Arimidex - Coping with the SE's
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Thank you very much for your responses - it's very interesting that peak efficacy is in the first 2 years as all of my joint related symptoms subsided after 18months/2 years.
Toxicity is certainly what is bothering me. I have felt truly dreadful recently - as bad as I did on chemo. I wonder if my body has just reached saturation point with this drug.
I am considering chatting to my onc about this but he is of the patient-heal-thyself school. He will tell me that I have 4 options and that the choice is mine - carry on with Arimidex, swap to another AI, swap to Tamoxifen or stop altogether. I don't know what to do!
There are so many unanswered questions with Arimidex and dosage. What, for example, about the possibility of having 3 months on and 3 months off?
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greenforg Im so sorry you are having such a rugged time.(((((BIG gentle hugs))))
Januaryice same for you (((((BIG gentle hugs))))
IF it is at all possible I would encourage you guys to keep moving even if its little by little. I have a most dreadful neuropthay to deal with over and above the curveball that Arimidex has thrown me. EVEN SO, once I get moving things can free up. SOmetimes it's better than at other times, but I think most people have found movement does help. I know I know its a pain up the butt, but we gotta do the best we can.
ruthbru...lol I did the exactly the same again this a.m. except I didn't tell you I did do a little stint at 7.45 yesterday as well as today . All up reckon it was about 2 miles. Today ( so far) and yesterday, I havent had so much joint pain. Thats gives me a break. I try and remember these little breathers and it gives me something to hang onto.
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greenfrog--pardon the rude question, but how much do you weigh? We all get the same dose of AI no matter what our weight. If you are small, you may well reach the saturation/toxicity point earlier than heavier women.
I finished my run in October. There IS a light at the end of the tunnel. I am constantly amazed at how much better I feel now, more energy, less joint pain and stiffness, fewer and milder mood swings. I am feeling more and more like a real human being every day.
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januaryice~ I took Arimidex for 3 months with progressively worsening side effects. I took a self-induced "break" 2 weeks prior to seeing my onc without significant change. My third week OFF of Arimidex and I am starting to feel human again! I actually 'jogged' up the stairs for the first time in months..., I went shopping after work without feeling as if I would fall asleep behind the wheel on my way home.., it's small stuff but reassured me that I wasn't crazy!
My onc is switching me to Femara and I will start taking it Dec. 1st (easier for me to remember how long I've been taking it that way). Maybe you want to discuss a change with your onc as well. I truly believe in the power of AIs but I also believe in QOL (quality of life)! If Femara doesn't work then we'll try Aromison(?) if that doesn't work.., I'll cross that bridge when I get to it! But I won't take Tamoxifen.
Good Luck!
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Thankyou NM, youre another one giving us hope that theres light at the end of the tunnell .... for those of us who are still hanging in there.
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Thanks C-squared ... It will be interesting to see what direction my ONC will suggest.
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"It is aggravating her prior arthritic problems and she is having trouble with her arm. Her arm and fingers become numb at times and tingle."
RitajeanI dont want to scare you because your friend certainly could have any of a dozen things, but she may consider lymphedema if it is the arm on the side where she had her surgery and everything else is ruled out.
Good luck to her.
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Hope that light at the end of the tunnel isn't a train heading towards me.
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I have been on arimidex for 4 months and my hair is growing in very thick. Don't know if it will stay this way, but I am keeping my fingers crossed. I have gotten 4 haircuts. I take 5000 mcg of biotin as well as using bosley shampoo/conditioner. I don't know if any of it is helping, or if I am just pre-disposed to having thick hair. I have also been doing hot yoga, which definitely helps with my sore joints.
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I wonder kj, do you think because our grows in phases...normally...i.e. some falls out while others are growing, after chemo, it all is growing at once, therefore it is reasonable to think it would be thicker right after chemo?
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Kam: Maybe...Whatever reason, I'll take what I have....I just love not having to look at my scalp. I will try to post a pic of my hair.
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If you can make yourself move, you will almost certainly feel less creaky.
Greenfrog, talk to your oncologist first, even if he is pretty non-committal, I think it is important to keep him in the loop. Ask him what he would advice his wife or his sister to do.
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I feel for all of you! Pains and aches are no picnic and I am no stranger to them! Unfortunately what is bothering me now even more, is my uncontrollable appetite, memory loss and a general feeling of apathy, and let's NOT forget my constant feeling of living in the NORTH POLE!!! Hello, I could use an hot flash once in a while.....
I felt more alive and positive after I found out my DX than I do now....Now I feel like I want to just crawl under a rock and stay there! I know it has to be the Arimidex because all these problems started recently.
I am so sorry to sound like such a downer, it's just that no one around here understands!
Mena
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See if this works. This is 5 months PFC
http://s1270.beta.photobucket.com/user/kjliberty1/media/IMG_0272.jpg.html
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MENA-So sorry you're feeling so lousy, I wish I had a the answer to make this all go away. Check-in here anytime, you're not a downer, it's actually comforting to know others are going through the same thing as me. I too have all your issues-except I do have hot flashes, followed by freezing spells. I've gained 10 lbs in spite of watching what I eat and exercising, and often find it difficult to go to work or socialize-as you say no one understands...
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KJ -that's one thick head of hair, plus so much longer than mine, though I'm barely 4 months PFC. Were you curly before?
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Mena, I think some of that is the post treatment 'let down' everyone feels, whether they are taking an anti-hormonal or not. When you are in active treatment you are in the 'fight or flight' mode, and your whole self is concentrated on making it through, and you have all those appointments with doctors and friends checking in on you etc. and then it's BOOM, "You're done, take these pills and move along, see you in a couple months", and everyone else feels like you're done too, goes back to life as usual, and there you are, not feeling normal at all. And of course, it doesn't help that your body is trying to adjust the lack of estrogen. It does get better, with time you do find a balance. But it is a hard adjustment, that is for sure. Sending a hug to you!
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Mena, You might ask your doc to check your thyroid. Those can be symptoms of low thyroid. But the end of treatment let-down is real.
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Kam: Once it takes off, it really starts. Seriously. A month ago, it looked like a real short buzz, now it looks like a hair "style". I am one month ahead of you.
Mena: I had the treatment 'letdown" Ruth describes. It goes from months and months and months of treatments to all of the sudden being able to plan one week, one month, etc. ahead. It just doesn't seem possible to be able to start living your life again without a bump in the road.
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I remember being scared to death to book plane tickets for my niece's wedding, which was 6 months away. It does play with your mind.
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We open an window in our bedroom during the winter months when the temperature gets cool/cold at night. When I get a warm flush, I throw aside the covers to cool off. Some time later I'll wake up cold and cover myself up again. It's such a weird sensation when the body heater kicks on! I think the Effexor (generic) helps. It definitely helps my moods.
I'm wondering if I will notice a big difference when I stop taking the A in 2014. By then I'll be 73, an age when creaky joints and aches and pains are usually the norm. When I go for my annual checkup next year with my bc dr., I'll definitely ask whether there's any strong evidence that taking A longer than 2 yrs. is beneficial. My main concern is the health SEs like high cholestero and high bp. My quality of life is good, I'm thankful to say.
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Darn, I got my projected age wrong! I'll be 71. A brain!
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Well at least you didn't have to throw chemo brain into the mix...it's worse than A brain for me!
I will be 72 if I take the Arimidex for the whole 5 years!0 -
Ruthbru, thank you for your comment a few posts ago. It captures how so many of us feel. Once our active treatments are finished, people assume we're 'well,' just as if we 'd just had the flu or an appendectomy. They have no idea of the physical and emotional struggles we still have -- the very real and aggravating side effects of our anti-hormonal drugs, the depressing process of growing in new and very foreign hair, and the fear that hangs over us every day that a recurrence is just around the corner. We want our 'old' lives back, but that won't happen. we're forever changed, and a lot of people just don't get it.
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Beautifully expressed, WaveWhisperer.
I noticed that you're in a test of Metformin for patients without diabetes. Is that related to cancer? I'm borderline diabetic and have been taking Metformin once a day to combat insulin resistance.
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Well said WaveWhisper. Even our hubbys who are the best best best, dont completely get it. It's really only those of us who are in these shoes that really understand. It's great to be able to compare notes with our fellow sufferers.
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The metformin caught my attention and had to google it. Intresting article..I am borderline might ask my OC about this next week.
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Carole, yes I'm in a clinical trial testing Metformin on early-stage cancer patients with no history of diabetes. Apparently doctors found lower recurrence rates in BC patients who already were on Metformin for diabetes, and they want to see if it is also beneficial for women without diabetes. It's a large study, well along. It's a blind study so I don't know if I have the drug or the placebo. I'll take it for 5 years. Some BC women are so convinced of its benefits that they've gotten their docs to put them on it anyway, outside of the study. Some docs will; some won't.
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I tried to find the studies that said 2 years were as good as 5, but couldn't. I only found where they did half tamox & half the time with and AI, and also that the studies are still out as to whether or not it might be better to take these fun AI's for 10 years.
Thanks for your help!
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Five years is my limit.
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