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For Arimidex (Anastrozole) users, new, past, and ongoing

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Comments

  • Kathy044
    Kathy044 Member Posts: 94
    The Linus Pauling Institute is a good place to go for science based information on micronutrients such as biotin IMO.

    http://lpi.oregonstate.edu/mic. Select vitamins from the menu on the right, biotin is at the top.

    (I didn't post the full URL as this site is a good place to go for info on vit D, calcium magnesium, K2 etc supplementation too)

    The biotin article mentions studies on both hair loss and brittle nails. As far as I could see there is NO evidence that taking biotin helps AT ALL for adult men or women, only toddlers, for hair loss. Taking biotin can help the nails though which was my experience when I tried it.

    The article mentions the MS research too Chef, thanks for sharing your experiences, most interesting.

    Kathy





  • Smurfette26
    Smurfette26 Member Posts: 269

    Thanks for the info Puffin2014. My Dr did say the effects of chemo can last 12 months or more. I thought he was talking more about fatigue. My mistake. I appreciate you clarifying it.

    So sorry you are still experiencing problems StrongEnough. The gift that keeps on giving. Sigh.

    Hugs all. Donna.


  • Suz-Q
    Suz-Q Member Posts: 110

    PontiacPeggy, thanks for the info! Hope your move goes smoothly!

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Suz-Q, thanks!

    HUGS!

  • Ackackadack
    Ackackadack Member Posts: 1

    thanks for all the good info. I am starting Arimidex next month and after reading some of the reviews for it, scared myself silly. After chemo and unilateral mastectomy and starting reconstruction, I appreciate all the comments. They sure do help.

  • tjh
    tjh Member Posts: 272

    My oncologist also said a year with chemo brain is normal. I take 10,000 micrograms of biotin daily. I think it helps with my hair...it definitely helps with my nails.

    Welcome Ackackadack....Sorry you had to join us. Some have no SE, some have a few, some have lots. 1 thing to keep in mind is that often it is the brand of generic causing the issue. My SE were awful then switched to name brand Arimidex and all is well. I did need my oncologist to write the prescription for NB only, generic not allowed. And instead of being free it costs me $20. a month. Stay strong.

  • lago
    lago Member Posts: 11,653

    Ackackadack I was more scared of the ESDs then chemo. I mean chemo is only for a few months but 5 years! yikes! But my feeling was I can always quit so I did it. Switched to Exemestane (Aromasin) after 3 years due to some side effects.

    I just finished the 5 years in May… you can do this. (We didn't go for 10 because of the bone issues I'm having. Will revisit if the studies show survival benefit. So far they don't).

  • ClaudiaMetz
    ClaudiaMetz Member Posts: 136

    I have been reading all of your posts and I must say I find them very interesting. I really have trouble sleeping. One night I might get 2 or 3 hours before waking up. Then I wake up every hour. I have tried Ambien but it will only help me sleep if I just take it 2 times a week. I noticed many of you said not taking the the generic worked better. My insurance will only pay for generic if there is a generic. I only have to take this 2 more years. I do not have weight gain. I do have back pain but then I really have some back issues. Memory not great. I wish I knew what to ask the doctor for to help me sleep.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    ClaudiaMetz, a couple of suggestions (perhaps you've even tried them): change the time you take your anastrozole. I take mine in the morning. No trouble sleeping (anytime :). Also changing the manufacturer of your generic anastrozole can make a difference. I take Teva's - the ladies here said they had few problems with the fillers in them. I've been on it for over 1-1/2 years. You can get the brandname. Astra-Zeneca has a program that can get you a $20 co-pay. I think some of the ladies here use it. It's hard to pin down what is causing problems and you may not ever figure it out. Good luck!

    HUGS!

  • Kawigirl1260
    Kawigirl1260 Member Posts: 16

    Oh, that's right.. I forgot about the trouble sleeping! See, even forgetting SEs! I seem to remember having read somewhere in a list of SEs that "cognitive" issues was one. And, my bottle of pills says "Chemo Drug" and, even though it isn't "chemo", it seems to be having similar effects, from what I hear from those of you getting chemo treatments.

    I also have the vaginal atrophy. My MO said that that will only get worse. yay. I had been using Estrace for about a year and it had really helped. He said that I'll not be able to use that since I'm taking an AI now. Might be worth going on Tamoxifen just for that. Although, I've read about the laser procedure - Mona Lisa something? - to help with that. Anyone know anything about that?

    PontiacPeggy, I had an mx because I had wide-spread DCIS. It had already infiltrated, so I chose to do mx and AI since it had already "figured out" how to escape the ducts! No chemo, no rads. I'm quite lucky and am very well aware of my good fortune. Welcome to Spokane, btw!

    Lago, what types of bone issues were you having? I'm having a bone density scan at the end of the month. I've upped my calcium intake since I have a family history on both sides of osteoporosis.

    I also read about anastrozole affecting cholesterol. Anyone have that issue? I have elevated cholesterol as it is. Those lovely genes showing! Really trying to avoid going on statins.

    Peace, Ladies!

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Kawigirl, I can understand your deciding to get an mx. I haven't had my cholesterol tested in a year and at that time my HDL was 95 and my LDL slightly elevated. My PCP had never seen and HDL that high. I won't take statins - been there, done that and still have lingering issues. DH had horrid problems with statins and landed in the hospital with leg pain that took several days and one very sharp doctor to figure out it was statins.

    Hope to meet up with you and Traci soon in Spokane!

    HUGS!

  • tjh
    tjh Member Posts: 272

    I haven't had a cholesterol test since right after I started Arimidex, it was my normal then. I have taken cholesterol meds since 2001..I don't take a statin, they worked too good, but had no SE from them. Although the pediatrician thinks DD cleft palette was probably caused by them. But at 44, 4 years after ON/GYN said we couldn't get pregnant without fertility treatments and we had decided early on that we wouldn't go there, we didn't think the baby was happening so i started Lipitor. Stopped as soon as we found out about baby when she was about 20 days along. She was our SURPRISE blessing.

  • lago
    lago Member Posts: 11,653

    Kawigirl1260 my rheumatologist actually lowered the amount of calcium I took by 1/2 when I was diagnosed with osteoporosis after 2.5 years on Anastrozole. She said I was better off getting it from food. My calcium levels are in the high normal range with only 600mg of calcium supplement. You should really let your MD recommend what you should be doing.

    I am the poster gal for osteoporosis. Family history, small frame, Caucasian, Osteopenic even before chemo/chemo-pause at age 49 when I had my 1st scan. Once I was diagnosed I was treated. Couldn't do the pills (acid reflux from them) so I am doing Prolia. When I saw my oncologist last my spine didn't get worse (just over the border into osteoporosis) but I did brake my 2nd metatarsal (never broke a bone in my body before) just walking at work, 3 weeks before my oncologist visit. Walk in with a boot and your doctor might get concerned ;)

    I do think my cholesterol was a little high but now that I'm off the drug not sure. Nothing my doctor was concerned about though.

  • Molly50
    Molly50 Member Posts: 3,008

    I think this is really interesting even for the non breast cancers, the part about AI's are eye opening at least for me. Ten Practice Changes I Will Make After Attending ASCO 2016

  • pboi
    pboi Member Posts: 148

    ClaudiaMetz...I started with insomnia during my chemo/rads days and it has continued with the AI. Initially I started with the Ativan which worked but not good long term. Ambien didn't work for me. Melatonin was only mildly successful. But then I tried Trazadone 25mg. Its been working great for me. I take it an hour before bed. I fall asleep fast, wake once in the night to use the bathroom, but fall right back to sleep until morning. I haven't noticed any side effects from it.

    PB

  • Molly50
    Molly50 Member Posts: 3,008

    Here is the important part:


    1. I will not use exemestane as adjuvant treatment for invasive lobular breast cancer in favor of one of the two nonsteroidal AIs, anastrozole or letrozole (Abstract521). There are increasing data that exemestane is less effective in patients with this histology, which was confirmed by this review of the MA.27 study by Strasser-Weippl et al. Patients with invasive lobular carcinoma had improved overall survival when treated with anastrozole as opposed to exemestane (HR, 1.8; P = .55), consistent with the findings in the BIG 1-98 trial.
    2. I will be using more AC/T and less TC in patients with high-risk early breast cancer, based on the ABC analysis of three randomized trials presented by Blum et al (Abstract 1000). In this initial report, the non-anthracycline regimen did NOT demonstrate noninferiority to the anthracycline regimens. TC may be noninferior for ER-positive patients, however, but for receptor-negative patients, I will use anthracyclines in most cases.
    3. I will recommend the continuation of aromatase inhibitor (AI) therapy for at least an additional 5 years in high-risk postmenopausal women with early-stage breast cancer. Many of these women have been reluctant to stop their AI at 5 years; I have generally made recommendations case by case, but mentioned that we will have data to help guide our decisions, once we had the results from the MA.17R and B42 studies. The initial results from MA17.R were presented at the Plenary Session (Abstract LBA1) by Dr. Goss. In patients treated with 5 years of AI, as initial therapy or preceded by up to 5 years of tamoxifen, extended AI treatment to 10 years (as opposed to placebo) significantly improved disease-free survival. The gains were modest, and there was an increased risk of osteoporosis; so, I don't plan on this approach in all of these women, but I will have the discussion, considering the risks and benefits, and probably recommend continuation in women at high risk of late recurrence. Data presented in Abstract 505 by Pan et al was an analysis of predictive factors for late recurrences in ER-positive patients (over 46,000 British women followed for up to 14 years), and its findings will help in advising our patients.
  • brutersmom
    brutersmom Member Posts: 948

    I have been noticing that my night sweats are getting worse. I know I have seen suggestions before but I was not bothered by them at the time. I am wondering what worked for people?

  • tjh
    tjh Member Posts: 272

    I have a cold rice pack that I can put around my neck....I typically sleep through them...I also sleep with my winow open...even at 35 degrees....drive hubby nuts. If they are bad I sleep in spare bedroom, that way he doesn't freeze😀

  • Sloan15
    Sloan15 Member Posts: 845

    I've noticed that my night sweats are worse now, too. It's not going to make me quit, but I do notice more now. I've been on AI about 4 months. I switched to taking them at night for a while, and that helped. I might try taking them at 5 pm because I always get sweats when my body first gets the meds and when my body is coming down from the meds. I'm hoping that taking them at 5 will put me in the middle of the dosage.

    Peggy - yay on being done with everything on the house!

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Sloan, thanks! Only a little more packing to do (but definitely not tonight!). Re-inspection tomorrow and that should be fine. Closing July 1st (long distance of course since I leave Friday). Whee!

    HUGS!

  • lago
    lago Member Posts: 11,653

    Make one of these and put it in the freezer. Take out when you need it: http://www.craftster.org/forum/index.php?topic=382...

    image


  • grainne
    grainne Member Posts: 119

    Hi, kawigirl1260. I'm interested in your diagnosis which is the only one I've seen similar to mine, which is dcis/idc 1.3 0/2 nodes clear, grade1, er+ pr+ her2-. I had a lumpectomy and rads with 3 boosts for a narrow margin. The idc subtype is tubular, which i know has a good prognosis. It seems to be that the dcis was beginning to form on my last mammogram but the changes were very subtle and not picked up, which i do accept. The mammogram i had in february picked up a mass. It seems that there are areas within the dcis which became invasive. Was your dcis intact and distinct from the invasive element so that it could be measured separately? Mine wasn't, so the whole tumour was 1.3. Tubular carcinomas are usually less than 1 cm so i feel mine is very large! k7nd regards.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Grainne, Welcome! It would be very helpful if you would fill out your profile and make everything public. It is hard to remember the stats for each person posting here and that information reminds us. We also love knowing where you are located - we seem to be everywhere and getting together with a BCO sister is awesome.

    HUGS!

  • grainne
    grainne Member Posts: 119

    Thank you PontiacPeggy for your kind remarks. I will do that.

    I am poeting from Northern Ireland. Kind regards.

  • jnu3
    jnu3 Member Posts: 56

    I had read that anastrozole was the preferred and most effective treatment for invasive lobular carcinoma; my diagnosis and my current AI

  • Molly50
    Molly50 Member Posts: 3,008

    jnu3, apparently that's the report out of ASCO 2016

  • jnu3
    jnu3 Member Posts: 56

    Also note the site "odd one out" which is directed to ILC.

  • iamnancy
    iamnancy Member Posts: 641

    Lago - wow, that's a "cool" necklace... I am not crafty enough to make it though..

  • Kawigirl1260
    Kawigirl1260 Member Posts: 16

    Lago, my MO wants me taking 1600 mg of calcium and 800 IU of vitamin D daily. And, you're right, natural is better than a pill. Just need to start eating better! I have a bone density scan set for 1/28 as a baseline.

    Grainne, my IDC tumor (1cm) was found in a routine mammogram. Showed up as "a slight change from last year's films." Biopsy confirmed the cancer. Lumpectomy/SNB on 1/7 got the tumor with clean margins and showed 0/4 lymph node involvement, but showed DCIS. Did not get clean margins that day. Did a re-excision on 1/14, still dirty margins, so went with a single mx, no recon. Since I have no history of BC, no node involvement, MRI showed no other IDC, and the tumor was so small (they actually got most of it in the biopsy), med team recommended smx and AI. No chemo or rads. MX path report showed multi-focal DCIS, but all margins were clear. The report said the largest site was 2mm and all the other sites were concentrated around the original tumor site. I think they "measured" the IDC separately from the DCIS.

    Started back on my AI yesterday. Let's see how quickly it takes for the SEs to return. After reading this thread, I've moved it to the a.m. to see if that helps with the sleeping issues. Already having some neck pains. (sigh...........) Gonna pull out the Deep Blue essential oil since that helped before.

  • pennsygal
    pennsygal Member Posts: 264

    Hello all

    I've been coasting along pretty well on the exemestane, but for the last week or so I've had swelling in both hands and feet. I've read this can be a concerning SE. Has anyone else experienced this?


    Thanks.