Arimidex - Coping with the SE's
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wenweb: I think there is a Arimidex police and my Onc is the Chief! I have been on it for 7 years and no matter what SEs I have, he says "don't worry about it, you're doing fine!" I wonder how long this man expects me to cope with this stuff? I refuse to take anti-depressants for a personal reason from the past so I have done a lot of crying during this 7 years. However, he feels "crying" is not a good enough reason to stop. Sometimes I think he studied Oncology at the "Funny Farm" if you get my gist!
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First 6 weeks - side effects:
The worst is the flu-ish, achey feeling in my joints. I feel like crap. What can I take to lessen the pain? I am already on Zoloft - I am taking some leftover Vicodin. Any ideas are most appreciated.
Anyone thirstier? I am drinking tons of liquids - water, coffee, milk, lemonade, iced tea, more water. I could float away. I pee a lot!
Hot sweats- annoying but not worrisome. I wear loose, cotton clothing - thank goodness it's winter. My husband keeps shutting up the windows - it's February, and I woke up last night to crack it open so I could BREATHE. No heat on in the house. I hope this gets better = it's quite comical.
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It does & it is so gradual that one day you'll realize, "Oh wierd, I didn't have the urge to strip off all my clothes and climb into the freezer even once today!"
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Medigal
You made me laugh and want to cry at the same time :>) I'm sure that your onc wants to keep you on a steady path, but 7 years?? Are you in a study?
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My onc's mother is also an oncologist and had breast cancer. She has been on Arimidex for over 7 years and doesn't plan to quit any time soon. I too plan to stay on longer than 5 yrs. if the research supports it and I have had every conceivable side effect. It helps me psychologically to feel like I'm still fighting this disease with everything I've got. The joint pains and the hot flashes are miserable, but I think stage IV would be worse, so I'll keep plugging along.
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Christine,
Mind that Vicodin! It may be the cause of your excessive thirst, and while it does do pain control, it has no anti-inflammatory function. My pharmacist told me that it is a mix of Tylenol and fake codeine. If you take it without Colace or Metamucil, like most opiodes, it will turn your poo to stone.
I have found that a combination of 5,000 Vitamin D-3 and 500 mg. Magnesium has been very helpful in controlling joint pain. I also think that the D-3 may have slowed my hair loss.
paamboli
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PAAMBOLI - Ha ha - you made me laugh - I don't need any stone poo
I will boost the vitamins - actually, today, I skipped all meds just to see how I did - rebaseline. I am doing fine??? Maybe the pain is something that comes and goes - I hope it will diminish.
Thanks so much - xoxoxo Christine
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I am wondering if the Vit D (4500 a day) and magnesium is helping me. I started the Armidex 1/1/11 and so far no problems.
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Valgirl
I'm sure it is helping - are you also taking Calcium to balance the magnesium - most vitamins have a ratio of 2 to 1: for example I take 1,200 calcium/600 magnesium. Have you had a fitamin D blood test - and are you taking VitD3 ( the best form to absorb)? Wondering why you're taking such a large amount?
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Wenweb: No, I am not in a study but if I have to keep going for much longer on this stuff, they make have to do a psychological study on me when they lock me up!
Frankly, I don't think my bones are going to keep holding up because I get no exercise except for running errands and I wake up each morning with pain from my hands to feet. But....Onc thinks I'm doing great! If it's up to him I'll be carrying a bottle of Arimidex when they put me in the coffin!
I can hear him now as he looks at me lying so still "Well, I guess you can stop the Arimidex "now"!0 -
Medigal--have you asked your onc to show you research that supports his plan?
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Medigal
At least you have a sense of humor about it :>) I recently received the results from my first DEXA after being on A for a year, and the bone density in my hips is down 5%. I'm really bummed about it since that was my biggest concern in the first place!!
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I'd be interested in that research as well.
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At my med onc appointment last Friday the nurse, as usual, asked about numbness, and I told her I have a lot more numbness and tingling in my hands now than a few months ago, to the point it wakes me up at night and sometimes makes it hard to type and write. My Med Onc actually said to me that Arimidex does not cuase that kind of thing, it can cause trigger finger, but not carpal tunnel type symptoms! WTF??? That's not what my drug info sheet says. Any one else's Med Onc saying this?
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Mainer, my onc. said the opposite after I mentioned my neuropathy was coming back last summer -- he said that the neuropathy can increase with A -- and that was certainly my experience. But it's not something that affects a large number of women and that may be why your onc. doesn't know about it. I first got it on Taxol, then it was going away as I went into rads -- and then I noticed it started increasing again after I started on A. Grr. Good news is that it abated quite a bit over the last 6 months, although it leveled off & seems to be staying as is now -- but it's very tolerable. Show your dr. your drug sheet. I suppose they can't know about every side effect from every drug but you'd think they'd all know about this.
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Are you kidding?? Ask him for research? He answers every question with "Stay off of that internet!" Those groups just keep you confused!" He figures you all are putting these things in my head or I would not bother him with questions. He definitely does not like the idea I read and post in these bc groups and seems to have a low opinion of them. I think his problem is he knows I would not be asking all this stuff unless I got something off a bc group. He's right about that. Practically everything I learned about my own diagnosis and Arimidex came from kind people in these threads who helped me learn.
Want a laugh? I have a VP Shunt in my head from a cerebral aneurysm I had several years ago. It has a tube that goes from inside my head down to the right side of my breast. He was examining me one day and when he felt it he thought it was a new type of tumor! "What IS this?" he yelled out. "What am I feeling here?" I told him it was the tubing from my VP Shunt that should be listed in my records. Well! Next visit he felt it and believe it or not he actually said "When are you going to have this thing removed?" I told him 'NEVER!" "Unfortunately, it's in there for life!" My DP was in the room and could not believe any doctor would think a VP Shunt can be removed! And you really want me to as "him" questions? He actually came highly recommended to me when I first moved here so he must be a good Onc (I hope!)
So far I am either still alive are you nice gals are talking to a "ghost"! 0 -
NatureGrrl, I didn't have chemo, so my Med Onc said it can't be the Arimidex. Gonna have to dig out that info sheet she gave me 3 years ago and show it to her, I'm sure it said carpal tunnel and numbness of the hands and feet were side effects.
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Medigal,
Has Dr. Strangelove returned in the guise of your Onc.? I'm sure that he is a competent doc, but question his abhorrence of the internet. I, too, have learned almost everything I know about bc from this forum, and have basically become my own case manager.I hope that will change when I see the new Onc. tomorrow. My last one was a rather dim stewed eggplant, and I had to tell her what tests I needed. She refused to order a bone scan...
Seriously, like several others, I too am curious about the length of time you have been taking Arimidex, as most of us have been told that it was a 5-year stint.
paamboli
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It is still such a new drug that they don't have studies that say definitely what the timeline should be after 5 years. They base the 5 years on studies with tamoxifin (which works in an entirely different way). My oncologist says that if a patient is young(ish), has a more aggressive tumor, doesn't have bad SE, bones are holding up etc. etc....right now he would recommend up to seven years, but not beyond. HOPEFULLY some of the long term studies will be done soon (they should be), so we are not all just guessing!!!
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Paamboli: He's more like Dr. Strangebrain but I really think he knows what he's doing. The doctor that recommended him and his cancer Institute said he was the best I could find any place and was very insistant that I go to "him". He, too, was a very strange doc. KY seems to have a lot of them! He said he had taken a liken to me because I was a very special person to have survived my life and he was determined to find me the best doctors in town to take care of me. It was like I didn't have a choice but I must say the doctors so far all turned all to be great. My Onc just has some unusual ways about what he wants to do. I am getting concerned about being on the Arimidex so long even if my bones are holding up so next visit I hope to make him discuss this with me and not brush me off. I just can't find any info on the internet to show him that I "must" stop. Any one I call tells me no one really knows how long it is safe to keep taking it. I even called the makers of Arimidex but they said there is no research yet to show if it is safe or not after 5 years.
I am watching the internet to see if more news shows up. If any of you read or hear anything about taking later than 5 years, would you please PM me and tell me where it is? Thanks so much!
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I don't think the issue is whether it's 'safe' or not....it's whether if it continues to be effective (with tamoxifin I believe if cancer cells are still lurking, they figure out how to get around the drug after 5 years, so it is not effective after that point...hence taking it has no purpose after the 5 years).
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This is from Q&A on BreastCancer.org
http://www.breastcancer.org/news_research/ask_expert/12_2010/q29.jsp
and this
http://www.breastcancer.org/news_research/ask_expert/06_2010/q01.jsp
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notself: Thanks for the two links but the second one especially just basically still says it's up to the patient and doctor if they want to continue and know the risks. My concern is that there may be "unknown" risks for continuing longer than 5 years and how can we make a true judgement if we don't know what the "unknowns" are. This is really disturbing to me.
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This is new on WedMD - Breast Cancer Health Center.
reast Cancer Survivors May Face Early Hip Fracture Risk
Report Raises Questions About Breast Cancer Treatment Risk
By Salynn Boyles
WebMD Health News Reviewed by Laura J. Martin, MD
Feb. 2, 2011 -- Breast cancer survivors may have an increased risk for hip fractures years earlier than other women even when they don’t have osteoporosis, a new report suggests.
Researchers say the combination of chemotherapy and other treatments such as aromatase inhibitors can lead to rapid bone weakening that may not be easily identified with bone mineral density testing.
In the February issue of Clinical Cancer Research, researchers reported on six hip fracture cases occurring in breast cancer survivors in their 50s treated at Northwestern University’s Bone Health and Osteoporosis Center.
Only one of the women had osteoporosis. The other five had some evidence of bone thinning call osteopenia, but not enough to warrant treatment with osteoporosis drugs under current guidelines, says Beatrice J. Edwards, MD, who directs the center.
“This certainly raises the concern that breast cancer survivors who are at risk for fractures are not being identified or treated,” Edwards tells WebMD.
Early Fracture Risk Explored
Roughly 200,000 new cases of breast cancer are diagnosed each year in the U.S., and about a quarter of them occur in women who have not yet reached menopause, Edwards says.
In these women, chemotherapy-induced menopause and other treatments have been associated with bone loss.
Aromatase inhibitors, which are now widely used to stop estrogen production in postmenopausal women with estrogen-positive tumors, are also known to weaken bones.
The average age of the six women studied was 53, and all had been treated for early-stage breast cancers. Five of the six had taken the aromatase inhibitor Arimidex.
In an effort to better understand the early fracture risk in breast cancer survivors, the Northwestern research team also examined reports submitted to the FDA’s adverse event reporting system.
Of 78 fractures among women between the ages of 30 and 64 linked to breast cancer treatment, 19% were hip or femur fractures.
Expert: ‘Aromatase Inhibitor Risk Known’
Edwards says the increased use of aromatase inhibitors may lead to a big rise in early fractures among breast cancer survivors in just a few years.
Charles L. Shapiro, MD, who directs the breast cancer program of the Ohio State University Medical Center, says the risks associated with aromatase inhibitor use have been well reported.
“I’m not really sure what this study of just six patients tells us,” he tells WebMD. “We have known that aromatase inhibitors are associated with fractures. The women in this study were very young, but that doesn’t really tell us much about the overall risk in younger women treated with these drugs.”
Shapiro says women who take aromatase inhibitors should be closely monitored for bone loss, but he acknowledges that this isn’t happening enough.
“Bone health often falls through the cracks, so it may be up to the patient to make sure someone on their health care team is monitoring this,” he says.
He adds that breast cancer survivors on aromatase inhibitors should have a bone density test every two years. They should also take vitamin D and calcium and osteoporosis drugs, when clinically indicated.
“If this isn’t happening, the patient should definitely ask why,” he says.
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pj: Thanks for the post. I respect WebMD. I already have osteopena in one of my hips but my Onc isn't concerned because it isn't getting worse. I take calcium (when I can due to constipation problems) and Vit D3. This year's density test is going to reveal a lot about whether I can continue Arimidex longer. Appreciate the info.
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I started out (pre BC) with osteoporosis and was taking (generic) Fosamax. It wasn't making a difference at all. I convinced my onc (#1 at the time, am now seeing onc #2) to order a Reclast infusion. That was in September 2009.
As of now, I have had two Reclast infusions (Sept. 2009 and Sept. 2010) and recently had a bone density test, the first since my bc diagnosis and subsequent taking of Arimidex. Amazingly, one of my measurements (the left hip) went from osteoporosis to normal! The other measurement (the spine) improved very marginally. I'm no longer taking Fosmax, just having the annual Reclast infusion.
Insurance might be an issue for Reclast infusions. I had a bit of a problem in 2010 getting them to prior auth it but eventually they relented and authorized it.
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Unless there are clear understandable reasons to continue Arimidex past five years, I will stop taking it. I am not certain I will even make it to year 5.
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Hi Ladies,
I need some help. I've been taking Arimidex for about a year now and the se's are getting worse. My feet and legs ache so much they throb at times. I wake up (when I can sleep) feeling like my hip is breaking and now the pain has started in my wrists and hands. I'm so tired all the time, and the last few days I feel like I'm losing my mind because I cry for no reason at all. What can I do to help offset the se's?
Thanks for your help, Susie
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Hi all
I have been on arimidex for 5 days now, don't feel anything. In fact I am feeling better going off the tamoxifen. No aches, no pains, no hot flashes, sex drive is perking up, memory is still questionable, and energy levels good. I was on tamoxifen for 3 years and 1 month. I knock on wood that I will continue to handle it. I also take calcium and do step aerobics 2x a week. Thinking about adding strength exercises, but not quite motivated to do that yet even though it will strengthen my bones. Part of my determination is that chemo sucked so bad, anything is better compared to it. And I take it a day at a time. I go thursday for my annual mammo and checkup with my surgeon.
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Because of the Major Depression which developed after 4 months on Arimidex, my new Onc is switching me to Tamoxifen. Wish me luck! The scary suicidal thinking which I was experiencing vanished into thin air a week after I stopped taking A.
I did get one nice surprise, though. At 71, with spinal stenosis and very little exercise, my bones are holding up extremely well so far, at 3x better than most women my age. I guess it must be my genes...
paamboli
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