For Arimidex (Anastrozole) users, new, past, and ongoing

lago

My NP told me to take it in the morning because many women do get insomnia. I know my onc made sure my D levels were correct too. I think low D might make you feel bone discomfort but not sure.

[Deleted User]

Lago~how much vitamin D should we be getting? I'm pre-op, but after my yearly Bloodwork in April my primary ph called to tell me to take D3 because mine was low, but he didn't say how much to take.



Ruthbru told me to take the arimidex, that I started yesterday, in the morning. I had no insomnia last night, and I'm prone to it anyway.



Blessings~I already have myself trained to take low dose aspirin, calcium, D, and fish oil everyday, so after surgery I think I'll be able to go right back to it.



Be blessed

Paula

lago

Soteria you need to call your doctor and ask how much. Mine was very low initially, I mean single digits. At first I was on prescription strength. I think total 1400 but then there is some in my vitamin. I'm now in high, just above normal range. My PCP says that's OK for me. You can take too much depending on your medical issues so it's important to check. You may not need as much as I need.

ruthbru

 I'm copying a post I made awhile ago after hearing a very interesting speaker. The speaker was a doctor, nutrition specialist, and an eleven year breast cancer survivor. Here are some of her tips for staying healthy and they may help with some of the vitamin questions:

1. We all know we should eat more fruits & veggies, whole grains, less red meat, processed food etc. so I am not going to go into any of that.

2. EVERYONE should be taking a multi-vitamin. Make sure it says ‘Complete' on the label. Make sure it contains iodine, Vitamin K, selenium and folic acid along with all the other good stuff. Interesting facts about why multi-vitamins are important:

* older women with the lowest levels of vitamin B-12 were at the greatest risk for breast cancer

* taking acid-blocking medications make you less able to absorb B-12

* she recommends 400 mcg of folic acid a day. It works with the B-12 (studies have found that folates may help to make chemo more effective and decrease side effects)

* B 6 is important in lowering the risk of breast and colon cancer

* she recommends 90 mg of vitamin C

* 30 iu of E

3. Omega 3.....either eat oily fish twice a week or use fish-oil supplements (make sure it says EPA and DHA approved) 1000 mg a day. It's associated with decreased risk of cancer, heart disease, inflammatory disease, depression and more.

4. Vitamin D....a big deal.....she recommends getting it tested (should be between 40-50 ng/dL). She recommends 2000 iu a day to maintain a good level. Many, many conditions are associated with low vitamin D; heart attack, cancers, rheumatoid arthritis, muscle weakness, asthma, diabetics, multiple sclerosis etc. etc. etc. There are over 200 different body tissues that have been identified so far that have receptors for the vitamin D hormone and they need it to work properly.

* adequate Vitamin D levels has been shown to reduce the side effects of taxol based chemotherapy

* Adequate Vitamin D has shown to reduce the side effects of aromatase inhibitors

* start with a multi-vitamin, drink milk, eat yogurt (check and make sure it has vitamin D added), and most people will also need a supplement to keep that high of levels

5. Vitamin K, should get 100 mcg a day. Check your multi-vitamin, not all of them have it added.  Inadequacy leads to an increased risk of various cancers, heart disease, osteoporosis and kidney problems.

grannieval

Thanks for that great info on the vitamins Ruthbru.  It amazes me that none of the docs seem to give you a lot of the info that I have found out from this group.  Thanks all

Has anyone been on venlafaxine ER?  Supposed to help alleviate anxiety caused by anastrozole.  Also as  se it apparently helps lessen hot flashes.

GrannieVal

Mini1

I started looking at what was in my vitamins and supplements and found several that were labeled as "natural" but had  ingredients in them that they use in cosmetics and paint (titanium dioxide), hyfrogenated oils, talc, red dye #2, yellow dyes, etc. I took them all back and replaced them with better ones and they actually cost me less not more as I expected.

dobie

I think Ruthbru's recommendation of 2000 iu of Vitamin D3 is a good place to start. I took 2000-3000 iu daily for 3 years and never got above 25 on my lab work. The endocrinologist is now recommending 5000 iu daily for me. I would love to double my level. Definitely work with your health care provider on this one. You may need more to correct a deficiency or you may need less during the summer months when you get more sun. Just depends. But 2000- 5000 ius daily is well within the safe limit according to endocrinologist. And take with a meal. It is fat soluble so needs a bit to be absorbed.

[Deleted User]

Dobie

Thanks for the advice. I take D3, but I'm pretty sure mine is only 1000 iu and mine was low in April. I'm not much of an outside person, other than driving, so I don't think I get much from the sun. I was surprised it was low, because I take calcium with D, though, I must confess, I hadnt been very diligent in taking the second one everyday, but I'm trying to rectify that.



Blessings

Paula

gmafoley

I use a liquid form of Vit D that gets directly into blood through the mouth... I started 1 year ago, my number was at 26 and was tested again last month and was at 63.. It is the best! That way it doesn't have to be digested - vit D has always be absorbed through the skin into the blood stream.. Just a thought.

Allagashmaggie

Ruthbru thanks for the run down on vitamins.  I checked mine after reading this and it fits the bill.  It is complete and has all that was recommended.  I do take an additional pill for Vitamin D3 that is 2000 IU.  The last time I saw my oncologist I asked her if there was such a thing as taking too much Vitamin D and she said no.  I get Vit. D in my multivitamin, calcium vitamins and all by itself so I wondered.  My D level was on the low side of normal (43) almost a year ago when they tested it before I started chemo.  I do get out in the sun most every day (if the sun is shining) but coming right up, living in the far Northeast, that will diminish.   GmaFoley, where do you find the liquid form of Vitamin D that you spoke of?   I do have to say that I am not having any joint pain at all on Arimidex.  At first, my knees and thumbs ached a bit but that was it. I may suffer from anxiety from time to time, but I have been that way all my life anyway.  I promised myself I would not sweat the small stuff after I got my bc diagnosis but find myself reverting to my old ways.  It may be in my DNA.  Great information in these last few posts.  Thanks.

gmafoley

Maggie - I get mine from my chiropractor but you can go to this site: 

http://www.professionalsupplementcenter.com/BioDMulsionForte.htm?gclid=CPTA7aHesrICFWHZQgodGU8A3w

You might have to find a natural health doc to buy it I don't know.. All I DO know is for me it works great. I put it on my tongue before I drink my smoothie in the morning.. it tastes like sesame, not bad.. My PCP had me taking 2 drops = 4000 IUs plus what I had in my multi, another 1000.. Onc said keep it up and he is going to try to get a supply for others.

Mini1

I have to take 50,000 IU of Vitamin D once a week. I was seriously malnurished last year after another health matter and was serious depleted of D among other things. It comes in a gel tab but I'm looking to change to a sub-lingual form.

You may want to check sites that have vitamins for people that have had gastric bypass surgery.They have a lot of drops because the meds can't spend enough time in their gastric system to be digested. 

dobie

I have been taking the gel cap form of vitamin D but since upping my dose decided it would be easier to take liquid rather than a handful of caps. I have heard that it is absorbed easier as well. I bought liquid Vitamin D on line from Puritan's Pride. Very reasonably priced. As I have mentioned before, I give a RX form of vitamin d called Drisdol to our pregnant ladies who are deficient. It is 50,000 iu taken weekly. Thats probably what you are taking, Mini1. I retest after 12 weeks and repeat as needed. Once they are at a normal level which in our protocols is 35 , maintenance is one Drisdol monthly or 2000-3000 daily. Actually it is possible to OD on vitamin D but it is something like over 40,000 iu daily so you would have to work really hard to do that! It is not possible to OD on vitamin d from sun exposure though. The body is able to regulate that.

Junif

Are most of you dealing with your MO on the D3 and vitamins?  Yesterday was my first visit with her and she handed me a script for Arimidex (1mg) and said to start it right after I finished rads and then see her a month later.  That was it.  I asked if I should have a bone density scan and she said ok (have that tomorrow).  This woman also has a PHd in nutrition but no other advice except to say I might have a few side effects and let her know.  I'm so frustrated right now.  I guess I need to search for another oncologist and quite frankly I'm tired of having to figure everything out myself....I dumped my primary because he decided to tell the breast center not to give me my initial biopsy report that he would handle it.  I never went to him regarding this...went straight to Betty Ford Breast Center the day I found the lump.  So, now I'm trying to find a primary who will work with me on all this.  None of this is easy.  I appreciate all the posts on these forums--it helps with the feelings of isolation. 

phxsunshine

Junif - I'm working with a naturopathic oncologist who works with my MO.  She monitors my vit D level and helps me deal with the side effects of the adjuvent therapy.  She and my breast surgeon both recommended I read, "Anticancer - a new way of life".  It's a good resource to help you help yourself.  You hang in there, this is a good place to come, never feel alone, we are here for one another.  BTW, I've decided "frustrated" should be listed as a side effect of cancer.  Remember, you are your best advocate and you sound like you've got enough spunk to handle it.  Hugs to you.

moonflwr912

Junif, (((((hugs))))).

lago

My onc checked my D again but she leaves my D management to my PCP. My PCP is awesome. He's the "country doctor" type although right down the street from me in the city. I swear he could have posed for a Norman Rockwell painting.

Mini1

My oco doc leaves that all up to my reg doc. Thank goodness she prefers the natural way to do things whenever possible.

Junif

Moonflower--thanks for the hugs--I needed them today!  Sunshine--I just had the book you recommende put on my Kindle.  Today was just one of those frustrating days. I just get so tired of having to research everything and I'm not terribly happy with this MO and just put out some feelers for a new PCP.  I did email the nurse navigator and requested copies of some reports that I didn't get before...she told me I had to sign a release to get them...WTF...let's see, they are my reports, I paid for them and I have to sign a release....sounded like a sick joke. 

moonflwr912

Junif, its the Hippa law that makes them have you sign a release for your own records. If something on it leaks they can prove you had the info too. Insurance rules our life.

nancyjac

So I have a bit of a catch 22. I have osteoarthritis in one knee. Cortisone injections work well but not long enough and my orthopedist does not want to give me a shot ever 2 months due to the cumulative side effects of long term steroid use. My oncologist wants me to do weight bearing exercise to maintain bone density. So basically I have to suck it up in terms of the knee pain, or take NSAIDS on a long term basis, which have their own side effects. I am not a candidate for knee replacement at this point.

So I'm interested in any body else on an AI who also has osteoarthritis. What do you take for the arthritis that has been approved by your oncologist in terms of interaction with you AI? I am already taking low doses of naproxin and considering adding a capsaicin and/or glucosamine/chondroitin/msm supplement.

nancyjac

Doxie and Iago, I agree with you that obesity is a factor in many things, but that is not at all what I was addressing.  I just meant that the way AIs work in terms of blocking aromatase conversion to estrogen does not vary based on an individuals diet, weight, or percentage of body fat.

 GMaFoley, Estrogen is a catabolic hormone causing an increase in body fat and increased aromatase, whereas testosterone is an anabolic hormone that promotes muscle growth.  So it is actually the other way around.  Estogen can cause an increase in body fat, not body fat causing an increase is estrogen.

ruthbru

I deal with my GP for everything except the 'cancer' stuff (and I have run any of their recommendations that I'm not sure of past him too). Most specialists just deal with their own particular area and don't address the 'whole' person......if you find someone who does, you are really lucky. I think on day-to-day matters, WE COMBINED know a lot more than we will ever get in any doctor's office!!!

lago

I also think oncs are soooo busy that they really don't have time for anything except cancer. Just keeping up with the news on cancer research alone is more than enough. The PCP is a generalist. Oncs are specialists.

[Deleted User]

Ruthbru

I agree totally about the specialists. I have a 24 year old son who was diagnosed Type I Diabetic at age 6. He takes insulin injections 4 times a day. Since original dx, he has been hospitalized maybe 4 times for highs and once for a severe low, ( the scariest ).

I'm convinced that after all these years with dealing with it, and the education we got at Nationwide Children's Hospital, I know a whole lot more about Type I than any GP.

I tell my friends who are Type 2, they really need an endocrinologist to get the proper advice.



This is my 4th day on arimidex. Yesterday evening both hands were very painful, but thank God it only lasted a little while. This morning I felt like maybe I was getting a uti. I know I need more fluids, so I'll work on that today. I've never been good at getting enough fluids. If anything, I think I'm sleeping better than before arimidex. I pray that continues.



Nancy I've dealt with osteoarthritis since my early 30s. I had a knee replacement when I was 47. They wanted to do the other knee then, but I've yet to do that one. I'm now almost 62 and NSAIDs and ibuprofen are too hard on my stomach, so about a year ago I started taking generic Tylenol. I was amazed that when taken regularly it really works.

I get my generics at Walmart.



Blessings

Paula

ruthbru

Drink, drink, drink. A friend gave me a pretty, yet huge (holds 4 cups of water) mug that keeps things cold. I put half of one of those little packets of crystal light in the water for some flavor, and it easy easy to get it down that way.

lago

My skin looks best when I'm hydrated. Best cheapest way to keep your skin looking great is to drink water!

[Deleted User]

I drinking my fluids right now Girls. I've know for years that I dont drink a healthy amount of fluids, but I've stopped procrastinating. My skin could definitely benefit.



Blessings

Paula

nancyjac

I sometimes buy flavored sparkling water.  Just a hit of lime or orange flavor but I like the bubbles.

 Paula, I've tried Tylenol, but it does nothing for me.  Ibuprofen or Aleve generally work best for me, but I don't want to have to take them regularly long term for the reasons you mentioned.  I'm waiting for a call back from my oncologist to see if I can take Osteo Biplex with the anastrozole.

Blessings2011

ruthbru - glad you can handle the Crystal Light mixes!

Too many nasty chemicals for me....just sets off my migraines and other issues (itching, etc.). I do see they came out with a "Pure" brand last year that contains Stevia....I may try that if it doesn't have any of the other chemicals in it.

This article talks about some of the carcinogenic chemicals in Crystal Light. I'd also be VERY careful if you're buying any kind of "flavored water" drinks. Gotta read those labels!

http://www.livestrong.com/article/413874-what-are-the-ingredients-of-crystal-light/