Arimidex - Coping with the SE's
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Hi Claire...as for our grades being different, I guessed at mine cause the MO never told me a lot of things...gave sarcastic answers when I asked. Mostly what I know for sure I learned from the RO and hematologist. All the other stats are right...just not sure about the grade.
I also did DD/AC (3 cause I couldn't hack the 4th) and 12 taxols. Had 16 rads as well. So far so good on Arimidex but long time to go there. I am amazed at your activity, I try to make myself MOVE let alone strenuous exercise...My hat's off to you...my hair too actually altho that is coming along.
I wish you continued success.
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schatzi14 - Hi, all of your docs should have copies of your surgical pathology report. Please ask one of them to give you a copy; they're usually happy to do that. That should answer your questions about what grade your tumor was.
I know you're well on your way with treatment, but is it possible to switch to a new oncologist? A doctor who is sarcastic and who is not willing to share and explain very basic information like your pathology report....well, it just doesn't sound like the two of you are clicking. Your MO should be willing to answer every darn question you have, no matter how basic or detailed. Sorry, just my two cents' worth...
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TinaT...oh I agree...I am all done treatments and don't see my MO till October. The good thing is, my GP has all my reports so he will give me copies or answer any questions I have regarding my Dx. I pretty well have all the other questions answered.
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Ruthbru - Thanks...I will! I plan to climb the Sydney Harbor Bridge (I guess that should be "Harbour") and snorkle the Great Barrier Reef and also in Fiji, among other things. I'll be a card-carrying senior citizen (Medicare card, that is) next month and I'm determined to laugh at the idea of being "senior"!
Claire - I'm already a great exerciser. I'm a HUGE walker and I also exercise with weights and resistance bands. And I do a lot of swimming (once things warm up!). Thanks for the advice...I'll draw on that if I'm ever tempted to slack off some day! By the way, you mentioned you are into cycling events. My sister and brother-in-law are cycling officials. They travel all over the area, and sometimes to other parts of the country, to officiate. They've been doing it for years.
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Snoopsmom.....it's the "retirees" in one of my cycling clubs who are the fit ones. They have the time to train! The rest of us are working.
The events I do are distance rides. Just signed up for a group tour for next weekend. We shall see what the $55 per night hotel is like. I just couldn't see spending twice as much, and the place the rest of the group is staying is booked up.
I need to get back and write a consulting proposal for a company I interviewed with last Friday. They want to add me to their contract consulting staff and need help figuring out exactly where.
Congrats on a great fun life ahead. Trip sounds beyond fab. - Claire
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Snoopsmom, I just started Arimidex 10 days ago, and I, too, am wondering when the side effects will show up. My MO told me that the small-bone pain is usually worst in patients with high cholesterol, which I have. I wake up every day, testing my wrists. So far, so good.
I'm planning a celebratory trip to Barcelona in September, so I also want to be feeling great.
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Hi, WaveWhisperer....Spain is on my Bucket List. Have a great time! That info about bone pain and high cholesterol is very interesting...who would have thought there would be a link like that. My cholesterol is sometimes a little high, but not much. We'll see what develops. I plan to have a great time no matter what happens....I'll just gut through it all!0
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Hi snoopsmom,
My SE's from AI have been shown up not until two months later, but then very strong. Some other ladies were reported the same!
Best
Usha
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Side effects from the Aromasin are getting worse, just about the same as Arimidex, except for the depression/anxiety thank God that is better.
Ugh... I just hope it gets better or less I should say with time. Headaches every morning, nausea, bones are killing me, and muscle fatigue. I am trying to get in exercise to keep myself moving, its just hard when you feel beat.
I had a fever and muscle aches over the weekend (nice way to spend Mother's Day) and couldn't tell, was it a side effect, was it because I was gardeining on Sat a.m., or was it a virus??? Always wondering whats up, I am better today except for the usual s.e.'s so I assume it was a 24hr virus, it seems I catch EVERYTHING, and I use to never be sick for years!
ok, done complaining. for today lol Ginger M.0 -
I do not have high cholesterol and still had bone pain. I am anxious to see what my blood tests will show in a couple weeks though. If my numbers are bad, it will be because of Arimidex.
Michelle0 -
I've been on Arimidex since 9/09, so it will be 3 yrs. in Sept. I had some issues with my wrists but did carpal tunnel exercises and wore a brace on the right wrist for a while and the symptoms went away.
I don't have a lot of joint and muscle pain. I sleep well when I take a benedryl. But my cholesterol has become elevated, making it necessary to take a statin. And I'm having problems regulating my bp. Also have gained 12 to l5 lbs which I'm finding it impossible to lose. I attribute all these problems to Arimidex.
Prior to bc, I took fish oil caplets and glucosamine/chondroitin and I exercised regularly. I still take those supplements plus D-3 and magnesium. My 2010 dexa scan was very good. I'm about to have another dexa scan. It will be interesting to see if I'm holding my own with the same lifestyle as prior to bc.
Good luck to everybody in fending off the C monster and still maintaining some quality of life.
I'm tempted to go off the arimidex and see if the cholesterol and bp are affected for the better. But what's the use? I still have 2 yrs and some months to go before my 5 yrs. are up.
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Dang....just found out that my total cholesterol jumped 35 points into the "moderately high" range. Last cholesterol panel was done 1 year before BC and all was very good at that time. My diet is the same (very good), still taking the same dosage of Niacin, I'm exercising religiously every day (wasn't doing that before BC), and I've lost weight (as a result of the exercise and/or Arimidex). Will have to find out what all the ratios are, but called the lab and was told that I have to contact my doc for the rest of the results.
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Tina - bummer. AND a known SE of AI's - amazing to learn how important good ole estrogen is in keeping other systems in our bodies in good health. I'd suggest checking with your doc & see how high you can UP the niacin. AND, be careful if you also have blood glucose levels, the niacin can really kick that up in some women.
Exra virgin olive oil, organic raw almonds, Nordic Natural Liquid Fish Oil, is top of my list, after the Niacin.
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Well its now 3 weeks since I went back on the AI (this time Aromasin) and the bone/muscle pains in my hips down my legs are KILLING me!!! no difference there than when I was on the Arimidex. I just don't know what more to do, I'm living on ibuprofen, trying to exercise the best I can. I am getting ready for a 6 hr drive tomorrow to NH for my daughter in laws graduation (UNH) and I hope I can handle the pain sitting that long in a car
Maybe I will try the Claritin thing it did work for the nulesta bone pains...
Ginger M.
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Ginger.. I was just going to suggest Claritin too...if it works for Neulasta so well, what can it hurt?
I am just beginning to get the odd bone pain after 3 months on Arimidex and was thinking if it continued, I would take Claritin again. I still have half a package from chemo days!
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Does anyone taking Thryoid medication take it at night? Do you take it with other medications?
I've been taking in first thing in the morning, and then waiting about an hour before eating. Today, my acupuncturist said she'd been doing a lot of reading about how GOOD it is, to eat something FIRST thing in the morning, within 20 minutes of waking up. Preferably protein, to "kick start" metabolism. Several of the people she treats have tired this and found they are losing weight more easily doing this. Not a huge amount, but gradually, so I am definitely planning to try it.
I take my Arimidex, and Claritin at night. Wondering if anyone else takes their thyroid medication at the same time they take other medications? Of course, I could just "swtich" and take my Arimidex, Claritan in the morning.
Anyhow, while I was trying to figure this out, Look what I found:
http://thyroid.about.com/od/thyroiddrugstreatments/a/bedtime.htm
Will report if I notice any difference.
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Hi all and esepcially the new comers ( shiatzi, michelle, tina, who am I missing?) and Ginger M!
when I was about 3 months in, my side effects peaked (carpel tunnel in both wrists, feet like swollen brickets, joint pain, headaches, blues, insomnia - are we having fun yet?). I had a trip to Disney planned with my 2 kids and was determined to have fun.
The key for me was to take a pain pill around 3pm (that is when the pain threshold passed into the worn-out cranky stage and something to sleep - usualy a diazapam, which is also an anti-anxiety pill. I had a great time. You might want to pack something just in case.....
Ginger M, everytime I go for a ride over 3 hours (not all that often), I take a pain pill before I go. It really makes it easier on me (and everyone else).
I am now a year and a half in. I am taking a 3 week break and plan to try Aromasin next in the hope that I have less joint pain, but we will see...Still, one way or the other, I am going to make it to 5 years. I also have elevated cholesterol, but am working diet first and then will see if I need statin, etc.
Good luck to you all.Claire, you continue to inspire!
Best, Beau
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SunflowersMa, I take synthroid. Have for years. I used to take it at bedtime. I was having insomnia issues and found that synthroid can be a factor. Now I take it when I get up to use the bathroom around four or five and go back to bed. By the time I get up usually eight or nine it has adsorbed and doesn't cause any issues with other meds, food or coffee.
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sunflowers & ptdreamers...I have been taking synthroid for 35 years. I have always taken it first thing in the morning. That was waaaaaaaay before I HAD any other meds, they came gradually as I fell apart. I take them all first thing, then I take the Arimidex with my coffee before I eat because it says to take with liquid. So far (fingers crossed) I have had no SEs but I am just going into my 4th month. If I start to get bone or joint pain, I will take a Claritin as well.
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Sunflowers,
I take syntheroid and cytomel for thyroid and take it in the morning WITH breakfast. Have done for 30 years and the docs all say it doesn't have to be on empty stomach just always do the same thing. When I switched my arimidex to the morning because it was causing sleep issues if I took it at night, I checked with the doctor and two pharmacies. They all said that there is no known drug interaction between arimidex and syntheroid and cytomel. So...I've been taking all 3 together for about 3 months now and everything seems just fine. Due for yearly thyroid blood test in 2 months.0 -
Well, this is interesting....I got an email back from my internist. She reminded me that the total cholesterol IS an actual total of LDL, VLDL and HDL. The only number that is flagged is my total cholesterol. All the components and all the ratios are in great range. In fact, my HDL (good cholesterol) has increased since the lipid panel was last done two years ago and is what caused the total cholesterol to bump up to 220. So, it's good news rather than bad news....yay! I was expecting to hear that we'll have to recheck, but instead I got a "keep up the good work". Whew!
High cholesterol runs in the family so I've been vigilant about doing everything possible to stay off meds.
SunflowersMA - I always try to eat some protein as soon as I wake up...brain food! I usually keep hard-boiled eggs on hand and eat one or two each day. 90% of the time I only eat the whites.
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A nurse friend who also takes synthroid told me it's important to take it by itself and wait 30 minutes before eating or drinking. She takes her synthroid when she gets up during the early morning hours to go to the bathroom.
I take my arimidex at night. When I first started taking it, I took it in the morning and felt really miserable. I decided it was better to sleep through the misery. I also take a benedryl as a sleep aid and sleep really well.
As I stated recently in a post, my blood pressure and cholesterol have gone up during the two years and a few months that I've been on arimidex. Also I'm finding it impossible to lose weight.
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Has anyone developed anemia while on arimidex? I had a check up with my MO this morning and he said I was anemic. We were both surprised because my iron levels have always been unusually high. He wants to do another blood test in two weeks. I have been taking arimidex for almost eight months.
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WOW - you are all the BEST! I think what I'm going to do - is take the generic synthryoid at night, with the Arimidex.
I'd do what Carole's nurse friend does, BUT, I don't always get up in the night to pee. I have this "inner sense" having the thryroid med at night, might, just MIGHT, help me start the day faster - as that article I linked to says. I eat my last meal very early, and will have an empty stomach by the time I go to sleep. Will do more research about combining it with other meds, and let you know what I find.
Elizabeth: NOTHING would surprise me now, after almost 5 years on the A Team - if ANY system in our bodies changed while taking this medication. Honestly, if I weren't so, well, ANGRY, confused, GRATEFUL, confused, about bc & all the treatment "options" - I no longer expect any ONE of my doctors to keep it all balanced. Oncologists, PCP, now adding Endocrinologist to that list. Anemia? Haven't heard of that one - YET - wonder if it's age related? Diet? Left over from chemotherapy? And here's my NEW favorite -
A MISTAKE IN THE LAB TESTS. Really - I'm the one who had a Vitamin D blood test of 26, very concerned is an understatement as I was taking 5,000ius a day, and 7 days later a retest was 78. FINALLY my oncologists ran Full Panel - Vitamin D was 48. The CORRECT test. No longer trust local lab work. Will have oncologists testing every 6 months.
Cholesterol - bonkers. Just off the walls. Blood glucose levels - through the roof, taking Niacin, which helped lower the cholesterol. Learning in the news yesterday, that maybe, JUST MAYBE, having a high HDL isn't as good a thing as it was supposed to be?
Weight. A joke. I now describe myself as a possible "stand in" for the Pillsbury Dough Boy.
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Anemia is a side effect of arimidex.
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Sunflowers, What an ordeal for you. Thank you for sharing. These AI's are really something, aren't they?
NativeMaine, Thanks for confirming what I thought.
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Hi everyone! It's been a while. I have now been off Arimidex since 3/30 and my hair has just about stopped coming out in handfuls. It is now down to strands when I brush or wash it. I had to cut my long hair off into short layers it was so thin and frizzy. I saw my med onc today and he wasn't upset I stopped the med. He wants recto wait till June 15 and then go back on Nolvadex at 1/2 the usual dose (10mg). Then call him and let him know how it is doing... Hair coming out side effects, etc. Keeping my fingers crossed for good results.
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Thanks Native. I have been borderline anemic for over a year. I didn't realize it was a side effect.
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This has been interesting info. I too have thyroid issues and just recently switched to the generic of synthroid. I take it in the morning and wait an hour before eating. During the work week, waiting is not an issue as I don't eat until I get to work. I have been a high norm with my cholesterol for some time prior to the bc. However, my last visit with my family practioner, she indicated that with taking the Arimedix, it would be working against me with trying to get my cholesterol down. I had been working on lowering my cholersterol and my level was down 12 points from my last test.... Someone posted that they feel old before their time..... that is exactly what my doctor told me at my last visit when I mentioned all my se's. So, yes ladies.... it's not in our heads, we are feeling old before our time....
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Not everyone has horrible SEs (saying this for the newbies). I feel great and am probably more healthy than I ever was, because now I really work at it.
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