Life on aromasin
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I have started to post several times today and backed out each time because I don't want to be a bad enfluence and also feel very whiney when I compare my SE to those of many of you. I continue to battle the chronic back pain related to degenerative disc which I feel has been excelerated due to the aromasin. I feel like I'm watching time lapsed photography recording the progress of the aging process since I started this med with everything from eye lashes falling out to dry papery skin. I have sunk to such a dark place that I have even thought of suicide. I don't know if taking this medication is worth the SE and you still don't have any guarantees that CA won't come back somewhere else. Is it worth it to feel and look 20 years older then I am with this gamble. It seems to be either way is a type of death.
Long story short, I quite taking them about a week ago and I can't tell you how much better emotionally I feel. For the first time I feel like I've taken a constructive positive step. I feel like I've cut the puppet strings and have control again. Of course I haven't told my family or the oncologist but I think this knowledge would make them feel out of control and there is no need to put them through that. Maybe sometime in the future I'll start back up but it will be my decision on my terms. God knows very little of this has been on my terms and I finally feel like I have my power back.
I just want to say I really missed everyone during this past period of inactivity and glad to see you back.
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Oh Seabeal, you poor thing, you aren't being whiney - you are having major se's!! I felt much like you on Arimidex. Once I stopped it, it was as if a huge weight had lifted off my shoulders. I was depressed too - and having major pain in my back and knees. My brain also had stopped working - I couldn't even spell properly - and I make a living by putting words together, so that was a major problem.
I had two months of Arimidex before starting on Aromasin - and I was so apprehensive about starting another AI - I was convinced all the terrible se's would come back. They haven't. I do have stiffness - especially after sitting for a while. My brain function is pretty much back to what it was pre-chemo now - I've had a couple of promotions at work, so I know it's getting better.
My skin is still very papery, and my hair is pretty thin (at least compared to what it was!) and my memory is shot (but interstingly not for work stuff, just general stuff). I've managed to lose nearly 40lbs and am now going to the gym regularly and I feel pretty wonderful. Life is good again :-)
My point is - Aromasin may not be the drug for you - try another one, you may find one that agrees with you (as I have) it can make all the difference. Talk to your onc and ask about trying something different and see how you go. If the next one is not good - try another one. If none of them are any good for you, then yes, I would think that QOL is pretty important, and you can make an informed decision.
Sending you (((((hugs))))) it's not easy is it?!
Trishxoxo
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Okay, I broke down and went back on exemestane after a 6 week break. I am experiencing something very strange - very bad pain under both arms. Has anyone else had this se?
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I haven't heard of that. Were you doing some type of exercise while on the break? Does it feel like muscle soreness? Hope someone else can chime in--
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Mary, I haven't heard of that as an se. But, you sound like you relapsed on some sort of illicit substance! We have to remember, Als are life saving drugs. You should not feel guilty or bad for taking them!
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Thanks Trish. I'm suppose to see the oncologist the first of August and will discuss this with him then but for right now I'm just going to go the same course with the hopes of getting out of this black hole and continue to gain more control. Right now I just feel a sence of relief and freedom that I can only imagine you would feel after being locked away from the world for an extended period. I will also know by then whether the radiofrequency neurotomy done to my lower back is going to work. They basiclly heated up the medial nerves on both sides of my spine to destroy the nerves ability to transmit pain signals until the nerves regenerate. I could block the pain or at the very least decrease the pain transmission for 1-2 years. I think if this works it will go a long way in improving my depression. I never knew how far chronic pain can bring you down.
Yorkie I love you and your wonderful sence of humor!
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(((Seabeal))), thanks and I'm so sorry you are suffering.
Btw, my DH is going through terrible chronic pain in his knee and leg, so I am aware of how terrible that situation is.0 -
Seabeal - call your MO and move up your appointment. Also, ask for an appointment with the oncology social worker. Be firm...some holes require help to climb out...chronic pain is serious so ask for help. My MO said if any SEs call and try something else until we find the 1 that works for me. Call ask for help.
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Dogsand jogs,
No extra exercise while onmy break from med. Yes, it does feel like muscle strain - but more painful than sore.
Yorkiemom,
Actually I feel like I am on an illicit drug. When I made this journey almost twelve years ago I hated Tamoxifen and Arimidex. Now I tell anyone who will listen - that was a walk in the park. Also, I have to remind myself that in spite of taking those for six years, the cancer is back. I see the oncologist today so anxious to hear what "good" news I get today.
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Mary I'm so glad u'r seeing u'r Dr. today and let us know how u feel.
SEABEAL==YES I'M YELLING AT YOU. OMG u could have told us --anyone of us. I did not know u were so down, or feeling that bad really. Whatever decision u make is u'r decision-I;m wrestling with that now---I now have degenerative disc disease and pain is chronic and I'm not taking my aromasin now--I did not tell my Dr. I se her at the end of the month--all I have is pain--the Dr. said it went from moderate to severe in 3 months--which to my Dr. was quick--so sent me to a back Dr. and she wants to send me to PT cuz I also have bad arthritis but I understand wxcercise for arthritis (I knew that) but I thought I have help with the pain in order to do PT--Its very confusing to me--Do they men excercis will generate my discs bac--and my vertabrae---I don't get it all. Oh I'm sorry but u see how we understand. This damn thing never ends. When u went off di u feel any SE of anything else??? I was taking 1 every other day now I'm not taking any--and somehow I feel like I scattered and funny in my head. I don't know anythingany more.
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Cammi - I have degenerative arthritis in my lower back now - caused by Arimidex :-( It's in my knees, ankles, hips, wrists and shoulder too - but for some reason they aren't quite so painful.
The idea of exercise is to strengthen your core, around your diaphram etc - this will make it easier on your back. It actually does help. I've been doing this for about 6 months now, and just recently I moved house. All that packing and lifting boxes, I thought my back would be in agony. Surprisingly - it was pretty good. I did have aches and pains, but not anywhere near what I thought it would be like.
My DH also has 2 prolapsed discs and very bad arthritis in his back - used to be in chronic pain, to the point we were considering major surgery on his back to fuse the spine to help. He started going to a chiropractor (a good one) and exercises. He still has problems, but not like he used to. He too did a lot of packing and moving boxes and came through almost as good as me :-)
So - exercising can help. I do a lot of back exercises as well as scrunches to strengthen my tummy - which in turn supports my back.
Hope this helps xox
Mary - I hope you get good news today - this is a horrible disease, and to have to go through it twice is awful. My thoughts are with you today.
Seabeal - hope you are going ok?
Trish0 -
My SEs went from moderate to severe in 3months. WHile I dont think i had degerative discs, i could barely get out of bed and walk around. Exercise? it was excrutiating, if i could even get to the gym. Now, 5months after stopping, Ive been doing yoga since mid march and I feel so great. Highly recommend. IF not yoga, walking. Good luck and bless your hearts ladies......
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Trish- Shayne Thank u--I'm starting PT next week so I know what one that wil help. I talked to them today and told them I don't want a Boot camp PT or I'll leave, and they assured me they will be kind--so hopefully it wlli go as planned and I go right in an office next to my Drs. in the hospital--so it's close and convenient for me
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I am 63 and cannot wait for Medicare! Funny, I never wanted to get older, lol! Anyway, it is ok because I have been getting great medical care. I live in a county that cares, Broward-Ft. Lauderdale, FL. They have a special foundation for adult uninsured. My problem is the treatment for BC. For me, the drug is extremely lethal. I was not given the option for a mastectomy, I am
treated with Aromasin, a lumpectomy was the option which is ok; but the drug has made me disabled. Breast Cancer org has a blog on this drug and side effects; the women are like me with many adverse events. It is ironic I use to work for pharmaceutical companies. Use to work with patient assistance prog. Good Karma! Since now, I am helped by people like me. I was real good with my patients. I retired early because of this vertigo or dizzy feeling. I can fall, so I use a cane for balance coordination. Since Aromasin, I had vertigo the first week. I hear the other drugs are worse. I also developed high blood pressure and mild lucanar infarct of the brain. Truly disabled now!0 -
Adriana I really don't know what to say--I'm sorry u had to join any group about cancer ut u are certainly welcome hhere, that's for sure. Most of us blame aromasin for eeryting but we don't know for sure---u sound like a lot is going on, but some of the SE's are different for different people on other drugs too---I would have a good talk with my Onc. if it's that bad for u. Di they say it's all from Aromasin, cuz most of us think it's lethal on us but who knows it could be left over chemo too. That's brutal too. It seems like everything digts the cancer, but leaves other rotten things behind. But I'm no medical person, I just know from my own experience. Talk to u'r Dr. Please don't suffer like this.
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First all I want to thank all of you and appologize for taking so long in responding. I have been listening, thinking and enjoying feeling more like my normal self. The longer I'm off this the better I feel both physical and emotional. I know I can't throw in the towel and really don't want to but had just got to a point I just had to get off the merry-go-round. Still haven't told my family and probably won't since I'll either go back on the aromasin or something and no sence in upsetting them. I'm going to OK this week to start spending more time with my DH while he is working there and start coming home every 3-4 weeks to take care of business here. Decided to go to Deaconess to get a new pair of eyes to look at my breast wound as there has been no change in over 2 months. My back is feeling better with the chronic pain not as severe as it was and I don't go back to the doctor for that until mid July.
My plan is to start back on aromasin and discuss all of this with my MO. It will also give me an opportunity to see if the depression is going to come back. Once again thanks ladies, I can't think of a better group of ladies in this world then all of you, love and praying for each of you.
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Good luck and enjoy your vacation - in all things
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Seabeal Good Luck and get back to u'r life and try whatever u need to feel better. It's been a long road.
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I just went off of Aromosin after 5 years. Within 12-14 hours of first day of not taking it, had major heart burn. Did anyone else experience this? If so, how long did it last. I was soooo looking forward to getting off of AI (side effects were major, major fatigue, insomnia, hot flashes, achey joints) and am glad to be off of it, but now cannot sleep because of the heart burn.
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tkicky I already take something for heartburn so maybe now u need that--Geeze u lasteed 5 yrs on this crap--wow u are a trooper,
Start with the 24hr Pepcid otc and if u need stronger tell u'r Dr. Good Luck
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I guess you could say, tkicky you are our hero!
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I posted this on another board today and wondered what any of you might know about it:
These rose pictures go a long way to cheering me up. Thanks.
On a serious note, I was surfing the channels this morning and caught something on the 700 Club that sounded very interesting. It was a doctor from the U of South Florida who has been researching fighting cancer by depriving them of carbs, mainly glucose. This is something I have been wondering about since my last pet scan when I got the shot of glucose. The tech said that cancer cells love glucose and the cancer would draw the glucose like a magnet so the cancer would show on the scan. This made me wonder why neither of the two oncologists I have had for my two bouts ever spoke of diet. Anyway, the patient who was interviewed had metastatic cancer in his skeletal frame and was given three months to live. He decided to try the no carb diet and is now cancer free for over one year.
Has anyone heard of this or had any success with a no carb diet while fighting the big "C"?
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I don't understand anythinng anymore--My dad was given a short time to live with some kind of obsure cancer and he came home to die--didn't change a thing drank his wine ate what he wanted--pretty much the same for everything. He was in his early 80's so his chances maybe worse--well 16 yrs later he died not from cancer, and my mom had no chemo or rads when her breasts were removed--she lived another 50 yrs.My aunt had her cancer removed no chemo, rads or meds and told maybe 1 yr. She died at 88 and not from cancer--so u see all the studies mystify me and that's why.
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Love it guys, I've finally rearranged my life so I can start spending my time with my husband in OK City and just run home to make sure things are running smooth there and I have a new "hole" in my left breast which is red, tender, hot and leaking puss. Good thing I have an early morning appointment with the wound clinic here. I hope this isn't a sign of things to come, picked up a nail and arrived with a flat tire, my husband had a brain fart and put 6 gallons of gas into his diesel truck and I left my insurance cards on the scanner in Taos. Let's see thats 1-2-3. . .things have to be smooth sailing now according to the lore.
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Oh Seabeal
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Well, the MO finally caught up with me and started Aromasin today. Gave me the script a couple days ago, but hesitated and then swallowed that little bugger today for the first time. Nervous about the SE's since I already have arthritis in my shoulder and my knees and so, not looking forward to joint pain worse than what I already have.
I pray hot flashes are all I get but I am not usually that lucky.
Hey Cammi and Cindy! Fancy meeting you here
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Hi, April. I have been on Aromasin a couple of months. It took about a month before SEs started showing up. Mild to moderate hot flashes no worse than menopause the first time around. I expected joint pain like my brother has with rheumatoid arthritis, but my MO said for most people it really is stiffness and a little achiness. Stiffness mostly when getting up after sitting a long time. That has been the case for me - worse early in the day after taking my pill and easier later in the day. The worst thing for me is insomnia. I've never dealt with that before. I am on another med that makes me drowsy and the Aromasin won't let me fall asleep.
I refused tamoxifen because of the high possibility of problems like stroke, heart attack and DVT. I have a really bad family history for those things and did not want to add significant risk to my already high risk. When I got my prescription I read the pamphlet and broke into tears - listed in big letters were all the things I feared. I finally threw the pamphlet in the trash and swallowed the damn pill before I lost my nerve.
So far it has been maneagable. It just pisses me off to have to deal with something that I don't really have faith in to prevent more cancer.
I hope you have a good experience with few if any SEs.
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Hey April - nice having a litte vacation from rads and time to think about the next step...HT.
Just refilled my RX for Aromasin. Finishing my 3rd week...fingers&toes crossed, but so far a non event. Even got a pill box to ensure it goes down with big big supplements to intimidate that tiny little sucker. Can you believe how small...too small to cut in half and sneak up on it...so gulp down it goes. I just remind it each day that I'm bigger and badder so act normal and we'll get along:). Helps that MO said I could shop around...test drive...
Also, I'm exercising, walking, weight lifting, dancing, and just trying to pound the #### out to build my body up and ensure my terrain is not a hospitable environment for c ...yeah, no gluten, no soy, no dairy...AntiCancer book is great read,
Fight on warrior! We got this...
Cindy0 -
I am reading the anti-cancer book too! Too bad I am not following his advice lately. Since my kitty was diagnosed with diabetes, I have been having a pity party. This year has sucked big time and I have been drowning my sorrows in chocolate and pasta...bad idea. I had lost a lot of weight prior to my diagnosis and have put 20 lbs back on since January, 7 of them recently. I need to cut the pity party out and get with the program, especially now that I am on the dreaded AH. Take care and see you all soon. I am sure I will have questions when I feel my first twinge of whatever I feel.
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April u might do well on it, some do. And I'm sorry about u'r kitty.
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