Aromatase Inhibitor and just walking away.

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  • dtad
    dtad Member Posts: 2,323
    edited June 2017

    As far as I know there are no studies on less than 20mg/day. Anyone else have more information on it?

  • Ade
    Ade Member Posts: 740
    edited June 2017

    Brutersmom - L-Theanine (natural supplement) has helped me a LOT with the depression & anxiety.

    Last night I took the Exemestane at night instead of morning - and I slept well! Hoping that will lessen the fatigue too.

    I read that Tamoxafin had MORE se's. That's my last resort as the Letrozol was a nightmare before the Exemestane (Aromasin).

    Kira, I'm sorry about your relapse & hope you will conquer it.

    Artista that's encouraging for me. :o)

    Ade

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    Ade just to give you a heads up I was on tamoxafin because the others were much harder for me. I had few side effects with it. I hope tamoxafin works for you.

    As far as my 2nd diagnosis it's believed to be the original tumor back. I'm still stage 1a slow growing. My oncologist actually was planning to take me off all meds. I've been on them for 6 years. My request to at least try the arimidex. I'm to call him in a couple of months.

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2017

    I think generally from reading threads here it seems to me AIs are harsher se's than Tamox. I see my MO on Mon for a check and I know she's going to offer me to try another AI since I'm high risk but the thought of feeling like I did on Letrozole deters me big time. My arthritic knees are acting up again after a long while and I'm not about to become debilitated again. I'm at peace if I recurr or worse. Life's short anyway, there's no guarantee that the extra 3-4% over Tamox is going to prevent anything as plenty of people progress or recur on an AI so I'll roll the dice.

  • pupmom
    pupmom Member Posts: 5,068
    edited June 2017

    Butersmom, I haven't struggled at all. I have been on Tamoxifen and Aromasin for going on 6 years. People who experience extreme SEs are in the minority. There is at least one study, I think linked on this website, but don't have time to find and post. Just look into the research section here.

  • Ade
    Ade Member Posts: 740
    edited June 2017

    Thank you Kira. Why, even if slow growing, are they letting the new tumor grow? I'd want that rascal OUT!

    It's SUCH a hard call whether to stop the meds or not. I need to know from my onc next week how much it might really increase recurrence. If very little then I may choose to quit - or go for trying the Tomox. which was my 3rd & last choice. Mucinous Carcinoma is rare and invasive but not aggressive.

    Ade

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    Ade Oh heavens of course I had the tumor removed. In fact I had a double mastectomy 5 weeks ago. I can't have reconstruction because of radiation damage from the first diagnosis.

  • Brutersmom
    Brutersmom Member Posts: 563
    edited June 2017

    Ade. I found taking Arimidex at night was even worse for sleep issues. I did try L-Theanine. It didn't help and I felt sick all the time from it. My side effects were progressive. I think many of them were secondary to my lack of sleep. 2 hours a night are not enough for anyone to have any quality in there life.

  • Ade
    Ade Member Posts: 740
    edited June 2017

    Brutersmom I'm on Exemesatane (Aromasin) so that may be different from Arimidex??? I have taken it at night the last 2 nights and actually slept well! So far, so good. I hated awakening after only a few hours and NOT getting back to sleep and YES that certainly does affect quality of life! :o( Unfortunately even though I slept pretty well I am REALLY fatigued today - a real disappointment. But we had guests over for supper last night and the cooking & cleaning do leave me zonked the next day. I'm sorry the L-Theanine didn't work for you & made you feel sick. Our bodies are all so different so there is no 'one size fits all' remedy on anything.

    Kira - " I'm still stage 1a slow growing" was what confused me. Sorry

    Have a great weekend, all!

    Ade


  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited June 2017

    Regarding sleep issues - I've found that taking my melatonin a couple of hours before I want to sleep, rather than right at bed time, helps me stay asleep. You might see if that helps at all.

    I was having horrific bone and joint pain. I went back to Femara and added boswellamine on the advice on an ND who works closely with my MO. The joint/bone pain has receded considerably, to the point that I can once again handle the thought of 10 years on AIs. I know some women have had good results with glucosamine, as well, which might be more readily available than boswellamine. Hope this helps.

  • Brutersmom
    Brutersmom Member Posts: 563
    edited June 2017

    Ade, It took me almost a month to feel rested after 9 months of 2 hours a night. I think that part of that was because I am self employed and I realized once I was off the drug how many things I messed up and had to do a lot of undoing to do. That was pretty depressing.

    Hopeful82014 I took melatonin as well. Tried all different times I get really tired about an hour after I take it. If I try to stay awake then I can't get to sleep later. Some brands don't seem to work for me at all. It is interesting how each of us metabolizes drugs differently.

  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited June 2017

    Brutersmom - it sure is interesting, and frustrating, too, at times. I hope you find an approach that works for YOU and STAT.

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2017

    MT1, I was under the impression that tamoxifen is just as effective for er and pr positive.

    I was er positive and pr negative AI was more effective for me.

  • dtad
    dtad Member Posts: 2,323
    edited June 2017

    Meow....Tamoxifen is slightly less effective for post menopausal women than an aromatase inhibitor.

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    Meow you're correct if you're pr- as I am theAL's are better. I learned that the hard way I was on tamoxafin when I had my relapse. Also if your breast cancer is lobular the AL's are better for us.

  • Ade
    Ade Member Posts: 740
    edited June 2017

    Hopeful, Melatonin USED to work but now doesn't - don't know why. I can usually GET to sleep but once I wake up, even after 10 minutes, that's it. Sleep deprivation does goofy things to you! I can't go back on Femara - that was a mental nightmare I never want to relive. But I have to get up early in the morning because of the joint pain not letting me go back to sleep, so will give the boswellamine a try!

    Brutersmom I am self employed as well and I KNOW whereof you speak! Have messed up my share of orders!

    OK Kira - I was thinking Tomoxifen was perhaps my answer until you said your cancer came back on it. :o(

    Ade

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2017

    Ade- Cancer can come back on AIs too. There is no guarantee for any of this stuff. If you can hang ok with the AI then great but if not, have to question quality of life if it's miserable on the AI.

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    Ade don't think you should look at my situation and think tamoxafin won't work for you. My breast surgeon and oncologist know exactly why it came back. A very unusual situation for sure.

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2017

    If it wasn't for my eye problem I would probably have done the five years. But arthritis and bone pain were dragging me down too. I feel so much better off the medication.

  • kira1234
    kira1234 Member Posts: 3,091
    edited June 2017

    Meow I'll agree there. If I ended up with eye problems I'd go off as well

  • Brutersmom
    Brutersmom Member Posts: 563
    edited June 2017

    I had both decreased vision and loss of hearing while on Arimidex. Both improved during the first month that i stopped the med. I had cataract surgery in 2006 so that was not an issue. But my vision went from 20/20 to 20/50 both near and far. I am back to 20/20.

  • dtad
    dtad Member Posts: 2,323
    edited June 2017

    Just want to say to all that QOL matters!

  • Ade
    Ade Member Posts: 740
    edited June 2017

    Just want to thank you all very much for your input. Tomorrow's the onc. day.

    Ade

  • Ade
    Ade Member Posts: 740
    edited June 2017

    KB870 - I tried my best to take Letrozole but it threw me into the worst mental state I have EVER experienced! I was not me and I hated the me that wasn't me! I didn't care if I died! Just awful! May not have affected you that way - many do ok on it - but just wanted to share that.

    Finally saw my onc today up in Midland. It takes 3 hours to get there. He's fine with my going off the Exemestane and I will try Tomoxifen in about a week. If I still have such bad se's I am off ALL of it! He said some who stay on the meds have recurrence - some don't. . . .some who go off meds have recurrence - some don't. Quality of life MATTERS he said! He will keep an eye on me either way which is reassuring. On the way home (after lunch, Wall Mart, & an eye appointment) we drove through a BIG dist storm like I (born & raised in Ohio) have never seen! It was a WALL that completely blocked vision of the road. Have seen snow white-outs but this was like the dust storm from the first movie THE MUMMY! The car thermometer read 108 outside! Then we went through a HARD rain and the temp was 75 - but it washed off the dust! :oD Then back to heat around 99 pulling into town. After taking care of the dog we laid down for 2 hours and are now up for supper. Whew! Glad to be home and have the med thing settled for now - and it is completely in the Lord's hands. Tomorrow is rest & recoup day.

    Praying for all of you - this IS a hard row to hoe!

    Ade

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2017

    Good luck Ade. Hopefully Tamox will be much better for you. Quality of life is key. There is no guarantee with what you so you need to be able to live each day and not be sidelined.

  • Brutersmom
    Brutersmom Member Posts: 563
    edited June 2017

    Ade your reaction to Aromatase sounds like mine. My MO wants me to try Tamoxifin also. I will be interested to see how you respond to Tamoxifin. I am still debating. I have my 2 year mamogram Friday and see the surgeon the following Thursday. I just felt like I needed more then a a couple of weeks to recover from everything.

  • Ade
    Ade Member Posts: 740
    edited June 2017

    Thank you Artista - I am finally at peace with my future. It's in God's hands anyway.

    Brutersmom I wish you the very BEST and a LONG healthy future!

    Ade

  • Brutersmom
    Brutersmom Member Posts: 563
    edited June 2017

    Today I saw my surgeon for my 2 year visit. He is the head of the cancer center at my local hospital. All good this year. I told him that I stopped the anti hormone and could not decide if I wanted to try Tamoxifin because of the potential side effects. I don't have a family history of blood clots or cancer but I did get cancer. Leaves me wondering about the risks of Tamoxifin for me. He told me that about 35-40% of the people who are prescribed anti-hormones at this center, have serious enough side effects that the need to stop the drug before the end of the second year. I asked him what I can do proactively to help minimize the risk without taking the drug. Initially I got a blank look and then he said the next best thing is to reduce body fat. I told him that I put on 10 pounds while on the drug, and I will admit that some of that was my fault and some of it was because with only 2 hours of sleep a night I was too tired to exercise and too tired to care about what I ate, but I can't seem to get it off the added pounds even with the changes that I have made to my diet and increased exercise. The problem is I feel hungry most of the time. First he suggested a rehab program but he questioned if I was really too healthy for that program and need to consider a personal trainer. I have considered a personal trainer but many of them in my area are big into juicing and other packaged food programs. We finally decided on starting with a nutritionist and I would explore some of the local training programs.

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2017

    Actually, 70-75% of weight loss is through diet and portion size, not exercise. Exercise is more for stamina/strength building.

  • dtad
    dtad Member Posts: 2,323
    edited June 2017

    Brutersmom....what your doc had to say about 30-40 percent of women at his facility had to stop taking anti hormones within the first 2 years because of the SEs is very interesting. My doc at a major NYC university hospital told me 50 percent don't make the 5 recommended years. Why is this OK? Why do we often have to chose between poor QOL and increased recurrence rates? Why is there not more research on better treatment options? I also agree with your doc about the importance of weight loss and exercise. IMO they are not emphasized enough in reducing recurrence rates. I believe that is because anti hormones in general often make both difficult. Good luck to all navigating this disease.

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