Decisions decisions - no more Letrozole or other AI???

Lily55
Lily55 Member Posts: 3,534

Well yesterday i felt like the real me and now know without a doubt that letrozole has been largely responsible for my low mood and feeling ancient. I still get scares espeially on hearing about three local people dying of cancer recently, but I was able to not descend down just acknowledge the feelings and move on. Even my partner, who is not known for his observational skills commented on how different i am now......



I still have feelings about my mx and body image but they feel a lot more manageable.....



So what to do now? I know how important hormone suppressors are for lobular but i dont want to spend years of misery and feeling my life is invaded by cancer purely because of the hormone drugs that make me feel so awful physically, mentally and emotionally......i

i was a very oestrogen dominant person before so wonder if the drugs just take too much away?

Has anyone ever reduced the dose to mitigate risk and reduce side effects?

Any other advice or info hugely appreciated, thank you

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2013

    Lily, I can't give you much advice since I'm taking tamoxifen. I do know that other women have reduced dosage of that drug from 20 mg (typical dose) to 10 mg for at least some benefit. Perhaps you can do the same with your dosage. 

    I am very estrogen dominant too and that concerns me--am finding that it might be harder to lose weight on tamoxifen now, that I've been on it over a year, but I'm reducing my dosage of effexor (75 to 37.5) which my MO rx'd to mitigate hot flashes from chemo-pause. I find that through research, effexor also affects weight and metabolism so I'm hoping reducing the dosage will make it easier to maintain my weight.

    I hope someone will weigh in soon on your post.  Perhaps posting on the hormone tx thread might get you more responses...?

    Hugs

    Claire

  • Racy
    Racy Member Posts: 2,651
    edited May 2013

    Lily, please talk with your onc about your feelings. I am not sure if low mood is a side effect of Femara but it is definitely a side effect of cancer.



    I take an antidepressant along with Femara.



    Also, consider counselling. You are dealing with a lot and it might help you to talk with a counsellor to learn coping strategies.

  • Momine
    Momine Member Posts: 7,859
    edited May 2013

    Lily, I think you need to ask for some help to deal with the low feelings. I can't in good conscience tell you to skip the AI.

  • kira1234
    kira1234 Member Posts: 3,091
    edited May 2013

    Lily, I had so much trouble on all the Al's. For me they caused me to break out in a skin rash over my entire body, so using them wasn't a choice. I wasn't willing to just give up though, so my Onc. decided to try me on Tamoxifin. I've been on it 6 month so far with no extreme SE's. Just a suggestion to keep trying something else might work better for you!

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    But that is the thing, now I have been off them for a few weeks I don´t have low feelings!  Yes I get an odd day when I feel a bit low but nothing like I was before....due to a vascular condition I cannot take tamoxifen, risk of clots....

    I have contacted a private oncologist as the normal one here is impossible to see and not open to discussion or flexibility

    I am having counselling too but don´t feel like I need it anywhere near as much...

  • kira1234
    kira1234 Member Posts: 3,091
    edited May 2013

    Lily, I know while I was on the Al's I was very depressed. I'm sure it's because they take all the estrogen from our bodies. My Dr's theory for me was my body seems to need the estrogen to prevent the rash. I just don't know it's such a hard decision. Can they give you something to prevent blood clots? I know I have to worry about that as well. Lots of heart disease in my family. My older brother has had a heart attack, and the younger has had by pass surgery.

  • bluepearl
    bluepearl Member Posts: 961
    edited May 2013

    You might want to try an anti-depressant. if feeling low is the problem....they also help with pain too. There are "natural" anti-estrogens but they are not strong enough to have much of an influence. and given your tumor profile, anti-hormonals are pretty much needed.......but so is quality of life. Many people do not want to take an anti-depressant but in your case, it could save your life. Please consider.

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    I am not good with anti depressants, I am one of those people who become very agitated and negative on them, I have tried a good few but open to suggestions, I am jut not good with medications in general as I am very sensitive all round to so many things that have no effect on other people.....

  • Momine
    Momine Member Posts: 7,859
    edited May 2013

    Lily, do you have any experience with finding something that helps you with depression? In the past, I mean, before BC.

  • kar123
    kar123 Member Posts: 273
    edited May 2013

    Lily,

    I am on arimidex, but in the beginning the aches and pains were hard to deal with so my onc switched me to aromasin.  The aromasin gave me the same low feelings you are having.  Switched back to the arimidex and after being on it awhile, I have either gotten used to the pains or they just aren't as bad.  I think trying a different AI maybe the first course of action.  Once you have tried them all then you can make a better decision.  Unless the SE are just impossible, give each one you try a little time.  Sometimes SE go away or get better once you have been on a drug for several weeks.

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    No never found an ok anti depressant so just used 5HTP in the past which did work but tried that with letrozole and did not work.......I was fine on letrozole for a good 5 months then it just started to change and got worse and worse.....I am waiting for advice of private oncologist but he has already said tamoxifen not a good choice for me.........I do get fed up with myself at times as I am so sensitive to medications others can take and not even notice......

  • Momine
    Momine Member Posts: 7,859
    edited May 2013

    Lily, I understand, but I did not mean a medication. I get that you and meds do not get along well. Thing is that there are many other possibilities for at least easing depression, like meditation, exercise etc. I am wondering if you can think of a time when you felt good for a spell, and maybe try to reconstruct what you were doing then.

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    I exercise, walk, eat well do all the things that normally worked for me but with letrozole they did not work after a while although I kept on doing them........I was told not to meditate as was too traumatised but think I probably could start trying that now........I am very worried about going backwards on any medication as I was so utterly miserable and while I don´t like my situation now nor my lop sidedness I can just get on with it as I am now and not get sucked down in to the pits.......what really got me down was that nothing seemed to reach or lift me on letrozole, think it must have been jsut too much ostrogen blocked, I do believe it really is about balance and types of oestrogen and not about blocking all oestrogen but the research is not there to support my belief......and I need to survive meanwhile

    I really appreciate all your comments and advice.......

  • Racy
    Racy Member Posts: 2,651
    edited May 2013

    Lily, perhaps a psychiatrist may be able to help you.

  • bluepearl
    bluepearl Member Posts: 961
    edited May 2013

    Lily55: anti-depressants DO cause agitation at the beginning. No one told me that and the doctor started me on 20 mg. citalopram....I ended up in emergency with a nervous breakdown. What SHOULD have been done, is starting on 10mg PLUS ativan for the first two to three weeks. By then, the anti-depressant kicks in. Like you, I am sensitive to meds; I can usually cut them in half and get effects....so I started my anti-depressant on 5mg. for one week, then 10mg using ativan as needed. Worked. Citalopram is fairly benign as far as anti-depressants go and doesn't interfer with tamoxifen (and none of them do with letrozole). The very BEST anti-depressant for really badly depressed people is effexor but ALL anti-depressants can cause agitation so ativan (or any diazepam) is recommended to get you over the hump. despite the nervous breakdown, I managed it. Interestingly, they are finding out that tylenol....YES tylenol....has anti-anxiety effects too.

    There are CD's out there called "Hemi-sync" CDs which help you relax and meditate by synchronizing both hemisphere's of your brain.

    Also, try a different A.I....there's a few and not all of them work the same as each other. Sometimes, the SAME A.I. works after you stop and then start, without side effects. I found this with tamoxifen.

    Have they considered tamoxifen + blood thinner?

  • Momine
    Momine Member Posts: 7,859
    edited May 2013

    If you have trauma so severe as to not allow meditation, then I really think it would be a very good idea to consult with a psychologist or psychiatrist, whatever you decide to do about the letrozole.

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    That was on the letrozole Momine, now i feel largely ok! I would say definitely 80 percent normal by comparison........i am on blood thinners already and only have 80 percent of one kidney working so need to be careful with too many drugs to process but i will discuss all your suggestions with the doctor, thank you

  • Momine
    Momine Member Posts: 7,859
    edited May 2013

    Lily, best of luck with finding a solution that can work for you.

  • choochoobella
    choochoobella Member Posts: 43
    edited May 2013

    Hi Lily,

    I understand what a terrible dilemma you are in.  It would be so hard to choose to go back on an AI after such devastating side effects.  I have only been on Femara for 2 months, but I feel the side effects have been steadily increasing (more joint pain, burning in my hands and arms that wakes me up at night, and depression).  With your profile, it would certainly be better for you to continue to be on an AI, but I read your message loud and clear:  At what cost?  Is it worth it to prolong my life if a drug robs me of all quality of life?

    As other responders have said, maybe you might do better on one of the other AIs.  I would try one again before choosing to do without entirely.

    I also think it would be a good idea to talk with a psychiatrist.  I have struggled with profound depression for most of my life.  I am so grateful for anti-depressants, which I have been on for the past 18 years.  That is not to say that the anti-depressants have resolved the depression, but they have definitely helped.  I have had very different levels of success with various anti-depressants.  The first one I took was Zoloft, and I felt it was miraculous because it lifted me out of a state where I didn't care whether I lived or died.  It allowed me to function; I had many days of break-through depression on Zoloft, but I never felt as low as I did before taking it. 

    Unfortunately, I seem to hit a wall with each anti-depressant I've taken, with a return to depression after a period of between 2 and 4 years.  I've been on a half-dozen anti-depressants at one time or another over the years:  Zoloft, Effexor, Celexa, Cymbalta, Lexapro, and Wellbutrin.  I was "hitting the wall" with Cymbalta last fall before my diagnosis of breast cancer.  My psychiatrist added Wellbutrin to my therapy and that has helped.  While breast cancer has been scary, depression, for me, is terrifying because it reduces me to a feeling of utter hopelessness about life, so I understand your reluctance to try another AI.  Could your oncologist and a psychiatrist consult about your treatment? 

    Lily, I am thinking of you and sending good karma your way as you decide what to do. 

    Take care,

    Julie

  • Lily55
    Lily55 Member Posts: 3,534
    edited May 2013

    THank you Julie -

    I came across this when scrolling through its on a stage IV thread.....interesting reading about using oestrogen to TREAT metastatic breast cancer

    http://m.jnci.oxfordjournals.org/content/103/12/920.full

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