Arimidex - Coping with the SE's

Hi, Sole,

Joining everyone in "welcoming" you to the club no one wants to join ;(  Don't worry about thr SE's of Arimidex - really, most of them go away in time - and it IS effective.  That's what keeps me optimistic about taking it.

Nutrition:  Having adequate Vitamin D in blood seems to help keep joints feeling good!  There is a blood test your doc can take to determine your blood level of Vit D.  Most docs suggest keeping it up near 50.  Also, those wrist splints if you do have hand pain.  I wore them, and they really helped.  My hand pain was bad, so I also went to a Physical Therapist who specializes in hands, a few treatments & doing the exercises she told me to do, and I was fine in a few weeks.

I also get a monthly massage, AND, see an Acupuncturist - I call those two wonderful women the
Bookends of My Well Being."  Just love them - there is "antectdotal" ( as in no scientific clinical trials, yet!) that the acupuncture especially can help relieve joint pain.  It was suggested by my oncologists at Dana Farber, as something to try.  I live too far from Boston to see the Acupuncturist at DF, but I took their advice, and see a woman who lives near me, monthly.

Sorry to hear you are IV, you'll find there is a Special Forum for Stage IV women on BC.org. Hope you are doing well, and feel free to ask any questions about Arimidex here.

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.). 

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.

Oh the ankle cramp I had last night...I could have gone for a shot right then and there!

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.

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.

Lowrider, I like your chicken!

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. 

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).

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!

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!  )

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. 

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.

THANKS  for the replies to my question Both were very helpful..Love to you all!

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.