For Arimidex (Anastrozole) users, new, past, and ongoing
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Hi Carolyn, I changed my MO for just that reason. I went to a large cancer in Ann Arbor, not U of Mich., thinking I would get better care. Was I ever wrong! The first MO pretty much went over my Oncotype score, asked if I had any questions, prescribed Arimidex, and said see you in 6 months. When I asked about any test or mammograms he said he didn't handle those. I really felt vulnerable! Not the way a cancer victim should feel with their doctor. I made a second appointment at my cancer center close to home( smaller city) and was really impressed. My new MO really looked over my history, very thoroughly, we talked quite a bit, I asked her for a vitamin D test and she added to the other blood test she wanted me to have. Then she wanted me to make a follow up appointment for a month after starting the AI. I feel so much more secure with my new doc. Bigger isn't always better I found out. My radiation was done at the the local cancer center as well. I had a second opinion at the large center, but didn't go there. Both my ROs were top notch as well as the techs and nurses!
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I wish I had the option of a small town oncologist, to be honest. I live in Jacksonville, Fl. Huge place. My oncologist is close to my home, but she has a large practice. I'm really discouraged. I don't want a recurrence. I can't believe I've had two cancers since 2013. Unrelated, early stages thank god. Still. Why
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Carolyn. I have had that surgery (only ascending is left) and still use lomotil and bentyl. Can you use these drugs until things 'settle down"? Maybe your PCP can help.
Ohio
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Thanks, Ohiofan! Glad I'm not alone in dealing with both. I've been taking Imodium like candy and it's barely touching it. I may need to try Lomotil. Did the Arimidex give you diarrhea?
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Carolyn also, who is the manufacturer of your anastrozole? The filler could be the problem if it is a generic. Also, you only recently started taking it and many SE's subside once the body gets use to having the estrogen sucked out. Sorry you are experiencing problems with your MO. Even though your MO is nearby can you travel a little further, outside of Jacksonville (or since it's large, to the other side of town)? May be worth it to travel 15 or 20 minutes more to get to another doc who listens.
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Carolyn I would recommend getting your GI dr or surgeon involved and working with your oncologist. I imagine they may have a better solution or some ideas to try.
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I love these boards. So helpful. Let me just say to you all how wonderful it is to read comments which truly show that regardless of what you individually are experiencing you still care very much for our sisters (and brothers) who come for support.
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Patoo, so true. This is the best place with awesome people.
HUGS!
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I think Florida Cancer Specalists are in Jax. It's a huge state wide practice. They are here in Clearwater, it's who I had until Humana kicked them out of network. My PCP said they use the most expensive drugs, but have a very good outcome. You also have Mayo there. Are either of those an option for you?
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Thank you for all the responses to us having issues. I did call the pharmacist yesterday to ask to switch to name brand Aremidex. She said it would be $110 a month with insurance. I guess my first step is to find out my MRI results this week and see if this is medicine related or not and take it from there. I would pay the extra $100 to feel better but I know there are other options too like the online pharmacy. My DH pulled the walker out yesterday and put tennis balls on the legs so I dont scratch the wood floors. I am using it to pull myself up from a seated position. My leg is still in excruitiating pain.
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vettegirl, try going direct to the AstraZeneca website. I'm not sure what the qualifications are, if any, but for those getting their brand name arimidex from them it is only $30./month.
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Thanks, everyone. I really appreciate the support and suggestions. I know I need to call my GI doc, but I'm so busy that the thought of more appointments really gets me down. My frustration is in having to deal with multiple calls and messages that just don't seem to lead to direct feedback. I'll call this afternoon and see what I can find out.
The MO I have is very good. She's with cancer care specialists and close to my home. I probably should try her office again. I have an appt with my pcp after work today, so having her input will most likely help. I'm just tired of the whole process and feeling sorry for myself. Need to buck up
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No qualifications needed, just a script from your doc. Then it's $30.
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I saw my PCP yesterday. We talked about the diarrhea, and she suggested several things (already doing them all, but she recommended a different probiotic, so I'll try that). She also mentioned that since my 2013 rectal cancer was an adenocarcinomalike my breast cancer, my MO might want to screen other areas where they can also show up. Sigh.
Trying to figure out why my body has created two similar cancers and how I can prevent it from happening again. Looking at diet, emotions and other factors. Unfortunately, with the diarrhea still in full force I have to be cautious and eat low fiber foods for the time being. Before that I had really amped up my fruit, vegetable and whole grain intake.
Thanks for listening and being there.
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Carolyn62, it must be scary and frustrating to be going through all of this. I will be praying for you.
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Hello all -
Joining you here after a brief interlude (5 days) with Tamoxifen. Other than some aches, pains, and a few random headaches, I think I'm ok. My knees are the worst and tend to stiffen up from sitting in one position. Oh, and the hot flashes.
Carolyn62 - you sound overwhelmed and with good reason. Thinking of you.
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Hi all..
Carolyn, sending hugs...sorry you are going through this. I do think it is important to feel the MO is listening...even if changing MOs doesn't make sense, maybe let him or her know how frustrated you are in that regard?
Molly, given how you are feeling I wouldn't wait until May to talk to your MO...
I've been struggling a bit, though not as much. My knees have been bad for years (so I can relate to the issues Pennsy and others mention), but they seem a bit worse which is discouraging. Just trying to walk as much as I can since they are worse in the am...
Octogirl
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Carolyn...Maybe you have mentioned this but...Take someone with you to your next appointment to advocate for you and your concerns. If you can't switch Drs, let them know your concerns and perhaps an advocate can help with that. Keeping you in my prayers.
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Carolyn-My heart goes out to you. You have had to struggle through 2 cancers. Hoping the diarrhea clears up for you. Could your MO switch you to another AI?
Question: Once you started Arimidex how long was it before you started feeling side effects? I've been on mine fore one week and haven't noticed anything except a small amount of brain fog
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Carolyn, hope you get some help/relief soon.
I have a question for all. Has anyone ever had a small pea size lump in your finger where the finger meets the palm of hand. I found it last week when I picked up something and noticed a tender spot. No pain but tender when I apply pressure. Just curious. Thanks
Praying for everyone!!
Did a bit or research and guess it may be a ganglion cyst which I guess is nothing to worry about. Thanks
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Suz-Q, I noticed the SEs I am having right away...and one of them, insomnia, seems to have resolved after only two weeks (though I am still having very strange dreams, which I had been warned about). So maybe you are one of the lucky ones!
Hugs;
Octogirl
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My SE' s started within the first few days. Worst is weight gain & hot flashes. Hope this helps.
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lago-thank you for sharing about the aromasin! Arimidex crippled me after 2 months, all side effects went away when I took 2 weeks off. I've been on femara for a little over 2 months now and I am having enough bone pain that I limp around and wake up multiple times per night due to pain. I hate switching due to increased hot flashes and insomnia when I restart, but you have given me hope! Thank you!
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That little lump in your hand-I have that-it is related to the trigger finger from what I researched.
Just wanted to let you guys know-my mri came back that my right knee has really bad arthritis and it is very inflammed, which is why I have been in so much pain. I see the orthopedic tomorrow and the rheumatoid dr in a couple of weeks. I think I also have it in my hands. Bottom line though is it is not related to the aremidex. I wanted to make sure of that as I really need these cancer meds so went to my primary dr. I knew the MO would only switch my meds and not get to the bottom of anything, so at least, now I know. So-some of your issues may not even be related to the aremidex either-have some tests done if you are in pain that you cant handle. Just a thought that may help someone else.
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Ladies, Dr Susan Love's Army of Women is conducting a study at the University of Michigan in Ann Arbor, Michigan, on chronic pain after breast cancer. I got this in an email, which I'll be glad to forward to you, just PM me. Here's the opening paragraph:
We need women living in or willing to travel to Ann Arbor, MI, who have been diagnosed with stage 0-III breast cancer in the past 12 years and are experiencing chronic pain that has developed or worsened since their breast cancer diagnosis to participate in a study investigating the impact of the medication, duloxetine (Cymbalta), on chronic pain. We have recruited for the study in the past but the research team needs more women to sign up!
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HA Vettegirl, when I saw your note about trigger finger, I thought can't be I shoot right handed. Then I did my research.
Thanks for your input...
Hope I made you smile!!!
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Suz-Q, it took a couple weeks for my SE's to start. I initially was tired and my right knew got worse. Then I felt pretty good for a few days. Now I feel like garbage most of the time. Octogirl, yes I may not survive until May. I am stepping up my activity level for the next two weeks to see if it helps. I get so tired just walking up stairs and my joints are very stiff.
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I had no SE for 3 months. Then they gradually got worse over the 3 years I was on it. Thank goodness Exemestane isn't causing these problems.
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Carolyn did your PCP suggest stool tests? It just occurred to me maybe they should rule out other causes but surely you dr thought of that. I also wanted to mention that my son has Crohns and had c diff both and one thing that helped him quite a lot is Florastor.
Yes Tikka I think that is trigger thumb. I used a hot pack at night and after several weeks it improved.
Periodically I pop in to recommend exercise for pain. I used to be achy every evening but lots of walking helped tremendously. I hope this helps someone.
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Here's the link for the study for cancer pain at the University of Michigan. Perhaps some of you might be interested in participating. BC Pain Study.
HUGS!
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