Arimidex - Coping with the SE's
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Heh heh. Not me, patoo -- I'm not on any of the E-Lab teams. If I were, my team would have lost a long time ago!
I think a "virtual" hot fudge sundae would be fine. (I am out of ice cream, so I guess a virtual sundae is all I'll get tonight.) I keep a supply of virtual valium with me all the time, just in case. If I run out, I send out a bulletin to my May '08 chemo buddies (on FB), and they wire me some more. All done electronically, of course.
otter
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I am currently on femara, having normal side effects, but nothing too terrible. My onc asked me at my appt last week if the pharmacy had called me about switching to arimidex. I'm assuming they are asking all willing patients to switch since it is so much cheaper now that the generic has come out. I think it's pretty much a done deal (that's what happens when you have an HMO, I guess) but he did ask me again, right before I left if it was okay to switch. I told him I'd have to think about it--I'm not having any more than the usual side effects (besides feeling old and crickety etc) but I'm afraid to switch--what if it's worse? What do you all think? Should I put up a fight and kick and scream to keep the femara? Or should I choose my battles and let this one go, since they are basically the same?
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weety, In my opinion this is one of your battles. The Femara is the enemy that you already know. If you agree to switch to the anastrozole, hopefully it can be with the stipulation that you can go back to the Femara if you have unwanted side effects from the anastrozole. If this is Kaiser, you might not have that option. Good-luck.
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and Patoo, add a little marshmallow fluff, for energy!
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weety, If you are feeling good on Femera I would fight to stay on it. Why switch? I am sure there will be a generic of femera at some point. There is a good chance the SE wouldnt be any difference but if you dont have to take the chance I wouldnt. We go through enough!
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From what I've read, Femara's patent is set to expire June of this year. As with other drugs, circumstances could extend that date past 2011.
Trish
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Thanks for all your input! I have one more 3-month refill, so maybe I'll push to stay on it at least for that long, and then go from there. Procrastination always works. . . LOL!
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i just went through this two months after starting arimidex. Period with all features of a normal period including cramps and water retention. Im 54 and my hormones have tested postmenopausal.Doc says it happens, sent me to gyno who wanted to poke around for endometrial cancer, but i swear what i had was a good old fashioned five-day period, and went out and got tampax and pads I thought I'd never need again.
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I've been on arimidex now since Aug 4 2010 when I started 36 rounds of radiation for bc stage iib with one node, had a lumpectomy after chemo. I'm so tired! I get up and move around, get some stuff done and then want a nap, that does nothing. Should I just push through, ignore the fatigue? I've lost about 5 lbs, trying to eat better but not much amibition and chemo brain seems to be continuing (I have a master's degree in education ... very frustrating not to be able to think!). I'm 61 and always been active, work 3 days a week, bowl 2 nights a week. Doing the Happiness Project (pretty cool actually). Help! Suggestions?
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Hi kumanakaya
I had lumpectomy and rads before starting Arimidex, no chemo. About one month after I started the A (Jan 2010) I became extremely fatigued, and I did think it was from the A. It is a listed side effect. My onc thought it was the accumulation of everything I had been through. As much as I did blame the A, there are too many variables to say for sure.
Sorry, no magic bullet for you other than to say be good to yourself. If you need to take a nap or go to bed at 8:00 then do. Take help if you can. Eventually it will pass. I've been on the A now for a year, and on occasion, I still become exhausted for no apparent reason. Cancer is stressful. My best to you.
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If you add more exercise to your schedule, you will feel less fatigued.....really, it is true!
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I have to be honest and say that having been a runner for over 30 years, exercising doesn't seem to make any difference in my fatigue level. If I feel tired and go for a run, I will most likely feel more tired when I am done. I don't care however, as there is no way that I will ever give this up unless I have no choice.
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Good for you!
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Wenweb: I too had surgery and rad only, no chemo...Have you had your vit D level checked? I tested with a 31 - which the gp told me is too low... I was feeling pretty sluggish and gp upped my D from 600 to 1600 and I've noticed that I have more energy and not feeling quite as tired...
Also, went to see the onc this week and when she asked what was new, I told her that I am gluten free as of Aug 17, 2010 and there's no more pain in my knees, hips and hands. She couldn't have been more surprised, had never heard of this being an answer to A's side effects of joint pain. She was very happy to hear of my results and said she was "going to look into it"...I gave all the credit to this particular blog started by the lovely Lowrider 54!! God, I love these discussion pages...I'd be miserable today without knowing about gluten free...Not an easy thing as I feel I am a gluten free girl in a gluten diet world...Soooooo worth it thou...
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ritaz: I don't actually know my vit D level other than they were okay. Currently I am taking 1000 daily. I was just thinking last night that with my next blood work, I should ask to have it rechecked. Thanks
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wenweb--ask for a copy of your Vit D test results. The "normal" range is very large, and the recommended range for people with a cancer diagnosis is quite a bit higher that the lab "normal" range. We should have Vit D levels of at least 60, 80 is better, but "normal" starts as low as 35 in some labs.
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NativeMainer: Thanks for the references. Do you know what the name of the Vit D blood test is?
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I would also like to know the name of the vit D test. I can't seem to get anywhere with my Onc. He doesn't think my levels are important. Just wants me to take an over the counter muti vitamin and feels that's just fine.
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Ask about getting your vitamin B-12 levels checked if you are having trouble with neuropathy. My neurologist did a blood test and learned that mine was VERY low. I really think the neuropathy has improved since I started taking it. On the vitamin D, mine was first tested during my annual physical bloodwork 2 years ago. It's becoming the norm.
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You should be able to get the results just by asking for the Vitamin D test results. If you ask for lab or test reports the doc MUST give them to you. It's a good idea to get copies of EVERYTHING. I keep mine in a 3 ring binder.
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I keep copies of all my lab work too. Is vitamin D something they automatically check? And if so, what part of the report is it in and under what abbreviation? Thanks.
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Yes, someone please let us know.
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I just had my routine blood work plus orders for the next time. Here is how it is on my papers:
It is ordered as a separate test, along with CBC, CMP, CA15-3 and a liver profile. The test is called VITAMIN D 125 on the preprinted order sheet my onc uses.
When the report comes back it is listed by the lab as VITAMIN D, 1,25 DIHYDROXY LC/MS/MS. There are three values given: Total, Vitamin D3 and Vitamin D2.
She only talks about the Total Value which should fall between 18-72 pg/mL.
My lab is Quest Diagnostics Inc.
Pam
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Thanks Pam. I will have to look at my blood work the next time I see him. I also need to see my family Dr. to get all my other meds, so may have him run that test.
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My onc does not check D levels....he is not convinced about the need for the higher doses....I could ask for my D level to be checked at my next visit....I've been taking 2000iu daily....
I tried Niacin for my Reynauds and after 5 days I was a mess....nope...can't take it.....first just a little flushing, next day nothing, day 3 bright red all over and then 5 itchy, itchy, itchy.....so will just deal with my Reynauds....
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Kira and Karen, do ask your family doctor. My onc wasn't convinced either, but my GP said he would order it next time for me (coming up in Feb). It will be interesting to see where my levels are. I've been taking 1000 mg a day for several months now.
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shelley I will be asking my family Dr. But I must say I really have very little faith in him. For Gods sakes he looked at my mammagram info that clearly said a 57 year old women, and thought it was my 30 year old daughter that had BC
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Oh, sorry, Kira. I have mixed feelings about my GP as well, for instance, he didn't touch me at all at my first post-cancer visit. No exam, nothing. Just asked me how I was doing. He DID look at my labs and when I asked for his opinion on D3 he said he thought there might be something to it and would order it next time. He is a young guy (30's) so maybe he is a little more malleable. I just need him to be a little more thorough. I have decided to talk to him about it this next visit. Maybe I just need to give him permission so he knows it's ok to check me out.
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I notice my blood work had a test for calcium levels, would that be sort of the same thing?
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Calcium is part of the CMP, Comprehensive metabolic panel.
Vitamin D is a separate, individual test.
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