Arimidex - Coping with the SE's
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Hi Ladies, I'd like to join this group since I am new to taking Arimidex (6 weeks) and have found your postings very imformative and helpful as a 'newbie' to the A Team! I had a rough start on it but seem to be doing a little better with SE's, or maybe I'm just getting used to some of them?
My challenge is I am also in radiation therapy (new study showed it was ok to take A and do rads at the same time.... lucky me) so I'm not sure which SE's are from the Arimidex and which are from the Rads. (just had 9th rad treatment) Have any of you had this and if so, what helped deal with both at the same time?
Also, at my insistence, my endocronologist (have low thyroid) did a bone density scan for me. (My oncologist was going to do it 'later on') Turns out I have osteoporosis in my lower back and the bones in my hips are thinning. So now endo and oncol are recommending I have a yearly infusion of ZOMETA because I'm on the Arimidex and have osteoporosis. Zometa has it's own long list of SE's so I'm reallly hesitant to do it. Has anyone on this thread had Zometa?
I feel like this is a vicious cycle of having BC then all the treatments for that, and then having to take more drugs to treat the SE's of the other drugs. I am taking 2000 IU Vitamin D and 1,000 of Calcium, exercise regularly, eat healthy. I went gluten free over a year ago, don't do hardly any dairy, red meat, or sugar. I have to limit my antioxidents while I'm in radiation treatment. All I really want to do is get my immune system as strong as possible again and feel good again. I'm only 54, used to a very healthy, (I very rarely ever get sick,) led an active lifestyle, lead a women's ministry, and now I feel exhausted, emotional, unmotivated, and old and creaky.
I was on HRT and suspect that's what fed the Beast in me, so I want to do all I can to minimize the risk of reoccurance.
I'm taking it one day at at time and doing all I can to make every day a good day. I know a positive attitude makes a world of difference, along with a good sense of humor and loving support group! My hubby got me a sleep shirt after my surgery that says, "Bearly Awake" with a cute bear holding a cup of coffee in a bathrobe and slippers on it. I think it is very appropriate for how I feel these days!
Thanks for letting me vent. As some of you have said, this is a place where we all REALLY understand what one another are going through. Thanks Ladies! Have a good week everyone.
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Jen, you might want to get your endocronologist and oncologist together. I have a friend with osteoporosis. Her oncologist had prescribed Arimidex, but her endocrinologist was really concerned, visited with the oncologist and she ended up doing Tamoxifen instead.
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JenBro - I second Ruth's thoughts. Tamoxifen is on the list for me if Aromasin doesn't like me. A woman I work with was diagnosed with osteoporosis and her MO said Tamoxifen was the only thing she could do - no AIs. Tamoxifen, as I understand it, actually can help the osteoporosis.
I too started my Arimidex and then started my radiation. I had major side effects - the normal bone pain, etc but what I could not deal with was the spike in my BP and my heart was racing. I had to stop it. Within 2 days after stopping it my BP went back to normal. My pulse continued to race until a few days after I was done with radiation. My MO said rads likely not the culprit and probably the Arimidex. After all the symptoms from the Arimidex were gone and I was done with rads, the bone pain came back in full force. I called my MO and he suggested I see the rheumatologist to be sure that Arimidex did not cause a rheumatalogic condition to finally surface (they have tested me for several years but nothing has shown up). If it wasn't RA, he said it could well be the Arimidex and explained that the enzyme that Arimidex generates (not sure if I am using his terminology correctly) can stay in the system a long time. Usually when it is gone, the pains are gone. But some people have it stay longer than others.
The rheumatologist said not RA. He said he gets lots of referrals for people that are on or have been on Arimidex. A couple of interesting things to note. He said because I had both bone and joint pain, it is probably still the Arimidex (I am 8 weeks post Arimidex). I had a total hysterectomy in 2003 and have been on HRT until my diagnosis of BC in May. He said that HRT helps osteoporsis - keeps the symptoms down and minimizes its progression. He pointed out that I had a double whammy. First, I stopped HRT. SO osteoarthritis was going to get worse. THEN I was taking an AI which also aggravates osteoarthritis as my joints were not getting the estrogen they wanted. So, no wonder I was having pain. Since I tolerate ibuprofen I can increase that if I need to. Flexeril will work (muscle relaxer) but it makes me so drowsy. He suggested cutting it in quarters.
I still have not started the Aromasin. I have to start taking Slo Niacin but after the lymphnode infection and the allergic reaction to LevoQuin I'm reluctant to take new drugs at home alone - out here in the sticks.....need to wait till I can be in a public place.
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I asked to wait until after I was done with rads to start Arimidex. I figured dealing with one set of potential SEs at a time was enough for me. Statistically it doesn't matter if you start right away or wait (at least that was the thinking 4 years ago).
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different companies use different binders for the meds so different brands of them could work differently...
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I did rads and Arimidex at the same time as was the protocol for the treatment study I was on. One lucky week, I started both plus got my port out. I was fine.
I was not fine with the guy who suggested I needed therapy (and meds) for being a bit wired during that time SHEESH!!!
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JenBro wrote: "Also, at my insistence, my endocronologist (have low thyroid) did a bone density scan for me. (My oncologist was going to do it 'later on') Turns out I have osteoporosis in my lower back and the bones in my hips are thinning. So now endo and oncol are recommending I have a yearly infusion of ZOMETA because I'm on the Arimidex and have osteoporosis. Zometa has it's own long list of SE's so I'm reallly hesitant to do it. Has anyone on this thread had Zometa?"
Hi JenBro,
I joined this board just so I could answer your question
I had a Zometa infusions once a month for several months. The only time I had a SE was some bone pain, but only after the first one. After that, there was no pain after the Zometa iv. The infusion took about 20 minutes, at least the dose I was prescribed. The last two months I have been given XGeva shots instead of Zometa because it has less wear and tear on the kidneys. Now I have a question. Does Arimidex cause high BP in some people as a side effect? I noticed my BP has been higher and wondered if there is a connection. Thanks, all! I'm glad I found you all!
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Trisha anne
I am glad you can say I feel so good!.I know if I have a pain free day .I am so grateful and happy:)
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SanorD - yes. I got high BP which is why I stopped.
JennBro, I don't have osteoporosis but my sister did get it from Arimidex. I only have the wisdom of her research. Her concern with some of the long acting osteoporosis meds was that if they had a bad effect or reaction, you were hosed for whatever period the med was for. She was specifically talking about the once a year ones that could be really bad. There is also one that is known to cause jaw issues - my friend's mom took that one and that one is really wicked.
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JenBro - have you had a Vitamin D blood level test? You mention low thyroid, I hope that means too that you're taking medication for that. I don't know if I'd have any energy at all, if it weren't for making sure my TSH stays below 2.5. Some labs/docs still use the OLD level of maximum TSH 6.0, but since 2003 the American Society of Endocrinologists have said TSH should be below 2.5.
Add me to the higher BP list. Also higher cholesteral - went from 185 to 205 without any other change, except taking Arimidex. Have my yearly physical this month, hoping to get that number down: Slo Niacin ( thank you, Ruthbru), NO DAIRY ( goodbye cheese) and lots of fiber ( Hi, Oatmeal which is a lovey warm breakfast for the winter)
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Painterly, I question, too, what he said about hot flashes meaning you still have estrogen. I had far more hot flashes on Arimidex then in the short time I was off it, so by his logic that would have meant I would have had more estrogen in my body while on Arimidex. ??
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Thank you everyone for your helpful info! I'm so glad I found you all. I'm meeting with my RO this afternoon and will ask him about holding off on Arimidex until the rads treatments are over. Dealing with one thing at a time would help.
I also think I need to talk to my Oncologist about the Arimidex/Osteoporosis situation and see if there is a better alternative to Arimidex, instead of staying on it and then having the annual Zometa infusion. (I've read those are horrible, you are sick for 3 days afterwards and the SE's are bad and some can be long term.) Or ask about having infusions like you did SanoraD. I will ask my Oncologist about Tamoxifen too. He mentioned it when I first went to see him and then after surgery and test results he recommended the Arimidex but that was before we knew about the osteoporosis. I just found out about the osteo so haven't had the chance to see my oncologist again yet. My only hesitation is I personally know 3 women who took Tamoxifen for 5 years and their cancer came back with a vengence.
Have any of you struggled with weight gain on the Arimidex?
So far my BP has been fine. It has always been low, but I know they will check it today at my Rad appointment so I will see if it's going up.
I am taking thyroid meds. Have been for 13 years. I was being overmedicated by a previous Dr. and recently switched to a new Dr. who lowered it to a better level. I'm so tired from all this cancer treatment that I really can't tell anymore where the fatigue may be coming from. My endocrinologists said to me, "Pick from any of the 10 things you have going on right now!"
Yes, having my Vitamin D levels checked regularly too and so far they have been okay. The same Dr. who had me on the HRT and too much thyroid, didn't 'believe' in bone density scan tests, only going by Vitamin D levels. My D levels were always fine, but turns out I have osteoporosis. I wonder for how long and I didn't know it? I stopped going to this Dr. as soon as I found out I was dangerously overmedicated with thyroid and then the BC diagnosis. And now I know about the osteo.
Have any of you been told to get a flu vaccine this winter? My endo recommended a flu shot along with a shot to help prevent pnuemonia.
This feels like a major juggling act with so many different doctors, difficult decisions along the way and no easy answers. I also have a camp of friends who are on the other extreme saying don't take ANY drugs and fight it naturally with nutrition and building a strong immune system. I'm trying to find a balance in the middle. I was doing all I could to take good care of myself and build a healthy immune system, but I still got BC. My body has so much extra estrogen in it from the HRT I was on for almost 3 years, that I know I need something like Arimidex to help lower that and help guard against BC reoccurance.
How do you all deal with having to work with so many doctors who may have different opinions on what best treatment course is? (I'm dealing with 4 different doctors right now) Sometimes I feel so confused and not sure who to listen to. Especially after having a doctor in the past who was treating me with things that ended up leading to serious issues.
Sorry for the long posts. I'm new to this and have so many questions. Have a good Monday everyone!
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jenbro-
i tell them the same thing i tell the insurance co & billing facility when the statements don't add up --argue it out for yourselves & when you make up your mind, call me. then we can discuss it.
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My husband was diagnosed with CLL in 2007 and then had a stroke in 2008. They still don't know what caused the stroke. He wasn't given any treatment by his oncologist initially because CLL is the type of leukemia that can stay static for several years. Then, almost exactly a year ago today, I was feeling lower back pain. We all get that from time to time so I wasn't worried. But it didn't get better so I went to a chiropractor later that month. He took an x-ray of my lower back and he said the one misshapen vertebrae could be cancer and it had no "coating" around it (sorry, don't know what to call it). He ordered a scan with contrast. He said an oncologist should take a look at it because he was not a specialist.
Anyway, long story short, I ended up in the hospital and my screaming probably woke up people in the morgue. I was in agony by the time I was hospitalized. The resident back specialist at the hospital said I needed emergency back surgery because the cancer was causing that part of my back to collapse against itself causing the pain. He did a fusion back surgery and it was amazing. The lower back pain was gone immediately. I still had pain in my hips and upper thighs, but I was given radiation therapy for those areas and that stopped the pain there for the most part. What was discovered, of course, is that the bone cancer was the result of (to that point) undetected breast cancer. I was in the hospital 17 days and it's all mostly a blur to me.
When I got out and go back to my own bed, I was wrung out. I felt so tired and beaten up. After a bit my appetite came back and I was making regular visits to my oncologist. He has yet to prescribe surgery. He said since my breast cancer had already spread to my bones that a mastectomy wasn't necessary, or something like that. I told him that if my breasts are removed, then the cancer can't return to them. I know someone who had breast cancer in one breast and that breast was removed, but not the other. 7 years later that breast became cancerous. That's why I wouldn't mind them both being removed.
So, here I am today. I take Arimidex once a day. I get an XGeva shot once a month (used to be Zometa). My recent mammogram showed a 2.5 cc lump in my left breast. A year ago it was a 4 cc lump. I have not had radiation therapy for months and have had no chemotherapy at all. I had a bone density scan and it was good. In two weeks I'll be getting another CT scan. I guess after that scan more decisions will be made. That's my story down to the minute. JenBro, I look forward to your results. Thanks everyone.
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My BP went up on Arimidex along with my cholestrol level. I am now on medications for both of these.
I have a question for the experts! I am now on Arimidex (generic) along with a monthly faslodex shot as I was premenopausal when dx'd. My problem is that my insurance is changing drastically. The arimidex is cheap but not the monthly shot so I talked to my oncologist about switching me back to Tamoxifen and I could eliminate the need for the shot.
I was on Tamoxifen from October 2009 until March 2011 but switched over to Arimidex due to the horrible joint pain I was feeling and also I needed to get on zoloft as I was a raging biatch!
According to my oncologist studies have come out where he is not so concerned about me being on Tamoxifen and zoloft at the same time as the only time there is a problem is if you have some sort of mutated gene which is very rare.
Is there a reason or two or three for me to not switch back to Tamoxifen?? I am 51 years old - diagnosed at age 48.
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I should also mention that I have leaky heart valves. Which is harder on the heart - tamoxifen or arimidex?
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sanoraD- thanks for sharing your journey so far. Wow! You have been through the ringer. I hope you are on the upswing now and will do much better from here on out. Your words of how things have improved more recently are encouraging!
I saw my RO today and I asked about going off Arimidex for the duration of the radiation and he recommended I go off for one week and see if it makes any difference in fatigue levels and other SE's. (He said I shouldn't be feeling this much fatigue this early on in radiation) If so, stay off it until I'm done with radiation. If not, go back on since this past year studies have shown a slight increase in effectiveness of radation/Arimidex when done together. He said up until this year, he always recommended patients not do both together for the very reason of not having to deal with SE's from both at the same time. I'm sort of hoping I can see a marked difference in how I feel and can stay off of it until after I'm done with Rads, and in the meantime I can talk to my oncologist to see if there are other options besides Arimidex for my situation.
So I'm going off the Arimidex tonight and will see how things go this next week. I will let you all know. In the meantime, everyone take good care and hang in there. You all are an inspiration to me!
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My blood pressure returned to normal after being high since Diag last year. I have been on Arimidex about 5 or 6 months.
Yes, do get a flu shot and a pneumonia shot, those illnesses can kill you for sure! My mom died from pneumonia 4 years ago. Flu shots can not give you the flu. Get the shot!
Is anyone else having lots of disturbing dreams on Arimidex. Apparently I am arguing in my sleep 3 or so times a week and then I wake up SO tired. My husband reports this and I wonder that he still sleeps in the same room as me!
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Just swinging by for a minutes, but, yes, get a flu shot.....and my GP, who knows me the best, insisted that I get a pnemonia shot, no oncologist mentioned that to me, but my GP said it was a 'for sure do' thing.
I'm doing the Slo-niacin, eating the oatmeal every day, trying to get in two servings of oily fish a week, eating 2-3 ounces of at least 70% cocoa dark chocolate every day (lowers the BP..... it's true, I'm not even making it up!!!), and a daily serving of prunes (strengthens the bones and lowers to risk of colon cancer).
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This is a drive-by, 'cause it's almost time for supper.
1) Get a flu shot. It's a no-brainer, especially for those of us who spend time in hospitals and clinics and/or have elderly parents or very young grandchildren.
2) Yes, the AI's have been blamed for weight gain (or difficulty losing weight), high cholesterol, and high BP. I don't know how firm the links are, but they come up over and over on these boards and have been reported as SE's in the drug data.
3) jancie, I don't know what to say about Arimidex vs. tamoxifen. My med onco said she was happy that I was post-menopausal and could go right to an AI. She said she considered the potential problems with tamoxifen to be more serious, and more difficult to detect and treat, than the potential problems associated with Arimidex. I agree. I also have a leaky heart valve (mitral valve), so I'm concerned about blood clots and left ventricular function. I think the risk of clots with tamox is scarier than the uncertain, ill-defined possibility of "heart problems" associated with Arimidex. Keep in mind that most of the "problems" linked to Arimidex are from studies in which Arimidex was being compared to tamoxifen. So even though the relative risk of something going wrong could look significant, the actual (absolute) risk of it happening could be very small.
(I can't explain that right now, because my mind is fuzzy. Another SE of Arimidex, unfortunately.)
otter
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Jenbro- mygp told me from now on, post cencer, I am to get a flu shot.
my Bp is 112/70 normally so I am keeping an eye on it. Just got me cholesterol levels in 2.07!!! qwqee ha....hoping that the arimidex does not mess that up. I have been really ired lately but I amassuminglike theother meds that I am adjusting to it and it will take a bit of time
jancie- I am 49...diagnosed last year...had a heart attack 4months after being on tamoxifen and the cardiologist,oncologist and radiologist all blame the tammi....or arimidex, it is cholesterol and heart..on tami it is potential for blood clots...which is what happened to me
I have been playing iwth the time Itake arimidex...took it at bed or suppertimethe last three days...and my back is not as sore and I slept like the deadlast night...in a good way! might as well use it as a tool hmm???
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Hello;
I just started arimidex after being on tamoxifen the devils bargain for me. Tamoxifan gave me terrible depression. I am only now just coming out of that. They gave me effoxor but I never took it. I have used Sam E instead and it works for depression.
I see a lot folks complaing about joint pain and I want to mentio two things that work for me. One of them is hgher does of Vit D 3' abut 2,000 units a day. The other is flax seed and flax seed oil in very small amounts. Flax has been studied and found to fight breast cancer as it interfers with receptors in the breast namely the estradial. I asked the doctor while I was off tamoxifen for a few weeks to check my estradial while taking just flax and it was a nice low <7. That is amazing because my estradial was <2 while on tamoxifen so it does work but it did up my composite estrogen levels. Therefore use with caution and consult your doctor first. But I had seizures due to lack of estrogen and the estrogen I was given caused the breast cancer so basicly I am not sure ineed the arimidex however the doctor says I do. I was going to do just flax but when I saw the hgher comosite score I forgot that idea. May you all be blessed.
Hope you all find this helpful
Marcia
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Hi Marcia,
I take 4000 ius of vitamin D and my vit D ests have come back 'normal' twice in the past 6 months . I have read and gone to lectures both saying 'yay flax' and 'don't eat it because it is hormone sensitive '...so I am eating bananas for the potassium and taking hot showers as soon as i turn the coffee maker on! that is helping a lot too:) Hard to know what to do with the flax thing...
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I don't add flax to my diet.....the jury is too divided for me to be comfortable doing so.
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JenBro - I am a bit ahead of you on this journey and so I will say that Arimidex (generic or not) is extremely drying from head to toe. I would not have wanted to be taking it during my radiation. I didn't have much trouble with rads, but I can say that what I did have would have been worse had I been also suffering from the extreme dry skin (and everything else) that I have with Arimidex. I am glad you are considering waiting. Weight gain-yes, high blood pressure-no, killer joints-yes, trigger finger-yes. My trigger finger is my middle finger on my right hand and it sometimes has a life of it's own - kind of humorous actually.
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Hi Sunflowers,
I enjoyed your response to Barbara in the U.K. I thought, a Canadian would surely respond to your comment that the Medical System is far superior in Canada than the U.K. Well, the answer is..."it is not."
Our health care in Canada is far from perfect. We just don't gripe about it and are prepared to wait if our health issue is not life-threatening. If it is cancer or heart issues...you go straight to the front of the line. If it is otherwise, such as a hip op, you will most likely have to wait 12 months for relief. (I play golf with two gals both waited 12 months for the op.). My b.c. op was a 3 week's wait, but I don't look forward to the time when I need a hip op.!!!
And Barbara's doctor sounds just like my rad.doctor who thinks my se's are in my head. LOL As I mentioned on another thread, she told me "not to talk to other women because they know nothing." My onc. though, has a lovely chair-side manner and takes the time to chat. Yes, we love our treatment availability in Canada and everyone gets the same treatment.
You said you shudder "when you hear talk about the U.S. having a system like the U.K." Well, my bother lived in the U.S. for 10 years and is now back in the U.K. and he says "the U.K. system is by far superior to the U.S." You mentioned that the docs where you lived in London were misinformed and you shifted to the private system for better service. Well, according to my mother, it could be the same doctor who looks after both NHS patients and private. She said for one health issue she had, she went private and was surprised to see the same doctor (but a couple of months earlier!!).
PS (ETA)I forgot to mention that my first onc. didn't know that se's existed from Arimidex either!! and I found out right here on this thread, that they do!!
Okay, back to the regularly scheduled program........
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Good morning, all!
This is my monthly (or is it bi-weekly?) I HATE ARIMIDEX post. I still hate it, and the two pain killers I take for joint pain and body aches, and the high dose of anti-depressants, and the Requip for restless legs caused by Arimidex.....
That is all. Carry on.
:-)
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Ah, but you are still here hating it; so that is a very good thing!
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That's true! It's a love-hate relationship.
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Greetings all! I am scheduled to begin Arimidex in December. I am post menopausal (hysterectomy in February 2004), can anyone in my similar status please share your side effects. I am really glad to be moving on in my treatment course, but as with every step in my treaatment plan, there has been apprehension with regards to side effects.
Merlinda
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