Arimidex - Coping with the SE's
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I have to buy by myself as vitamins are not permissible for re-imburement in my country as medical norms. Everymonth I spend about 100$ ( Rs. 4000- 5000/-in Indian rupee)) only on food supplement. It is very difficult for me to spare so much of amount from my salary but no way because I just want to enhance my health to some extent. I have almost survived more than 5 and half years as on now. Of course I feel good besides so many problems, I don,t see for the future. I have an opinion that, why should we worry for tomorrow, when we feel good today.
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Hi,
The best B vitamin complex I have found is ' Mega B-Stress'. made by Solaray, which has a timed- release feature. It also contains100 mcgs of Biotin, so for now, I'm not going to buy any more. It is available on Amazon, in health food stores, and upscale supermarkets. Not inexpensive, but I've found that the best prices are online.
Rajkumari- I thought that we were supposed to avoid soy products. Please, someone with more knowledge than I give her advice on this matter. Nobody that I know of in the U.S. gets insurance reimbursement for vitamin supplements. So much for " highly developed countries". Congratulations on your 5 1/2 year survival rate! It's obvious that you are taking extremely good care of yourself, and that all the healthy things you are doing are paying off in kind!
paamboli
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I started Arimidex 4 days ago. Could the pain I am experiencing in my lower back come on this quick from the drug? I can not get in and out of my car, get out of a chair or walk up the stairs. Could this rapid onset of pain come from taking Arimidex? Thank you in advance for your input.
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NancyLA: I'd be letting your oncologist know ASAP about that pain, I'd not think it was from the Arimidex in just 4 days. Possibly you strained it? Please get it checked out.
Paamboli/Rajkumari: I also was told NO SOY (and boy is it in everything, gotta read the labels) with being ER+. I don't have specific information on it though, but yes, I'm avoiding it like the plague. ~juli
Boy this hair thing is ridiculous...you lose it to chemo, gain it lushly back, go on Tamoxifen, NO problems with hair (except it lost its curliness), now bam on Aromasin, losing hair again *sigh*. One gains, other losses...but there could be worse effects, I tell me-self.
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Paamboli/julio212- I just post how I am carrying on. I was told soy protien is good for our cells. During Chemotherapy we lost good cells too while trying to kill cancer cells. I have no idea how far it is good. I got struck with BC when I was 46 without any pain, symtom just with a lump in my right breast. I have a tendency of trusting and listioning to anybody,s suggestion. I always tried with their suggestions on trial basis.If I don,t find it ok, I had just stop it. So these days, I am very lucky to have such type of online friends who are taking care for each and everyone daily, you know i feel I can just carry my life without any medication. This thread is expanding our life.
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Nancy I was told by my phamacist that the Armidex would start working right away when I started, and it did, I too could hardly stand up straight getting out of bed in the morning and had difficulty climbing out of the car (but only when I was a passenger, not driving) In all cases the stiffness only lasted a few moments and though frightening at first didn't impact on on my life any, so I didn't worry about it,
Within two weeks these initial se/s all but disappeared, but then I was already many years post menopausal so my estrogen was probably already low.
It's funny while others have been saying taking hormone therapy made them feel like 90 year old women, here was I feeling like I was back to being 50 again. Getting through menopause the first time wasn't all that easy either,
Kathy
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NancyLa,
Arimidex whacked my gut within 48 hours, so it is possible for it to affect your system that quickly, but with the severity of the back pain you are experiencing, I think juliO212's suggestion that you see your onc is a good one.
I just realized that my rings have gotten tight, and my ankles are a bit puffy. Anyone else experiencing some fluid retention? I'm taking Uva Ursi, which is an herbal diuretic, that seems to be helping. I am definitely beginning to form a love/hate relationship with this med!
paamboli
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I started having pain in my fingers after 10 days. I'm on them for about six months now and the pain is getting worse. I've also developed trigger finger in my left ring finger and I feel it starting in my right ring finger as well. I'm thinking of trying accupuncture. Anyone tried it/? What were the results?
Wow, Kathy, Only two weeks of side effects! You give me hope that they may disappear or at least lessen in time.
I was also told not to eat soy, it helps the body produce estrogen.
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I've been on arimidex for 3 years. This has been the drug from hell on and off. Early on it was the swelling and numbness along with joint pain. The stiffness and joint pain have a tendency to migrate from one region of my body to the other. A frozen shoulder was fun for about a year. My hands and fingers felt like they were asleep half the time and throbbed like a tooth ache the rest. My feet tingled, itched and ached for a year or so. Sometimes I think I kept taking it just to see what and where it would go next. I had plenty of time to contemplate it because sleep was not on the schedule.
The last year, the joint stiffness and soreness hasn't gone away but is either getting better or I'm getting used to it. In the beginning I counted the days (years) until I no longer had to take this drug but now I feel like I can do it. My quality of life is not what it was before BC but it is life and that is the choice we make. I don't know what I'll do if my onc asks me to continue arimidex past the 5 year mark but I'll cross that bridge when I get there. If I remain cancer free for the next 2 years the side effects may lessen with time and it will not be a difficult decision.
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kadeeb -
Thanks so much for your post - you give me hope! I'm just 6 months into my Arimidex journey and I'm just miserable with joint pain, stiffness, flu-like achiness, fatigue, weakness...ugh. Did you find anything in particular that helped you with the pain?
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Good morning Enjoyful (great name!), so sorry to hear about your problems with the A, I hope it's a temporary thing. I checked back and on 10/14 Sunflowers talked about her success with acupuncture ... maybe worth a try, hope you feel a lot better.
Hi Kadeeb, what awful SEs you have experienced, you poor thing, it sounds like every single part of you is hurting from this A. I sure hope the rest of the treatment is much, much better, as you said it does seem to be improving and that you feel a whole lot better.
Hope y'all score big treats tonight, if you know what I mean! Boo!!!!!!!!
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I've been on Arimidex for about 2 years now. The joint stiffness I got at the beginning of treatment comes back from time to time, and almost every time I've realized after the fact that I hadn't been drinking enough water. Oddly, if I don't drink at least 1 liter of water a day my hands and feet will get a bit puffy, and I get stiff all over. I'm not sure how that works, but I'm glad that it has an easy fix!
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I'm glad to hear about the biotin also...I've been on arimidex about two years and after ooph/hst my hair is decidedly thinning! Freaks me out, as my hair has always been a real vanity point for me. I've had to buy a QVC color tube of disguiser!!
Is Biotin OK to take for us ER+ gals on arimidex? OK with all other meds? I will ask nutritionist when I see her next week.
(and how much do you take?)
thanks much! Boy am I relieved to hear others have hair loss. It's as much as I was losing to CMF chemo!
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Enjoyful, up your intake of vitamin D3 (not D2). It is fat soluble, so the upper limit is 2,000 ius daily, but many women take more.
Get a test to see if you are deficient in it from your GP. I turned out to be so, and when I began supplementing within one week I felt like I had not felt in 20 years. I am not k idding, it was a pround relief and change. I used to gimp down the stairs, holdling onto the rail, now I just walk down them.
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Rajkumari: soy is NOT good for ER++ ladies!! Please talk to your onc about this.
Some studies show it is beneficial but only if you have been using since a very very young age. then it has a protective effect. If you supplement with flax or soy, you are feeding yourself estrogen, (per my onc, a Yale teaching doctor and medical director at the center) and since you are ER+, this is not a good thing for you.
Please talk to either a nutritionist allied with an oncologist or your oncologist re: this, my dear!
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OK, I'll make a public admission to the fact that I BUY the National Enquirer instead of just reading it while waiting in the checkout line at the market.
However: Read this article that was in the October 22 edition on p. 46!
"Newer drugs can help women with breast cancer have successful breast-conserving surgery.
Hormone-blocking pills- Aromasin,Femara or Arimidex- can shrink breast tumors after taking them for 16 weeks before breast cancer surgery, allowing women to have just the lump removed.
In a multicenter study of 374 women, half of them facing mastectomies were able to undergo lumpectomies.
"That is a huge deal", pointed out Dr. John Olsen, breast cancer surgery chief at Duke University."
A small study, and the report is from an odd source, but I am sure that this information is available on one of the online medical sites as well.
paamboli
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Hi all, I'm about to start Tamox or AIs, and am starting to read these forums. Joy!
The latest studies have a very different take on soy, not just for Asian women who have used it long-term. Hormones are incredibly complicated. For starters, estradiol and estriol are two different forms of estrogen, one considered good, the other bad. Progesterone, long held up by the alternatives as the miracle cure for breast cancer and other ailments is being criticized heavily in new studies for causing cancer. The new theories on soy are that it competes with bad estrogens and may reduce the body's production of estrogen.
All to say they are a long way from having all this figured out. In the meantime, it's great to know the AIs and Tamoxifen do seem to work.
Latest on progesterone
http://news.msu.edu/story/6713/
Is it bioidentical? Dunno...that's where my know how on this topic runs out.
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I went back on Arimidex anyway at the start of October (after a 3 month vacation)......the first two weeks were very uncomfortable for me, but I did start to feel better - and even though I said I was going to quit forever, I just was too fearful of a recurrence. One fact keeps standing out in my mind - I had a thickened endometrium lining and large fibroid before being dx'd with BC........my ob/gyn told me it was caused by too much estrogen being produced by the fat in my body. Each year I had to submit to a intra-vaginal ultrasound (not very pleasant) and each year the lining and fibroid grew a tiny bit, to the point where I was seriously considering a hysterectomy (for fear of getting endometrial cancer). However, this year, after two and a half years on Arimidex, the ultrasound showed the lining had shrunk from 8mm to 2 mm and the fibroid shrunk a lot as well (I forget the numbers). This proves to me that Arimidex really does it's job on blocking estrogen in my post-menopausal overweight body. So I feel convinced I should stay on this drug........unless I can lose 40 pounds quickly (which I've tried unsuccessfully) Arimidex is my only shield for now.
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Going from hair to hands Does anyone have weakness opening bottle caps..eg diet pepsi,,worse with NEW small caps on plastic water bottles..OR am I just getting old?? NOT !! Hunted today saw one small doe,, no shot cause she to my left and I am a lefty hard shot for me.Walked to truck in fairly heavy snows but did not last long! Hugs to you all!
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NativeMainer, thanks for the tip about the water. I have slacked off and my joints are a little stiffer. I also find that the trigger fingers seem to be getting ready to rear their ugly heads so let's see if I can nip it now. (yes, sunflowers I will look into PT for it if necessary - thanks).
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Sharlene - I have a hard time opening bottle caps lately too. I didn't even think to blame Arimidex. I was just thinking that it might be just the fact that I'm getting older. Who knows
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Nancy - I experienced lower-back pain within a week of starting Arimidex. It went away in about three days. Have had some minor pain a few weeks later but for a very short time. Hope yours goes away soon.
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I'm with Patoo on this, thank you NativeMainer for the reminder about water. I've been slacking off in that department and conveniently forgetting about boring old water. It's great that you discovered this most basic need helped relieve the aches and pains and thanks again for letting us know.
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I have been on Arimidex for 2.5 years now and had my first Dexa Scan since beginning this med. I started out with the bones of a 20 year old and now have dropped 6 points with just a point to go before I have osteopenia! So, take your calcium ladies and don't forget! My vitamin D levels were critically low so this may play a part in the numbers dropping too. I am currently taking 1500 of Calcium daily and 50,000 of Vit d a week for the next year, hopefully this will stabilize my bones. I was not taking enough calcium because stupidly I did not want to take anymore pills, I thought because I eat dairy and occasionally remembered to take my Viactiv that was good enough, guess not!
Linda
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Good for you Linda on the vitamin d, I 'presume' it's D3 in the 50,000iu dose? I am just now awaiting vitamin d results (chronically deficient), as I upped my daily dose to 5,000ius. (I cannot take calcium due to parathyroid issues). We are a 'tad' concerned as I already have an almost 10% bone density loss in spine, but still 'within normal' limits. We (docs and I both) DO NOT WISH TO take ANY bone drugs for as long as possible (I'm 51)...there just is too much info on damage done to jaws/teeth/bones WITH a bone drug...we're holding out til next year's dexascan. (Being now on Aromasin after 3 1/2 years of Tamoxifen--good for bones---now not so good stuff for bones...gotta do what we gotta do though, it could be worse I always say.)
Good luck Linda and all....juli
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lakewoman'
I started having problems opening up bottles and jars a couple of months ago...really threw me for a loop. i have always had strong hands and now I have to have someone help me. A friend of mine made me a jar opener made out of the shelf liner material that looks likea heavy rubbery netting. She even put a nice knitted edge around it. Works great!
I have my 18 month checkup in Seattle December 6th...it is on the top of my list. As a matter of fact I have had a couple of occasions of numbness and then they tingle.
I thought about you the other day...my boys were going throught all the hunting and camping gear and told me I needed to start making granola bars for the first morning of hunting.
Hugs to all!!
Teri
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Sharlene - YES! I've always had big, strong, womanly woman hands and lately I just can't do anything with them. They're just big lumps of...ham or something...hanging off the ends of my noodly arms.
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Enjoyful, ham hanging from noodles! You paint quite a picture, thanks for the laugh!
Teri, I just happened to buy that shelf liner, thanks for the great suggestion!
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I spoke with my oncologist on Saturday and he told me to stop taking the Arimidex \. He said unfortunately some people develop painful side effects rather quickly. I am just one of the lucky ones. He said I should notice the S/E stopping in about 2 weeks. Boy what a powerful drug....4 days on it and 2 weeks later I should feel better. I am actually noticing some improvement today after being off for 3 days. I am going back on Tamoxifen and will finish up my five years on it. Thank you all for your input.
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It seems for the joint pain (which would include the spine) the elimination of gluten helped me greatly. It has been mentioned on this thread early on but I haven't seen much lately. Likely, you won't get rid of all the gluten but it was amazing how better my knees, hips, ankles and my back were without the gluten. Trigger finger went totally away - but it did come back a tiny when I would be out and had pasta or a sandwich that wasn't gluten free. Just a thought for you guys. LowRider
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