Arimidex - Coping with the SE's
Comments
-
Doxie
don't be embarrassed - it is SUCH a problem for everyone on an AI
Honest, the cocoa butter is MILES more moisturizing than the coconut oil. I still use the coconut oil all over as a moisturizer - in the winter I was using cocoa butter too. I started with the coconut oil "suppositories" - cococa butter is easier, too.
0 -
Fitz33
I am extremely concerned about the Als. I have been through menopause ( 13 yrs ago at age 41) so I would not look forward to that . I have lived with joint pain and have bone issues. I still believe I would tolerate *those* SEs of the Als, but at this point, it looks like I may be going into osteoporosis. I have already broken 3 bones with osteopenia and my density scan results over the last several yrs have a very bad comparison. The QOL is all important when it comes to breaking a hip or spinal fx. This is of great concern to me.
I will get my most current results next week, but it really doesnt look good.
The biophosphates can be bad for thoe of us who already have weak bones!. I was once on calcitonin ( doesnt do much) but later on actonel until the warning of many ppl. having very sudden femur bone breaks because of it.When it comes to cancer or the tx, my goal at this point ( because its early stage) is to still be ' in the game'. For me , that means working, shopping , enjoying my granddaughter etc... one can only hope. I am not fighting for my life - at least not now. My bone health is very important and exercise is extremely tough and soemtimes dangerous once your bones get to this point.
I dunno'. The risk to bone health just makes the other SE look like a walk in the park by comparison
0 -
Wow ...that is very scary Mostlysew.
Thx for the info - I appreciate it.
0 -
schatzi ...you might wnat to try TUMS . Then , also D3.0
-
purple....TUMS...for calcium you mean? I started those ages ago but they gave me indigestion. LOL Truly they did!
0 -
purple....TUMS...for calcium you mean? I started those ages ago but they gave me indigestion. LOL Truly they did!
0 -
fitz-so sorry you're having problems, it's understandable that you're feeling discouraged. I've only been on AI for 2months and the only se's I have so far is joint pain and hot flashes. I've been told the se's appear between 3 and 6 months-hoping I don't get any more.
Hope you find some relief soon.
0 -
Hi Ladies, This is only my second post and I am trying to understand this website -what a puzzle! Up until now I have been the good patient. I thought that I had made my peace with the side effects of Arimidex. Not so. My friends would describe me as"perky" and showing no signs of pain or discomfort. Of course, they are not in bed with me at night! My husband and daughter understand each of my issues.
Like most of you I am very concerned about the long term effects of this drug. I have refused bisphosphonates. I took the route of Calcium, Strontium, Vit D and this may surprise you - 10 prunes a day. You may laugh but my bone density improved over the course of a year. I am anxious to see what the next scan will show because I have added a lot more exercise.
I seem to go through cycles when the Arimidex builds up in my system. The last one was the worst. I would wake up unable to move both hands and wrists. Ached all day. Lots of long bone pain. Foggy thinking. Basically, I was good for nothing. QOL -there was none!
I find it so hard to take a pill that controls a hormone yet is not measured by a blood test. I find it hard to take a 1mg pill that controls a hormonal level for a 120 lb woman as well a 200 lb woman. It just doesn't make sense. My Onc can't even give me a logical answer. She is kind and just nods her head and says " I know it's frustrating." No, it is not frustrating-it is unacceptable.
I find clarity and joy swimming at the "Y" -When Arimidex took that away from me a line had been crossed. QOL has become a real issue. Six hours a week I am exercising, I am happy and now this medicine is robbing me of this. Not on your -excuse me My life. I just had some lab work and soon I'll be meeting with my Onc.
One of the sad parts of the last few weeks was the loss of my hands and wrists. I facilitate a knitting group. I knew how much knitting helped me get through the hard times. Right after rads my DH encouraged me to start a group for women at our church. A year ago we met with 5 women and last week we had our 1st anniversarywith 20 women on our roster. I don't think anyone noticed that I didn't knit last week because we were so busy recalling the joy of a good year.
I just wanted to add that I read all of your posts -words of wisdom to be digested over time. Thanks , Ladies.
0 -
Hi Knitgal,
I am so sorry that you are having such a rough time! I think that you should talk to your onc about taking a break and then trying another AI. After a year and a half on Arimidex, where I did find the arthritis to go up and down, but get progressively worse, I finally took a 3 week break. I just started on Aromasin this week. I also gave up dairy ( most days anyway).
The break was great - 2 weeks out, I started to notice a big difference. After one week on Aromasin, it is probably too early to tell if this drug will be better, but so far so good.
You shouldn't suffer so much without trying something different. Even Tqmoxifen is a possibility for you, which supposedly has less joint pain.
You definitely sound down ( and with good reason!). Please seek help and try something different.
Good luck!, Beau0 -
I haven't had any bone pain on arimidex. I wonder if it has to do with the daily zumba classes, not sure, but the hot flashes are day and night, and some times intense, and again very dry female area, so I got some numbing ointment from the doctor, and that makes for a happier me and hubby
I don't take claritin, unless my allergies are acting up, but I did take them when I had the nuelasta shots in the fall, and had no bone pain
0 -
Thanks for the kind words, Beau. Actually, the first 9mos on Arimidex were a breeze. I only had Plantar Fasciitis and I was able to alleviate that problem with water aerobics.
Depression hasn't been an issue but I am a realist. I definitely will consider all options with my Onc. I truly respect her and I know that she is in a difficult position. There are no guaranteed results with cancer treatments only possibilities. My issues are more like Purple 32. I am 65 and very physically active. I am the typical multi tasker. Just retired but my job entailed walking 2-3 miles a day. The cyclical fatigue of Arimidex has made that more difficult. I still like to kayak and tennis is nice with the right partner. Swimming surrounds me with so many wonderful people. And yes, there is Water Zumba. My bones and other organs are just as important to me as my breasts. You need your heart, liver and kidneys to keep it all going.
I don't think of cancer on a daily basis. I am usually busy living. My friends, family, and honest to goodness even strangers seem to encompass me in a good life.. I think that I will take all under advisement and then let my mind and my heart come to the right conclusion.
0 -
Knitgal: I too love knitting and also crochet. When I broke my wrist it was very difficult to not be able to do either for a while. I am also a long distance runner and the doc didn't want me running for a few weeks either. Boy, was I crabby. Couldn't do either of my favorite things.
I too don't understand that the AIs only come in one strength. After all, someone who is 76, can't possible have as must estrogen as a younger woman.
As I posted on another thread, I quit taking the Aromasin in February due to very bad SEs and worry about my bones and heart. I am 76 and according to the doc my bones are of an 85 year old. Since I love to run/jog so much, it was killing me to not be able to do much on Aromasin due to the horrible bone and muscle pain. I also worry about heart problems which can occur when you are low on estrogen. Women get many more heart problems after menopause - that tells me something. And then my Afibs became more frequent. Then I ran across a Danish study which said women over 70 get very little benefit from the SE's and it is felt there are really not necessary at all (for 75 or over women)
That clinched it for me - (but, I'm not trying to influence anyone else, we all have to make the decision we are comfortable with)
PS Also wondering why some people do better on one AI than another. Since they all do the same thing wouldn't the SEs be the same on all of them? Or is the problem the different fillers?
0 -
For anyone just starting: get a bone density test (DEXA) before you start. Although most doctors have patients get another one every two years, I asked to get one every year, so that if the numbers dropped I could address it immediately. If you are 'iffy' about taking it because of bone issues, that might be something that would give you some peace of mind. Not everyone suffers bone loss (I would say that most people don't), so you'd hate not to give yourself the anti-cancer protection if your bones aren't going to be affected; but if you are getting the DEXA once a year and do see a drop, then you could quit or try something else before things would get out of control.
0 -
Knitgal = not sure what you mean by "loss of hands & wrist" - joint pain??? I went to a physical therapist who treated me & gave me wonderful exercises that took away the pain - ALSO, WRIST SPLINTS, WRIST SPLINTS, can't emphasize enough how much they help when you are having trouble with wrists, hands. I haven't needed them for years - but they were very important dring my first year.
PRUNES - thanks to ruthbru, we're ALL eating our prunes. I actually like them, with lime or lemon juice added.
0 -
I am trying to make my sister (who is visiting me) eat prunes for some her digestive problems. You'd think I was making her eat poison!!! I would not give her a glass of wine last night until she ate her prunes!
0 -
Good advice Ruthbru - everyone should get that. My onc did admit that bone loss is a major SE of the AIs. But of course, we all react differently to medications. I once passed out on a very low dosage of Metoprolol - so I guess I'm super sensitive to meds. Not everyone is.
0 -
As far as the news on the calcium this was my intake of what I did read. It seems those who were in these test also had higher than normal levels of calcium in their blood. My Dr. does check my calcium level every time so I would hope that others get there's check also. Now I just need to remember to ask what my levels of Vitamin D and Calcium are.
Here's my latest worry. I had what I thought was the throw up bug Friday morning until I broke out in hives. yeah great...what caused my latest reaction we have no idea. Urgent Care Dr. said it was a virus and good luck on the cause of the hives. They pumped we full of fluids and medicine and sent me home four hours later. So here I sit wondering..could it be the arimidex, Advil, blood pressure medicine, or the fact I had forgot to put my Zyrtec in the pill box this week and spent a lot of time out side. grrr.
I think I now have arthritis in my trigger fingers I had surgery on. Knuckles hurt to touch them still. I had days they don't bother me but the humidity is up this weekend and they have been throbbing along with the hand that hasn't had the surgery yet. I feel like I am darn if I do and darn if I don't.
0 -
ruthbru...I am eating my prunes ...10 a day right? I love them but I forget why I am eating them! I can't find your post where it explained why!
0 -
Kitty...jeez you are getting it from all sides....hope things have levelled off by now...I can see the humidity making things worse.
As for LE...I was working in the garden all weekend and forgot my sleeve..actually I didn't really forget just that even with my gloves on, I was afraid of getting it dirty and sweaty and I don't have a spare. I am paying the price today!
0 -
Prunes are a great source of calcium for the bones (I eat one serving a day, which is 5-6 prunes). Also are great for colon health. Helps keep everything running smoothly there and my GP commented that if everyone ate a serving of prunes a day, he would see very few cases of colon cancer!
0 -
Kittydog
so sorry to hear you're having a combination of so many problems. I've got a friend who had a terrible reaction to high blood pressure meds - it was HIVES all over her body. Yuck. Have you changed that medication recently?
0 -
Dear ladies,
here is the text:
Can Prunes Reverse Bone Loss After Menopause?
ScienceDaily (Jan. 11, 2007) - Could a handful of nutrient-rich dried plums each day help keep the doctor away by actually reversing bone loss in postmenopausal women with osteoporosis or osteoarthritis? A unique clinical study under way in the Florida State University College of Human Sciences means to find out.
If one is interested in I can copy and send as PM .
Greetings
Usha
0 -
I'd love to see it since I am a prune cheerleader
.I am also mourning the loss of the previous format!!
0 -
Slousha, I'd like it!
0 -
I'll let you girls read it all and hope you report back with a condensed version
I LOVE prunes altho I wondered about the sugar in them...natural or not, it IS sugar!
0 -
Re: the prune thing. I've been skeptical about this, but I might have to change my mind.
First, though... about that catchy title: "Can Prunes Reverse Bone Loss...". It's from a press release out of Florida State University (http://fsu.edu/news/2007/01/11/osteoporosis.study/ ). The very same title is all over the internet, with most of the links tracing back to the same information out of FSU. The press release touted a clinical trial being done there by Bahram H. Arjmandi, the chief proponent of the prunes-for-osteoporosis theory. The trouble is, that press release came out in January 2007 -- more than 5 years ago. According to the press release, Arjmandi was doing a 12-month study that had the following design:
+++quote begins++++++
"During this 12-month investigation, half the women will supplement their daily diets with nine to ten dried plums, totaling 100 grams. The other half will consume a comparable portion of dried apples, which also have known health benefits. For instance, several studies indicate that a daily helping of pectin-rich apples can help lower triglycerides and cholesterol levels," he said.
Participants in both treatment groups will be required to take 500 milligrams of calcium and 200 units of vitamin D daily; undergo blood and urine testing every three months; and have their bone mineral density measured at the beginning and end of the study using dual-energy X-ray absorptiometry, or "iDXA" (eye-DEX-uh), the latest in whole-body scanning technology.++++++++quote ends++++++
I actually found the results of the study, published in the British Journal of Nutrition in 2011. Only subscribers are allowed to see the full article. Here's the citation and abstract from PubMed (http://www.ncbi.nlm.nih.gov/pubmed/21736808):
+++++quote begins+++++++
Br J Nutr. 2011 Sep;106(6):923-30. Epub 2011 May 31.
Comparative effects of dried plum and dried apple on bone in postmenopausal women.
Hooshmand S, Chai SC, Saadat RL, Payton ME, Brummel-Smith K, Arjmandi BH.
Department of Nutrition, Food and Exercise Sciences, Florida State University, 436 Sandels Building, Tallahassee, FL 32306, USA.
Aside from existing drug therapies, certain lifestyle and nutritional factors are known to reduce the risk of osteoporosis. Among the nutritional factors, dried plum or prunes (Prunus domestica L.) is the most effective fruit in both preventing and reversing bone loss. The objective of the present study was to examine the extent to which dried plum reverses bone loss in osteopenic postmenopausal women. We recruited 236 women, 1-10 years postmenopausal, not on hormone replacement therapy or any other prescribed medication known to influence bone metabolism. Qualified participants (n 160) were randomly assigned to one of the two treatment groups: dried plum (100 g/d) or dried apple (comparative control). Participants received 500 mg Ca plus 400 IU (10 μg) vitamin D daily. Bone mineral density (BMD) of lumbar spine, forearm, hip and whole body was assessed at baseline and at the end of the study using dual-energy X-ray absorptiometry. Blood samples were collected at baseline, 3, 6 and 12 months to assess bone biomarkers. Physical activity recall and 1-week FFQ were obtained at baseline, 3, 6 and 12 months to examine physical activity and dietary confounders as potential covariates. Dried plum significantly increased BMD of ulna and spine in comparison with dried apple. In comparison with corresponding baseline values, only dried plum significantly decreased serum levels of bone turnover markers including bone-specific alkaline phosphatase and tartrate-resistant acid phosphatase-5b. The findings of the present study confirmed the ability of dried plum in improving BMD in postmenopausal women in part due to suppressing the rate of bone turnover.+++++++quote ends+++++++
So... I'm going to take a look at the full paper. Luckily, I still have access through the academic library of the institution from which I retired a few years ago. In the meantime, I might stop by the grocery store to see what they have in the dried-foods aisle.
otter
0 -
knitgal, I noticed that your stats below your posts are missing the grade information. Do you know what grade your cancer was? Mine was grade 1 (see my info below the post) and I was diagnosed a week after I turned 49 over 8 years ago. I refused everything but a lumpectomy and a SNB with just a single node taken out. It's been 8 wonderful years not having to deal with drug side effects or concerns about what radiation might have done to me. No lifestyle or diet changes either - just went on about life mostly as if it never happened (except for yearly mammograms). So, since you're dealing with troubling SE issues and if you also happen to have had a grade 1 tumor, then calling it quits with the AI is probably a very reasonable choice for someone like you. You won't hear that said from too many people here and only very rarely from an oncologist, but it's the truth.
And BTW, I also refused biophosphates 8 years ago. I had a bone density scan done as part of my BC workup and the results showed osteopenia. My PCP tried to get me to take fosomax for that osteopenia but I refused. Over the last 8 years, I've had 2 more bone density tests and the osteopenia has not worsened. I just take a daily calcium/vitamin D combo along with some extra vitamin D.
0 -
Marie, I appreciate your thought process. A lot going on here this holiday weekend. May I send you a PM?
0 -
Hi Otter,
I just want to thank you for sharing your expertise with us all! I gonna get some prunes. best, Beau
0 -
I dislike prunes, but I'm going to go get some and try eating them again. How many do I need to eat a day? My Alk phos is usually higher than normal (not way high) but bone scans show no mets. Maybe the prunes will bring it down. It's worth a shot.
0
![[Deleted User]](https://us.v-cdn.net/6037276/uploads/defaultavatar/nF0ALO3I3QJM7.jpg)
