Arimidex - Coping with the SE's
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Aviva, my onco score was somewhere around 13 but my MO is keeping me on the Anastrozole for at least 7 years (just finishing up year 6). He wanted me to stay on because 1) I've had little to no SE's and 2) ILC is a very tricky form of BC, slow growth, rarely found as a lump and not always seen on routine mammo. I use benedryl (depending on my allergies) or melatonin if I need it for sleep. Unfortunately I've been DX with Type 2 diabetes but the good side of that is I'm now losing weight due to lifestyle changes. There is a thread on BCo about keeping estrogen levels down naturally that you may want to browse if you do decide to go off.
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skbrown - I have seen a number who have had nausea but it has been short lived. Hang in and see if it goes away, and if you are taking it in the morning, try taking it at night.
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When thinking about your Oncotype score and treatment choices it's good to know how the score is interpreted. From WebMD:
The test looks at 21 different genes within the cells of a tumor sample. Certain patterns suggest a more aggressive cancer that is more likely to come back after treatment. The test results show a score between 0 and 100.
- Women with a score of 17 or smaller. You have a low risk of having cancer return, if you get a hormone treatment like tamoxifen or an aromatase inhibitor drug. With this score, chemotherapy probably won't do much to prevent a recurrence.
- Women with a score of 18 to 30. You have a medium risk for a recurrence. Chemotherapy may help some women in this range.
- Women with a score of 31 or more. You have a higher risk that cancer may come back. Both chemotherapy and hormone therapy are likely to help women in this group.
http://www.webmd.com/breast-cancer/oncotype-dx-tes...
Please notice the 17 or smaller score indicates a low risk "if you get a hormone treatment." There are other elements such as ER and HER2 status influence the meaning of an oncotype score. Just make sure you know the specifics as they relate to you when you make decisions about starting/stopping treatment.
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Thanks NativeMainer, that also falls in line with what my MO originally advised me (and I had read here somewhere on BCo).
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MO told me if ER+ and PR - would possibly need chemo more than ER and PR both + and all other factors the same. Anxiously awaiting my oncotype results since I'm the former
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Mantu14, thanks so much for this info. Let us know when the study results are available. We certainly will not get the results any other way. The studies in Europe are trending toward staying on the AIs longer. With over 50% of the recurrences in the years after AI use (5 years) one has to wonder if staying on longer isn't the best way to go. I would encourage anyone who has questions to discuss the BCI test with their doctors. This test gives info about staying on longer. My Oncotype was 11 but the BCI test showed that I would get a benefit from staying on longer.
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the dcis was triple positive and so was sent for onco score. The others were not her2 positive and werent tested.......I hope I said that right or mean what Im trying to say... but in any case he keeps telling me how low chance of recurrence I am, Which is awesome. Too bad its so hard not to freak out about every twinge, pain, ache, bump and cough!
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Nativemainer that is pretty much what my oncologists have said. My Oncotype was 18, however I cannot take tamoxifen. Both my dr.'s said without the AI drugs my risk of recurrence is somewhere around 25%. I really wanted to NOT take them. I did BMX and chemo, and I just didn't want to do the drug Arimidex. Having my ovaries out on Feb 5th and then I'll start.
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NativeM, another aspect to the Oncotype scores: They are based on your not having cancer cells outside the tumor, or so I remember. I had a low score of 8, but my MO said that actually was not accurate because I had micromets in my sentinel lymph node. Therefore she recommended chemo, radiation and an AI after my lumpectomy. I expect to continue on an AI for many more years. I started on Arimidex and switched to Aromasin after a year of extreme joint pain and stiffness. Correct me if I'm wrong about the Oncotype. It's been 3 years and I try to forget some of the details!
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Wave, I remember reading recently...somewhere...that the micromets or mets in the sentinel nodes were not as predictive of further mets. Maybe someone can jump in on this?
I had a "few cells" over a micro met in one node, and had ILC tumor oncoscores of 8 and 15. Onco recommended chemo but I refused. We went to a tumor board and they recommended no chemo. Probably will have the longer time on anastrozole due to "tricky" lobular cancer, which is hard to find. My onco brings up the possibility of 5+ years, depending on ongoing study findings.
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Hi there I have been on Arimidex for 3 years now, I have been taking the name brand. Right after radiation I tried the generic, broke out with a horrible sunburn type rash. Dr. put me back on the name brand. Late last year I tried the generic again thinking last time it might have been my body trying to get back to normal. No broke out with the same rash! It is supposed to be the same thing, Talked to the pharmacist about the difference, we determined it has to be something in the inert ingredients
Anyway my question is any one else had a reaction like this? I am trying to get info to battle my insurance, They have taken name brand Arimidex off the preferred brand, because the generic is fine. So now a steep price increase! I see my Doc next month for 6 month visit so I will ask her to battle for me too! But just wanting to know.
Thanks
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sacphotomom, were the generics from the same manufacturer? Sometimes different mfrs use different 'fillers'. If they were different then that should give you more clout with insurance as well. I can 'almost' see insurance denial if someone just doesn't want to go generic without reason (like me) but when you can justify (like you) then there should be no contest.
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I didn't notice any difference between the brand name and the generic, but some people on this thread back then did notice a difference.
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thanks specialk, it has subsided and I was taking it at night. the last 2 days, nausea free.
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skbrown - good and yay!
sacphoto - is your MO writing your script for "name brand only" when you have it filled? Usually that is enough for insurance to cover because that indicates you cannot tolerate the generic due to some sensitivity or allergy. Docs are not supposed to write the script that way unless it is proven that you can only take the name brand, so your insurance should cooperate. It is not the med you are reacting to but some added filler or other ingredient.
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sacphotomom, I read somewhere that you can contact the manufacturer and get Arimidex for $30/mo. More than generic and definitely cheaper than getting it though insurance. Worth checking it out.
How are you doing Wave?
Ohiofan
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Ohio, I'm on Aromasin now and tolerating it well. I have to change to mail-order pharmacy, because of new Medicare rules, so I'm anxious to get if there's a difference. Going in for a hysterectomy Monday. Thanks for asking.
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Hi All - Just wondering if any you with a natural breast taking Arimidex is having any breast tenderness/pain?
I feel like I have gone through most of the side effects of Tamoxifen (2010-2013) Anastrozole (2013-2014) and now Arimidex (since April 2014) and have been coping ok. Up until recently my only lingering side effect is the achey bones.
But about 2 months ago I started having weird "sensations" in my natural breast. It's almost like a burning nerve type ache rather than a pain. It feels like I have a rash or something but there is nothing visible on my skin.
I went to my GP who gave me a thorough breast exam and felt nothing. She looked up Arimidex and told me that Breast pain/tenderness/swelling is listed as a side efffect.
I'm a bit surprised because it's been a year since I started taking Arimidex and didn't think I would develop new side effects like this.
Anyone else with this odd breast ache?
Marie
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Yes, I had nausea with my Arimidex. I had been taking it in the morning but switched to noon. Also needed substantial food. For the first few months I always kept saltines in my desk drawer at work. But it did get better over time. every so often I will go on Prilosec or Pepcid for a few weeks and that has really helped.
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this may be a stupid question, but was is the differnce between Arimidex and Tamoxifen? I am on Tamoxifen and really hate it.
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in general Tamoxifen is for pre-menopause ladies and all the AIs are for post menopause.
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The difference between Tamoxifen and the AI's like arimidex, aromasin, femara is in how they work. Tamoxifen attaches to Estrogen receptors in cell walls, but does not turn them on. That means when tamoxifen attaches to an ER positive breast cancer cell it doesn't turn on the signal for the cancer cell to divide and make more cancer cells. Eventually the cell gets old and dies without making any baby cells. The AI's are Aromatase Inhibitors. Aromatase is an enzyme that changes cholesterol to estrogen. This mostly happens in fat cells. Arimidex and the like inactivate aromatase so it doesn't make any estrogen. Premenopausal women get most of their estrogen from their ovaries, so they get tamoxifen to block the estrogen effect. An AI drug won't decrease the amount of estrogen circulating in their blood. Postmenopausal women have much less estrogen, all coming from fat cells, so they can take an AI drug and even further decrease the amount of circulating estrogen. Postmenopausal women can take tamoxifen or an AI.
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Great explanation. I took arimidex for 5 years and didn't really know how it worked.
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Does anyone know if its the generic Arimidex that is giving me so many side effects? I've only been on it for 8 months and i feel like I'll be in a wheelchair before long. I can't even exercise anymore because of the joint pain. AND the night sweats are every half hour. I sleep on bath towels...........or should I say I "catnap." I need some sleep💤💤💤
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Sorry for all the discomfort/misery. Some women have worse SEs than others. I took 75 mg. Effexor generic to reduce the heat waves to warm flushes. I have read on bc.org that some women do better on the original expensive med. I took the generic when it came out and didn't notice any difference.
I blamed arimidex for health conditions like elevated bp and cholesterol but haven't noticed a lot of improvement since stopping the med. Also blamed it for weight gain but am still finding weight control challenging. I still take meds for bp and cholesterol.
Good luck.
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Deb,
I'm sorry to hear you are struggling. I have been on Arimidex for five years in November. Started on generic. From the beginning I've always had joint pain and stiffness. A while ago I asked my doctor to test my Vitamin D levels. They were low. She put me on 50,000IU weekly of prescription Vitamin D. That issue has gone away.
As for the generic/name brand. I did have a problem with my IT band in my right leg 1 1/2 years ago. I couldn't walk, was using a cane. Because of hearing about there being issues with trigger finger I asked my oncologist if I could go off it for two weeks. I was on the generic brand. Within two days the IT band relaxed and I could walk again. Still can't straighten my leg 100%. I'm almost there.
As a test, I asked to be put on name brand Arimidex. Didn't have problems with that when on it. After three months switched back to generic and started having issues with trigger finger. Went back on name brand and very rarely have the problem.
Everyone has different side effects to various degrees. And, amazingly, some have none. Wish I was one of them. But, I'm very sensitive to so many things my doctors prescribe to me. My allergies list of meds is getting longer all the time.
I do have sweating issues when sleeping sometimes. I don't do anything about them, though.
I took up meditation when I was first diagnosed and still try to do it every night before bed. Helps with sleep. I was taking an 8 hour Tylenol before bed quite a few days each week to be able to sleep through the night. (Not the one with Benadryl in it. Just Tylenol.) About three weeks ago I started using essential oils. I diffuse them at night when I'm sleeping and realized the other day I hadn't taken the Tylenol in weeks. Do check with your doctor's before using essential oils, though. I am using the Young Living ones that are pure. You have to be careful. Some out there are mixed with other things and not good for your body.
Just keep paying attention to your body and you'll figure things out.
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Patty,which blend of oil are you diffusing? I just.got some of them and they are wonderful! Thanks!
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Regarding essential oils for those of us who are ER+, make sure you do not sample or use the estrogenic ones. Here is the list I have. Not sure if there are more.
Fennel, Clary Sage, Melissa, Lemongrass, Basil, Lemon Myrtle and Geranium.
Blend: Balance
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I am not educated about essential oils. Would anyone like to explain
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First of all, Janett2014 is correct. It is recommended anyone with ER+ breast cancer not use certain ones. I had seen the same list of ones she mentioned. I checked with my oncologist and they checked with the pharmacist and he only mentioned fennel, clary sage and geranium. I couldn't remember the other names at that point, but have been staying away from all of them. Lavender was another one I heard wasn't good. But, I specifically asked the oncologist about that one and she said it was fine. Her recommendation to me was using them in moderation should be fine. But, everyone should check with their own PCP and oncologist.
Chloesmom - I have been using the Young Living ones - www.youngliving.com DoTerra is another company that uses pure oils. 100% pure therapeutic grade I think is the wording. I can't find the wording right now. But, using the cheap ones you buy from Amazon is not good. They usually have other ingredients in them that are not good for you that they use for filler. I belong to a closed group on Facebook that uses the Young Living ones and she teaches online classes about how to use them, etc.
When I first started with them three weeks ago I was sick with a sinus infection so was diffusing Thieves and lately with all the pollen in the air, have been diffusing a mixture of Lavendar, Lemon and Peppermint. Between new meds my allergist gave me and starting the EO's I've been still learning what is working for me.
I have also made a bug spray and a spray for itching. Everyone reacts differently to the oils. And, some are okay to put directly on your skin or ingest and some you must dilute. Especially if you are pregnant or using on children. That is all the type of thing I am learning from this Facebook group.
Just some of my experiences - I get monthly allergy shots for immunotheraphy. I normally have to use Benadryl from Thursday until Monday. This month I had forgotten until Saturday about using the oils or itching. I made up a mixture and put it on the spot on Saturday afternoon and only had to do a little on Sunday morning and that was it. Didn't need to take days of Benadryl.
And, like I said in my earlier post, diffusing them at night while sleeping has made my sleep more restful. These are my experiences. Everyone will experience the oils differently.
I'm still learning about it all. But, there are multiple uses for the oils. In what I've read, it seems to be a good way to go more natural with products in your home and what you put in and on your body. I've been trying to get away from all the chemical and manmade things around me. I've heard of others cleaning their homes with them and getting rid of all the chemicals they had in their homes, I used some in my laundry with my bedsheets as I'm sensitive to dust mites, can be used for cuts, bites, itches, inflammation, etc.
I'm no pro, but if anyone has questions, I can see what answers I can get for you.
Here are two webpages specific to cancer/breast cancer and EO's
http://www.cancer.gov/about-cancer/treatment/cam/patient/aromatherapy-pdq#section/all
http://breastcanceryogablog.com/2013/04/29/aromatherapy-breast-health/
Patty
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