For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Janette: I'm reading thru older messages as I prepare to join you guys. Thought I'd mention that toe pain like you described is also typical of gout, which could be totally independent of your AI.
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I have an appointment with MO Friday and imagine will get my Arimidex script then, I finish my 3 weeks of rads on Halloween.
I've read through the last couple weeks of posts, good to see some familiar names, Peggy and Blownaway.
ruthbru: I see you're from ND too - where?
About the hair growth, since I don't have my hair back from chemo, does this mean it's going to take forever for my hair to grow back after I start Arimidex?0 -
Puffin, you don't have ANY hair back yet? Hmm. I thought I recalled my daughter-in-law saying she got fuzz back just before her next chemo session. Not much but a bit. When did you finish chemo? Yours is an interesting question. Of course, I don't have a clue. Maybe it won't make a bit of difference. You'll do fine! And it is nice to see the same people on all different forums where I am, too. Welcome to a new group, Puffin. We love ya!
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Hi Peggy, I finished chemo 4 weeks ago, I'm not a skin head, I have a few tufts popping up here and there, but Lew didn't know I had hair there until he touched my head and could kind of feel it. Gals in my support group said it took like 4 or 5 months for their hair to come back in so I wasn't expecting much hair yet. But I hadn't realized the Arimidex was also going to be a factor.
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Arimidex didn't make a difference at all with my hair growth. I finished chemo the beginning of June & ditched the dig mid-December.
Puffin, nice to see another North Dakota girl! I will PM you.
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ruthbru: How long have you been on Arimidex? How are you doing on it?
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I took it for the recommended 5 years, so have now been off it for two. I did fine on it.
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Puffin, that sounds like about what my DIL had, too. Having fuzz definitely isn't the same as having hair. I'm sure it would be nice to have hair for winter! Hopefully, Arimidex won't be a "hair" issue.
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Puffin2014, I had actually thought of gout as a cause for my big toe pain. When I read about it though, it mentioned swelling, redness, and heat in addition to pain. I had pain only. Well, I guess I'll see if it happens again. Thanks for your input. Janette
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Peggy you certainly have a lot on your plate with your husband's illness. Kudos to you for being a great caretaker. It sure isn't easy. Like Ruth said, do some special things for you. I learned decades ago that a hot bath with a good book. and sometimes even a glass of wine work wonders for the spirit. When I was married to my first DH he traveled a lot and we made a few very difficult moves. My two sons are almost 3 years apart. My closest family was 1,000 miles away. When my youngest was born my DH got a week off work and then had to return to the field. He is a geologist and they often work in remote locations. It was often very tough being alone with two little ones. The nightly baths saved me. I didn't get much sleep, but the quiet time was something I craved more than sleep.
I have a friend who had a recurrence of her BC 14 years after her original diagnosis. She broke her arm while going over a jump on her horse. That is how they found it and at Stage IV. That was four years ago. Her oncologist runs tumor markers on her fairly often and as mentioned they know what her norm is. The markers help I know when you are Stage IV. I have never had them done to my knowledge but I am Stage 2. Please everyone understand that the recurrence is not likely. We are all different. My friend surely had different treatment when originally diagnosed 18 years ago. She did not take an AI. Even if you develop SE's most are not severe enough to warrant going off the med permanently. I had absolutely no fear of going on Anastrazole. Like most of us I view it as another tool in the toolbox to help fight the return of the beast. I do take breaks and this helps the joint pain. When I go back on it after a month off the pain doesn't return right away. My MO is always supportive as far as taking breaks go.
I wish I could help answer questions about hair loss. My hair was falling out before BC. I didn't have chemo. I know that much of my hair loss can be attributed to weight loss. Six years ago my son got married and I wanted to lose weight for the wedding. I did well but did not eat properly, cutting out way too many calories. My hair began falling out and a dermatologist said I had a condition (I can't recall the strange name) directly related to weight loss. Telogen Effluviam? Something like that. Basically my hair thinks I am starving LOL. My favorite stress buster (besides bath) is food, and sweets in particular. I don't really drink, nor do drugs, I no longer smoke (6 years YIPPEE). So food is my drug of choice. When I 'diet' my hair suffers as well. There are many reasons for hair loss and I know the AI's are not always the reason.
Ruth....my son lives in Moorhead MN but works in the Fargo area. One of these days I really want to go visit!
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JustMeJanis, when DH is at home, sleep is the one thing I don't get either. So when he is in rehab, I try to sleep as much as possible, do things that are impossible when he is at home - see friends, go shopping when and for as long as I want, even a bit of cleaning. And you're so right about craving quiet. I usually stay up an hour after DH goes to bed to wind down and relax. That and get up an hour before he does so I can gear up to face the day. Those 2 hours are vital for my sanity (well, what's left of it
). I'm very glad to be able to take Arimidex - makes me feel like I'm doing something to prevent the BC from coming back. Only been on it 3 days so no idea if I'll have any SEs. I am curious though: if you had hot flashes from it, when did they start? Immediately? Several weeks?
Crappy that your hair responds like that from your dieting. Boo hiss!
Hugs!
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Janis, when I was a little girl, I lived in a little Minnesota town right out of Moorhead, my uncle, aunt 7 cousins lived in Moorhead, & that is where my parents moved when they retired. So I have spent a lot of time in the Fargo/Moorhead area. It is very nice, but do not visit in the winter!!!
Peggy, would any of DHs be willing to come over & visit him on a regular basis so that you could get out a little, or have you checked Easter Seals or another agency (I imagine they vary state by state) to get some respite care? In my state, you can get someone to come in for a couple hours a week, so that the caregiver can get a break. I imagine a hospital social worker would know what services are available in your area if something like that sounds helpful to you.
Puffin & I have discovered that we graduated from the same college AND she graduated from high school in the town where I have lived the last 39 years. So we are practically related!
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Isn't it fun to meet people who live close? Lucky you!
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Darn Arimidex. It just made me eat four waffles- -before my coffee even! I never used to want to eat in the morning. I used to get hungry around 1pm. Oh well. The waffles were good. Now I need to work off those calories,
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Dunesleeper, maybe try something else for breakfast
Oatmeal? Bet those waffles were good! Maybe that was something you needed that day. HUGS!0 -
I have been on Arimidex for almost two years and so far it had not been a serious problem. I do feel stiffer until I warm up in the morning, and after sitting a long while. I do get warm flushes, not so much hot flashes, but I no longer seem to get pains in my knuckles which I did during the first year. If that is all I have to put up with to keep cancer from returning, I am fine with it.
For those with hair issues, I highly recommend taking liquid silica drops daily. It has been clinical proven to strengthen hair and help it grow. It has done wonders for mine. I honestly haven't had such thick and healthy looking hair in years. You do have to take it for 6 - 8 months before you see a difference because it takes that long for it to affect hair's growth and for your hair to grow enough for you to notice the difference. It is not a quick fix, but it really does help enormously. It's good for skin also. I get compliments all the time on my skin which looked awful for a long time after chemo.
I buy BioSil brand liquid silica on Amazon as it is usually available from a few vendors as I can't find it near me. It tastes funky, so needs to be added to a strong tasting juice. I put a 5-6 drops in 1/4 to 1/2 cup of juice and use it to wash down my morning Arimidex and vitamins. In the beginning I took the same amount of BioSil at night also, for a total of 10-12 drops a day, as that was the suggested method, but my hair looks great now so I usually just take it in the morning.
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Question--do any of you know what the ER PR threshold is whrere they say you can skip the meds? I thought (probably eroneously) that if you had a plus after it, you did AI or Tamox. But a pal told another pal, who has my ONC, that because her score was 50% she can skip.
At first I had a cow, thinking she meant her Oncotype, then I said, that doesn't go that high, and that related to chemo, so now I am wondering if it was the hormone percentages from her tumor biopsy.
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RedHeaded I can't answer your question because I do not know. I would assume though that there is a good reason your 'friend' has a different treatment plan than you do. No two BC's are identical. I think your MO is the only person who can safely answer your question.
Peggy I honestly don't remember when my night sweats started. I didn't go on Anastrazole expecting any SE's although I was aware of some of them. The hot flashes/night sweats are common when our estrogen production is interrupted. I had a total hysterectomy when I was 42 and took HRT for only a short time. I am opposite of you temp wise, running on the warm side. I know I didn't have night sweats nearly as bad as I did on Anastrazole. They got very bad and then my MO put me back on Gabapentin. I had taken it for the last two years but a much higher dose. I took myself off of it against his advice. My night sweats got so bad I slept with 2-3 clean dry t-shirts on my dresser. I went through all of them every night. He talked me into going back on Gabapentin (also known as Neurontin) at a lower dose. I still take it three times a day but it made a huge difference. I very rarely had night sweats after returning to it. What a difference not waking up 3-4 times a night all sweaty and wet! Some anti-depressants help as well. I also take Paxil. Wait and see if it even becomes a problem. Your MO should have some good advice for you. There are plenty of tools in that toolbox!
Ruth how interesting you have so much in common geographically with Puffin. Small world huh?
Puffin I have no plans to go visit anytime soon. I sure wish I did. I miss my son so much. He is alone out there and I sure wish we were closer. If I do make it up there I will definitely let you know. I would love to meet you!
Hortense thanks for the information on the drops. I can't get any now but will keep it in mind. My hair is a sad mess.
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JustMeJanis, thanks. Interesting that gabapentin helped. Also Paxil. I would be surprised if I had hot flashes as bad as you. They just weren't an issue back in the day. And as you pointed out, you run hot and I run cold
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Peggy gabby did the trick. I really didn't have very many bad hot flashes, a few but not every day. My problem was the night sweats. Really bad. Everyone is different and this hopefully won't be an issue for you. Many women never have a problem. I was surprised that I did. After my hysterectomy I didn't have them much even after I went of HRT. I went for years without having them. I am pleased that the other meds took care of them.
Hugs back, and bunches. You sure deserve them!
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Redheaded1 I was told when it comes to being hormone positive it's like being pregnant… and you can't be a little pregnant. You either are or are not. BTW I am 30%ER+ and 5%PR+. All it takes is one mutated cancer cell. Feed it some hormones and it will grow.
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JustMeJanis, I don't recall night sweats like you describe. Maybe I got warm once in awhile. It truly is amazing how different we all are, isn't it? Glad you found the right stuff to control them. Hugs back at ya!
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Dunesleeper your so funny. Darn that ARIMIDEX
Maybe after your comment I can blame my shamefulbreakfast this am on the drug. I sure need to do better. Have you changed your diet a lot? I just went to my
Oncologist this past Friday and she was really stern with me this time regarding diet and exercise. She said
it's a matter of life or death. I HAD TO MAKE CHANGES.... Believe me, I'm trying..... I just fail more than I succeed
these days.
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I'm 98% ER and 15% PR +. So I'm taking mine as long as I can stand them!
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Yup, Lago, I agree. I been cruising all over the net off and on today, and I think maybe she is just spinning a tale cause she doesn't want to do the drug???? I know she has IDC same as me. even in the same location, just the opposite breast. She is just about to start her rads, got her simulation and mark up done Monday and is now waiting for the call with her schedule.Nuerontin (Gabapentin) seems to have a ton of uses besides it's major purpose. It was recently suggested as a way of "distracting" the nerve that they "think" might be causing my ear issue....
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Lexie, I changed my diet completely in 2012 when I was diagnosed. I had lost about 45 pounds and was exercising daily. Waffles were definitely not part of my diet. I am certain the Arimidex is causing me to have increased appetite. I gained about 10 pounds back. I definitely don't want to go there.
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I also have increased appetite from the Arimidex. I thought I was crazy. Glad other people think that as well. It's also caused me to have a sweet tooth I never had before. I'm sure it's the lack of estrogen more than the pill directly but it's kind of annoying! It's much better for that if I take it in the morning for some reason. But my sleep is better if I take it at night. Can't win. Oh well, no joint pain at all so I shouldn't complain!
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I have lost weight now that I've made the switch from Anastrozole to Exemestane.
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did not gain or loose on the aromasin, then again, working out at the gym a lot to deal with achies and such, all working and since ending my 5 years....not real dif
my only thing is the dang balance issues, I look like a drunken sailor!
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