Arimidex - Coping with the SE's
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I had onc visit yesterday and told her my se's seemed to get worse at the 6 month point, she was surprised and said they usually start improving at this point~of course she also said depression, brittle nails and thinning hair were not se's of anastrozole...just a coincidence?
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notself, My levels were fine around 55. Then I fractured my wrist. Levels dropped to 27. I'm assuming from fracture. Onc just put me on the 50000 U. Will recheck levels in twelve weeks. Certainly then if no improvement I will question and ask about a lower daily dose.
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I am on Anastrosole...about three weeks now..mostly I have no SE, except maybe feeling a bit hot at night or tired in the morning. I was bummed to take it but guess it is my friend.
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ptdreamers,
Here is the video that woke me up about Vitamin D. I hope you find it useful.
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My experience with vitamin d: When I was dx'd, my level was checked and I had a 7, the second-lowest they'd seen at my cancer center. I was on 50,000 for about 6 weeks and that brought it up to normal. I couldn't have gotten there with an OTC dose. I am on a maintenance of about 2000 daily but it's barely normal. I'll have it checked again next week for m follow-up. I may boost it again if it's dropped.
Vitamin D is considered the new cancer marker. It's not clear whether it's an effect of cancer or a contributor, but if anybody hasn't had their level checked, I strongly recommend it.
I've been on anastrazol for about a year, with no SEs (other than some initial bone aches, quickly resolved by a daily Claritin (regular, not Claritin-D)). For anybody reading here who's worried and is about to start AIs, please know that there is (as with all things) a menu of possible SEs but it is also possible to experience few or none. This group is a fantastic resource for sharing info and finding ways (especially healthy ways!) to manage or alleviate any of those SEs. Everyone is different!
Big day tomorrow: I'm swimming 1.5 miles in SF Bay as part of Swim Across America, raising funds for cancer research at children's hospital. (There are events all over the country.) I got to have lunch with several olympic swimmers today when they visited the kids at the hospital (where I work). I jump in the water at 9:30, from a boat under the Golden Gate Bridge. Think warm thoughts for me! It's going to be a hard swim but a beautiful day.
In preparation, I had a deep tissue integrated massage with a new person who was recommended to me. She used a Chinese technique called "gua sha", which I'd never heard of. It was incredible at getting the toxins locked in the deep tissues. It feels like someone is running a comb over your back lightly, but it was astounding the results. I've had a knot in my shoulder for 30 years, and nobody NOBODY could get it. She worked on it for about 20 minutes and it is gone. I feel like I have a new arm. And on my treatment side and with my lymph system there, it was astounding how much scar tissue and toxins had built up. I have an accupuncture appointment on Tuesday and can't wait to tell my doctor about it. (My accupuncturist is my favorite doctor on my care team.)
Susan
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Susan, that's really good. Have fun tomorrow! Go swim!.
Re: vitamen D- I believe this is the one that you have go take with some fat to help it be absorbed correctly. My level was 12 when I was tested 4 months before Dx. It is now in the normal range. I take 2000 units daily at breakfast. I took 50,000 weekly by prescription to catch up when first Dx low on D. Much love0 -
Good luck tomorrow. Hope your swim is fun and raises lots for the children
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Susan-good luck and stay warm. Great news about the massage, I'm going to see if anyone in the Chicago area does it.
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Hi Ladies, I havent read through all of the posts but just wondering, are headaches (top of head and forehead) common SE with Arimidex??
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Hi Ladies, I havent read through all of the posts but just wondering, are headaches (top of head and forehead) common SE with Arimidex??
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In these studies, the most common Arimidex side effects included:
- Hot flashes -- in up to 36 percent of people
- Nausea -- up to 20 percent
- Weakness or fatigue -- up to 19 percent
- Mood disturbances -- up to 19 percent
- Headaches -- up to 18 percent
- Arthritis -- up to 17 percent
- Pain -- up to 17 percent
- Joint pain -- up to 15 percent
- Sore throat -- up to 14 percent
- Nausea and vomiting -- up to 13 percent
- Bone pain -- up to 12 percent.
- Back pain
- Cough
- Difficulty breathing
- Osteoporosis
- Accidental injury
- Broken bones
- Insomnia (see Arimidex and Insomnia)
- Swelling or water retention in the arms or legs
- Abdominal pain (stomach pain)
- Constipation
- Diarrhea
- High cholesterol (see Arimidex and High Cholesterol)
- Infections
- Weight gain (see Arimidex and Weight Gain)
- Breast pain
- Dizziness
- Urinary tract infection (bladder infection or UTI)
- Loss of appetite.
- Depression (see Arimidex and Depression)
- Anxiety
- High blood pressure (hypertension)
- Pain
- Swelling
- Tenderness (especially in the legs)
- Signs of an allergic reaction, including:
- Unexplained rash
- Hives
- Itching
- Unexplained swelling.
Rare Arimidex Side Effects
Rare side effects of Arimidex occur in 3 to 7 percent of people taking the drug. Because these side effects are so uncommon, it can be difficult to tell whether they are actually caused by Arimidex or by factors unrelated to the medication. Some of these rare side effects include but are not limited to:
- Flu-like symptoms (such as fever or chills)
- Indigestion or heartburn
- Unusual sensations, such as burning or tingling
- Pelvic pain
- Muscle pain
- Sinus infection
- Vaginal infection or inflammation
- Cataracts
- Dry mouth
- Bronchitis
- Sweating
- Anemia
- Thick, white vaginal discharge.
http://breast-cancer.emedtv.com/arimidex/arimidex-side-effects.html
I have osteopenia, cataracts, general muscle pain, occasional hip pain, mild depression, occasional anxiety (Vitamin B helps with this). I am controlling most of the side effects with vitamins and supplements approved by my doctor. Most women have fewer side effects, some none at all.
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Notself - I had to put on my student hat, but I watched the youtube video you posted. According to this Phd in Nutritional Physiology, 2600 IU's seems to get most people above the minimum Vit D requirement. I didn't write down all of the numbers, but I tried to keep 2600 in my brain. At this dosage, it put no one over the maximum threshold amount.
B123 - I don't know if it is Vit D deficiency (but I ran out of my megadose weeks ago) I've been having headaches on the top rightside of my head and top of forehead. It's not clear if it is dehydration or Vit D, but the headaches arrived at the exact same day as my hot flashes and insomnia. I had aches from day 1 on Aromasin.
My bone density study showed some osteopenia in my lumbar (this was about a week into taking Aromasin, last month). At 58 I was shocked to even have that, though my november 2011 Vit D test was extremely low (in the teens). I'm big boned and exercised extremely most of my life, so I thought I'd get by on the weight-bearing factor, but I guess not with low Vit D.
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B123 I have been on Arimidex for almost a month and not a day has gone by that I haven't had a headache. 2 Advil usually solve it but I don't think living on advil is very healthy. I have an appt. on 10/8 so I will see what he says. I have some other aches and pains but nothing really worth mentioning.
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Thanks for that Vit. D video. I have been chronically low for a very long time and my highest level so far is 29! Lowest was like 17. I need to get it up big time. This gave me the info I needed.
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Notself, OMG, thank you for posting all that! It scary that we can have all that but relieved to know it is "normal"..
Kam170, same! From the beginning I have headaches everyday (nagging pain top of head and forehead) and osteopenia lower back, which I have lots of pain. The claritin helps though.. I really dont know what my VITD is or was?? I assume its fine or she would have told me, right?? DOes that play a big factor in the headaches?
Gayle56, sorry you have them too, it is not enough to hold me down but its a nagging pain that is bothersome, I will try some tylenol or advil. Please let me know what happens with your appt, I would love to hear.
Thank you lovely ladies!
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The video is what gave me the information to start taking enough D for me. Everyone is different so that is why regular testing is important until ones level is stable. Calcium, magnesium and potassium are also important.
I am regularly low on potassium and take prescription strength. I think getting my potassium level up to normal has also helped improve my bone density. There is no easy test for calcium because if your blood is low on calcium your body just takes it from the bones to restore the level in the blood.
Every adult should have 1000mg of calcium a day through diet and supplementation. One should have 250 mg of magnesium per day through diet or supplementation. Too much magnesium will cause intestinal upset and other problems. Too much potassium can be as bad as too little and cause heart damage. Do not self medicate with supplements. Involve your doctor and get tested until the appropriate levels of supplements are reached.
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Notself about 7 years ago I was having problems with leg cramps, especially in the thigh area, the kind that make you scream! I typed "leg craps" on the search bar and it took me to a site that said, they are usually caused by lack of calcium, magnesium, and potassium. I started taking them everyday and drinking more fluids and I never get cramps anymore.
Thanks for all this info everyone. I'm really going to be conscience of my vit. D from now on.
Blessings
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@ spunkyboobster and Tskaiser75, ditto. My onc sucks. If I didn't live in the middle of nowhere, I would switch docs. But only need to get through 3 more years. Neurologist has some ideas. Taking a 2 week arimidex holiday. On day 4 and really no diff. But Arimidex has 3 day half life, so might see a difference by end of week. I swear I'd trade 6 more months of chemo hell to not take these drugs anymore! Hugs sisters and Notself, CONGRATULATIONS!!!
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I had severe daily headaches on Arimidex to the point where I was hospitalized and about to be put under the care of a neurologist. I got to the point I couldn't function. My onc. didn't think it was the Arimidex, but when I stopped it, they went away. The pain became excruciating. I did not have this side effect with Aromasin, although I had other probs. with that medication.
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In the last day or so I have a swollen and painful tongue. I think I need to call my doctor tomorrow...it must be the pills...UGH.
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B123
I assume its fine or she would have told me, right??
In a word ? No!
Most drs are just catching up when it comes to testing for D. Besides, my dr. said mine was fine, but when I looked at the results ( yes, I ALWAYS get a copy of my lab results) they were on the lowest end.People with cancer should be on the HIGHEST end.
I take 2 pills now.
Over the yrs., with many conditions, I learned the hard way to check all labs myself, to requests tests and NUMBERS (not an " ok " )and then cross reference with Dr Google !
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Purple, I agree, I love my Onc, but sometimes I wonder!? Good idea about getting a copy of the lab results. I will do that in the future. I really dont know my D levels and dont even know if they were ever tested? She takes blood only when I ask.. Why are they so relaxed about testing? What are the highs and lows of D levels?
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somanywomen wrote:
Been on Arimidex for 3 years of the 5 planned....Besides the effects of sexual dryness which was torture when we would try, i really wouldn't have many side effects but then about 3 weeks ago Oct 9, 2012 about four weeeks ago, I had a sudden bad leg pain and could hardly walk the dog, a day later I was admitted to the ER with Extensive Acute Deep Vein Thrombosis of lower extemity....Now on warfarin (blood thinner) have to be extremely careful, already fell once and am bruised like I was in a auto wreck....Will have new ultrsound in 3 months to see if my body has dissolved this....DR took my off Arimidex, since this could be a side effect....While in the hospital I was given CT to make sure it was not cancer caused and also Bone Scan and luckily those tests were negative...I am a little afraid of being off arimidex and am taking tumeric and trying to eat estrogen inhibiting foods...Any others out these with this happening or any advice...Thank you
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somanywomen...during chemo, I developed blood clots in my lungs and was taking daily shots of blood thinners for 6 months (Fragmin). I was given Arimidex because the SEs don't usually cause blood clots (DVT) and Tamoxifen has clots as a possible SE.
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somanywomen,
Do not take turmeric while on blood thinners. Stop now.
Turmeric is an anti-inflammatory just like aspirin. All anti-inflammatories can cause bleeding.
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B123 - my MO did not test my Vit D. That doesn't mean she shouldn't have or other MO's don't, but I happen to have had it tested right before my dx last year. My PCP is treating it with a megadose once a week (though the Rx ran out about a month ago and I've done nothing about it...til yesterday...hmm, pharmacy hasn't called?). Honestly, I think the headaches might be exacerbated by the Aromasin (I know this thread is for Arimidex, but aren't they all in the same category?), but I did push the water on the 3rd day of the headaches and they mostly went away. Make sure you are getting enough water! Also, exercise seems to help with my leg pains, though only temporary relief and it's not like I've run a true experiment. I just did more vigorous walking over the weekend and the pain seems to have abated a bit.
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I too was tested shortly before my Dx, it was 14. Low normal is 35. So mega doses till I caught up. I am now at 40. Still taking 6000 a day. That's 3 little capsules a day. my PCP ordered the test. He does it about every two to three years at checkups. They know there is a connection to bc, but don't know yet if bc is caused by low levels, or if bc causes low levels. Ongoing research.
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notself - I want to take that list and pin it my forehead. That way when people say, "I'm so glad you are done with BC" I can point to the list. Not done, just in the next crappy phase.
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It is quite a list, isn't it? Every couple of months a new SE gets added as women or their doctors report them.
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B123
I THINK the range for D levels is 30-60, but it will TELL right on your lab results slip.
You can always ask for that test.
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