For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Aw, thanks, hrf...
I definitely hear you about how this is the hardest time of year to be cooped up inside with all our issues. I sometimes look out at my nekkid garden and think about how soon I might be able to get out there and add some color!
Is it the cyst on your spine that is keeping you from exercising? Would a therapy pool help? I have degenerative disk disease and spinal stenosis. Out of the water, I am useless at any kind of exercise.But in that warm water, I can run, I can jump, I can get my heart rate up without hurting myself in any way. That's why I miss it so much!
How many years have you been on the Arimidex? I wonder if there are any studies that show hair regrowth as soon as you stop the drug....
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We can only hope...........fingers crossed!
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Blessings, cyst pressing on the nerve root is causing excruitiating pain - that's why I can't exercise. So much of each day is just trying to manage pain. If I manage to get a few hours when I feel ok I do laundry, cooking, shopping etc. I'm taking as much meds as is possible and of course that does upset my system but drinking tons and tons of water to keep things moving if you get my drift. I do have degenerating disk disease as well and osteoarthritis. Over the past year I have been exercising every day - lots of walking and therapeutic yoga. I don't think a therapeutic pool would help at this point - the cyst may need to be drained I guess. But thank you for the suggestion and at some point it may be appropriate to get me moving again. I will keep that tucked away for once this issue is resolved. ....oh, I did have a bone scan as soon as this started and it was clear. My first thought of course was possible mets.
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Hi All,
Hrf- sorry to hear abou the cyst but hope it gets resolved quickly! I have 3 herniated disks in my neck so I can relate to the pain.
Here is something that I am curious to see if other folks have experienced. The last two months, I have had a serious flare up of pain and muscle spasms with my herniated disks - so much so that I was thinking of asking my onc for a bonescan if it didn't get better soon. That said, I stated to really focus on taking my required supplements, esepcially Vit D. Instead of just the 600mg of calcium and Vit D, I added another 1000 vit, D plus 100 mg b6 for nerve pain (helped during chemo). Not sure if it is time, diet (post holiday?) or really the Vit D. Curious to know if others have slacked off Vit D or Calcium, had pain, and then went back on it with positive effects? In any event, glad to be feeling better - not all the way back to where I was before this started but definitely improved.
Best, Beau
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I didn't know about b6 for nerve pain. Although I've been taking Naproxen and it didn't seem to do much.
Beau, good that you are feeling better.
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Schatzi Arimidex is still under patent in Canada (until Oct 2013 I think, it was approved later in Canada than in the US) so those of us taking anastrozole are getting the brand name Arimidex. I'm in British Columbia and I get it free through the hospital pharmacy, same as in Alberta but I probably pay more under BC Pharmacare for other things, but $311 a script, wow, that must hurt.
Kathy
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Kathy...I was taking the brand Arimidex here in Ontario for 10 months and because it was paid for by the provincial government ( I am over 65) when the generic became available they would only pay for that. The generic brand is Anastrozole. I refused to pay the $341 so I am taking the generic. It has been 2 weeks now and no SEs yet. I am just happy I don't have to shell out any of my own money. If the SEs were bad, then I would have no choice.
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beau...I can't believe it...another person with 3 herniated discs in her neck. Wow I have the same thing...the MRI said "herniated, bulging discs". Mine were caused 35 years ago by a whiplash that was never treated. I didn't realize it until it was too late. I have considerable pain but only at night when I go to bed because of the pressure from laying on my neck. Daytime is fine UNLESS I try to exercise or even walk on hard pavement...even the treadmill will cause terrible pain from jarring my neck. I am taking gabapentin and it helps somewhat but the pain is there every night. I am fine sleeping for a few hours but then the pain wakes me up and I have to get up and finish sleeping in my recliner. This has been going on for 15 years. My PCP just upped my dosage so I am hoping this will help. I NEED desperately to get some exercise. This damned Al is wrecking my bones and I need to offset the damage somewhat! Not to mention the weight gain in 6 months...scary stuff!
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Schatzi if you are having issues stay off the treadmill. Its better if you do you walk off the treadmill if you have back issues. Believe it or not it's not as hard on your body.
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lago...I don't have any back issues, it's the C4, C5 and C6 in my neck. They are very sensitive to any jarring movements. Sadly, that includes just walking any distance. The treadmill is toast!
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Water exercise and the recumbent bike are what they advised for my sister who has disc problems.
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yeah I only wish there were a Y here or a pool. There isn't that I know of.
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Hi Schatzii,
I am sorry to hear that you are in the same boat as me! I also have trouble sleeping but ice and heat, a ton of pillows( and anti-inflamatories and mucle relaxers when needed) help me manage. I do think exercise is key to reduce pain over time because you need to build up muscles in your shoulders and tummy to help protect your disks from pressure. I would consider getting a script for Physical Therapy so you can work with a trained specialist to help you start but stay safe. I started with some elastic bands and slowly moved up to small weights, and even yoga ( I just know not to do certain moves). I also walk a lot but for a while I actually walked with a neck brace because it helped the pain in my neck.
In any event, I hope that you can find a way to do something physical because it is so helpful when the AIs make you stiff as a board.
hrf- B6 doesn't really help with the pain, but with the healing of the irritated nerve. I had neuropathy during my TC chemo and my onc put me on it. I did some research as well and found that they have used it for years with diabetics to help promote nerve health. So, whenever I have a flare up of my neck problems, I take 100 mg/day.
Best, Beau
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Beau...I have tried anything and everything from chiropractic to therapy to acupuncture....all to no avail. I have pretty well learned to live with it and I enjoy any night that isn't too bad. I am off to CostCo to get ANOTHER pillow to try that I slept on at my DD's and had such a good night. She got it there. I have a closet full of pillows I have tried from the hull to memory to side sleepers...there must be 8 of them! I will try anything except surgery...that is a NO NO for me!
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Hi everyone!
I picked up a bottle of anastrozole (1mg 1 a day ) last Friday. I haven't even started yet. I'm so afraid of SE I know I won't know until I tried!
But I forgot to ask my MO about my vitamins that I take every morning, I wonder if it won't mess up with anastrozole? I also take Effexor xr 150mg which MO is aware.
Vitamins I take: b12 2500mcg, b6 100mg, biotin 5000mcg, C 1000mg.
I am hearing that I should add vitamin D ? If so, which one/ dosage?
What about clartins?
Should I ask MO about this? Or is it on my own?
Thank you so much!! Hugs to all!0 -
Yes. Talk to your MO. Each suggests a customized "cocktail" per your bloodwork. I am on 1800 Calcium, 3000 IU D3, 250 magnesium. Anastrozole is famous for its calcium zapping properties, so calcium is super important. I hated the gigantic horse pills, so now take the "gummy" variety.
Best of luck to you.
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I would ask your onc or your PCP about how much D. I'm on a lot of D because I was in the single digits. You do want your D levels not to be low when taking this.
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Thank you skittle and lago! I had my blood work last Thursday when I went for my herceptin infusion. Where am I looking for the D level? I have blood work results.
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I think they have to specifically order the D test
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Ohhhh ok I'm surprised my MO didn't do that before he giving me anastrozole ? Did he overlooked about that? Should I just not take it yet until I call MO and get D bloodwork?
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ladyfighter, when you get the test for Vit D level, make sure you find out what the result number is. Don't just let them tell you it's 'normal'. The normal range is from 30-70, but it's much better to be closer to the 70 end. (should say that's my opinion but I think others here will agree.)
I take 2000mg of Vit D daily, along with what I get in food to keep my level in the 60's range.
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Thanks lee7, how often we should get tested for D? Thanks!
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ladyfighter wait for your doctor to precribe. You may be fine or not need that much, or may need more. I was single digits so initially I was on prescription D (megadose). I'm now high normal at 79. I think they test it yearly if you have issues..
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When I went to see my oncologist for the first time, she did a complete CBC and my Vit. d level was 37.
My liver enzymes were a little elevated due to the statin I am taking, otherwise everything else was in range.
However, after reading all about the need for optimal vit. D levels, I have increased my intake to 3500mcg .
I am going back to see the Dr. next monday and of course more blood work...can't wait to find out if level has gone up!
Mena
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Mena there is such thing as having too much vitamin D. I wouold not increase without your physician recommending it. More isn't always better.
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I don't know if you can actually have too much vitamin D. I have gotten mine up to 72 and my doctor is thrilled. Here are a few notes about it from a lecture I went to by a nutritionist a couple years ago:
* Vitamin D....a big deal.....she recommends getting it tested (should be at least 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.
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ruthbru, I think if The Vit D level goes over 100 then it can be a problem. There is a page in BCO about Vit D.
http://www.breastcancer.org/risk/factors/low_vit_d
Someone might have already posted this link....I don't remember. The page said too much Vit D can cause too much calcium to be in the blood and I know that can be bad. Front page of BCO also has a new article about Vit D and Zometa..good to read. More and more it sounds like a good Vit D level is really important!
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Good link, lee, thanks. The only two of their recommendations I'd question are soy milk (because estrogen positive ladies should be wary about adding extra soy to the diet), and cod liver oil (because that would make me throw up!).
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Hi, I am new to this thread and just started taking arimidex last Thursday. I am 44, just finished chemo on Dec 31, and waiting to get oopherectomy. My question with the arimidex, does it hinder hair growing back after chemo? Curious if that is a side effect from this med. Any feedback would be helpful.
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I'm already arguing, in my head, with my MO about the necessity for the AI. My left stage 1 was removed by UMX, and the right breast was reduced by 50%. No chemo or rad needed. So, now my recurrence risk is probably....what? 1-2%? Hell, I have a 1-2% risk of getting "hit by a bus" as they say. It sounds like, by reading these posts, that my risk of SE from AI impacting QOL is probably 75-80%.
You want to blame somebody, or something for BC, and I'm inclined to blame my thyroid doc, who kept pushing higher and higher doses of ERT on me that I didn't want to take. THEN look what happened! I get that he wanted me to feel better....but, maybe he'll be more cautious with the next woman. This time, maybe I should stand up for my preference.
I'm disabled by a botched knee replacement, so am unable to do the vigorous exercise that others are describing. I'm at high risk for falls, and would really like to keep my thinking sharp....it's all I have anymore. Would it be stupid of me to decline this drug? I see him next week. He is staunchly evidence/protocol based. "The studies say". I counter with "The patient has a say". He doesn't care for that. But, I know he's brilliant.
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