Arimidex
Comments
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Carolehalston and Ktn: I just read your blogs. Thanks for info. Hoping it is carpal tunnel and that can be taken care of.
Day no. 6 off A. Still counting.
Hugs, P.S. Wow, I almost miss my Arimidex. I feel like something is missing out of my life.
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Has anybody out there had elevated ALP ( a liver enzyme ) while taking Arimidex?
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My ALP has been normal, but my ALT (another liver enzyme) has been creeping up consistently, although still within normal limits. I'm on Herceptin and just started Femara, but I'm assuming all AI's (and Herceptin as well) are probably hard on the liver. Anyone else have either enzyme elevated? Knowledge is power, but sometimes I wish I didn't pay attention to (or even know about) all these small things--my life would be much less stressful!!!
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Whoops, just saw this was the arimidex forum. My onc was originally leaning toward arimidex and switched her mind to femara at the last minute. But I'm still guessing that both are similar in how they act on the liver.
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no liver problems; I think it is the chemo that really wacks the blood work off for awhile (like sometimes forever; I still have some numbers that are a little off, which the onc says are chemo related).
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ronqt1
I am off A for one month. I see onc on 7/18 and will discuss it then. Still feeling good, My fingers aren't numb. My joint pain is better. But I haven't been running either.
I had breast reconstruction yesterday -- lipo to fill a breast that lost volume due to a staph infection back in September when I first had my mastectomy. My plastic surgeon is also fixing up a skin graft that was done so that I could start chemo last November. He also removed a lump from the other breast and sent it to pathology. The plastic surgeon called the oncological surgeon about the lump and he said not to worry it was too soon for it to be cancer (its been 9 months...I hope he's right!) I'm sore all over but my joints feel good.
Is there a difference between Vit D and Vit D3? My onc said to take 800 mg a day but my orthopedic doctor said to take 2000 for bone health
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My PCP did blood tests recently but, why am I surprised, did nothing special since it was just my annual checkup. My cholesterol is too high but the rest of the report only said "normal" for everything - Vit D level = normal - ????? what does that mean - good grief!!!!! Would it really have hurt to put some numbers in the report. Kidney and Liver are also "normal". I know it could be worse if there were 'abnormal' there but this report is absolutely worthless. I think I'm going to make up little cards to leave with any doctor to spell out exactly what I want to see because just telling them gets lost somewhere once you leave the office.
Are we having fun yet?
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Good morning all.
I believe I have to start reading Vitamins for Dummies 101. I know absolutely nothing about vitamins. I always ate well and exercised before bc.
I take what onc told me to do. Oscal Calcium with Vitamin D 500 mg. 2 x a day. Centrum 3 times a week, 1 a day containing 500 mg. of Vit D.
Brendaskids, please read what Sunflowers graciously mentioned. I am too in the learning process. Like Patoo, nothing about Vitamin D was never mentioned in my blood work.
Brendaskids: hope your reconstruction went well and much luck with your "lump" results.
I am in process of reconstruction, put off nipple and fat grafting which was supposed to be completed this July. I see PS in late August and will schedule a date then. I am still getting used to new girls. Augmentation one is doing better than reconstructed one. Reconstructed one is having its own party constantly doing its own thing in me. It has a mind of its own. I am still getting used to it as part of my body. I don't understand how bcfree girls who put the implants in. Will never understand it. I also never had to do chemo/and or rads so I do count my blessings for that and my heart bleeds for those who went through it.
I have been wearing my brace for wrist problems, but again time will tell.
Thank you again everyone for all input.
Have a great day. Hugs.
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Susie~ My liver enzymes were up a lot after chemo.. Did you have chemo? Mine had to level out. That being said....I do think it is one of the SE's of the "A" Remember most drugs we take have to go through the liver..and some are harder on the liver than others. How elevated is yours? They like it to be under 30. Mine was in the 100's at one time now down between 17 and 38 (this was the last two tests) I will have more in July.
Have a great day!
Balsie
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Susie~ My liver enzymes were up a lot after chemo.. Did you have chemo? Mine had to level out. That being said....I do think it is one of the SE's of the "A" Remember most drugs we take have to go through the liver..and some are harder on the liver than others. How elevated is yours? They like it to be under 30. Mine was in the 100's at one time now down between 17 and 38 (this was the last two tests) I will have more in July.
Have a great day!
Balsie
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Wow!! I have been on Arimidex only 3 weeks and that is how I feel right now! I am so tired all the time!! I work full time and I have a 6 year old! When I get off of work I can hardly move! I am wiped out all the time!! I hurt all over and don't sleep hardly at all. I want to stop it all together!!! I am only 40 years old!!
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I always ask for copies of my blood work when I have an appointment. When I have a mammo or DEXA or any other test, after I get the 'everything is OK" letter from the doctor, I then go to the hospital and pay (like $5.00) to get a copy of what the report ACTUALLY says.
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Sunflowers - Thanks, I absolutely agree. Was thinking about that on my way to work this morning and will contact them, in writing, tonight. I also like my PCP and think that the office procedures are just to send out a form letter with normal or abnormal checked unless someone asks for more. Actually that's really silly to do it that way but I guess until you have a critical care issue most people don't worry about it.
Ruth, I get copies from my med onc but I asked my PCP to send me the results and I guess that doesn't translate over to an actual copy of the actual report. Have never thought about getting a copy of the mammo report as I thought that was only films that someone read and told my onc it was all clear. Actually I also get a letter from the radiology group that does the mammo but you're saying there would be a written report from the doc that reads the films? < sigh >
Wendy66 - hang in there. For many of us the SE's get better (manageable) or go away altogether. I think we found that we need to supplement in many cases so be certain you are taking a multi-vitamin; it seems Vit D3 may have positive outcomes for joint issues; melatonin perhaps for sleep?; exercise. You will have to push to make yourself do the exercise but a 6-year old should give you some and may even be willing to get out there for daily walks with Mom or running around throwing a ball or frisbee in the park. But really, hang in there and see if it gets better. You can always talk to your onc later if you really can't handle it but you want to know that you have thrown everything possible at this disease.
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The doctors should be getting reports that show the numbers, so there's no reason you shouldn't be able to get it as well... or the lab, at the least, has this information and can send it on to the dr and s/he can give it to you.
My reports show my numbers, and the normally-accepted ranges for each item, although I've learned that some of those normally-accepted ranges aren't necessarily the current recommended ranges (for TSH, for example).
I love doctors who understand and appreciate the patient's desire and need for information. I have a really difficult time (and don't use) doctors who just expect one to take what they say and not have any real questions. It's MY body and I know it best. I respect dr's and their education but in the end -- they only know what they know -- which isn't everything.
My liver enzymes have been normal but yes, I expect that chemo has taken a toll anyway -- one reason I rarely drink alcohol any more, and a reason to keep my use of acitimenophen to a minimum -- I figure it's been beat up enough (along with the rest of my body!). But, yes, changes in liver function blood tests are a possible SE, so it's good to stay on top of that.
Someone asked about lower back pain and A -- and yes, I've had that, too -- more when I first started taking it, not much lately at all, but it is another listed SE. I've been avoiding reading the lists of SE's so that I don't start having more of them (silly, I know, but who says denial is a bad thing!) but the list for A is looong! Fortunately, even the SE's that I will acknowledge
haven't been too bad, and have been better after making some modifications to my diet/supplements (more Vit. D3, lots more veggies and fruits, stuff like that). Exercise seems to help, too, although I'm not sure I'm exercising enough yet to make a big difference.Now if I could just get Balsie and her juicer to come visit for awhile...
PS, Patoo, yes, the radiologist sends a written report to the dr. that ordered the test, so you can get that too. It's how I found out that the spot that they were monitoring on my lung showed up in not two previous CT scans, but back a whole YEAR... however, the spot is gone now, so that's the good news on that. But I was a little ticked that they didn't mention it sooner.
Wendy, if you've only been on A for 3 weeks, you're probably recently done with treatment, right? If so, that alone is cause for you to be tired, but yes, give the A time, your body may adjust well to it. The majority of women have managable SE's but it can take some time for a) your body to adjust (A seems slower than many meds in this regard) and b) for you to figure out what will help you manage any longer-term SE's you may have.
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Jo, I'm not sure, but I think changes in breast after radiation (and a lumpectomy) are very normal. At least that's what I was told. And that's certainly my experience in my self-exams: my left breast now feels a fair bit different that my right, and I've had to figure out the new "normal" for it, but it wasn't hard.
My understanding is that we can get copies of any medical reports, our personal files, etc., -- I believe it's the law -- ultimately, those are OUR records and reports. I know when I moved to the PNW I got my complete medical file from my PCP and it was loaded with reports, etc. Whether we get charged is probably something that varies a lot but so far I haven't had to pay for anything.
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Yes, you should be able to get anything you want, its your body; for instance I get the "pleased to inform you" mammo letter from my doctor, but the one I pay for at the hospital (a small processing few,and you have to show an ID etc. which is what they should do!) is what the radiologist actually sends to the doctor and goes into detail as to what he/she saw. I trust my doctors but still think it's good to have your own records. (I went back and got ultra sound, surgery records, everything......kind of creepy reading!)
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Once in a while I go back and read my records and am amazed that I'm still alive! So many things going so wrong all at the same time...sheesh.
As part of the clinical trial I'm in, the St. Louis docs requested all of the slides and tissue from the original surgery and I was shocked to see that they'd found SIX tumors in my right breast, rather than the three that my doctors found. Talk about creepy!
E, Who Believes Arimidex is Beelzebub's Brew
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I never read mine anymore except to compare new lab work with old numbers etc. I actually believe that the Beelzebub's Brew is the cancer itself; and that chemo, rads, anti-hormonals are our weapons of mass destruction used to fight the devil himself! EEK, now I am scaring myself
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Wendy- hopefully things will even out for you, and you should for sure give it a little bit, but you do have options other than suffering or not having hormone treatment- many of the SEs of A are because of the estrogen being gone and are the same with any AI but some are not. If you are having a really hard time it can possibly be improved by switching to one of the others, like aromasin, which are just as effective against the cancer. So talk to your doc!0
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I must be the only one with all recent medical records online including bloodwork. I can even graph things like my Hgb readings, and did during chemo to watch for the trends and ask any questions. I looked at everything compared to the pre-chemo baseline, and certainly will again when I have bloodwork done at the end of next week. (Have a three month checkpoint coming up.)
When I have my physical in September, I will again compare everything to my baseline just prior to surgery. I am curious about my liver function as I was one of the 20% who got elevated readings during Taxol. Not enough to be alarmed, but not normal either.
I am not expecting anything to be amiss with Arimidex. The big two for me were libido and bone density. The first is just fine, and the second is the one I need to watch right now. So making sure I continue to do weight bearing exercise and all that good stuff.
The other one I am wondering about is cholesterol. I had overall over 200, but also extremely high HDL of 88 going in. So that will be interesting too. As for the rest of the healing, expect to be about 95% there in a month. I don't think I will be completely healed for at least another year.
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'They' say to take the amount of time you were in active treatment, and plan that it will take that long again to feel 'normal', I'd say to double that amount of time; and that's if you are working on it.
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I didn't have chemo. Stage 1, grade 1, just 6 months ago. Low oncotype score so onco said no chemo, just arimidex. My ALP was 156, then only came down 3 points in a month to 153. That's still way to high. I had my final retest 2 days ago, but havn't got the results yet. I called the onco's nurse twice today, got her voice mail both times. I left messages both times and asked that she return my call, she didn't. I couldn't go by the office today as I was out of town for a meeting. It's really frustrating because you're so scared and they seem almost complacent. The onco had told me that if this one came back elevated we would have to do a abdominal CT and bone scan to check for mets. How can they not call you back? Don't they understand this isn't a cold, it's cancer. I read on the pamphlet that comes with arimidex that up to 10% of women who take arimidex have elevated ALP. I'm really hoping that's all it is, but it's sounding like nobody has had that happen. Surely I didn't go from stage 1 to stage 4 in 6 months. I'm really starting to freak out a little. Thanks for listening.
Susie
Susie
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HUGS Susie. They are really not sensitive to people waiting. I do understand that they have lots of other patients and calling with results would be time consuming but when a person is waiting for crucial information or waiting to have their fears alleviated then they need to go that extra step. If they still haven't called you I would call them again and leave a message that spells it out like "how can you not call me back - don't you know I'm dying here!!! This is so insensitive." Maybe they will get a clue, for you and others.
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or go sit on their doorstep!!!!
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Just wanted to say:
1. I am stage IV
2. No treatments other than Zoladex and Arimidex.
3. Lots of pain in joints....esp the shoulders.
4. Arimidex is a life saver for me! Couple of my mets are the same size as 4 months ago. All other mets are SMALLER! I owe it all to Arimidex. And God.
Side effects or not, it's better than cancer playing pac man with my body.....hugs to all
Lisa
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Amen!
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Glad it's working for you, Lisa! That gives me hope.
E
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Continued and increasing success with the "A" Lisa, all my best wishes.
I'd like to thank you all for your conversations about Vit D. With my post-chemo lab work I asked if they could check the D level...turned out to be 16 and a prescription for 50,000 u/week. Sunflowers, I know you said it should be in the 50 range. Thanks again.
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Just a side note to all of you ladies re: getting records.
I'm a nurse at a primary care Dr's office. Lets say you walk in one day and say, "I need a copy of my records". They will more than likely charge you about 20 bucks and tell you it will take up 72 hours.
On the other hand.... if you have an appt with your Dr after labs or a scan or anything like that, and you ask the Dr for a copy while you are in the room with him, he will have someone make you a copy, and hand it to you on the spot. Won't cost a dime. (dang....talk about a run on sentence).
Also, lets say you have a ____ scan or MRI in the morning. While you are registering, let them know that you will need that on disc before you leave. They may or may not ask why. If they do, just tell em you are needing it to take to your Dr. (please make sure you actually DO take it to your next visit.... some Dr's will look at it... other's won't. No matter, it is still yours & you haven't lied to anyone). Once again, if done in this fashion, it shouldn't cost you anything. If the need ever arises, ta-da! You have it. OH! And it takes them a grand total of about 1 minute to do it.
Hope this helps!
Super sunny day here in TN. Get outside (if you can) and get at least 30 minutes of God's perfect vit D!
Lisa
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I am at the 2 month mark on my A. I really have stiff knees, my lower back sort of aches all the time now. I feel like I'm ready for the nursing home. I still keep very active with my horses and yardwork, but the mornings or just when I sit awhile make it tough to get up! After riding horse my knees about kill me now.
I have a onc appt. in 2 weeks, will be glad to see how things are going.
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