Arimidex - Coping with the SE's
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chiming in on the VitD issue: yes!! I ran out two weeks before surgery and just purchased some - my joints were aching badly, and have much improved. I also think fish oil helps - I was on a 2 week ban prior to, and immediately after, surgery, and oh! I felt like a 90 year old.
Arimidex is my friend. Tamoxifen was awful beyond belief - I finally understood why women quit it, and refuse to go back. Exponential weight gain (it was almost laughable), fatigue, mood swings, and leg cramps that had me crying in the night. I will never go back on it.
j
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Hi soleil505, so sorry about your news but a long life is more likely, in my opinion, if we follow both M.D. and alternative practitioner suggestions.Let me preface this rather long response by saying I didn't take on all of this at the beginning because it was too overwhelming, but gradually over a period of several months, I've learned more and created more of a healthy lifestyle.
First, there's a lot known that isn't "proven" so your doctors may not know any of it. You'll find many ideas here at breastcancer.org (go to the Jump to a Forum: window at the top and look through the menu for "Healthy Recipes for Day-to-Day Living"). You can start your own topic if you don't see one that matches your search for information.
Also, a book written by a doctor who survived cancer has a wealth of information on what to eat and not eat: Anticancer: A New Way of Life, David Servan-Schreiber, MD, PhD. I got a library copy and made lists to remind myself. Among his recommendations are to eat multigrain (vs. white) flour, only meat and dairy from grass-fed animals, fish rich in omega-3 (to avoid any chance of mercury I take Norwegian cod liver oil pills); to create laughter and serenity in your life; exercise 30 minutes 6 times a week; and clear your environment of cigarette smoke, atmospheric and domestic pollution. Of course, there's a lot more in the book.
In addition, I search around the Internet, also have a friend who's a raw chef and has trained at the Creative Health Institute, which offers articles and recipes at http://www.creativehealthinstitute.co.
I especially recommend green smoothies and I add a scoop of NanoGreens, recommended by my alternative medicine practitioner, best price at amazon.com, "formulated to supply the phytonutriend based antioxidant power of 10 or more servings of dark greens and... fruits and vegetables (contains no added sugar, pesticides, corn, preservatives, etc.).
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What is an "ignore button?"
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Ladies, I tried Arimidex for 4 months. It was brining my blood pressure up and my heartrate up. I normally have a 110 over 67 blood pressure, and for the first time in my life I saw my blood pressure go up to 148! I also had hot flashes and awful pains in my wrists, and at the base of the thumb. The one at the base of the thumb was making me unable to do much with my hands. And bad insomnia.
My onc switched me to Aromasin (I've been on it for about a month and a half) and besides some mild knee pain from time to time that only lasts a few seconds I'm ok - blood pressure back to normal, same for heartrate and sleep. No more hot flashes either and my energy levels are back up to almost normal.
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BEAU - I had an injection in my neck last week. I have always had neck problems but it flared up quite a bit recently. Could be any number of reasons from stress, to rads positioning, to Arimidex. Anyway, I did get the injection in C7 last Friday - it was heavenly - I got quite a bit of relief, but not complete. I have problems at both C6 and C7 and they wanted to do one at a time so they can isolate symptoms and response. It is likely I will get the second injection early next week. If needed, I recommend it. He said even if it is Arimidex (which he doesn't think it is), it will help a lot to calm things down.0
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Oh the ankle cramp I had last night...I could have gone for a shot right then and there!
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Hi Raincitygirl,
thanks for info on your steroid shot! I am meeting with a specialist in May to discuss so it is nice to hear someone who has had a positive experience with it.I am glad that it is working for you! My PCP thinks it is C7 based on my symptoms as well.. I am starting to wear the wrist splints as well which seems to be helping as well.
Best, Beau
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Beau - have you had an MRI yet? If not, ask your PCP to order it now because the specialist will require it and that will add more time. They can't do the injection without seeing the MRI in advance...I am getting the second one early next week.
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Hi raincitygirl! See you take Arimidex... my onco just changed me and I finally filled it today. Concerned about starting it but was gaining weight like crazy on Tamoxifen and wasn't happy with that either. Hoping for no side effects here... if they start back to Tamoxifen I go. Weight gain is better than other pains.
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My cousin had BC double negative,,had lumpectomy and the rads that took a week.That was 4 years ago..she now has mets to both lungs ,,They put her on arimidex can anyone explain why>>TY My only thought is tumors have estrogen in them.
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Lakewoman it is possible that the cancer that returned has a different biology that the original. You said she was double negative. Not sure what that means. Do you mean triple negative?0
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Lowrider, I like your chicken!
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mimi1964 - Yes, started in March 2011. We have a thread for March 2011 Arimidex starters which you can also visit to see how us early users are doing. So far, most of us are doing pretty well. I can't say if the few pounds I have gained are Arimidex vs. laziness and food. Hopefully, you will do as well as most of us. I feel terrible for those who have suffered on Arimidex - further proof that we are all different.0
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I could easily be wrong but I believe that double negative is a valid diagnosis. Negative for estrogen receptors, negative for Progestrone receptors yet positive for HER2 or any combination of the three.
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Hi Raincitygirl,
Yes, I had a MRI that showed 3 discs with ruptures (2 old, one new - C7), so my PCP has the MRI as well as my symptoms to go by. In any event, I have been down this road before, but usually I can wait it out with NSAIDs, mediation, yoga, etc. This time, I am just trying to figure out how long to ride it out. Chemo and now Arimidex have definitely kicked it up, but I am so sick of being a professional patient. On my bad days, I think that I should definitely try it; on my good days, I just feel like pushing my way past it. Another month or so and i will definitely go for it. I am not really worried about the procedure, but just the effort of doing yet another medical appointment, etc. I am really glad to hear about your positive experience. I see no reason to suffer indefinitely and you've given me a boost to try the shot if I can't get this pain to calm down soon.
Mimi, good luck with the Arimidex. I hope that you will glide right through it! I just want you to know that even if it starts off with some aches and pains ( I had a lot and still have my share), it does smooth out for some of us. I have only been on it for 10 weeks but weeks 3 -6 were awful. My onc told me that 55% of folks who have bad symptoms and stop for a month or so, (or switch to another AI) will feel much better. I decided to hang in for another month before I made a decision to switch or take a break. (he also armed me with some pain pills for my bad days which eally helped take the edge of my neck pain, which Arimidex aggravated and general arthritis that Arimidex brought on.)
I am glad that I waited a bit longer because I now feel like I can manage most days and be positive and upbeat.
Good luck on your journey and keep us posted! Best, Beau
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I was worried about weight gain because I was already 25 pounds overweight, but eating more vegetables and cutting out sugar and dairy I've actually lost 15 pounds (bumping up the exercise helped there, too). HOWEVER, I was determined that my already arthritic body wouldn't notice any extra joint pain. Duh! This is my 11th week on Arimidex and I'm having neck pain that feels like somebody's sticking a knife up both sides of my neck, which of course creates a formidible headache. I'm going to ride it out, though, with the help of yoga, massage, hot pad, etc. (trying to stay away from pain killers because of my acid reflux).
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Beau and marybast - having tried nsaids, massage, acupuncture (which I am still doing), and oral steroids, I felt like I had done all I could short of leaning on pain pills. They offered me neurontin but I felt why take something that masks the pain and causes even more weight gain if this shot may work. Fingers are crossed! If it's not one thing, it's another!!
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I went on pain meds when I just couldn't take it any more. I feel like the tendons in my neck and shoulders have shriveled and are pulling on my shoulder joints. Sometimes my hands hurt so much it's hard to hold things. My ankles give out. I can do a lot more when I've taken pain meds and the increased activity doesn't exacerbate the pain, so in my case the masking is a good thing!
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I just started it this month. Generic form. I purposely didn't look up the side effects because I didn't want to put anything preconceived in my head. So far, I do not notice a difference. I feel the same now as I did before I started taking it.
I was thinking I was going to be put on Tamoxifen. Does anyone know why one is chosen over another?
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Nora there are some reports that Als are a little more effective than Tamoxofen but it doesn't seem statistically better it's so small. Overall it seems that the Als are better tolerated but of course everyone is different. Some of the SE are more serious on Tamoxifen (if you get them) but their is the risk of osteoporosis on Als.
And just to let you know I started March 1 and I feel better than I've felt in along time as chemo SE's disappear. I feel bad for eveyone when I read how stiff and achy they feel and I have just finished working out. I'm doing the same lower body exercises I did before surgery… just with lower weights. Need to be careful with upper body because of LE, cording and my range bounced back into a not as good. I swear every time the do a new treatment they kill my range of motion.
(I need to design better emoticons. BC.org just doesn't have my emotional personality at all! ) 0 -
oh, burley! I'm so glad to hear about your driving issues
I thought it was just me!!!!0 -
nora_az,
Generally speaking Tamoxifen is RX'd for younger women who are pre-menopausal. The AIs are only for post menopausal women and women who have had an oopharectomy or are having shots to suppress menstruation. Of course there can be exceptions and then changes made when either/or drug is poorly tolerated.
If you have a history of blood clots, you would not be put on Tamoxifen probably since that is a possible SE. Conversely, if you have osteoporosis your doctor might want to avoid an AI since they tend to cause more bone loss.
So there is no hard and fast rule.
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Hi all,
I thought that I would share my journey (all of 10 weeks!) of what time of day works best for Arimidex. I would love to hear from other folks as well about any special tips.
The first month, I started in the morning with my breakfast, but I got a heahache and the blahs. I added an NSAID at the same time and got rid of the headache, but by the end of day, I was crazy cranky with arthritic pain, especially in my hands and neck.
The second month, I switched to noontime, on the notion that I would get more of a pain free morning and be less crazy by the end of the day. Enter insomnia. I cut out caffeine and the insomnia improved slightly, but not great.
The last two weeks, I threw in the towel and now take it at night with a sleeping pill. My hope was that I would sleep through the worst of it. So far, so good. I don't know if it is just that time has passed and my body has adjusted or if nighttime is really working better for me, but I definitely some improvement from the first month. Probably it is just my body getting used to being without estrogen, but I am going to stick with it since i feel better.
Raincitygirl, good luck with your next shot - I hope it does the trick! Let me know how it goes. Best, Beau
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Ok so now I am more confused why I am on it. I was still on my periods (I am 47) before chemo. My mom had her period till she was 55 so I am sure I would follow that same course. They did test my hormone levels last time I was in there before they prescribed the anastrozole. They may feel as if chemo put my body into permanent menopause, I feel as if I know my body better and I am skeptical.
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I've read posts by some women in your situation who were on an AI and after a year or so following chemo their periods came back! I didn't follow up to learn what happened. You might post a question to see how the situations were handled.
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THANKS for the replies to my question Both were very helpful..Love to you all!
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Nora, I'm 43 and got put on anastrazole as well. I had FSH/LH hormone tests which showed I'm in menopause. My onc said it is likely permanent after chemo if you are over 40. He will test my hormones every 6 months and if my period comes back, he will have my ovaries irradiated or removed. He likes the results arimidex/anastrozole are getting and he is very conservative. I trust his judgement.
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When I started taking Arimidex in 9/09, I took it in the morning and felt so miserable I could hardly face the day. Then I started taking it at night and continue to do so. I also take a benedryl knock-off as a sleep aid. To help with the menopausal SEs, I take 75 mg Effexor. I recommend exercise, fish oil, and glucosamine/condroitin to help with the joint stiffness.
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I've been trying to track my hot flashes to see if anything makes them worse, but they're bad no matter what I do. The only thing I haven't cut out is caffeine, but I only drink coffee in the morning, and my hot flashes don't start until later in the day. Frustrating.
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nora_az I had my last period 2 weeks before chemo. I was 49 (turned 49+1 in Feb). My onc tests my hormone levels. Used to be every 3 weeks not every 6 weeks. She's pretty sure I'm in permanent chemo-pause but will monitor to be sure. Given my family history (Mom started menopause at around 50. My sister is about done at 53) I don't think I'll get my periods back. I will admit my hot flashes, that weren't too bad to begin with seem much less now that I'm not on chemo. Of course every time I say that I get a few more that day
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