For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Appointment was at 9:30. He thinks it's a cyst or maybe a blocked duct thing too. He's not concerned but just because of my history (breast cancer) he wants an ear, nose and throat guy to check it out. I'm so sad though. My PCP is retiring in July. This will be the last time I see him. I so trusted him. I knew it was coming but I thought I would have another year.
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lago I am relieved to know that it is a cyst. Your doctor is being prudent in referring you to an ENT.
I am sorry about your PCP too. I lost my doctor last winter when he moved to the Boise clinic. I was so very comfortable with him, he is the one who told me I had BC. I was given the choice to continue seeing him in Boise, or getting a new provider here in Nampa. Boise is not that far, 25 miles or so, but honestly cannot afford the gas to go there. I was assigned a Nurse Practitioner and she is really great. Very thorough and I am always comfortable when she orders tests. She will send me to the gastro doc for the stomach scope.
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SoLinda...funny you mention Warfarin...I was also on a blood thinner for 6 months...wonder if that started the hairloss? Who knows? At the time my hair was just starting to grow back in after chemo.
Lago and Janis...hope your tests go well and it's nothing meds can't fix!
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My son had a very bad case of heartburn / reflux?? a while ago, and thought he might have a heart attack. Thank G-d, just heartburn. MD recommended eating almonds (not salted, regular raw) and said it helped him too. So try the almonds, you don't a doctor's note for that! Also recommended TUMS. Feel better soon!
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dassi I eat almonds every day. I put them in my oatmeal. Nothing helps. These symptoms are getting worse every day despite doubling the Protonix. I eat early every day and at bedtime I still have the heartburn. This morning I had my usual oatmeal and then i got a terrible stomach ache. This is really frustrating and I know only the stomach scope will provide answers. Thanks for your idea, funny I already eat almonds.
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Janis, please keep in mind that your pain is not just pain, but your esophagus, which is being damaged, crying for help. Please, please either call today to set up your endoscopy, or, at the latest, gripe at length with your MO on Wednesday, who will no doubt get you moving in the right direction.
I ignored my reflux for too long, developed permanent cellular changes in my esophagus, and now need scoping every three years. Forever. Better to avoid this, no?
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I agree with BrooksideVT. I know how awful heartburn can be. Like I said I lost my vioce at one point years back. When it came back on chemo there was no way I was going to suffer again. I really hope they prescribe the carafate suspension and it works for you.
"Although these uses are not included in product labeling, sucralfate is used in certain patients with the following medical conditions:
- Gastric ulcers
- Gastroesophageal reflux disease (a condition in which stomach acid washes back into the esophagus)
- Stomach or intestinal ulcers resulting from stress or trauma damage or from damage caused by medication used to treat rheumatoid arthritis"
Source: linky (you may want to print the source link out for your doctor)
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Brookside and Lago, thanks to both of you for your encouragement and suggestions. I have to go in to get my blood drawn tomorrow, and I will leave a message for my primary to call me. She will definitely set up a scope. It is miserable but what really concerns me is how much worse it has gotten lately. I know I need to go and will make sure that my primary schedules something soon. My MO....thus far he is worthless. I am seeing one of his new NP's for this lump and let her know some of my other issues. Hard to say what she will do, almost any problem I have they blow off and tell me to go see my primary. Great help!
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If you are going to get a scope then you will see a gastroentinologist… and you probably should. I did the first time. That's who prescribed the carafate the first time. This is their specialty.
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Hi everyone,
Been awhile since I've posted. I've been dealing with low back/buttocks pain for past several weeks. Saw my onc for regular checkin this past Weds. He was doubful that it was reoccurrence of cancer/bone mets. He suggested that I try Alleve for a ten day period as he thought pain was due to inflamation. He instructed me to take two tablets in the morning and two at night. I went right from his office to store and bought a bottle. Took two tablets immediately and two that night. Repeated dosage for following four days and all my pain is gone. It was gone by day two. He was completely right. My pain was due to inflamation which is not unusual. Last night, however, I had heartburn from the Alleve and trouble sleeping because of it. He had warned me that this was a common SE of Alleve and that I should be sure to take it on a full stomach--which I did. But since my pain is gone, I'm not going to continue taking it for the full ten days. I am to call him and report back that the Alleve did work. So glad he does know what he is doing. Kudos to him!
I guess from my experience I would say to everyone, see your doctors. Don't suffer with pain or worry about what could or could not be happening. We know our bodies better than anyone, if something seems wrong, or off, not just our normal, get it checked out and deal with it. I know I am so relieved for having done so.
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Jania, I am so glad you will act on this. Truly, if your primary could have prescribed something to help you, you would have been all better a long time ago.
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Brookside my PCP has been prescribing meds for this. First Nexium, later Acifex, and now Protonics. Since nothing is working anymore she did say a trip to the gastro doctor is next. I am sure I will get the referral soon.
sherryh, what great news that your pain is finally gone. That is worth cheering for!
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5luvbugs: Yes, I have had the Prolia shot. I get my second injection on 5/9. I am 57. Started anastrazole on 7/25. My joints are achy, but I lift weights at least 2x's a week, and do yoga at least twice a week. The more I move, the less the achiness. Last week, my vision started to blur in one eye and had emergency laser surgery for a torn retina. Not fun. Can't see squat and couldn't read, watch tv, computer...nothing for three days. I still can't see very well. I hope it heals in time. Go back to the eye doc tomorrow. It is not a S/e of chemo per the eye doc--juset age and nearsightedness.
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Brookside yes, I am following up. I am not a happy cripple. I try hard to take a walk every day, and just walk around the house and yard as it gets warmer. Normal activities. Sometime the knee pain lessens but it never goes away. I am terrified of falling ever since I broke my arm around Christmas. I can't trust me knees. I feel like an old woman and I am 58. A work in progress for sure!
I should hear from my Nurse Pracitioner today about the h-pylori test. Then we will see what she plans to do as far as scoping and other tests.
Off to the NP tomorrow to get the new lump checked. Also talk about my Arimidex vacation.
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justmejanis BTW there are many SE of Anastrozole that aren't as common. I get fluid retention. My PCP at least feels that's why I have it. Anastrozole can also cause heartburn. I'm sure there are many other sources but here is one list. I don't think everything is listed: linky
So my question is do you take this on an empty stomach? I know I don't take any of my meds on an empty stomach unless I'm specifically directed to do so. (I don't take Carafate anymore but that's one that you take an hour before or 2 hours after eating if I remember).
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I have been on Arimidex for 5 months now and the only SE I have is hot flashes. But I had them before too, just not as bad. I read that women with higher Vit. D levels experience little or no joint aches and pains (Townsend Report). I never had any. I take 5,000 IU of Vit. D a day with my cal/mg. I take it at night. Arimidex is a walk in the park for me, but I still worry about osteoporosis. My MO told me to carry a backpack with 20 + lbs. when I go for walks/hiking. That kind of weight bearing exercise is good for the spine and pelvis.
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I still haven't figured out all these SEs. Last week I had terrible pain in one knee especially, and it hurt me to walk down stairs, touching it etc, and especially the change in position from sitting to walking or the other way around. Now the pain has disappeared again and it's just some mild stiffness in both knees. What's going on? I didn't hurt the knee as far as I know so why did things change? At least the situation improved. The worst part is sitting down for a stretch, especially in the car, and then getting out. I am sure many of you have the same complaints. Does anyone have an idea why one knee flared so badly? Maybe there's something to do to prevent it or ease it when it happens.
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dassi Not sure about the knee. It could be something unrelated to AIs. Yes I had the stiffness when sitting or standing in the same position for long periods of time the first year. The issue is very minor now because of exercise. Not just power walking but strength training too. But it also might be better because my body is now used to the drug and so far out from any SE of chemo and/or Herceptin.
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I would settle for a few aches and pains if only my hair would stop falling out.
DH and I are walking almost daily tho...started for 20 mins and it was painful. Did 45 mins this afternoon and it was good.
Is anyone here taking the weekly dose of Actonal...DR (taken with food)??
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Schatzi, what dosage of Arimidex are you on? 1 mg? I did cold caps for my chemo treatment and would hate to lose hair over these pills.......did the hair thinning start right away or did it take a while? I have only been on it a month and have not noticed anything. thanks
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schatzi my hair has been falling out too. I can't even think about cooking without putting my hair in a ponytail. I leave hair everywhere and it is awful. The joint pain though is no picnic. I feel for you and sure understand. I am surprised I have any hair left really.
dassi my joint pain is in my neck and knees but much worse in the left knee. I have no idea why. Tomorrow I go to the MO for my new lump......I am letting them know I am taking a one month break. I'll see how I feel after I have been off the Anastrazole for a few weeks.
lago I am still waiting for some word from my PCP about the h-pylori test. Looks like it will be tomorrow. I have read all the SE's on just about every web site. Not much changes!
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Went to endocrinologist today. She gave me refill for fosomax and said you take prolia shot or fosomax but not both. Still concerned about hair thinning....are we talking shedding like with chemo or just some mild hair loss.how common is it among you ladies?
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My hair was fine, no thinning at all.
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schoolmom....I take 1 mg a day...as for the hair thinning please don't be overly concerned. I would say most of the people I talk to have had NO hair loss at all. On the other hand I have very few aches and pains.
Remember I am 69 and would likely have hair thinning regardless. It seemed thinner after it started to grow in after chemo and just never thickened up like it was before. Also I stopped colouring it after 25 years and that alone made it have no body. It just comes out in my brush and I see it on the floor sometimes.
I would never even consider stopping Arimidex if I were not so ER+ weak. Even so, I am hanging in until my next mammogram in August. Will decide then.
As for Prolia or Actonel or Fosomax, my PCP is pushing for the 6 month shot but I have decided to go with the weekly Actonel DR....taken with food. I have a problem with 6 months of drugs at one time. If you are allergic, then what?
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I too opted for the aledronate/fosomax pill weekly rather than the prolia. my endocrinologist said it is serving the same purpose. I also read an ad about prolia in AARP magazine and said you probably should not take it if you have had thyroid or parathyroid surgery. I had parathyroid surgery about 6 years ago and that is what has caused the osteopenia to begin with. She just said make sure you take it with water and stay upright for 1 hour following and do not eat. Apparently many people get acid reflux from it so make sure you follow the guidelines when taking it.
I am just thrilled that I do not have any dr appts until June!!! ( except for getting my chemo port flushed next week) If my petscan in June comes back ok my onc. will let me remove the port. Last chemo was in Jan. so I will be glad to get rid of this.
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Hi ladies- just thought I would pop in here since I have not been here since I started the anastrazole about a month ago. The SEs so far have been tolerable- some bone pain (mostly at night after I first take it before bed), stiff joints, some hot flashes (those were going on before too). I have noticed my skin has really dried out in the past couple of weeks. I have some nausea on occaison too. And some fatigue, which may be from the meds or any number of other things.
In general, the biggest thing to adjust to is the stiff joints. I find I cannot walk at a clippping pace or pop up out of a chair and move quickly anymore. I had a sore knee for awhile, which I think was from bursitis so I iced that, and that is better now too.
I started working with a personal trainer at my gym to lift weights and also am swimming and doing yoga. As many have commented here, the more you move, the better this all goes.
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I saw a Nurse Pracitioner today instead of the oncologist. She was wonderful and really, truly listened to me. The first thing she told me was to stop taking Arimidex for now. She said they will evaluate me later and if the joint pain is better, then they will likely switch me to a different AI. She did a very thorough breast exam and could feel the lump that is bothering me. She said it could be scar tissue but of course needs to be checked. So, I am scheduled for a breast ultrasound and a diagnostic mammogram on Friday. Also a DEXA scan. She was concerned when I mentioned fracturing my arm in two places just four months ago. Her name is Holly and I liked her so much better than my MO! I should get the results Tuesday by phone. if not they went ahead and scheduled an appointment for Thursday.
I am thrilled about taking a break from Arimidex. My sister is a BC oncology nurse. She said one of their patients is a really neat gal who was so positive and strong. She sailed through both chemo and rads, worked full time the entire time and never skipped a beat. Arimidex brought her down. She told the MO it was pure hell and insisted on getting off ot it. She told my sister that she would do both rads and chemo again before she would go on that drug again. Interesting how some people are so affected by this drug and others have so few problems.
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I have only been on it for over a month but there is no way I would do chemo again instead of this. I was unable to eat and barely drink for 10 days after each chemo from the taste thing. My cancer is grade 3 agressive and high ER + and PR+ so unless I am bed ridden I am going to keep on with the pills. I am 60 and have had knee surgery and sore muscles prior to all this so I cant say they are SE of the med.
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It is a hard thing to decide ...whether to take the Anastrozole or not. I can handle the aches and pains (at my age would likely have them anyways) but the bone and hair loss really irks me. At just 2% ER+...it's a hard decision to make.
I probably should have started the Actonel a year ago when I started the Arimidex but I hesitated because of adding another pill to my routine.
Good to know about the Prolia and the thyroid surgery. I had most of mine removed and also had radio active isotopes.....still dealing with nodes because not all of the one side was removed. It's not malignant just a royal pain having biopsies and ultrasounds.
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schoolmom I understand the need to stay on it. In my case I am not going off of an AI. For now I am taking a break which is not unsafe. I am sure I will be on a different med by late next month. Basically the break is just to see if the bad joints improve. If not, I will likely go back on it. If I am much better then I can try a different AI. I don't mind aches and pains but it is the severity of these that make me so miserable. I really don't think I can hobble around like this for another 3.5 years. It is BAD! I hope you don't get the SE's and have an easy time with this med.
Lago.....where are you? Just wondered if you have any more news about that cyst? Thinking of you!
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