Arimidex - Coping with the SE's
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I had the horrible experience of first being diagnosed as triple negative; which would have meant twice as much chemo, and a higher chance of recurrence, because after the initial treatment there is nothing else they can do medically. You are either OK, or you are not. When the tests were re-run and I can out estrogen positive; I screamed, hugged my oncologist and cried tears of joy. I was, and still am, absolutely thrilled that this big gun is available to me. It is a serious drug, but cancer is a killer disease and has to be fought seriously.
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Well put Ruth. Now I just need to remind myself that every time my joints are hurting....
Cindy0 -
I feel pretty passionate because right now I have two local friends who are fighting Stage IV cancer.....and they would have given anything/taken anything/done anything to not be where they are today.
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I know that reading everyone's comments here are going to help motivate me to start taking the arimidex on Jan. 2. I'm dreading it but I have you all to remind how important it is to try it. Thank you...
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Hi, all,
Especially good wishe for HEALING to Claire. I'm with ruthbru, washing my hands several times a day. AND thanks for the reminder of gargling with warm, salty water. Also have to get back in the habit of using my neti pot in the morning- I am good when it's "allergy" season, but then I get lazy.
I woner WHY the A causes fingers to swell? Does anybody know. It's not a big deal for me, I just don't wear rings, but I dod wonder WHY it happens? COntinually amazed at how much estrogen seems to be involved in so many bodily functions.
No one has mentioned DRY SKIN in a while, and as it's WINTER here in western MA, I'll say that I now use PURE COCOA BUTTER under the coconut oil every few days. I get the PURE COCOA BUTTER at Whole Foods, and remember to melt it for a few minutes in the microwave. I didn't read the instructions when I first tried it - didn't know it came with a thin wax coating, and it was SO hard. Instructions say to melt in microwave
after you take top off jar. 0 -
I know what you mean Ruth as I had a coworker who just died of stage 4 cancer a month ago.. My sister's boss is also stage 4 and not doing well. I agree 100% with you!! It's just sometimes I forget when I am hurting....
Cindy0 -
Dear AI ladies,
Till March 2011 this topic I was looking for every day. I was lamenting about my SE's, trying to find comfort in experiences of other sisters, I got here consolidation and a lot of practical advices, researching how to cope with difficulties from this medicine. As my Onco proposed switching from Femara to Aromasin (exemestane) I was asking myself what difference in SE's should be?
After 21 months of it I decided to let ease a little my knee and hip pains, to try leave off pain killers and to overstep Aromasin (exemestane).
Wishing us whichever medicine to be possible to keep back any recurrence!
Take care!
Blessed holiday seasons and the healthy year 2012!
Usha
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I love the idea of being on the A team rather than the C team. I started on the Arimidex in October (switched from Tamoxifen) and have had some weight loss from both of them (though I think it's now starting to catch up with me) and the hot flashes are just lovely (though they could also be from the hyst/ooph). And not to make light of what ANY ONE is going through, I have a pimple on my cheek the size of the Empire State Building. I'm blaming the Arimidex, because I can.
I'm having some creakiness, but it's not unbearable. So, so far, so good.
To any ladies on the fence about taking it - everyone responds differently.
All of you ladies have been my lifeline this past year - a year ago yesterday was my lumpectomy/lymph node biopsy. I mentioned that to my husband this morning and he said - seems so much more recent than that. But, I'm starting to feel like a human again, so hang in there ladies!
Caffeinated purrs,
Jenn
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I could use a remedy for the horrible headaches and vertigo that have begun 5 months into Tamoxifen. This side effect could make 5 yrs on this drug impossible. Thoughts anyone?
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SBAARONSON, my husband has vertigo, and for a while he used motion sickness pills to keep it at bay. Also, sometimes a little coffee will help a headache. Seems like I have heard Tamoxifen can affect the hearing...
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I know people who drink coffee for migranes too. Also be sure to keep really hydrated.
Santa Claus and company are coming to town. I will be off board for a few days playing hostess. I hope you all have a wonderful holiday!! Ruth
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Ruth you have a merry Christmas. In joy the hostessing!
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Day five of taking my new supplement of Reumofan plus and it has changed my life....very little aches and pains that I used to have. It is all natural and actually has some cancer fighting properties in it. I am a big fan of this product.
Merry Christmas
Balsie
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Dogeyed, My MO said that not ALL your estrogen is depleted. Your body keeps making it. I am on the generic.
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well. for me...in the first few weeks when it was finger swelling and a sore back I cold handle it...went to the chiropractor and massage and figured i would have to adjust more than the mattress on my bed...I would have continued..and I am grateful the drug is there to be used...but with chest and back edema and a heart issue...I can't do it. emotionally or physically. My prognosis was excellent and arimidex was considered an 'extra' safe guard so....for now, I can't do it. I wish everyone else doing arimidex great luck....
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Sandeeonherown, I do understand your situation. Sometimes - too many other issues in your body's reactions/conditions make it a necessary choice to opt out of the Amimidex treatment. Yours in completely an understandable reason to opt out. One thing at a time. I hope you feel better.
I am still dealing with the blood pressure issue - I was on the diuretic and it sure was doing its job - then my blood pressure was getting into the low/normal range and so I did not take the diuretic for 2 days, well the b/p reading went up again - so I will be taking the water pill again tomorrow.
Does anyone have a set number of days per week that they take the diuretic? It seems to have worked to get rid of the extra fluids to help lower my b/p but I think I will need stager as my b/p seems to drop into the low/normal range. 101/63 this morning. I go back to my gp on Wednesday so am trying to adjust until then. This all so new to me and I'm not feeling so confident right now.
Wishing everyone a wonderful holiday with love and family to enjoy!
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what strength are you taking and what type. I am doing well on HTZ 12.5mg. Before cancer I took a comination one with HTZ in it at a higher dose of 25mg.
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Hi KittyDog
I am on HCTZ 25mg, the dr said that was a low dose. It is gentle on my body and I am not running to the barthroom to go but have lost alot of fluid build up. My face, hands and overall I body is also slimmer. I think one of my doctors should have given me this sooner as I had lots of build up of fluids since taking chemo. It has taken 3 weeks of 1-pill everyday to help lower my b/p. I know I will need this as an aid to help me to get rid of the extra fluids that Arimidex is causing me to hold. I have one year left and I believe my doctors are trying to help me and my body get through it.
I am glad that you are doing well on it. How often do you take it? I do believe my gp is going to tell me to take it when I feel bloated or feel I am holding water. So at some point it will be up to me. I tend to hold fluids and at a few times in my life was put on diuretic to get rid of build-up, one time on diuretic and valium for extra water in my inner ear. It worked.
Stay well.
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Hi KittyDog
I am on HCTZ 25mg, the dr said that was a low dose. It is gentle on my body and I am not running to the barthroom to go but have lost alot of fluid build up. My face, hands and overall I body is also slimmer. I think one of my doctors should have given me this sooner as I had lots of build up of fluids since taking chemo. It has taken 3 weeks of 1-pill everyday to help lower my b/p. I know I will need this as an aid to help me to get rid of the extra fluids that Arimidex is causing me to hold. I have one year left and I believe my doctors are trying to help me and my body get through it.
I am glad that you are doing well on it. How often do you take it? I do believe my gp is going to tell me to take it when I feel bloated or know feel I am holding water. So at some point it will be up to me. I ten to hold fluids and at a few times in my life was put on diuretic to get rid of build-up, on time on diuretic and valium for extra water in my inner ear. It worked.
Stay well.
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Desny - I think you will have to consult your doctor on the right dose, but once you have hit a "dry weight" or "back to normal" so to speak, you may be able to just use diuretic if your weight gain is over a certain amount as your cue that you are holding too much water. Maybe they will cut dose in half and just take extra if you are gaining fast, which is easy to see on the scale. I wonder how long it will be before I get rid of all the excess water. I have been on fairly strong diuretic for 3 weeks, water is falling off but blood pressure is not really low at all yet, still have a ways to go I guess.
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Sandee, you have been through the wringer. I think you should be on an anti-AI thread. Not everyone can take the SE. I just feel like you are not looking for symptomatic relief but believe the hormonal therapies were too difficult to endure. God knows it can be diffficult and you have had catostrophic SE. Gently I want to say, this thread is about how to survive the S/E. There are people that WISH they had such a drug and tool. It has a price....like everything else with dealing with BC. You have been through so much with your treatment and your health. It's a hard path for all of us, and all the sidepaths. All the treatment put me into spin also,lucikly not a heart attack or CVA yet. I wish you didn't get so irritated with us, chasing our hope that AI will help us. Yes, big costs, but cutting the cancer recurrence rate, and having something that can do that, is priceless to a lot of us.
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KIMBERLY (and Ruth), No, it is me who asked Sandee a question, specifically how long it takes to get over being off the drug, so all she was doing was replying to me! And for that I apologize to all of you and especially to Sandee. For it is I who created a controversial moment in this forum, without realizing it at the time, by making a personal decision for good reasons to only take Arimidex for two years and having a couple questions about it before I proceeded with any Arimidex side effects I have from taking it. But I shall hastily withdraw now, for the last thing I want to do is offend anyone, and I HAD to post this because I do NOT think SANDEE should have to take any heat for me! I am so sincerely sorry to all for creating this disturbance, it was not intentional, and I do understand you all's feelings. And those who know me here, you know where to find me. I wish good health and peace to all of you for always! Bye bye my goodly sisters, Gail
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Hi Kimberly1961
Thanks, I plan on consulting my gp about how to deal with this going forward. Today my b/p was 103/59, I certainly am not taking the water pill. I think my dr will be shocked that it went down so fast. Thanks for your help though.
Hope you and all on the boards have a wonderful Christmas and New Year.
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I've virtually had to give up wearing rings at all. Once in awhile I can wear one but that's only a couple of times a month, my fingers are just swollen but I put up with it because I know that Arimidex is saving my life. I get charley horses in the middle of the night sometimes and just hop out of bed right away and that seems to resolve it. Sometimes have restless leg syndrome but usually get back to sleep okay after it subsides. I've ben on the pill about 4 mos. now so I have a long time to go. I hope no other major problems present themselves.
Merry Christmas, Happy Hanukah and Happy Kwanzaa.
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desny...wonder why they did not put me on a diuretic...put me on Aleve instead because of the pain in hands and back...it too was suddent...will talk to my doc in the new year...hav enot told anyone except the breast cancer surgeon about my decision(which I made with her)...the oncologist and my gp have yet to be apprised of the situation...
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Kimberley....as Gail said...I was not and am not irritated with you or anyone...I am scared sh+tless to take this drug because it caused fluid retention and all they did was give me Aleve...which did not alleviate anything. I have gone off the med. after talking with my breast surgeon...my oncologist and gp have yet to be apprised of the situation....not sure why they did not give me a diuretic given how swollen my hands, chest and back were...
That being said...I am not ANTI-AI and never said I was....I am simply terrified and for very good reason. I have been looking for all kinds of answers and alternatives to go with them....spent my summer soul searching and the entire two months I was on it going to the chiropractor, massage therapist and naturopath as well as coming to this thread for information and assistance. ....and I acknowledged that I was grateful it was an option...
No offence Kimberly...gently said or not...if you want to berate someone, it might be better served done in private....or it might be better to read the history a bit. I was trying to reassure Gail that the swelling will go down once you go off it...that it has been two weeks and a bit since I went off it and my fingers are almost normal...
If I do decide to go back on it once the initial swelling goes down and my oncologist can offer me something to assist with the swelling in the chest area to ensure I do not have another heart attack....well, not sure I will come back to this thread. You have made an assumption about what I was feeling and what I was trying to say....whether you write 'gently said' or not...it comes across as a hand slap. And that, I do not need.
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Ladies, I know how hard it is to make the decision regarding AIs and everything that goes with this terrible disease.
I am two years out today of my last chemo. That was my Christmas present to me in 2009. The Big C is not consuming my life at this point and I am pretty much back to normal. I have been on Arimidex or generic since March 2010. My SEs started about 4 months into taking the drug. They lasted about six months then the pain went away. The pain was first noticed in my hands and then my knees. I suffered many things from my treatment, weight gain of 30 lbs, water retention, lack of energy and a few other items. I have managed to lose the weight, and I do Zumba two or three times a week and have more energy than I have had in years. I am 62, work 4 days a week and keep up with my grandkids.
I do have dry skin, but keeping lotion on my hands keeps them from cracking in the winter. I just wish there were creams for other parts of my body, but somehow we manage.
In this battle, you have to do what is best for you and what is good for one may not be good for another. My Onc told me from the beginning, make the decisions that are best for you and don't ever look back. I have done everything that I can to kill this monster inside me and I hope that I have, but only time will tell.
I wish you all the luck in the world on your journeys through this. May 2012 bring you health and happiness.
Merry Christmas and Happy New Year
Juannelle
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I enjoy hearing everyone's story on this board~ We all appeared here because we had Cancer and this is where I come to get some truth...so it is good to hear why some choose something while some others choose something else. I have gotten a lot of pointers and great ideas from you gals! ....and I thank you all for that. So Sandeeonherown just stick around you had some very valid pts and maybe someone lurking had the same thing and you helped them. Sometimes when reading texts things get taken wrong.
wisdom & peace
Balsie
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I need to gain the courage to go back on Anastrozole when I see my MO in two weeks. I am most afraid of the return of my memory deficit. My mind has cleared nicely during this break, everyone I have spoked to has commented on it. I don't want a recurrance but I don't want to spend the rest of my life half brain mush. The pain in my joints has cleared to manageable without meds, on the AI I had to take lots of ibuprophen to keep it down because my hands just ached all the time.
I am at a loss, I know I will go back on but feeling so out of it, so limited intellectually and in so much pain is really frightening.
Ginger
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Just had my first acupuncture appt. It wasn't painful at all! Time will tell if it helps but at least it didn't hurt. Feels good to do something to take control of things...
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