Arimidex - Coping with the SE's

WaveWhisperer

Mamapeg, I can't vouch for all of SC, but healthcare in Charleston is outstanding. The medical university is here, with a National Cancer Institute affiliation. Its BC program is excellent. I like its team approach... as soon as I was dx'ed, they set me up with a surgeon, MO, RO, nutritionist, genetics counselor and psychiatrist. My bs, MO and RO all were women.



There are 3 other hospital systems, and one touts a plastic surgeon who is world-known for breast reconstruction. There even are threads on here -- " Charleston Bound." Women fly from all over to see her.



I've just lived here 4 years and frankly am embarrassed at SC politics, but life in and around Charleston is great. I moved there because my daughter had moved there, with my grandkids.

Rose6

Hi I take my arimidex first thing in the morning, I still have some hot flashes  in early eve, but very few night sweats, and usually I sleep 6  hrs at least unless I am stressed. Maybe you could change the time of day?

    Now heres a question for yall since being on this drug, (2 and a half years I have had digestive problems NEVER had this before , almost like Irritable Bowel syndrome. Does any one else experience this ? Because it is a Pain in the ass

Lynda

pattithenurse

I was just reading on another site. They are recommending 50,000 units of Vit D for joint pain. I'm also transferring my care to a different NP who specializes in oncology. I still have the MO and RO. I'm definitely going to inquire about the high doses of D. And please,what is the ratio of gin to raisins,or is it raisins to gin?! thanks women..........

Anonymous

Patti, D2 or D3? Im on D3 50,000IUs evrry 2 weeks and have been before I started Arim. It didn't stop me from getting joint pain, but there are many variables. Make sure you have your levels checked before starting.

Anonymous

Musical, please check again your Vit D.  50,000 IUs every 2 weeks sounds like D2.  D3 is generally taken daily and may be anywhere from 2000 to 5000 (me) IU's daily. 

Check out the Vit D threads also for information.  I'll try and come back and post, if I still have it, one where I learned much.  There are different views on Vit D2 vs Vit D3 with many docs, when they do reluctantly suggest it, recommending D2 although many patients report better results with raising Vit D levels using Vit D3.   I think we all do differently, yeah, I know, what else is new.

Anonymous

No patoo mines Cholercalciferol under the name CalDeForte here in NZ. It is prescription only and I'm not sure you can get it in the US, or even Oz. It is D3. VitD2 is not to be recommended over D3. Reputable  pllaces like The VitD Council where I learned heaps, always tell you to go for the D3. A lot of Doctors wouldn't even know the difference, for example what blood test to order. There is a lot of ignorance about this and indeed there is some great info on VitD threads here at BC.Org in the alternative forum (i think). I don't see it as "alternative" but absolutely necessary. Of course the best source of Vit D3 is from the sun and interestingly we cannot overdose on it (once we are said to reach  10,000IU) from the sun but it is possible from supplements. Somewhere on my HDD I have a concise little breakdown of the 5 categories for VitD which ironically isn't a vitamen but a hormone. If I find it I'll post it.

ruthbru

Just soak the white raisins however much gin it takes to cover them for two weeks; then eat 8 raisins a day.

Anonymous

Vitamin D
    A prohormone that behaves similar to a steroid in that it binds to a receptor and has a regulatory effect on gene expression. Vitamin D plays an important role in: the maintenance of several organ systems, bone formation and mineralization, and the control of calcium and phosphorus metabolism. Vitamin D also performs immunosuppressive and anti-tumor functions and is vital for the maintenance of the blood/brain barrier. The term vitamin D also refers to vitamin D metabolites and synthetically-derived vitamin D analogues.
    Different forms of vitamin
    Vitamin D1: molecular compound of ergocalciferol and lumisterol (1:1 ratio).
    Vitamin D2: ergocalciferol or calciferol (made from ergosterol).
    Vitamin D3: cholecalciferol (made from 7-dehydrocholesterol). Vitamin D3 is real vitamin D. All other compounds are either metabolic products or chemical modifications.
    Vitamin D4: dihydrotachysterol 22,23-dihydroergocalciferol.
    Vitamin D5: sitocalciferol (made from 7-dehydrositosterol).

Anonymous

Thanks Musical.  You are probably right that here they don't prescribe that high a dose of D3.  And I think that is the problem with docs who prescribe here, they don't recognize the difference/benefits D3 over D2.  Many of our sisters here have to educate their docs or just go it alone.  My MO just looks at me patronizingly (sp?).  I had amazing joint pain relief from D3.

Anonymous

Patoo, also of note is that NZ is quite low latitude wise, which has a bearing on this, as does skin colour. Dark skinned people take quite a bit longer to take in their VITD3 from the sun. Im quite dark skinned. Also in the winter you get much less. Bringing LE into the mix we have to be careful about exposing our at risk arms to too much heat.  As such, my time in the sun is closely watched as I have LE. Something interesting someone said was to get out in that sun, NO SUNSCREEN, but dont get burnt. Expose as much of your body as possible and that way you take in more D3 more quickly. I think with todays modern ways there has been a price to pay where we are inside a lot of the time.

Im really glad you got rlief from your D3. It totally brasses me off when you encounter the unecessary patronizing attitude from the Medical fraternity. I think many of us, it doesnt matter where we're from, have come up against this somewhere along the line.

spunkyboobster

Thanks for the ki67 info Doxie.

ClaudiaMetz

Had my six month 3D mammogram and all is well.  Yeah!!

I have a question, after I take my Arimidex in the morning about 2 hours later I feel really tired and I read something somewhere that it might be an electrolyte imbalance.  I feel fuzzy and seem to be shaky.  What can I do?  Is it from the Arimidex?

Wren44

I've been on Arimidex since March 2012. No se's at all until March 2013. Then I began having warm flushes followed by cold flashes with goosebumps. The last few weeks I've been having periods of nausea at odd times. Last night I woke up just before 2am with nausea, and I'm still having some today. Has anyone else had this? What did you do to treat/prevent it? Some sort of herb tea? Ginger tea?

AnnieLane

Wren44, I haven't started Armidex yet, but taking ginger capsules, 550 mg twice a day helped me with nausea during chemo.

Wren44

Thanks, I never even thought of it being in a capsule.

WaveWhisperer

I had a spell of dizziness/nausea every day about the same time, about 3 hours after taking Arimidex. But I also was taking about six other pills at the same time. I wondered whether some were reacting with others, so started spreading them out during the day. It helped.



Very odd how some SE show up long after we begin the AI's. I just got my trigger fingers one year into Arimidex.

spunkyboobster

I'm a year into arimidex and just started hving stiff hands/fingers.

Anonymous

Ive had a reasonable reprieve from stiff fingers and aching joints but Ive noticed recently in the last week or so, Ive been getting more than my usual share.

Moonflwr912

Ah, all my joints are stiff. I take 4000 iu of vit D3 daily. I have the cold waves right before I get hot flashes. The cold waves last about ten times as long as the hot flashes. I get them much less now that I've been on arimidex almost ten months. I am going to try the gin infused raisens. Sounds like a fun med for a change. LOL

Blessings2011

I've been on Anastrozole for 9 months now. No hot flashes, no night sweats, no insomnia.  I do get cold flashes, though.

I had fibromyalgia for more than ten years prior to BC, then got a huge amount of relief by going gluten-free in a medically-supervised weight loss program.

Enjoyed a six month vacation from pain...then two months after starting the AI, the joint and muscle pain returned. There were other factors, though, such as the fact that I stopped exercising completely after Exchange due to complications. 

Somehow, I forgot to do my 6 month lab work , so tomorrow I'll go in for my 9 month tests. Will see the MO on Wednesday... we'll see what's going on internally!

(Ruth - found the prunes in the back of the pantry! Started adding them to smoothies!!! )

carolehalston

Prunes and raisins!  Lots of wrinkled remedies!  DH tried the raisins and gin quite a few years ago.  I don't remember whether it had any positive effect.  But we're going to make another batch.  He hasn't been able to take any of the statins and he has heart disease--3 stents. 

I bought a big bag of prunes at Sam's.  I actually like prunes.  Ate them one day and then forgot about them!  Mind like a steel trap.

I discussed stopping arimidex after 4 yrs. with my bc dr.'s NP and, as I expected, she strongly encouraged me to keep taking it for the 5th year if I wasn't having SEs that made me miserable.  My body runs warm and I have warm flushes but the stiffness in the joints is only temporary after I've been sitting a while.  I'm not a spring chicken, after all.  Turned 70 in March. 

The reason 5 years is the magic prescription is that the tests were all 5 yrs.  With my low oncotype of 9, my risk without arimidex is 9 per cent so 5 years on arimidex halves that to 4 1/2 per cent.  I also lowered the recurrence risk by opting for bmx. 

So....I'm still taking the little white pill.  And struggling to lose weight, and taking a statin and taking a bp med.  And, yes, I exercise.  Go to the gym a couple of times a week and do strength work-out and walk on the elliptical and walk on the street and play golf on the average of two times a week.  And clean my house (very occasionally!) and do some yard work. 

The way time flies, the year will have zipped by before I know it. 

Thanks for all the support.

pattithenurse

I guess I'll have to start that pesky Armidex in July?! But,my question today is.......I bought the raisins,I bought the gin,but can someone explain the healing properties of that combo. How is supposed to help? Thanks soo much for your input. I appreciate it. Hope everybody has a wonderful day,on this journey of life..........

ruthbru

my aunt's doctor told her about the raisins & gin, he said they produce a natural cortisone effect.

pattithenurse

I thought that's what you said Ruth. Soo,hopefully no joint pain? Do you take it? I'd be interested in what different women said how it may have helped? Guess I have to start this drug in a couple of weeks....................?

ruthbru

I have not needed it, but both my mom and aunt were getting knobby fingers from arthritis and it went away after they started with the raisins/gin. So it worked for them anyway. (They were both non-drinkers, so it was kind of funny seeing them sneak into a liquor store in search of gin!).

Moonflwr912

LOL, Ruth! Question, re prunes. I need to begin to take fiber supplements. Most are corn based. However I found one based on prunes. do you think it might have some of the good stuff prunes have for bones? I mean otherwise I don't care, but it might be helpful. Although fiber is to try to help with my gastro issues, corn isn't that great either, so I would go with the prunes cause they offer something good. so,.opionions, anyone?

WaveWhisperer

Ruth, started on prunes this week! Went to store and they didn't have any golden raisins, only the purple ones. Guess I'll try another store...

ruthbru

Some place will have them. Maybe a Walmart if grocery stores don't.

marianelizabeth

I saw my MO yesterday~~last visit until January! Can't believe this past year but now on the road to recovery. I asked both the GP I saw first and then my MO about studies on Tamoxifen for 2 years then AI for the next 3. MO gave me the info on the major study that looked at all that and said that for me, with my aggressive BC and LVI and 7/14 nodes that she thinks the AI performs a bit better and that she would be happier with me taking the Anastrozole for 5 years and by then there will be more info. So that is that and I will be taking all steps to mitigate osteoarthritis~~osteopenic in right femoral neck says bone scan in February. I guess I have to admit that osteoarthritis is preferable to recurrence and that for me is 50/50, not a great number I know but I feel that I came into this healthy and am on my way back to that state. I read posts of recurrence chances at 2,5, even 10 % and think wow, how lucky, but bottom line is for me, this is what it is and all I can do is take all precautions against being the 1/2 who recur!

I have the raisins but not the gin yet. I was headed to duty free when my DD and I were coming across the border from dropping DH at SeaTac on Monday but we turned too soon and found ourselves at the fast truck crossing and on a one way. A nice border guard told my daughter that we could either go back illegally the wrong way or go through the truck crossing as it was not busy. We chose to forget the gin and go on through. I had to explain how we got there once we were at the booth and I had to remove my sunglasses but then I think the guy looked at my new passport photo (April and almsot no hair) and again at me and just waved us on through. So now I need to buy it here at the liquor store and add the raisin soaked gin  to my Anastrozole, calcium, condroitin/glucosamine, Vit D, Omega 3 and prunes.

ruthbru

Sounds like a good plan, Marian!