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BECKYANNE1's Photo BECKYANNE1 SparkPoints: (305,838)
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12/23/16 7:08 A

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Mater-I've been on and off of it, but I'm not sure. I've been off of it for a couple of months and just went back on it. I've had so much joint pain. I'm trying to see if the meds make it worse or not. I never heard about the hair thinning, but maybe but I have lost hair. I just thought it was maybe an age thing. My hair changed after I got sick before I had BC. Hopefully someone here can answer your question.

Becky


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MATER88's Photo MATER88 Posts: 2,418
12/12/16 12:48 A

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I have been on Arimidex for about four years. My oncologist said I would have to stop taking it after five years because of osteoporosis. The last time I had a bone scan it said I still have osteopenia. My question is: Has anyone had any problems with hair thinning while on it? If so, does it get better when you stopped taking it? My biggest problem with the Arimidex is the night sweats and my memory. It's terrible but my oncologist says that is definitely from the Arimidex.


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CD4212235 Posts: 4,152
10/5/14 1:52 P

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I went to see my oncologist last Wednesday and she was concerned about my broken foot and wants me to have another bone density test done. I had one last year and they said it is recommended every two years so I am waiting to be approved by insurance. They think Arimidex could have caused bone loss. Also I have been having lots of joint and muscle pain. So they told.me to stop the Arimidex for two weeks and see if any change. If I it gets better then they want me to start a new medicine. I don't remember the name but they said we will try and if I have problems then we will go to the third choice.
So in two weeks I should know.



CD4212235 Posts: 4,152
10/5/14 1:51 P

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I went to see my oncologist last Wednesday and she was concerned about my broken foot and wants me to have another bone density test done. I had one last year and they said it is recommended every two years so I am waiting to be approved by insurance. They think Arimidex could have caused bone loss. Also I have been having lots of joint and muscle pain. So they told.me to stop the Arimidex for two weeks and see if any change. If I it gets better then they want me to start a new medicine. I don't remember the name but they said we will try and if I have problems then we will go to the third choice.
So in two weeks I should know.



MOM2ACAT's Photo MOM2ACAT SparkPoints: (0)
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8/8/14 3:45 P

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I also started out with Tamoxifen, about 11 years ago, but instead of having my ovaries removed, I was put on Lupron injections to put me into menopause. Once I went into menopause, I was put on Arimedex. I was only on it for 2 years though before my cancer returned and then I was put on something else that I can't recall at the moment. Anyway, while I was on it, I didn't notice any bad side effects. I did have some mood swings, but that could have also been from the Lupron or being in menopause.

I'm on Aromasin and Afinitor right now; Aromasin is similar to Arimedex. This time, I am having an increase in joint pain, but I don't know how much of that is just from the meds, and how much is just because of the fact that the cancer is in my bones now.

I wish you all the best Dee; I know it's not an easy decision to make when you have to think about quality of life too. It might not hurt to ask to get a second opinion about other treatments available.

Edited by: MOM2ACAT at: 8/8/2014 (15:46)

My name is Shari; I have been a Sparker since July 2006, I am now in hospice care for metastatic breast cancer, but I'm not letting cancer stop me from Sparking!

Promise me you'll always remember: You're braver than you believe, and stronger than you seem, and smarter than you think.

A. A. Milne



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BECKYANNE1's Photo BECKYANNE1 SparkPoints: (305,838)
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8/8/14 8:14 A

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I started on Tamoxifen and then went to Arimidex when I had my ovaries removed and went into menopause. fter a bit, I had very achey joints. Went back on Tamoxifen. I have gained 10 lbs since last Fall and haven't been able to take it off for the life of me. My body hurts, but achey joints is not listed as one of the side effects. My moods have been awful. At one point I wanted to go back on anti depressents again. Haven't yet though. I see my Oncologist in a couple of weeks and am going to discuss this stuff with him and see what he has to say. I'm also really disgusted with the way my body feels taking these meds and would like to know if it's the meds or just me.

Please keep us updated.

Becky


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KRKNOCKS SparkPoints: (181,226)
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8/8/14 8:09 A

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It gets better with time. At least for me it did. I will find out what my doctor recommends by the end of the month. If your doctor is saying 10 years for you then the study results must be completed. I know right now with a broken foot it is difficult but my advice to you is to keep moving every day if possible. It sure helps with the stiffness, weight gain, and mood swings! Good luck to you. Hope you are back on your feet soon and can start moving again.

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CD4212235 Posts: 4,152
8/7/14 7:38 P

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I too had weight gain which I associate with being on Arimidex. Now I broke my foot so my exercise is going to be cut drastically. I have only been on Arimidex for about 9 months. So only time will tell if I have any more problems. I was told I need to be on it for 10 years.

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8/7/14 8:56 A

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Has anyone heard the results of the 5 year vs 10 year study on Arimidex? I am waiting to hear if my Dr is going to keep me on another 5 years based on study results. Just finishing up my 5 years and looking forward to getting off this stuff.

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CARPROTH's Photo CARPROTH Posts: 19,335
3/26/12 2:57 P

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Cindy,

I've already documented my weight gain on aromatase inhibitors. No problems with cholesterol, but blood pressure went from a normal 118/78 to a new normal of high 140s/mid 80s - unacceptable in my book. A big YES to mood changes - a return to the continuous-PMS-type moods of early menopause. Plus I've got increased difficulty sleeping, and my once only sporadic and light psoriasis has turned into a glacier trying to take over my entire scalp! From pre-cancer no proscription medications, I've gone to the aromatase inhibitor and 4 additional prescriptions to attempt (unsuccessfully) to deal with the side effects: 1) hot flash pills; 2) anti-depressants; 3) psoriasis control (at a co-pay cost of $100/month); and 4) sleeping pill. If I'd continued, would have needed #5, blood pressure.

After my last attempts with Tamoxifen, my oncologist and I decided to stop all endocrine-affecting medicines alltogether. My oncotype dx score was low, so the probability of a recurring tumor only increased by about 4% when I stopped. It's only been one week off (after 18 straight months on), but am already feeling less bone and muscle painand have stopped the anti-depressants.

I definitely wish you better fortune in your long-term treatment!
Carol

Edited by: CARPROTH at: 3/26/2012 (14:58)
Carol


Shoot for the moon. Even if you miss you will land amongst the stars.


Nothing changes when nothing changes.



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CYNTHIAHOARD's Photo CYNTHIAHOARD Posts: 939
3/26/12 12:16 P

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I am glad to see that others have had problems with weight gain with the Arimidex. I have been very bummed out because I am maintaining my exercise regime and watching what I eat and the weight just keeps going up. GRRRRRRRRRR.

I wondered if anybody else had an increase in their choelesterol on arimidex?

What about mood changes? I was already being treated for depression and ithas gotten worse.

Also has anyone had problems with changes in their vision - blurry ness, difficulty reading.

I would appreciate any insights. Cindy

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KRKNOCKS SparkPoints: (181,226)
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2/22/12 7:28 P

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I was diagnosed almost 3 years ago with lobular breast cancer. I underwent a bilateral mastectomy and had reconstruction. My oncologist put me on Arimidex and I have been on it for about 2 1/2 years now. I gained almost 20 pounds (of which I have taken off 10 since Jan 1, YAY!) emoticon I have not had the problem with arthritis but walk every day for 3 to 6 miles. My mom is on the same medicine and has gained some weight, but I don't think she has had any problems with arthritis either. I have talked to another person who was on it for 4 years and her arthritis got so bad she went off it and now feels fine. Cancer stinks but I figure I have to do what I can to keep it from recurring and still maintain my quality of life. It is a choice we all have to make to do what we feel is right for our health.

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JESSIG5's Photo JESSIG5 Posts: 2,418
2/21/12 2:59 A

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Since my cancer was stage IV, triple negative, there are no follow-up cancer drugs for me to take and my chances of re-occurence are very high. However, I have all of the side effects you are discussing: joint pain, weight gain, high blood pressure, cholesterol problems, etc. All I can do about it is to do the best I can with diet, exercise, and meds for the high BP and cholesterol.

My daughter was on tamoxifen for five years and for more than four years since then has been part of a clinical study for a new drug which would be taken for five years after the tamoxifen. She also has the exact same side effects.

According to the BRAC test, our cancers are not related even though we both had breast cancer. Even our reactions to the chemo were different. She vomited for two days after each treatment but I never had any nausea at all (same drugs in the beginning). However, with a destroyed immune system, I came down with four major infections and was hospitalized for weeks and in rehab for months because I couldn't walk. I lost all of my muscle strength while I was unconscious in intensive care and could not even turn over in bed. It was 11 months between the beginning and end of my six chemo treatments.

Like they say, be careful what you wish for. The vomiting was the side-effect I dreaded the most.

I think what I trying to say is that we cannot predict the future; all we can do is be informed of all of our choices and make the decisions that we feel are right for us individually , and above all, just trust in God to see us through it all.

Edited by: JESSIG5 at: 2/21/2012 (03:05)
One day at a time; one pound at a time.

DEETHEDIETITIAN's Photo DEETHEDIETITIAN Posts: 356
2/20/12 6:38 P

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Mauriza,

Thanks ... I look forward to seeing what your FB people say ~ Carol's response is exactly what I am looking for ~ I am fairly certain that I will not be taking the medication... Instead I will exercise and lose weight!

Dee

It is not enough to simply show up. You need to step up for results.... keep on stepping! Dee


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DEETHEDIETITIAN's Photo DEETHEDIETITIAN Posts: 356
2/20/12 6:36 P

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Carol,

This is precisely what I am talking about!!! Not only would it affect quality of life -- and for me -- exercise is nature's prozac-- it would affect my weight and my mood as well as increase my risk quite significantly according to all of the government reports (Healthy People 2020) -- for diabetes (which runs in my family), cancer (which runs in my family - including lung cancer, breast cancer, colon cancer and leukemia) and heart disease which runs in my family -- my brother passed away from a heart attack last monght!! So -- obesity increases the risk of all of those potential diseases (might I add here that heart disease is the number one killer of women, not cancer)... ..then add to all of this -- the risk of osteoporosis with the medication... all of these negatives to increase my odds by 10 - 15%... and there is NO guarantee of that!

Just doesn't make sense -- plus you make a really valid point... IF the cancer does come back I would want to be strong and fit... not obese, osteoporotic and potentially with diabetes and high blood pressure -- yeah... exactly!

I will talk with my honey about this and make a final decision. If I should decide not to take any medication -- then I will most definitely need to lose this weight and get into better physical shape!

Thanks for sharing!
Dee

It is not enough to simply show up. You need to step up for results.... keep on stepping! Dee


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CARPROTH's Photo CARPROTH Posts: 19,335
2/20/12 6:14 P

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Dee,

18 months ago I had a lumpectomy for a 2.5 cm Stage I hormone positive invasive tumor. I followed with brachy (internal) radiation and my oncotype dx score was so low, my oncologist and I agreed that virtually no benefit would be gained by subjecting my body to chemo. I then started on long-term aromatase inhitibors - so far have tried and discarded Arimidex, Aromasin, and Femara which all had serious side effects (weight gain, 20 point increase in BP reading, bone and muscle pain, insomnia, a psoriasis glacier which started moving across my entire scalp, skin that would bruise and break at the slightest touch, and bone spurs on my spine that weren't there 18 months ago). Some side effects were worse with some drugs, but all were present with all three. I am now on my last option, Tamoxifen, and will try it for four more weeks before I go back and talk with my doctor again. So far negative side effects are at a minimum, but I've only been on it 10 days and I've learned many of the side effects only show themselves after the drugs have built up in your body to a certain level.

DH and have had some long talks and I've decided to give it the rest of the six week trial, but if the same side effects manifest themselves, I will opt to go off endocrine therapy all together. No only is quality of life affected, but prior to going on these meds, I had the bone density of a normal 38 year old woman (that was at age 64), did 60 min. of cardio per day, and ST 3x/week. Now I have trouble doing one total body set per week, and the bone and muscle pain cuts my cardio way down. Statistically my chances for a recurrance are low, and if should come back, I would rather face it with a strong, healthy body and start active treatment again. I would never advise any woman on her treatment path, I can only give the decisions I have reached concerning mine. Whatever you decide, I wish you health and strength.

Carol



Edited by: CARPROTH at: 2/20/2012 (19:20)
Carol


Shoot for the moon. Even if you miss you will land amongst the stars.


Nothing changes when nothing changes.



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MAURIZIA's Photo MAURIZIA Posts: 15,605
2/20/12 5:40 P

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Dee, I spent time with a breast cancer patient today asking these same questions. I had planned to post these questions. I have posted it on our FB page. Will share responses with you, if you'd like.

Mauri, EASTERN TIME ZONE, NEW ENGLAND

"Start by doing what's necessary; then do what's possible; and suddenly you are doing the impossible." - St. Francis of Assisi

"Love yourself. You are the ultimate act of creation, fashioned by the hands of a Divine Artist." - fCheryl Richardson, rom GRACE CARDS (a 50 card deck)


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DEETHEDIETITIAN's Photo DEETHEDIETITIAN Posts: 356
2/20/12 1:06 P

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I know I've asked this question but I need to ask it again ~ I thought I had made my mind up and now I am not so sure.

I just got back from my oncologist office (I really need to find a new doctor because this one has no bedside manner, no patience and no empathy - oh and he does not actively listen)...

Anyway -- here is my scoop....
I had ER/PR ++ breast cancer (DX 4/15/2010)...It was stage I and it had not spread to the lymph nodes... none the less I had a double mastectomy and I chose to do 4 rounds of chemotherapy (preventatively)... then they suggested Tamoxifen which I was not thrilled about but I took it anyway - knowing that there was a slight increase in the risk of uterine cancer.

Lo and behold... a year after taking Tamoxifen my uterine wall was twice as thick as it should have been and my doctor suggests a total hysterectomy. I did that too.

Now he is suggesting that I take Armidex (for five years -- as he said the clock starts over when you switch drugs).... I've heard that Armidex causes serious arthritic pain... I already have a little bit of arthritis in my left hip... I imagine that is where I would feel it the most and it can be limiting.

While on Tamoxifen I gained 30 pounds and if I were to start taking Armidex and I was unable to workout my usual workouts due to the pain it may cause...; I would potentially gain more weight.... anyway... I am stuck on my decision about taking this medicine.

He says it will improve my chance of not getting breast cancer by 10 - 15% ...I don't know. Is that good? Is that worth it for the potential loss of quality of life?

UGH!

For those of you that are taking it or have taken Armidex... please share your experience.
His attitude is try it and see.... ugh. I need a new doctor.

Thanks,
Dee

It is not enough to simply show up. You need to step up for results.... keep on stepping! Dee


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