For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Nisa, I'm lucky too that my BC showed up. Not sure it would have been spotted if I hadn't complained of breast tenderness (which turned out to be nothing and not related to BC). My BS is having me get 3D mammograms now. My breasts have always been dense so I'm very relieved. Very discouraging for you to go from nothing to BC in the space of a year.
HUGS!
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Congrats brithael. I had my 12 month check just a couple of weeks ago. The anxiety is awful and getting the all clear is such a relief.
Are you having 6 or 12 month check ups? I've opted for 6 monthly at this early stage even though my Dr was very happy with my results and my general health. I do see my Onc in between too. A thorough check every 3 months might allay my fears a little.
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Smurfette--My BS has me see him once a year at which time he does my mammogram (every 3rd year it's an MRI) and I also see my MO and my gynecologist once a year. My BS has me spread these 3 doctors out so that I'm getting an actual hands on breast exam every 4 months. I had a clean mammogram in March 2012, a clean breast exam in July 2012 and then a 2cm tumor in Nov 2012 which I found myself. Getting a breast exam and checkup every 4 months helped greatly with easing my fears of not catching another lump. Since all my docs think I'm doing great and only want to see me annually, this schedule was a great idea!
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hi.
Sorry but I don't know all the abbreviations
MO = medical oncologist
BS= breast surgeon
NED ?
GERD?
Thanks
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jpBCfree - Look on the left side of the page; there's a blue box that says "Help with abbreviations."
NED = no evidence of disease
GERD = gastroesophageal reflux disease - chronic acid reflux that can cause serious problems if not gotten under control
I am constantly struggling to remember what all the abbreviations mean. Usually I write things out so my meaning is clear. However, I can not remember how to spell gastroesophageal and have to look it up every time. haha. Being lazy, I write GERD.
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My BS has "dismissed" me 3 months post MX...so I am still with the PS as I have an exchange in December and see the MO once every 6 months to monitor the Arimidex....but as of an appt I had 10 days ago, I don't have any further appts with my surgeon unless I decide on a Pro-MX of the Right vs a lift/reduce.
It sounds like some of you have continuing relationships with your BS? Is that how I read it?
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TrmTab--I'll see my BS until "one of us drops" as he put it. My BC was low risk (according to him) and I didn't have chemo or rads but he says he'll see me till he retires or I quit him. I love him to pieces so that won't happen!! And he won't even let my gynecologist do my mammogram. He says it just makes him feel better to know exactly who is doing the mammograms and who is reading them for all his BC patients. And he feels the MRI just gives an added peace of mind. He really is the bomb! But I love all my docs. Before all this I just had a gyn but now I have a BS, MO, PS, GYN, PCP, ENT, ophthalmologist and even a cardiologist. All people my BS found for me that he picked because he thought they'd suit my personality. And he was right. I love every one of them and actually look forward to all my doctor appointments! He told me at my first appointment to get 2 opinions, or even 3, and to pick the doctor based on who makes you feel comfortable. Not who's supposedly "the best". He said we should have many of these relationships for life so loving our doctors is a priority. And he said if I maintained good relationships with them, it would help me to actually have better health over my lifetime, thus living longer. From his mouth to God's ears!
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Wow, so jealous. One of my issues with all of this is that no one was really "my doctor" ... "the one in charge"
I've felt like I have a team of specialist, but no coordinator -- except me of course. So I see the GYN and she says, oh not me, talk to the MO. And my BS, who I really like, is like "you have healed great from the surgery I was involved with, so we are done..." all further surgeries at this point are with the PS.
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TrmTab, Until I moved from the Detroit area to Spokane, my BS was the one coordinating my care. Here in Spokane, I just have an MO (whom I really like). I'm sure if someone else is needed, he'll make sure I find the right doc.
HUGS!
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I am 3 weeks in taking Armidex and I get a Lupron injection once every 3 months. Just starting to get hot flashes and I'm scheduled to get a bone density test to have a starting point. The Armidex makes me super tired so I take it before bed and it takes a while to wake up in the morning. Is it always going to be like this? Does anyone else have similar or different side effects?
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I have been working a lot and have not been around much. I have been doing well. Working and enjoying summer. Finally found a solution to night sweats. Just had my annual blood work and got my results. It seems my white count has dropped just below acceptable numbers. I can see my history on line and it has always been between 5.6 to 6.8 the range is 4.8 to 10.8 10/e3/ul. This time it has dropped to 4.7. Nothing else was outside of the guidelines. I notice that a low white count is listing as a rare side effect on aromatase inhibitors. Has anyone ever else experienced this. I see my family Doc in two weeks. I will probably reach out to the oncologist as well. Not panicking because it it just below the bottom number but I am concerned. I find it helpful to be armed with knowledge when discussing this with my docs.
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Hello all:
I'm about to start Anastrozole in a week or so after finishing rads last week. Unfortunately I had my DEX scan last friday and they found osteoporosis. I'm tired of bad news from tests. My MO had told me if I had osteoporosis, I'd be taking a drug to prevent further bone loss from the Anastrozole. She mentioned an infusion but I'm not thrilled with that idea. I prefer taking it by mouth. Anyone have any thoughts on this? I guess the idea of an infusion if I don't react well to the drug or if it causes bad se's makes me nervous. Or I'm just burned out and don't want anymore of anything at this point. lol
Also, will taking calcium and Vitamin D in addition to the bone drug help even more? I was concerned enough about starting the Anastrozole but now the idea of an additional medication makes me more worried.
I'm hoping someone can provide positive encouraging experiences with the bisphosphonate type drugs.
Thanks!
Marcella
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Marcella,
As far as I know there is nothing you can take by mouth that is equivalent for not only helping osteoporosis but perhaps preventing bone mets. However Prolia (aka Xgeva) is just a shot rather than an infusion and since you only have to have both drugs given twice a year, it really isn't all that bad.
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MarcellaPA, I did not have a good experience with Boniva, so I began taking several OTC supplements that were in a study by some Canadian doctors and had been found to have similar bone loss prevention effects without the same side effects. Here's the study link: https://www.hindawi.com/journals/jeph/2012/354151/
I know there is controversy over the use of Strontium, so read up on everything before you take the leap. For myself, it has worked well; after a couple years I had a follow up scan that showed Osteoporosis was gone from my spine after having had that diagnosis even before starting AI's. I had fallen twice just before the follow up scan (no doubt due to fatigue from chronic sleep loss on Anastrazole) but no fractures, which I consider a good sign. My internist and MO are both supportive of continuing on this protocol.
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Thanks Margo!
I'll read up on the protocol and try to make a good decision. I'm unhappy enough about having to take the Anastrozole but adding this other drug, which seems to have its own set of side effects, pushes me over the top. I can't see why something like this can't be followed to see if it reverses the osteoporosis and then be re-checked like you did. My grandmother broke a hip n her 70's and spent her last years bed bound. I'm glad they found this so I can do something about it but I'd like something less toxic.
I appreciate the research link : )
Marcella
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Brutersmom - you mention that you found a solution to night sweats...can you please share what worked for you?
thanks!
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I am about to start Armidex but concerned like many of you about bone loss...just through menopause and my dexascan show osteopenia in hips and spine. My oncologist (who is not open to questions or patient involvement-- need to find new oncologist) is suggesting that I do twice yearly INFUSIONS (i.e., chemo) of bisphosphonate Zometa as it an restore/stop bone loss AND somewhat protective of getting bone cancer (the cancer that BC often becomes at later stage). I've been exploring Zometa and there are risks with jaw bone damage, teeth falling out etc. Sigh. It's exhausting to try and figure out what to do...i'm 52 years old and last thing I want to do is lose my ability to exercise (studies show essential for BC survivors to exercise daily) as it's my stress reliever BUT I don't want BC to return or have my teeth fall out.
Any resources or experiences with bisphosphonates appreciated.
Thanks
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It was very simple a wool mattress pad. Polyester holds body heat, the wool diffuses it.
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MargoChanning -- can you please share the OTC supplements you are taking? Seems like I'm in the same situation as you with some osteopenia and I'm not sure doing infusion or shots are worth the risks..
thank you!
jp
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jpBCfree - sure, they are in Table 1 of the article link; here they are:
(1) Docosahexanoic acid or DHA (from Purified Fish Oil): 250 mg/day (2) Vitamin D3: 2000 IU/day (3) Vitamin K2 (non-synthetic MK7 form): 100 ug/day (4) Strontium citrate: 680 mg/day (5) Elemental magnesium: 25 mg/day (6) Dietary sources of calcium recommended
I take occasional calcium supplements but not daily anymore since I read there is a possibility of building calcification of the arteries and although I'm on the slim side, I have a family history of cardiovascular disease and my cholesterol has been elevated by aromatase inhibitors. I have a protein smoothie most days, I started that habit during chemo when everything tasted metallic and I ate poorly. I add skim milk, protein powder, oat bran and flaxseed meal along with various fruits. That is pretty much it for my calcium. So I have to say this supplement group listed above certainly did the trick for me with reversing osteoporosis.0 -
TrmTab,
I'm just now catching up with this thread, so I'm a bit late responding to you. I'm surprised that your BS has dismissed you 3 months post MX. Mine wants to see me twice a year for 5 years, then once a year. I'm not sure how long we will do that. I see my MO twice a year since I'm on Arimidex. I saw my PS twice yearly for the first two years; we just switched to once yearly.
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Thanks Janet -- I'm thinking I need to circle back on that. I saw my BS 2 weeks post MX and then 10 days ago for a +3 month follow up. After I got dressed and was leaving, I asked -- do I need to make an appt? and the nurse and receptionist both said "nope, your fine" ...so I left. My surgeon is a general surgeon, who in my town is the leading BS, but isn't only a BS...so perhaps it is different for folks who have doctors in a specialized practice? I know this doctor's head nurse (who I didn't see on my +3 month follow up)...will follow up with her directly.
Thanks for giving me the courage to speak up.
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TrmTab - I wonder if it's because your dx was non- invasive DCIS?0
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good point...I'll add that to my conversation with the nurse.
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By the time I moved, I was on a once a year visit with my MO and BS. I was to have one last appointment with the RO but I moved and he also has been on medical leave for a rare cancer (he's doing fine). My BS coordinated my mammograms. Now I just have an MO so he will take care of everything for me and I see him in January or February again - 6 months. I'm having no issues with my Fosamax (had GERD for years before it and Arimidex and still do) nor Arimidex after 2 years.
HUGS!
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DCIS requires a consistent level of monitoring as well. Although my BS won't see me for a year after my surgery, I was under the care of my RO for the past 7 weeks during radiation and now I will be will be monitored every 3 months by my MO who is managing my Arimidex.
Make sure you are seen by whomever prescribes the hormone therapy.
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Hi all -- I switched from tamixofen to arimidex about 4 weeks ago. I experienced vaginal discharge as a side effect of the tamixofen and I wondering about how long it would take to go away after stopping the taxmixofen. Can anyone help? I don't remember seeing discharge as a side effect of the arimidex. Thanks in advance.
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mltdd I've been on Arimidex since Sept 2014. I have never had a side effect of of vaginal discharge with this med. Some insomnia at the beginning and joint pain which got better when I switched generic brand to Teva. I really can't answer how long your side effects from Tamoxifen will last. All in all, it's worth the extra protection from cancer coming back.
God Bless
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MegansGrandma, glad that you've had good luck on the Teva brand anastrozole. Me, too. You started it a month before I did.
HUGS!
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