For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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My PCP felt as I did that it's just a cyst or a blockage but given my history (of breast cancer) he wants me to see an ear/nose/throat guy. Earlier appointment is in a month. My PCP said the wait isn't a problem. Thing is the lump moves around and is squishy… not typical of cancer. It's still there and hasn't shrunk.
But I know when I broke out with a rash (while still on Herceptin) I couldn't get in to see the super special dermotologist recommended by my onc for 6 weeks. I ended up cancelling the appointment because it went away 2 weeks before the appointment.
Working on-site the rest of this week (and maybe next) so I won't be posting much.
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lago I remember you had the referral to the ENT doc, just couldn't remember when. Soft and squishy is very good. Well, you know what I mean!
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Janis, I saw my MO today about the severe joint pain/stiffness. She's taking me off Arimidex for 4 weeks (like you!) to see whether the symptoms get better. If they do, she'll switch me to another AI. If not, we'll talk about other options, although there are few: a third AI, Tamoxifen (although she feels it's not as effective as Arimidex) or just trying to alleviate the pain through PT, acupuncture or pain relievers. I still have at least 4 years to go.
Both she and my PCP, whom I saw day before yesterday, believe that my shoulder pain is different, unrelated to the Arimidex. They're sending me for a shoulder MRI and appointment with a shoulder specialist. Unfortunately, I can't do either of those for 6 weeks, because I'm heading out of town. I had rotator cuff surgery on the other shoulder 9 years ago, and the right shoulder now feels like the left one did prior to the surgery (and I'm right handed).
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Wave Whisperer I will be very interested how you do on your break. I had my last pill on Wednesday. I think I will also be off of it about a month. It sounds like our MO's are on the same wave length. She indicated we will likely look at Femara or Aromisin if the joint pain improves during my time off.
Now if they can just figure out what is wrong with your shoulder. And my poor stomach!
I had good news today, two simple words: scar tissue. That was revealed this morning after my tests. The radiologist came to talk to me and said they did extra views, and it looks like thick scar tissue. Happy dance! He does want me to return in 6 months for another mammogram rather than wait a year. N ow the next phase, I see my primary Wednesday to get the ball rolling on stomach tests. I need a stomach scope soon.
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Yay Justmejanis! Good news.
Good luck with the esophocam. To be honest all those will tell them is if you have an ulcer (or cancer but I doubt that). It won't solve the problem. As I mentioned treating "gastritis" as they call it can be challenging. It can be a crap shoot so they might have to try different things. I also have IBS and there is no "cure" for that. For IBS (irritable bowel syndrome) I control with diet. I know what my triggers are. High fat foods from animals. I haven't had a hamburger since 2007. Also I can't eat huge meal… or I bloat and get uncomfortable.
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lago I see my primary Wednesday for a follow up to the blood work, then a referral for the stomach issues. I did write down the name of the med you suggested. Carafate Suspension. Depending on what they find maybe she can prescribe it. I need something that works!
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Janis, because you are in pain and she knows you are, why don't you give her a call and see if she can call in that prescription right now? She could also get the ball rolling on the GI consult, so you could spend your time with her more effectively on Wednesday.
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Brookside I expect that she is already working on the consult. I think I will have the appointment already set up by the time I go in on Wednesday. Since I am taking double the Protonix right now it hasn't been as bad. I'll make it till Wednesday but am going to ask if she thinks that med is indicated. Today I have a follow up appointment with my Orthopedic doctor. He is the one who did the steroid injection in my neck. He said that it may take up to three injections to get relief. I am not sure what to do about that. My left knee is giving me fits too. They don't work on knees there. I have no idea why the knee flared up. it has been bothering me for months but I assumed it was from Arimidex. Yesterday when we were walking the dogs it felt like it was 'slipping'. Then I got a sudden sharp pain, now it is is so sore I can barely move it. Great. What next? Enough is enough you know? I am getting so frustrated with this old body falling apart piece by piece.
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Okay, red face anyone? I never had hot flashes during menopause.....who knew that was a risk factor for BC? I have none now, and even asked my MO if that meant the anastrozole wasn't working. She said that would be impossible.
But the last few weeks I have had an unconfortable red face: after a mixed drink, and worst, when getting in the car when the temp. inside it is about 70+. I look crazy, and it feels bizarre for quite a while after. Is this a hot flash issue somehow? Exploding face syndrome?
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Chris, LOL on exploding face syndrome. I like that one. Sounds like a hot flash to me. I get them but not too often. My thing is night sweats. Does the flush last very long? How often is it happening? Hot flashes are not uncommon when taking Anastrazole.
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Chris, red face usually goes with hot flashes. I don't know if they go separate, but it could be.
Justme, I have real bad knees, since way before my bc Dx. I never know if a bad flare is from that, the arimidex, or just getting older. But so far, 8 months into it, I can live with it. And since I am 98% ER+, I will have to have real major SEs to stop. I also am osteopenic, so dealing with those issues from the arimidex, antacids,and other meds. But I am surviving and will do what i can. And that's all anyone can do. Much love.0 -
Chris it sounds like hotflash to me too. I don't get redface because my hotflashes are so slight that I'm not even sure they are hot flashes. I may be pale but I think having olive skin helps.
Justmejanis I really hope you get relief soon. Also know that staying on drugs like protonix can cause osteoporosis. Also when/if you go off it you need to ween off it slowly or you'll be in worse shape.
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QUESTION: Have all you girls had your port removed after chemo (if you had one). I was suppose to get mine out tomorrow but I got scared with a few girls telling me that they left theirs in for a longer time (and some had a recurrance- not all breast cancers though). I finished chemo in January and Rads on April 4. Other people had PT or CT scans - I did not, now I wonder if I have cancer in any other place, How will I know without a test...If I get the port out I would have to get it replaced?(negative thinking I know but I got myself all worked up and now I have to see the doctor tomorrow instead of finally getting that thing removed!!!! Help clear my head!!
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5LuvBugs my onc likes her patients to keep them in for 2 years because that is when most recurrences happen. I finally got that thing out this past November. They can always put another one back in for people who need it but at the place I go they won't put it in the same place. There is an increase risk of blood clots if they do that. Seems most women on these boards do get it removed. Also remember I had a much larger tumor & it was HER2+. Bit more aggressive.
If you leave it in you will have to get it flushed regularly.
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I HATED that damn thing, and got my port out two weeks after my last chemo, the earliest they would allow it. It was psychologically a very good thing for me to do... getting rid of it helped me move forward.
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I have to keep my port for 6 months after last chemo. I will have pet scan in June and if all is clear port removed in July
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Janis, I am so glad you are already feeling better, but OMG isn't it nuts the way we have all these issues and each one needs its own specialist? Right now, one side of my neck feels tight. I've emailed the RO, who says it's not from the rads. So is it the BS, MO, ENT? The MO had indicated that he will "triage" any issues, so I guess he's the first line. On the other hand, I'll see the ENT in a month anyway, and probably, if I keep stretching that muscle, it will be all gone by then. Maybe I'll just email all of them and let them hash it out.
One good thing--your primary and your spine doc will both be delighted to take a look at that knee and let you know whether you need a wrap or an antiinflammatory or referral or whatever, and you'll see your primary tomorrow, so you'll know what you're dealing with before you leave her.
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Everyone, when did your arimidex joint issues start? I started the med on April Fool's Day (seemed appropriate, no?) and started exercising about the same time. Not sure if my new twinges are from exercise (back off a bit), or from the pill. Is it too soon to be from the med? And what have you been doing for those aches?
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Janis, I stopped taking Arimidex on Saturday and would you believe that by Monday night the joint stiffness was better? Even the darn shoulder seems to be better! Medically, I'm not sure improvement that soon is even possible, given that I've been on Arimidex almost a year. Now this AM, the shoulder is hurting a little. But I'll give it a few days and, if the improvement sticks, I may cancel the shoulder MRI and appointment with specialist and see if I can switch to Aromisin right away.
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BrooksideVT My SE started about 3 months after I started taking it but it might have been earlier. I was pretty stiff from chemo and that was getting better so I thought all that stiffness at first was from residual chemo SE. 1 year after being on Anastrozole my stiffness is very minor. I was always power walking but I restarted strength training. I believe the strength training has helped. I didn't strength train after BMX/Chemo. I couldn't hold heavy weights for a while with the healing and LE… and continued surgeries from reconstruction.
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Brookside you remember all my appointment dates better than I do! I chose the most conservative approach to the knee treatment. Stay off my feet for a couple of days. ice it and elevate it and see if it improves on its own. I am so hoping. My nurse called to let me know my test results. Mammo good, scar tissue, etc. I need a repeat mammo in 6 months just ot be on the safe side. They will schedule that when I see my MO in September. She said Dr Pulver read the DEXA scan report and all he said was that my bones are great. So for now, they want to focus on how my joints are doing while being off Arimidex. At some point in the next few weeks they will make a decision on what medicine to take. They of course will go over the options and the risks of each one. If my joint pain doesn't improve they will likely keep me on Arimidex. I will just have to cope with the joint pain. I suppose that is inevitable. I can't take any Nsaids because of my stomach issues. Oh, I have an appointment tomorrow with my primsary NP. She wants to go over my blood work and then get a referral going for the stomach problems. She wants the scope down ASAP. Oh, i have another neck injection too. The surgical center will call and get that scheduled. If I only get 1-2 days relief like before, they won't do the third. However if my pain is better for two weeks or more, he does want to do a third injection which he thinks will really help. Thanks Brookside for thinking of me. How are you coming along? Thanks to everyone for some great advice as well.
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Ruthbru
has been saying it all along.
I found it on Pubmed.http://www.ncbi.nlm.nih.gov/pubmed/19274852
Prunes build bones.
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Nice when my advice is actually backed up by science
. Eat a serving everyday for both bone and colon health.0 -
Just bought a bag but I've been scared to try again. Last time they gave me bloat/gas.
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Work into it and/or spread them out through the day if you have that problem.
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Ruthbru---I have a nice batch of sultana raisens soaked in gin, but forgot what they are helpful for? (I've taken them before. Rather tasty.)
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arthritis like symptoms....produces a natural cortisone effect
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ruthbru--
Will you remind me what your "daily dose" of prunes is? I'm seeing one of the locations on my bone density results is lower than I'd like and I'd like to improve it.
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virginiab the research I read said 8-9 prunes a day. (3 at each meal)
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I eat whatever one serving size on the box says; which is usually 5 normal sized prunes.
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