Arimidex - Coping with the SE's
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Ok here I go again...this is very dangerous for me to be on this site in the mornings as I can't seem to stop reading and find myself rushing not to be late for work but here goes...
Ruth and Patoo, Thanks so much for answering my questions. I am now wondering what happens after 5 years? Are we back to our original risk rate? If that is the case then for those who are at a very low risk is it worth putting yourself thru all the SE's? Wouldn't it be better to keep close tabs on things and have just have lumpectomies providing they still have boobs. After all if you are watching closely you should be able to catch anything very early and a lumpectomy should be a breeze and the recovery would be better than 5 years of SE's wouldn't it? And what about soy? I have been doing some reading because I so love Edamama and am wondering if you were going to eat soy wouldn't now be the time to eat it while you are on A's. Don't A's block the estrogen? Like I said before this is all so new to me and my mind is racing around with the "what if's". Everyone here on this thread is such a blessing to me, because I feel I can ask any and everything that comes to my mind and you guys are so gracious in answering everything, I can't thank you enough. Better get off now...hope everyone has a bearable day.
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Marie2: If it were only that easy. Just have a lumpectomy?? What makes you think if we stop the Als we will be lucky enough for it to just return in a little lump we can just get chopped out? It's not like bc thinks first about our pain before it attacks us. What if it turns in to mets and ends up some place other than our breasts?. I have already had so many lumpectomies from former surgeons trying to "protect" me from bc that I could join a circus with my breasts in the freak show! As for the soy, I was told "no soy" and that did not seem to have anything to do with the fact that I am on Arimidex. But I was never allowed soy on or off Arimidex. Hope you had a nice day at work.
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Marie2, my onc said NO soy. I begged for soysauce and she relented with "just a little". I think part of the idea is to starve hormone receptor positive cancer cells. My tumor was 95% ER+, but PR-. Me, I'm trying to find the foods with the least phytoestrogens right now. This summer, am about to eat my weight in watermelon which is lowest on the scale. Maybe I can find a link that shows the phytoestro-contents of various foods; if so, will share. I just did a printout when I found it and ??? where it came from. (edit to add: I just read what looked like a good scientific article about the interactions of various drugs, foods, and herbs on AIs and Tamox; it was mostly over my head but most interesting. But it's along the principal of how substances can amp up or negate the effects of the drug we're taking, in this case Arimidex. I want the A to be able to do its job, so want to avoid meds or foods that might null the effects.)
As for muscle aches, my legs are a bit more achey, however I am not sure but what it's my own exercise routine ramped up and revived after rads. So far, so good with other se's but I'm not holding my breath - in fact, am working hard to get plenty of O2 throughout my system; adding supplements as directed by onc including D3 and calcium, and doing what I can to help my body adjust. Developed mild LE from rads, and LE therapist and PCP are both suggesting Yoga, which I'm going to do. Classes will be too far away, so will get some dvds. Last week was my first blood test since surgery and rads, and I will be "interested" in the results. (read: I am trying not to worry, but a little anxiety is in order.)
Medigal, I'm with you on lumpectomies, but am fortunate to have a great surgeon and it just looks like my small breasts have shrunk over time. Scars are nearly invisible. I've had several, and a few biopsies. At my first DCIS rb dx in '96, most of the newer tests and drugs weren't on the table yet. This time, a different event, IDC lb stage 1b, grade 2, Onco 25. I opted for rads and A, with no chemo - both my 40-yr PCP and 14-yr BS said the se's of chemo weren't worth it in my particular case. It was a tougher choice than anticipated especially because of the Onco score. Anyway, the choice is made, rads are done. I feel pretty good and am on the A-Train for another 4 years 11 months and 5 days, and if it goes well, considering the way I feel today, I'll be asking if I can continue it.
Best wishes to all!
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Hi to Sunflowers!
Thank you so much for the TEVA info. I've gone back to brand name arimidex from Astra Zeneca after the accord recall (call your pharmacists ladies and check for lot numbers) on the advice of my oncologist (who got the recall faxed to him) for a month or so til this all gets cleared up. But I'll be going to Costco to get the TEVA after that!
I wishdrew the posts, as rather than helping inform, people took them the wrong way. I did not mean to upset anyone, merely inform that there was a recall and that they should investigate it.
If anyone has an issue, they should 1. call your oncologist, and 2. call your pharmacy, give them the lot number and ask where their get their generic arimidex from. If India, it is the Accord brand name, and there are specific lot numbers that they should know of and have pulled. The reason for the recall was not given.
....and for heaven's sake, this is the last multi post, saying the same thing, I am putting out there on this subject. It would have been irresponsible of me not to put it to you guys. It is not a "rumor", it was a fax. From the FDA into my pharmacists offfice. I saw it, and my oncologist received a copy of it.
I am not in the habit of jumping onto threads and stirring up trouble where none is, nor upsetting my bc sisters. Check into it for yourselves, if you are satisfied with your arimidex, and your oncologist is as well, and the recall doesn't trouble you or is not your brand, fine. But do not come on here and belittle me, please.
Thanks and be well all.
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Ladies, I thought I would bring some information about the SEs of Arimidex I did not know about. I was doing some research on clinical trials.gov a site Astra Zeneca gave me when I called them today and found out they were doing a trial concerning "Fatty Liver" SEs. I did not know Arimidex and Tamoxifen could affect the liver but it is in their "Adverse Affects" section. So I will make sure my doctor does the blood test to make sure it is not affecting my liver. He only seems to be concerned with the Bone Density Test but if I am going to try to take it another 5 years, I want to make sure my doctor covers "all" my bases. So if you are taking these drugs, it might be helpful to keep a watch out for any liver problems.
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On the numbie's...my arms and hands were so numb that I sought the advice - at the recommendation of my onc - from a neurologist. I have spine mets and when looking at my pictures, we discussed at length what was causing it. Partially, the Arimidex and the aches and joint pain but also, the muscle's attempt to support the failing areas of my spine were 'pulling' down on the all the muscles causing those in the neck area to 'press down' on the nerves creating additional numbness. There is a simple set of isometric excercises I now do (and cannot for the life of me get them to post here - I turned them into a jpeg and still not able) and most of the numbness is minimized dramatically. Maybe I can find a link as they appear to be printed copies of a standard form...
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My surgeon did not look at any lymph nodes with my second mx. The biopsy came back non-invasive carcinoma in situ. I asked for a second opinion on those slides and after almost 1 month I just got the results ... one of the slides showed invasion. I will see my surgeon on Monday re now taking a look at the lymph nodes. Question: Does anyone have knowledge of another procedure to look at lymph nodes other than the traditional way under general anesthesia? Thank you. Julia
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Aside from the oncs just feeling around really thoroughly (which they do, as i'm sure you've experienced- OUCH!) I've never heard of another way. I'm sorry this must be very stressful.
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Ok, I need to vent and get input from you Ladies. I'm not a happy camper.
I've been getting Lupron shots since mid March and on Arimidex since mid April. The results of my hormone tests just came back. My FSH is 5.1; what the.....? Anyone have a clue as to how it can be that low with Lupron ? To top it off, I asked my onc for a Serum Estradiol test to see if I was metabolizing Arimidex and the test was only "<20" ; worthless from my perspective. Why wouldn't he specifiy that the test had to cover the lower range since it was for Arimidex metabolization. I even asked the lady drawing blood to specify it on the sample; she said ok and then clearly did nothing. Ok, I may be extra sensitive since Tamoxifen didn't work for me but jeez, with these test results, I have no clue if Arimidex is working for me. Meeting with onc tomorrow. ARGHHHH
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I had carpal tunnel symptoms after my bmx. I purchased a brace to wear on my right wrist at night and also began to do recommended exercises. After a few weeks the symptoms went away. You can purchase rubber balls online with instructions for exercises.
Pam, my gyn did recommend 1000 D-3, not B-3.
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Hi Medigal,
I am well on in my Arimidex life. About 1 yr ago, I was told I have fatty liver. My PCP just said the usual eat healthy - veggies, avoid fat, etc. (and I do). I haven't been able to find any other treatment on the internet.
There doesn't seem to be anything to help it, if you are already doing all the right things. Now I am wondering what are the risks of having it and will it go away by itself when I finish my arimidex.
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julia - i just saw posted on another thread that an MRI is sometimes used to DX the lymph nodes......hope that helps.
Beverly
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Marie, I think you can eat some occasional things with soy, but don't eat a lot of it or add big doses to your diet on purpose.
It's in the first 5 years that you have the biggest chance of reoocurence, and the anti-hormonals offer you the best chance of avoiding that. If you choose not to take them but just watch and wait, your chances of BC coming back will be significantly higher, and if it does come back it will probably not be in your breast at all (unless you have a new primary) but will have spread to some other part of your body; if that happens, you will be dealing with cancer and cancer treatments for the rest of your life. Most people don't have horrible or unmanageable SE from Arimidex, so go into it with an open mind and be very glad that it is a choice! Ruth
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Thank you very much Beverly, I'll pursue the MRI route further ... it would be a lot easier to take than general anesthesia and surgery. I'm wondering though what difference it would make whether the nodes came back negative or positive. Can't have radiation again (had it 18 yrs ago), just had chemo and now on A. Perhaps more chemo? I appreciate your response so very, very much. With that first revolting diagnosis we are all automatically inducted in to the worry hall of fame. I'm so grateful to be able to come here for information and kind support to soothe the soul. God bless.
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My prescription is for the Teva. So far so good after three weeks.
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Again Thanks Ruth, I will keep that in mind. Also has anyone experienced any headaches and nose bleeds? I have been having headaches but nothing out of the norm, however I was awaken by a nose bleed this morning and that is not normal for me. I really don't know now if the new things I am experiencing are SE's or when to seek a doctor's help. I am so grateful I can bounce everything off you ladies and gain knowledge from your wisdom. Hope everyone has a day that lifts their spirits.
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I have been taking Arimidex for almost 6 years now and have never had a nosebleed. I have had tension headaches all my life so can't blame that on Arimidex. Why don't you check the SEs of the one you are taking and see if nosebleeds are a side effect.
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Hi Ladies,
I have a question. I just read a comment posted that says AI's prevent recurrence from happening anywhere in the body. Must we assume then, that an isolated cell may have somehow stolen away and is roaming around the body to set up camp and cause havoc sometime down the road?
Here's the reason for my question: I recently had my BS check up and I asked the doc for a prescription for a colonoscopy. He looked at me as though I had lost my mind, and replied "I don't see the connection" but wrote the prescription anyway.
Thanks,
Glenis
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Glenis,
Two things:
Breast cancer tends to metastasize to bone, lung, liver and brain; not colons.
BUT.... people with breast cancer have a greater risk of colon cancer, albeit unrelated.
So you are both right in your thinking. I can't imagine why he would not approve of a colonoscopy if you are willing.
pam
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I used to be in a bc support group with this guy whose wife passed from bc. He studied everything like a doctor on bc so that he could protect his wife and make sure she got the best of everything she needed to save her. She ended up passing anyway. His reply to us was that all it takes is one isolated cancer cell to be loose in one's body to cause it to return. That is why he encouraged us to do the Chemo, Rads and throw everything at it to try to kill any left over cells. This is one important reason I am trying to stick with the Arimidex for as long as I can. I need the reassurance of having "something" in my body trying to protect me against what could still be "roaming". Even though the Arimidex is not Chemo, it at least helps stop the estrogen which feeds this evil disease! Just my opinion.
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Colonoscopy should be a no-brainer.....like wearing seatbelts. Yes, the prep is miserable, but well worth the effort. Then you are done.
Just ask Dr Oz who unintentionally showed the world why this is such an important procedure. HE never expected that they would discover anything, and of course this may have saved his life.
Being on the A Team is one more thing we are doing for ourselves....starving the beast if it snuck beyond our defenses. Again, just so important.
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My family physican has encouraged me to have a colonospy every five years; once you have had one kind of cancer it automatically puts you into a higher risk catergory for other types. (Oh Great!!!). I didn't think the prep was bad at all, and if you do have them on schedule, with the 'poop smear' tests annually in between; that is one kind of cancer that you should never have to deal with, because if they'd find anything that wasn't suppose to be there they'd snip it out before it could become a concern.
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Thanks for the info ladies!
Glenis
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I have extreme pain and stiffness in my knees, it's getting worse all the time. I have been on A for 6 months now. I take 1 Aleve now and then, but maybe I should try two in the a.m. and two in the p.m. I can hardly bend my knees, so I don't need to be told to exercise when I can hardly walk. I am a very active person, outside all the time and riding horse, cleaning barn, yard work, ect. It's just been getting worse and worse.
I don't eat much sugar, so I don't know if that would be a factor. Gluten I do eat alot of, maybe I should try to cut down.
My hot flashes are slowing down, not so bad and not so many lately. So that is one good thing!!
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My bc dr. told me to keep up with screening like colonoscopies. She stated ever so kindly that women with bc are more likely to develop other cancers. She is a colon cancer survivor herself. It's recommended that women have a colonoscopy at age 50 and after that every 5 to 7 years, depending on the results from the 1st one. I'm overdue. This is year 6 since my last (and only) one. I didn't have any polyps so haven't been too concerned but I guess I'll follow my bc dr.'s advice.
She cautioned me not to eat soy but that's the only food restriction she mentioned. I guess I should ask her about alcohol consumption but I'm afraid she'll suggest abstaining!
My knee joints and hip joints and assorted other joints get stiff while I'm sitting down but once I start moving around, the stiffness goes away. After about a year on A, I don't notice hair loss.
Ruthbru, that was a good outlook on the pros of taking A. Very well expressed.
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I think it is good to keep the big picture in mind, and the fact that for most (not all) people, the benefits outweigh the SEs.
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Hi everyone. I've been reading all the posts and have been greatly helped by the comments.
Carolh
Check with the literature that comes with the A, I checked today on line and saw that alcohol does effect it. Not sure if it's the absorption or what. Took a peek at break today so didn't get it all read!
I noticed the same effects from A that I did when I had thyroid tumor. Hair falling out, facial hair, stiff joints, weight gain, etc. Wondering if anyone knows if A does something to the thyroid. Still freaking about the SE but my onc is insistent that I take the drug. Trying natural along with it especially the 3000 u of D3.
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Hi Samsue, I read my literature and it said " THIS MEDCINE MAY CAUSE DIZZINESS. This effect may be worse if you take it with alcohol or certain medicines." From what I am understanding it is the dizziness that it may cause when taken with alcohol. Not sure if it means using alcohol to wash it down with or having alcohol anytime after taking it.
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No problem with dizziness, and no, I am not drinking THAT MUCH alcohol. I am not taking any other meds except for vitamins/supplements (including D3) and aspirin.
I have not had any weight gain. Samsue, have you had your thyroid function checked?
I need to up the cycling as can feel I need to do more (actually did less distance than normal last weekend) and get ready for a metric century next weekend. It's an all-women event in support of battered women, and will cover some territory I don't know very well. Hoping for fair weather!!!
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I tried to dance at a wedding recently but I need to warn some of you that your knees may become less strong while on arrimedex. It took me a year to taper the toxic old lady effects and I threw my knee out running up stairs, as I almost did dancing at the wedding. I am amazed at some who do not have this SE but hey, you go girl. I started taking fish oil and it helps a lot. Stairs are still slow for me as is my energy level. I can't run or walk fast but I keep moving, trying to eat healthier, have gained weight but seem to have leveled at this current weight. Swimming is the best for me, as I can move in the water and stretch when I have a hard time doing that in the air.
I have 3 more years to go on it so I am trying to keep muscle tone.
Good luck to you all. Be kind to yourself. Enjoy those moments we used to take for granted.
wondering7
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