's funny, as good as I feel this week, I'm terribly depressed at the same time. I guess it's the thought that I have to go back on medication. I guess right now I'm very lucky, if it weren't for having to take this one medication, I wouldn't know there was anything wrong with me. Right now I feel like my old self and don't want that to go away. I'm affraid of what side effects femara might bring. This just doesn't seem fair.
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Frapp, I went from Arimidex to Femara last October and aside from the sleep interuption to start with I have had not much else. To fix the sleep issue, I take the Femara at night. I sometimes get sore feet after I've walked a distance but I'm not convinced that the Femara is the culprit for that as I also have extensive arthritis in all the bones of my feet. Good luck with the change.....it was the best thing for me!
Love n hugs. Chrissy
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My understanding is that the list of side effects from the three AI's are pretty similar, but which ones you get is an individual thing. So someone that does great on Armidex might have horrid bone pain on Femara, or joint pain from Aromasin.
Unfortunately, the only way to know is to take it for 3 months or so. Out of curiosity, why Femara and not Aromasin? Aromasin has just gone generic which makes the cost substantially less than Femara. More in line with the generic Armidex. I am delighted that my monthly cost will be dropping with my next refill.
In any event, I hope that your new drug doesn't impinge on your quality of life.
*susan*
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Susan, the Femara went generic at the beginning of May so the cost has also dropped.
Chrissy
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Now that is good news! Love that cost doesn't play a part in choosing the correct protocol. Thanks for clueing me in.
*susan*
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Hi everyone,
I did read somewhere that Medicare won't pay for the generic Femara, at least for now. How's that for stupid??? I go on Medicare in Aug. but my Femara prescription doesn't need to be renewed for a few months. So, we'll see what happens.
Frapp, hope Femara works terrifically for you!
Lane
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Frapp - I have been on Femara since August 2010 and the only side effect I have noticed is some joint pain, but like Chrissy I also have arthritis in those joints and I also have some pain in my feet if I try to walk too long. Shop till you drop shopping trips are getting shorter. I also take the Femara at night due to sleep issues when I was taking it in the morning. Hope the Femara work well for you like it has for me. My onco told me not to get the generic Femara and since I have a drug card from the company that makes it I only have to pay $10.00 for it. Ask your doctor about the drug discount card.
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Hello. My mom has been on tamoxifen for 6 months. She was talking to me the other day about how long the tamoxifen will work on her. She has been looking/feeling good but now I'm thinking "how long will she be on tamoxifen?" Any people here that have been on hormonals for long? (disease is limited to bones also)
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Hi Hello12, sorry to hear about your mom. We never know an exact time that these meds are going to work for us we only hope that it is a long time. It is important for your mom to be aware of her body and note anything that is not a normal thing and mention these to her doctor. I'm sure she is being regularly scanned etc so her docs can keep an eye on whats happening with her. PLease don't worry too much at this point as even if the Tamoxifen fails, there are a lot more meds that are available to treat this disease.
Hope your mom does well on the Tamoxifen.
Love n hugs. Chrissy
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Thanks chrissy! Yes she gets scans in a month. She was trying to ween off of her painkillers recently and that is causing some withdrawal symptoms, and I think that sparked her recent worrying. Have you been stage 4 since 2003?
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No, 2009. 2003 is when I started this journey. Withdrawing from anything will cause side effects and pain so I can understand her worry.....it's never far from our minds. There are a lot of women who have been stage IV for a long time, one that comes to mind is Marybe, she has 13 years up and there is another lady that pops in only on her canserversary who has 19 years up so it is possible to live a long time with BC.
Love n hugs. Chrissy
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Frapp, I took a break from femara last summer. After I started back on it, the side effects were nowhere near as bad. It has gotten worse again after almost a year but still not at the same level of pain. Maybe I'll take a shorter break this summer or fall.
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Hi Lane....how have you been? I haven't seen you around much lately.
Frapp.....the thing with Femara and most of the AI's is that the jolly SE's seem to come and go......for a while you'll ache and then it will be gone.....then something else will pop up and sometimes for some people the SE come and stay. If you managed to get some relief by having a little ' holiday' and it made no difference as far as progression went then I say go for it and good luck! A girls gotta do what a girls gotta do no matter what the doing is.
Love n hugs. Chrissy
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My doc was the one that mentioned femara, not sure why that and not aromasin. Did I read somewhere thar aromasin has steroids in it? That soundsike a nice cocktail fir weight gain. I certainly dint need any help in that dept. Have gained 20lbs on the arimidex.
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Frapp you are right, Aromasin is a steroid based AI where as Arimidex and Femara are not.
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Hello Chrissy, Amyjo, Susan, Frapp, HeidiHill, Hello12,
I'm here, but haven't been posting as much lately. We had a fabulous family vacation, and now I'm trying to get back to Real Life. I've been a little "down in the dumps," and decided to up my doseage of Celexa. I had been taking 20 mg for the past year, then decided maybe I could reduce to 10, so I decreased it gradually and did okay for a couple of months. But, now, I've decided I need a little more, so I'm back to 20 mg. I don't like taking the stuff, but it does seem to keep me on more of an even keel.
I've also decided maybe I should see a neurologist sooner rather than later, since my wrists only seem to be getting worse. I'm wondering whether it might be caused by the arthritis in my upper back, maybe causing peripheral nerve compression. Either that or the Femara. In any case, I guess it's not smart to let it go too long; and I would like to get some answers. Enough research on my own; I only get more confused. More doctors is not what I want, but if that's what it takes............and, I know it could be much worse. Trying not to complain.
We've had a very late spring here in Colorado, but the warm weather has finally found us. I'm getting my yard in shape; one of my favorite things. We've had occasional smoke from the Arizona wild fires, but they're getting those under control, at last. It's such a shame. It's Father's Day tomorrow, and my DH decided he'd like to just stay home. So, we'll be firing up the grill. Usually I bake a rhubarb pie for him (well, um, us!), but this year our rhubarb isn't doing much. Maybe I can find some at the store. Our son is doing an annual river-rafting trip and pig roast in the mountains, and our daughter also has plans, so it will just be the two of us. This is okay. An easy, relaxing day.
Hope you all are enjoying your weekend. Chrissy, I imagine you're starting to get excited about your trip. How many weeks will you be here? I laughed that you thought it was funny I'd say "swing by Colorado". Do you not use that term in Australia? Or, maybe it's because we're not within "swinging distance" on your itinerary? In any case, the invitation is still out there.
Love, Hugs, Wishing everyone happy news and good days,
Lane
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Lane, hope you get some answers on your wrist issues. Maybe you could get a physical therapy referral.
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Lane - good to hear from you again, you have been missed. You know you could swing by MO in Sept. also, swinging goes both ways.
Oh and by the way you know you can feel free to complain, rant, cry or laugh here with us where it is safe. Frapp - Hope you do will on Femara. It has been working great for me since I started in August 2010 my CA 27/29 and my Circulating Tumor Marker count have both been going down dramatically. I am about to start a new round of scans and I am really hoping to be NERD. Probably won't be but I hope I am getting closer to that point. Femara has been kind to me as far as SEs go. I did not really start having the joint and bone pain until last month, but my onco was able to increase my pain meds so that I can function almost normally without being in lala land.
Hello12 - sorry to hear you Mom is getting so concerned about her treatment. Like Chrissy said none of us knows how long our current treatment will work, we just hope it continues to work for a long time. If it stops working there are a lot of other treatments out there that work when one stops working. There are several women on these threads that have been dealing with this disease a long time. Marybe is probably the most active lady here and she is going on 14 years now. I think she had her 13 year canerversary a couple of months ago. She is still working as a dental hygenist and loves to travel and is remodeling her father's house. I don't know how she does it all. Try not to worry because with her doctors keeping an eye on things she will get the best treatment for her for as long as they work and when they stop working they will be on top of it to get her on something that will work. My Medical Oncologist told me since he did not find and expiration date on the bottom of my feet I could plan on being around a long time. Long enough to see my 6 young grandchildren grow up. I am sure the same is true with your mother. Senind you both prayers and {{{{{{{{{{HUGS}}}}}}}}}}
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Lane sometimes things get a bit heavy and we need some help.....if upping your meds again gives you that help then it's all good. With the issue of your wrists, have you tries wearing a wrist spint at night? I have heard that supporting the wrist during sleep helps.....worth a try. I know the doc will inject a knee joint with cortisone to help alieviate pain so I wonder if they can do the same with the wrist......perhaps it would be worth posing the question to your doc. Good luck!
Amyjo, kepping everything crossed that you get good scans and can stay on the Femara longer!
Frapp, I'm with you on the weight gain thing I've managed to stack on a good, (well not so good really), 30lbs and I'm fighting everyday not to put on more. Having bung knees doesn't help either as it restricts the amount of exercise I can do.....ugh!!!
Susan I can't help on your Faslodex question as I've never had it but I did read something about it on one of the other threads.....I just wish this memory served me better so I could tell you which one. Perhaps if you do a search on it you will get some answers. Good luck!
Hello12 I hope your mom is feeling a bit better and please stay in touch and let us know how she's doing.
Heidihill hope you're doing okay!
Love n hugs. Chrissy
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Hello12, I've been on Femara for three years. Hope to be taking it for a long time.
Amyjo, that's right about swinging :-)
Chrissy, I have the flu, but just might be over it today. I did lose 1.5 kilos. Yay!0
