Break from AI

Options
karen1956
karen1956 Member Posts: 6,503
edited June 2014 in Stage III Breast Cancer

I posted this on the Hormone thread, but decided to post it here as well....I saw my onc on Monday  for my 3 month check up..one of the better visits in quite some time.   My onc has always told me that I am doing well....yesterday was the first time that he added "cancer wise" and said that his job is to keep me cancer free.   We talked about all the side effects and how unhappy I am that I am not back to where I was prior to Dx.  The thing that has me the most upset, is that I can no longer do what I did before Dx...I am no longer the person I was before. This is what bothers me the most.   He blames a lot of it on not enough sleep and that if I could get 8 hours (yeah get real, didn't get 8 hours before Dx) sleep then some of the problems would go away.  We talked about the joint pain, insomnia, anxiety, depression, and cognitive issues.....onc was incredulous about how much meds I take to sleep...also talked about that if I push myself too much for 2 or 3 days, then I hit this brick wall...that I just can't function....he talked about how lack of sleep inpacts cognitive skills (I know that) and asked if I wanted any testing done.  I told him that I did not see any purpose in a neuropsych eval as I have no prior baseline and he said that this would be the "new" baseline to measure against any possible "future decline"....and I talked about that even if things came out WNL, that would not show any changes from before all this c***!!! We kind of left it open...He also asked me if I had ever seen a sleep specialist....YES...two years ago and this past summer participated in a study called "REST"  looking at using visualization...also talked about biofeedback and he felt that I should look into it.... It was hard to explain that its just not being tired at the end of the day, it is total exhaustion which is different.  I told him that I did not think that I could work full-time anymore  due to the cognitive issues and the overwhelming fatigue that hits (not just tired, but utter exhaustion) when I go over my limit (whatever that is these days)....he offered to write whatever I needed (as he has offered several times)....I told him that I left my full-time position last year and was working 2 days/week, but did not feel that I could increase to full-time.....Onc told me that the AI's provide me with a 30% benefit/increase in disease free survival....as much benefit of chemo....but then he went on to agree that QOL is also important.  He said he was willing to give me a couple month break  from the AI's....he asked when I would start and I said NOW....so with my onc's blessing, I am taking a 2 month reprieve from the Aromasin.....I see him again the middle of May  (2 months) and we will see how I am doing....if I feel a lot better, then we know its from the AI's and then the  question will be, what do I do....go back on AI's or take my chances.....if I don't feel better, then I will probably go back on them.....but I really want the chance to feel good and see what is from the AI's and what is just is!!!!!  Onc also talked about that even though Tx has been a few years, it is still cumulative....so till the middle of May no Aromasin (I've tried them all)...I have always liked my onc....but yesterday I had a new appreciation for him....he really has heard me and was willing to listen to me and know how unhappy I am....For now, I know I am making the right decision....it may be a risk, but its one that I feel that I have to take.....Hugs to one and all.....Karen

· Share on FacebookShare on Twitter

Comments

  • KerryMac
    KerryMac Member Posts: 3,529
    edited March 2010

    Have you noticed that you are feeling any better? I will be interested to see if you get an improvement. Keep us posted.

    · Share on FacebookShare on Twitter
  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited March 2010

    Your frustation is so high and so justified.  You've been working for solutions and trying to resolve this for so long and it's having such a significant impact on your daily life.  I'm not there yet -- I have a ways to go before I'm through with surgery and rads and on an AI -- but when I look out in the future I do wonder if I'm going to be doing the same level of work and have the same daily routine that I was so comfortable with.  Thankfully you have an onc who listens and understands that there is more to life than scan results and tumor histology.

    I hope the hiatus gives you back the life you deserve.

    Please educate me since I'll be getting one of these drugs.  Have you already tried Femara and Arimidex?  Or is it not recommended to switch between them.  Or are there other contraindications that keep you away from them?  I'm only a couple of months away from this discussion with my onc and it's time I start learning more.

    · Share on FacebookShare on Twitter
  • karen1956
    karen1956 Member Posts: 6,503
    edited March 2010

    Christy....I have been on them all....started on Arimidex...lasted 8 months...joint pain was horrid and I also developed CTS...surgery on right wrist and was waiting to do other wrist after exchange surgery....low and behold, while off AI's the CTS went away......then Femara for a month...first two weeks were great then the side effects hit again....move on to Tamox....two months but too many GI problems....and now Aromasin.....developed deQuervanes tendonitis in both wrists that necessitated surgery......

    BUT...Christy please remember that not everyone has side effects from AI's...some have none and others either go away or as my onc has told me, they get used to it...only 10% (I think that is the number he used last week) have lasting side effects...Also, on the boards here, you hear more about the problems than those without.  I remember telling someone I used to work with who is also a survivor and did tamox and then Arimidex and she was incredulous when I was telling her about all the side effects I was having....and a friend of DH was Dx a month after me also has no side effects.....so hoping you'll be one of the lucky ones.....Will write more later.  Karen

    · Share on FacebookShare on Twitter
  • weesa
    weesa Member Posts: 707
    edited March 2010

    Karen I had a history of AI trouble similar to you. The tendons tore off the bone from inflammation and I developed rotator cuff difficulties, knee problems, trigger finger problems. I took numerous vacations from the AI's and kept switching around from one to the other. The AI's caused a type of arthritis for me. When I stopped taking them my se's would disappear in a few days. I finally gave up taking them all together after almost six years. Originally I had hoped to take them for ten years.

    · Share on FacebookShare on Twitter
  • helena67
    helena67 Member Posts: 357
    edited March 2010

    Karen,

    Hope you will feel better soon. A brief break may do the trick. I wonder also if dosing every other day may make the treatments more tolerable?

    Best,

    Helena.

    · Share on FacebookShare on Twitter
  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited March 2010

    Thank you for the information Karen.  I had just assumed that the drugs would have been different enough that they would also result in SE.  But it sounds like they're in the same family and only minor changes in their characteristics. 

    I'm going to keep the optimistic view for myself and just assume when it's my turn to start taking these everyday that it'll be OK.  I'm not going to borrow trouble.

    Thanks.

    · Share on FacebookShare on Twitter
  • KerryMac
    KerryMac Member Posts: 3,529
    edited March 2010

    Christy - I am on Arimidex and am OK. I don't think everyone gets SE's that are debilitating.

    · Share on FacebookShare on Twitter
  • apple
    apple Member Posts: 7,799
    edited March 2010

    Karen that sounds really good for you.  I read your similar post on the hormone forum.

    I wonder, if you were to totally avoid caffeine and any sleep drugs how long it would take you to sleep deeply.  I have very little experience with sleep aids and you can shoot me if I am off mark here..   What i really noticed when i did take them a couple times is that the action/reaction syndrome is very strong..  I was very wakeful after a night of a sleep aid.

    if the drugs that you take cause sleeplessness .. well, it will be very interesting to see how your sleep issues resolve when you go off of the AL.  I have a sister in a heap of trouble healthwise.. she faces a MAJOR MAJOr surgery in a couple weeks..  I am trying to get her to totally abandon on the prescription and non prescription drugs that she takes including Ambien  and another couple... and I obviously don't have the proper amount of empathy because she is kind of  mad at me.

    I hope you report back.. I certainly do not mean to be judgemental.. just interested. How long have you been on Aromisan?  i kind of have sleep issues now.. it really does make you dumb... it makes me dumb.

    · Share on FacebookShare on Twitter
  • karen1956
    karen1956 Member Posts: 6,503
    edited March 2010

    Apple.... I don't consume any caffeine and haven't in years, well before Dx....I only drink water, herbal tea many mornings and red wine..I do take stimulants, but  they are out of my body by the time I go to bed...I don't think they have impacted my sleep as it was bad before I started taking them a couple years ago...the sleep problems started when I was told I had BC....started taking sleeping aids (Ambien, Lunesta etc) during chemo...none have been very effective....now, if I take enough to choke a horse, I sleep through the night....but I avoid taking so much as it just doesn't feel right, yet my psychiatrist is the one to Rx it....Hubby today said that I sleep very restless and that sometimes it wakes him up....I asked him if I was resltess last night as I had taken the max dose and he said yes, its like I'm having an argument with someone....I know I am restless without the sleeping pills, but wonder if it is worse with them....I am going to start keeping a daily journal of what I take and how I feel (suggestion of therapist) to help know the benefit (or lack of) of stopping the AI's....after just over a week off of the Aromasin (after 3 years on AI's and 2 1/2 years on Aromasin) I am still having aches and pains...sore wrist, sore legs and kness, reflux etc, but I feel a difference in my mood....today I woke up feeling like I was in a good mood....so is it that I am off the Aromasin, or is it that I took control of my life (per therapist)...I tend to think it is starting to be a benefit of stopping the AI, but time will tell.....I would love to stop so taking so many Rx....last night I took Ambien 12.5mg CR, Ambien 10mg and 600 mg gabapentin...it knockis me out, though takes a while, but I just don't feel good about it...but last night I slept 6+ hours straight (I don't remember waking up)...so was my good mood from sleep or .....Will keep you posted....btw...I got my blood work results today....all was WNL....so that was good news...

    · Share on FacebookShare on Twitter
  • weesa
    weesa Member Posts: 707
    edited March 2010

    Yikes, Karen, does your doctor know you sometimes double up and take an Ambien CR 12.5 and also an Amnbien 10mg?  That seems like an awful lot of Ambien which has a reputation for supressing breathing when too much is taken, and "too much" seems to vary from individual to individual. Please reassure me...

    · Share on FacebookShare on Twitter
  • karen1956
    karen1956 Member Posts: 6,503
    edited March 2010

    Weesa....it is my psychiatrist who Rx the double dosage of the Ambiens and also told me to start back on the gabapentin....and if I wake up during the night to take my Ativan....told oncologist last week at my 3 month visit....everyone is trying to get me to sleep through the night....they all say I need 8 hours!!! yeah sure!!! I didn't get 8 hours before Dx, but I would settle for a solid 6 - 7....6 is good....Karen

    · Share on FacebookShare on Twitter
  • weesa
    weesa Member Posts: 707
    edited March 2010

    Thanks, Karen, that sounds reassuring. Do you feel groggy in the morning after so much stuff? I have found Ambien to be just about my best buddy, but I take the small--6.25 Ambien CR.

    · Share on FacebookShare on Twitter
  • karen1956
    karen1956 Member Posts: 6,503
    edited March 2010

    Sometimes, but interesting, this morning I did not, but I woke up with a start, like kind of startled, but got out of bed pretty soon after waking up, then got my shower and got going for the day....it may be because I had 6+ hours sleep....I would really like to get the 6 hours sleep without having to be soooo drugged!!!!  Not sure what I'll take tonight as I enjoyed some wine tonight and don't think I'll get to sleep as early as last night and have to be up by 6...so probably will just take the 12.5mg CR.....now if I could just get good about keeping track of it daily!!!.  Karen

    · Share on FacebookShare on Twitter
  • weesa
    weesa Member Posts: 707
    edited March 2010

    Karen, I didn't want to hijack this thread about AI's so I started a new topic called Sleep.

    · Share on FacebookShare on Twitter

Categories