Arimidex - Coping with the SE's
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I'm on lupron, can't get a surgeon to agree to do an ooph since I'm old enough to go into natural menopause at any time. I'd much rather have the ooph. Getting the huge needle leaving a huge lump of medicine in my butt, one that hurts for days to weeks and having to do it every 4 months for 5 years is NOT my idea of an "easy" treatment.
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3bells: I'm a little concerned about your doc, given all that you are going through. You said she's a good doc but doesn't listen to what her patient wants. To me, that automatically makes her not a good doc. She also seems to be out-of-date in her knowledge, and breast cancer and treatments are changing rapidly, weekly almost, and you need a doc to be absolutely on top of it and also informed about the new clinical trials and treatments in progress. Lastly, you mentioned that she's not informed about nutrition, and nutrition is essential to preventing cancer (and other illness) as well as managing breast cancer and SEs and treatments.
I agree with gingerbrew, please look for a second opinion with another doctor (one who is not associated with your current doc, but a true second opinion). You are worth it and it sounds like you are suffering! Also make sure you ask her about anything you aren't sure of, such as Vitamin D levels. A really good doctor is happy to answer your questions, even if you ask multiple times. I work at a hospital and one of our oncologists, when first meeting a new patient, always says "This is like a mystery, and I am the detective and you as the patient have all the clues. But what I need is for you to tell me everything -- every itch and twinge and tingle, no matter how small -- because it might be a very big clue for me in helping you." And she gives out her cell phone number and encourages families to contact her any time with any question. And they do.
A normal Vitamin D level is usually around 40. When I was dxed I was at 7 (the second lowest they'd seen at my cancer center). It's considered one of the major markers of cancer now. I take a daily megadose of Vitamin D but it has been starting to slip, so we're keeping an eye on it and will increase the level again if needed.
Hang in there!
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Meg my D was an 8 and the Dr said, "well it's not 0" I took the 50,000 mg once a week for I think 6 weeks and now take 5,000 mg a day. I grew up in N IL, never liked suntanning and apparently didn't eat the right htings either. Now I am in Seattle and the hope of enough D naturally is gone for sure.
My understanding was that 40 was the minimum "normal" for D. I need to get it checked again in case it is slipping back down.
I am now maybe a month into Aromasin, (generic) and have the daily head ache and a good back ache but not all the other SE's I had on Arimidex. Maybe I am not going to get the worst this time. I am hoping.
Ask for a print out of your lab results every time. Most of us do I think. It is not impolite or being out of line in any way. It is your right and expected nowdays.
GInger
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I have been on Arimidex for 14 Months now and my SE are getting much better. Some but not near as bad as they were.
Nancy
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sebnm, thanks so much for your concern. I'm in the process of setting up an appointment at the Block Center. It's hard to travel even the 3 and a half hours. We need to time it so we don't go through the Chicago area during rush hour!
I stopped talking the Armidex today. Sure hope the leg swelling goes down before we travel. It takes about two weeks or so to get an appointment.
I wish I could remember to ask for the lab print out. But I will be getting copies of all my records for the Block Center and be able to keep them in my file.
Will let you all know how it goes!
Peggy
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Hi all,
3bells - good luck with your appointment! Be sure to have all your questions written down so you don't forget to ask what you really want to know. I also hope that you feel much better off the arimidex because then you will know that the drug was giving you those side effects.
I am just letting the rest of you know that after 2 weeks of taking 1 claratin a day (I switched from taking benedryl at night because while it helped me sleep, it made my sleep restless and I woke up groggy), along with my usual regimen (1 NSAID, vit D, calcium, b6, omega 3, 1 diazapam at night), I feel much less stiff. My hips and knees are noticeably less achy.My tendonitis in my wrist is also improving. I am going to keep it up.
How about the rest of you out there who are trying it? Are you noticing any improvement?
Best, Beau
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beau: So glad the Claritin is working for you too! This is very exciting. I'm glad my little discovery is working out for other women. And grateful to have this list where we can share ideas and help each other out. I had a long hike yesterday (8 miles) and had been out of glucosamine for a few days (but am religious about the claritin now), and felt achey last night -- but it certainly could have been as much due to the hike and not just the glucosamine. I made sure to stretch, and took a hot bath with dead sea salts (which helps get rid of the lactic acid that builds up in muscles after activity), and restocked on glucosamine. Today I feel super, and just got back from another hike. So far, achiness is the only noticeable SE I've had, but not since I discovered taking Claritin to alleviate bone and joint aches. I was miserable while taking tamoxifen for 1.5 years, but feel the best I've felt in years.
3bells: It is a great idea to write your questions down in advance. My care team insists I get a copy of all of my printouts, paperwork, lab results at all time, and at every appointment they always go through everything. It started during chemo, because they wanted me to have all available info at hand in case I ever needed to call the after-hours nursing staff. Their stance is that I need to fully understand all aspects of my treatment in order for them to be a true partner in my treatment and care. I hope the Block Center gives you a better reception and more support than you've been getting! It will be well worth the trip, esp. if it can alleviate any of the SEs you are experiencing. I see you're in Michigan; have you contacted Karmanos Cancer Center?
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Beau, I don't even know what I want to know anymore! I'm glad claritin is helping you. I have arthritis and Fibro and, other than the first few days, didn't notice any increase in pain with the armidex. I did notice an increase in depression and irritability, but I have had problems for years with that and am used to dealing with it.
My daughter found out that neurontin can also cause swelling. I'm on it for nerve pain from the mastectomy, but forgot two out of four times yesterday and today. I think the nerve pain is letting up. I won't know which caused it if I stop both. Guess I'll just let nature take it's course. After I see an oncologist I can trust, I will try what they recommend.
I wish the docs around here would give out the test results. I keep forgetting to ask. I will need to round them all up to take or send to the Block Center, so that's a good thing.
I filled out their questionaire today. They are definitely whole person oriented! It's in table form and I filled it out on my computer. I printed it out (all 20 pages) and may have to go back and do some tedious editing and font changing or it will be hard to read.
sebm, I'm glad you are doing so well. I haven't heard of the Karmanos Cancer Center. My daughter passed the Block Center book on to me because she heard so much good about the program. I guess many use the program without going to the center. But the individual help, blood work they don't do in regular centers, etc,sounds good right now. And I want to find a good place just in case I have to deal with a recurrence.
It took hours to do that questionaire. Time to do something enjoyable! Praying for the best for all of you!
Peggy
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beau, I'm curious how much, or what "dose" of omega3 you take.
Also, would you mind saying how much vitamin d and calcium you take?
Currently I take vit D and calcium, but also want to add omega 3 to my list.
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My nails are a total disaster. They have vertical ridges which causes them to split at the top and tear off. Yikes...any ideas on how to strengthen them?
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twoputter, You might try taking Biotin 1000mcg , one tablet per day. It is not immediate. The skin doctor said it would take up to a year to note the difference. Also another poster mentioned she rubs coconut oil on her nails. Haven't tried it so don't know if that works. Good luck.
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Has anyone tried topical "Penetrex" for joint pain? I just ordered some from Amazon to give it a try.
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I've been on Arimidex for 6 months now and haven't noticed any effect on my fingernails (yet!) but have noticed some hot flashes, night sweats, occasional fatigue, and recently, a few more aches and pains. Also, I thought I was pretty much a dried up prune before the Arimidex, but it's done a number on my hair. Besides thinning out, it looks weird and is uber-dry; in fact, it enters a room about 5 minutes before I do because it's so oddly static-y now. I've also found myself ravenously hungry the past few months and can (have) gained 7 lbs overnight, so I really have to watch it. All in all, my side effects up to this point have been bearable and I'm muddling through...0
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A year for the Biotin - good grief! My nails were always soft with ridges and have gotten worse. I've been taking Biotin for about 6 weeks. Frustrating to think it may be a whole year.
Now I'm also seeing a rash on both legs, same area about midway between knee and ankle. Kind of itchy at times. Now, is it the arimidex, the biotin, the slo-niacin (that I also started about 2 months ago)? None of the above? Just completed my 3rd year on arimidex but we know SE's can pop up and go away at any time.
Are we having fun yet?
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uh oh...Arimidex is starting to make me sick after a wk now. I have a long list to take to the oncol but guess he wont be impressed. I am getting nausea and fatigue and insomnia and high blood prz and drenching night sweats which are waking me up causing the insomnia! I dont like this and my TE hurts,whine whine but I guess i will just keep my big mouth shut cuz I sure dont want any cancer again.
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Layla2525, don't be quiet - rant on because we understand. And still tell your MO to get it on the record. For some of us the se's get either better or manageable and others switch to another AI.
Rash on one leg actually hurts - what's up with that? I'm going to stop the Biotin for now and see if there is any change. Since it takes a year to work shouldn't make a difference.
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Layla I hope your Onc can help you with your side effects I know there are meds they can give you to help with the night sweats which in turn will help with the insomnia (or should because it did me). He may have some suggestions for the nausea but the high b/p I'm not sure what he would want to do about that. You may be one that needs to switch to another AI. Good Luck
Patoo I hope the rash on your leg clears up after you stop the Biotin.
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I hope so too although I don't know how long before it gets out of my system. Legs itching like crazy. I probably should stop everything except the anastrazole. Have MO appt in 3 weeks so don't really want to stop the slo-niacin or D3 until after my bloodwork.
Aarrrrggghhhhhhhh!
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Thats odd Patoo cause I had a spot on my leg and they thought it was a spider bite and it started to spread and they thought OMG its MRSa but then they decided it was just a ring worm. Huh? The witch drs cant decide if I have mrsa or ringworm! How the hell are they gonna know if I have cancer or not? All I know is I told the tech let me see what it is on the Ultra s and I saw a thing kind of like a gingerbread man and I thought I know thats not supposed to be there! The biopsy report said it was IDC. But I havent taken any biotin tablets but there might be biotin in my multi vitamin.dunno. Well the anastro is the same as Arimidex isnt it?
Why were you taking the biotin? The onco told me the AI will mess up my bones so take calcium., Yeah right,calcium doesnt absorb without Vit D and magnesium,where did he take chemistry? If I take tyco#3 and calcium then I better be drinking Milk of Magnesia with my lunch or I wont need any toilet paper for a month!0 -
3Bells I'm anxious to hear about your experience at the Bloch center. I'm reading the book now and actually live not far from Evanston where the center is. I'm sure it's pricey but worth it!!
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Is the Bloch book useful if not planning to access the Center(s)?
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Here's the name of the book: Life Over Cancer: The Block Center Program for Integrative Cancer Treatment Iit is available on Amazon where you can find reviews:
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Chris yes there are portions in the book that are helpful. I got halfway through it while home recovering and now I'm back to work 5 days a week and I'm wiped out when I get home so not much time to pick it up again.
Interesting reading, you will walk away with some things to utilize.
Thanks Spunky, I forgot to include the book title "Life Over Cancer".0 -
I didn't know it, but wanted to see if they have it at the library. Of course the probability I can read it by the time it's due is small-that's why they have renewals I suppose.
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I met with my MO today and he couldn't believe the severity of my SE's on Anastrozole. I also cannot tolerate calcium of an kind--even Tums. And since I have severe scoliosis and a family history of osteoporsis, he is rethinking the plan. He says that since I also did chemo and rads and had a BMX 99% of my treatment is done. He is giving me more "off" time until May 10 . He knows my year has been hell. Meanwhile he is investigating some other options and he will have a plan when I see him next. He would like me to take something.
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perky, NutraNails Naturals essential oil therapy, at Whole Foods. I live in Folsom and get it at our new Whole Food store:) I have ridges and dry nails and skin. This product is helping. I use it two times a day. It is in a nail polish looking bottle, but it is natural oils.0
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Layla, I was taking the Biotin because my nails are shot. I do have the NutraNails Nail Growth Serum from Whole Foods but thought the Biotin would work from the inside out. The rash on my left leg has spread and now is red, warm and blotchy. Have appt on Friday afternoon with my primary doc.
Jean0078, you might be able to get some information to supplement what your MO suggests, on the integrative/complementary/alternative (I forget the actual names) threads. Find the actual threads on the Forum page.
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patoo, most of the time if you are having a reaction to something and you don't know what, they reccommend stopping everything , letting it clear up and slowly adding the things back in. i inow you can't stop your ALS but can you drop the others for two weeks then slowly add back a product per week?
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I would personally go to the DR. tomorrow. Warm..red and spreading could be cellulitus.
I finally had enough pain with my trigger fingers and trigger thumbs. I made an appointment for next week. It hurts to even touch my thumbs and they are staying locked in the up position now.
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Kittydog I was thinking of telling Patoo the same thing especially if the red rash and spreading and heat is limited to one leg.
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