For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Jazzy...thanks so much for explaining this to me. I have never heard of this or even heard it discussed on the boards. How interesting. I see you also didn't need any chemo...that is for sure worth any inconvenience you had. Am glad to hear you are all done and doing well. How are you doing on the Arimidex?
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Hi shcatzi14- Thanks for your note. Yes, I was lucky to not have to do chemo. With the my pathology and my oncotype dx results, the med onc did not believe chemo would benefit my situation. More likely would cause more harm than good. I am doing well, glad to be done with the major stuff, but still wrestle with fatigue.
I have not started the Arimidex yet. They advised I give myself a few weeks to get healed up from the latest rad treatment before I begin. I had a dexa scan on friday to check on the bones before we begin. I plan to begin next weekend, I will let you know how it goes A bit nervous about the SEs but like everything else, everyone is different with what they experience.
Blessings to everyone!
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Jazzygirl, intersting to hear of your rad experience. I went into my surgery, thinking I would be eligible for the other kind of internal radiation.... Can't remember its name, bit it would have been rads twice a day for 5 days immediately after surgery. Unfornutately, the bs discovered node involvement, so I was no longer a candidate. I was disappointed.
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Jazzygirl I was more scared of Anastrozole than I was of chemo. Many of us have very minor SE. And when I say minor I'm talking about a little stiffness in the morning and maybe a slight hot-flash after a glass of wine or spicy food. I found my 2nd year to have less SE than my first.
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lago...me too
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Hi ladies- thanks for your feedback. I guess I have had trepidation with everything I have done so far (surgery, rad, etc.) It is just sort of the unknown of what you will experience short and long term, how it will affect your ability work, take care of yourself and others, etc. My body is also adjusting from having an unexpected hysterectomy that finally put me into menopause last year around the same time everything was going on with the bc diagnosis. So I already deal with hot flashes and the rest that goes with menopause these days anyways. I figure I will just continue on now with the continous spectrum of changes that will go on with my body and my life!
Wave whisper- sorry you were not a candidate for internal radiation. They told me the same thing before surgery, if there was any node involvement, it would not be an option. There are a couple types of internal rad, one uses a balloon in the cavity of the tumor bed if they do the surgery that way, the other type like I had with the series of catheters. You would likely have had one of these types. I hope you are doing well these days.
Will let you know how things go as I begin the Arimidex. I plan to start this weekend, just need another week to finish healing up from the last treatment!
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Internal radiation was a blessing for me, but as stated you have to meet several guidelines. Early stage, small and no lymph node involvement. It is very expensive and there again I was blessed to have good insurance. I had mine done in Dec 2012 and according to my insurance company it is still pending payment. They had to get a pre-authorization before they started and they did. Good thing, it was $62,000 just for the treatment center. They really take their time look at it and paying when the amount is that much.
As far as Arimidex is concerned the jury is still out. I don't want it to come back but I am starting to hurt worse in my back, hip and shoulder. Can't tell if it is from the med or older back problems. I see my oncologist in April and will talk to her about it then.
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I started on anastrozole a week and a half ago and so far, no SEs. Having a baseline DEXA scan next week so we can keep an eye on my bone density.
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My MO did not perhaps consider the surgery and meds with it when she prescribed the Anastrozole for 3 days post op. I have not had nausea/vomiting since Thursday (hours of it) and maybe the worst is over. Hardly any pain meds either so soon I can start to see if the AI is giving me any S/E. I see that some of you did not start it while on another treament. Sounds like rads may start 4 weeks post op so no time in between anything!
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Sherry I too have hip pain and I am a side sleeper as well. Of course mine was worst on my right side which is the side I naturally sleep on. I found myself turning to sleep on the left, and my left hip hurts so much I often have to lie on my back. Without Ambien I doubt I would sleep at all......getting comfortable can be so difficult.
I am really unhappy with my MO. I fractured my arm in two places in late December. Right up near the shoulder socket. My sister in Colorado, who is an RN, works for a BC center in Denver. She said to make sure to mention it when i saw my oncologist. I did, and he had no reaction at all. My one bone density scan was 18 months ago and was within normal rangers. Susan was stunned that he did not insist I have another one right away since that is how long I have been taking Armindex. She is not at all impressed with him. I don't know what to think.
My orthopedic surgeon is unhappy my neck is still so bad, despite tyhe disc fusion. It is terrible, he did say I have arthritis in my neck but he suspects something else is going on. He ordered a lot of bloodwork and I get the results next week. He suspects I may have an auto immune disorder. I wish I knew for sure. The neck is so bad. Nothing helps. I take gabapentin and muscle relaxers and pain meds. I take a break from pain meds sometimes but it just gets worse. After talking to my sister she suggests after I get my blood tests to simply take a break from the Arimidex for a couple of weeks. The oncologist she works for is a wonderful doctor who travels a lot lecturing, and she also researchs. Susan says her main goal is for her patients to be comfortable, above everything. She said they get more complaints from women on Arimidex than any other med, and these meds can be changed if necessary. Going off it for two weeks can be very telling. I have never had joint pain in my life other than my neck. Now my knees are sore too. I do move a lot, avoid sitting and walk my dogs daily more than once. I have lost weight and I feel great......just this relentless joint pain. It will never keep me down, but if I can sure frustrate me to no end!
Hi Schatzi!
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justmejanis have you considered see another onc? I know others that have switched after chemo because they felt their issues weren't addressed… so you wouldn't be the first.
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Janis, it is intolerable for you to be suffering so much. I, too, am astounded that your MO did not order another bone density test after breaking your arm. You deserve more and better attention. I, too, would suggest looking for a new MO, or at least getting a second opinion from another.
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I do see both my MO and RO at the cancer center where I go. I am not sure why I see both but still do. I am going to see my RO in June and so will talk to him. Maybe he will feel more sense of urgency. It is complicated trying to switch right now. I do plan on talking to my new Nurse Pratitioner as well. I find they usually listen better than the doctors anyway. Thanks Ladies!
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justmejanis My onc orders my bone density scan every year (I've had osteopenia since before chemo) I know our initial plan was to put me on Fosamax because at one time they thought it helped prevent bone mets, then they didn't (now they might again). She was going to use my osteopenia as a way to get me on it. When the plan changed she told me that my PCP should be handling my bone density issues in the future. IMO when it becomes an issue I'm going to see an endocrinologist.
So maybe just discuss this with your PCP.
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Hi Janis
....I hope you get some positive results from the bloodwork that helps the neck pain...to suffer like that is unbelieveable! Has the Dr. even suggested upping the dosage of gabapentin? I am now taking 3 a day...2 at bedtime. It seems to help a bit but there are days I wanna take 10 and see if that helps! I googled the dosage for it thinking perhaps I was overdoing it but the amount I take is 300mgs and some patients are taking 3400mgs (for seizures I think) so I didn't feel so badly about mine.I hate the fact that getting thru the night (mostly) depends on me taking pills, pills and more pills. MY PCP told me years ago when he was giving me acupuncture (he teaches it as well as being a family Dr.) that I would eventually get arthritis in the 3 discs and he was right! Without the Temazepam, I would NEVER sleep. I find it usually gives me at least 6 hours before the neck pains wakes me and I have to get up.
Good luck with your results!
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Ladies, it is so hard to know who to talk too when having problems. I had a follow up with my surgeon yesterday and that is what I told him. I have the autoimmune problem that can cause skin issues and fatigue. I have had back issues in the past and now they seem to be worse. I have only been on Arimidex for 2 1/2 months. He asked how I was doing and I said not too bad but because of the other issues I don't know. Since I had the internal radiation I have a rather large incision at the bottom of my breast to insert the balloon used. They only had to remove 2 lymph nodes (they were okay) and then the incision for the removal of the cancer. I have trouble with cyst in my breast for many years and it is hard to do a self breast examine. I have been having pain in the breast that had the surgery and I feel a small place. It is tender. He examined me and said we would just keep an eye on it. I go back to my oncologist in April and I am going to talk to her about the increased back, neck and hip pain. It is not something I can't stand at this time but if it gets to be that way I want to know my options. With so many doctors I really don't know who is in charge of doing what.
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ClaudiaMetz be sure you have a good PCP. When in doubt you can always start there. I totally trust my PCP. BTW I have burning pain under one breast (the one that had some tiny LCIS not the IDC huge tumor one) when I do my "massage" for my implants. I called my PCP. He said it was nerve damage. I know he's right because the burning is similar to shingles.
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lago my oncologists ordered the first bone density so I assume they will order one for fall. That will be two years. Still I am going to mention it when I go in June.
Claudia I feel your pain. I had no idea what was going on when first diagnosed and who was in charge of what. Everything moved very quickly and it was a confusing time. Talking to your PCP is always a good idea. Hopefully he will offer some answers. If that fails call your oncologist and ask them to please take the time to explain some things to you and what their committment to YOU is.
Schatzi I already take a large dose of gabapentin. Like you I was taking 300 mg. three times a day. My oncologost actually doubled that so take 600 three times a day. I asked both my PCp and MO about going off of it and they did not recommend it. Both insist it is helping more than I realize. Of course I can choose to go off, I have to wean slowly. I haven't done that just yet. It is confusing!
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That is really interesting. When I saw my surgeon, I told him when I have the pain (not all the time) it feels like someone has shocked me and the pain is really intense for about a minute. This usually happens when I turn over in bed or move my arm a certain way. I feel like I am being paranoid and at times. When you take too many concerns to the PCP they act like you are neurotic. I switched from one PCP to a new one about 3 months before the surgery. I really like the group but have not had a lot of interaction with them since I was seeing the surgeon, radiologist and oncologist (need to go back to my dermatologist). They have put me on Trazodone to help with sleeping problems.
I don't want to over react to every pain, but I did have pain in the breast and had always been told that pain was good because cancer usually didn't hurt. I always had my mammograms and all my yearly test. When I had my test done in 2011 they said everything was okay and what was there were cysts. In one year mine went to "just cysts" to "we don't like the looks of this place" and then "it is cancer". My mother's half sister died from breast cancer (on her father's side) and my cousins came to live with me when she did. One of them had early stage breast cancer about 3 years ago. When I tell a doctor that they have said to me "well that doesn't means you will get it". Why ask if there has been a family history and then make that comment. I am 64 and most of my life had so many cysts that when I was going though menopause I use to go to a surgeon who would drain them once a month. I did not take hormone replacement and would have to argue with doctors as to why I didn't want to take them.
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Screw that "breast cancer doesn't hurt." I had a pain that hurt when pressed but not badly. I was told it was connective tissue. I also had just been cleared with an US because they thought there was some change but all agreed it was nothing… 4 years later in the same spot a 6.5cm triple positive tumor.
If it hurts then something is wrong.
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Thanks I thought I was just over reacting. Another thing that amazes me. I was in surgeon's office and saw a wig catalog. I have always had thin hair but I did see when taking Arimidex hair could thin. After looking at it, I saw alert bracelets for lymphedema "left arm no needles no BP". I only had 2 lymh nodes removed and they did measure my arm and wrist at that time. I don't know how long the chances are for developing lymphedema but I didn't realize it could develop later and I was never told by anyone not to let use my left arm for BP or needles.
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Hi ladies,
Thank you all for posting the SEs of these drugs so we can have a clue of what's normal. I've been taking the arimidex for 4 months now. Yep, plenty of hot flashes and joint pains. I'm 57 but feel much older when trying to get out of the car or take a t-shirt over my head. What I am curious about is do any of you get a feeling like a racing heart or adrenalin rush? My pulse is normal so I guess my heart really isn't racing but I get this feeling for a few hours on most days. Different times, different circumstances but it always seems to show up. It unnerves me a bit.
Any thoughts would help me a bunch. xx
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Claudia, it never ceases to amaze me what doctors don't tell us! Pretty much everything I needed to know about my cancer came from sources other than my doctors. One thing, just because a SE is listed, it is not a given you will get that SE. I take a lot of meds and some have bad SE's and I don't get them. I do have the joint issues and some hot flashes but I manage. I did delelop lymphedema in my chest. Truncal LE. It is very well controlled and so not bothersome at this time. I had a lot of massage therapy which helped so much. I don't wear a bracelet I just tell nurses not to do the IV's and BP on my right side.
eileen I have not had the racing heart but anxiety could be a part of the problem. We can work ourselves up without even realizing it. If it becomes a concern do let your doctor know. Sometimes peace of mind can be achieved with a few simple questions.
Hugs ladies!
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justmejanis it's hard for our doctors to tell us everything. Some SE are not as common. Also if they did tell us everything many of us would be overwhelmed. My recommendations is to ask.Tell them up front you want to know everything.
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Claudia...I agree with lago about pain..I had shooting pains in my left breast for ages. Had 3 biopsies same breast...all said "no sign of cancer". Well finally the other shoe dropped and guess where?
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Hi Eileen...I am 69 and have been on Arimidex for 13 months now. Very few SEs but I do have racing heart at times but have had that off and on for eons. I have a fast heart rate so that explains a lot. I can make my heart race just by thinking of things, so basically I think it's more in my head. Have learned to slow my pulse but it doesn't always work. My point is...it's NOT the Arimidex...it's ME LOL
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Claudia-I agree with Iago, too. I had pain on the side of my breast, under my arm for several months. My mammograms came back negative as did the ultrasound. My gyn insisted that the radiologist do a biopsy on a lymph node. After the biopsy, he said he was 90% it was benign. Wrong! But they couldn't find anything in my breast. Finally, I had a MRI and there was a 1.2 cm tumor that was cancerous. So, if you have pain, keep telling them. You know your body.
Also, today, last year, March 20, 2012 was my diagnosis. Happy one year!!
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Hi ladies- although I did not have any pain before I was diagnosed, I had fibrocystic breasts for years so if I did feel any pain, it was usually around my period and related to the cysts.
My sister, on the other hand, found her cancer through a lump in her breast and it hurt a lot but she ignored it for awhile (she is a doctor and not a very good patient). Then it got a lot bigger and more painful to the point she could not ignore it. Her doctor said the tumor was near some nerves, hence the pain.
So I think women have to be careful about the generic pain comments, because pain always signals something is not right. It's our body's warning system. No one knows our bodies better than we do, since we live in them every day.0 -
If you are having sharp zapping intermittent pains post surgery, it is probably the nerves growing back. They grow VERY slowly. I still get an occasional 'jolt', its usually when I have sat on a hard bleacher too long or something like that.
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Hi All...I am about to begin 3 weeks of rads and then Arimidex. Has anyone considered having their ovaries removed to block the hormones? or has anyone done this instead of having to be on these potentially damaging drugs for five years? Thanks for any info you can give...I wish you all well.
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