Arimidex - Coping with the SE's
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Ruth, I was a year out from chemo and my onc recommended it.
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Thanks.
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New to this thread; need some opinions.Forgive the length.
Am currently post UMX and receiving chemo. Had third of sixth TCH today, will continue Herceptin for one full year. MO wants to start me on Arimidex in March when sixth tx. done. I am 48 and was not menopausal prior to chemo, but no period since. MO says we will do blood work to determine if hormone levels at that point indicate that menopause is likely here to stay, which will determine if I should have Tamoxifen vs Arimidex, but he prefers Arimidex for "less serious SE's." Have researched both, and get the point, but this doesn't exactly sound like a walk in the park either. As others have said, by the time you get to this point, you really are just drained on so many levels and not up for more unnecessary interruption of life.
I am concerned about joint pain, lack of libidio, hair thinning, bone loss, depression, inability to lose weight, fatigue, and mental "cloudiness."
Let me explain that I am a health care provider myself (advanced practice nurse) and cannot afford to make mistakes with a cloudy brain. My work involves 24-hr on call shifts and is physicially demanding. Getting through chemo while working has been the hardest thing I've ever done. Fortunately, I have wonderful partners who arrange the schedule to give me a few days off after each round.
I take glucosmine, B6, Vit D and calcium and have not had neuropathy or joint pain so far. I have a history of chronic depression. Let's just say that took many years to find the right treatment, but finally found and was doing great on Effexor before all of this, and am still taking now.
I have used cold caps to try to minimize hair loss. As of today and tx #3, I have had to cut my hair into a buzz cut just before Christmas due to shedding being messy and annoying, but have not lost any since, and still have a fairly good covering. Was hopeful to try and keep that, and look forward to regrowth after #6. Now I find that this could last 5 years....ummm no.
Libidio; well, like everyone else, I'm sure, there is the fatigue and self consciousness of my changed body, but the real issue is my DH who thinks I will break if we try. He just keeps saying that when I finish chemo, he will feel better about this particular issue. Again, 5 more years....really?
Finally, the weight issue. I gained a lot of weight while in grad school. Once I graduated in 2010, I joined a gym (first time in my life, didn't know how to turn on the treadmill), lost 15 lbs., got a new wardrobe, haircut, got my nails done...in short, was feeling good about me.
Now this. Boobless, hairless, and all the weight (and more) regained.Will do reconstruction eventually, but PS wouldn't do it with MX as there was a lot of controversy pre-surgically about my actual diagnosis, which did turn out to be more invasive than the biopsy indicated. ANYWAY; here's my question. I am both HER-2+++ and ER+, but only 25% ER+. Still have my ovaries and am BRCA negative. Asked the MO if Tamoxifen/Arimidex really added that much to my long term prognosis. His response was that chemo/Herceptin gives me a probably 75-80% chance of nonrecurrence. Tamoxifen/Arimidex would up that to maybe 85-90%. Everyone has to weigh options and make personal choices, I understand--but I am thinking maybe this is just not worth it. What is the perspective of others using this treatment? Given my overall picture, what do you think your choice might be? Thanks.
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Hi Dariam,
I'm sorry you had to join the BC crowd, but glad you found all of us. You are one strong lady,and have been thru a lot so pat yourself on the back and take a deep breath and relax. For your specific question, as for me, I'd say try the arimidex and if you find side effects you just can't stand to live with, make your choice about taking it at that time. Lots of us don't get any side effects at all....others get horrid ones. Others have manageable ones. The jury's out on which you would be.
I also don't know why you think you wouldn't have hair for 5 years......that's not a SE from Arimidex to my knowledge. The libido question is the same thing. I don't think the libido suffers, but you may have "ahem" dryness. But there's answers to that too.....and again you may not even get it! And lots of women on Arimidex don't gain weight or are able to manage it. Sounds like you like the gym, and that'll probably be your best friend for the time you're going thru this.
That's my thoughts on the subject.......for what they're worth0 -
Darlam, most people do not have horrible SEs. It is naturally the people who are having problems who post more. The rest are mostly just out living their lives. I am 4.4 years in. No bad SEs; nice hair, no weight gain, mind as clear (or as cloudy) as it was before, a solid marriage. Arimidex has not made my life any worse, and in fact much better because I have the peace of mind knowing that I am doing something long term that is reducing the chance that I will ever have to deal with cancer again. (And some statistics are saying in continues to have a risk reduction effect 10 years after finishing with it
). All that being said; if you end up having bad SEs you can try something else, or just quit. It's not a cut in stone type of thing. Certainly worth a try!0 -
I have 6 months to go. I have had ups and downs but gee....10 years protection! I hope that is correct. I have followed the plan for 4+ years and am ready to give it up in a little bit. I also have lost weight since my diagnosis and have switched to being a vegan which works really well for me. My mind is clear, I hope. I am a writer and librarian. My hair is good. I have a bad knee but other than that I feel good. I concur. It is worth a try. That's what I did, try and here I am almost five years later.
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Dariam....
I have minimal side effects from anastrazole. Have a bit of extra achiness, and a slight metalic taste. Otherwise, I am just fine.
- Libido is just fine. Still multiples.
- I am toned and buff. I am back to my pre diagnosis energy.
- I am roughly the same weight I was when I finished chemo. I lost much of the weight I needed to lose. I had gained weight right after my divorce 5 years ago.
- I am still able to do endurance sports, so can cycle or ski for hours on end.
- I will let you know about the hair when I get it trimmed and styled tomorrow. It has come back quite nicely.
- My brain works just fine.
I was initially scared by all the issues that some other women have. But mine have been minimal. I finally realized that if I sailed through surgery and chemo, I should expect no less from this part of treatment. It has proven to be the case.
The most important thing is that it boosts my chances of being here in 10 years from 3 out of 4 to about 9 in 10. So major peace of mind, as Ruth says. - Claire
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Thanks for your responses and support. There are two things that stand out to me.
One: all of you who responded are ER positive and HER2 negative, and that is a major difference. With that diagnosis, I wouldn't be questioning this. The point is that I will have already gotten pretty much the benefit I'm going to get from chemo/Herceptin. Tamoxifen/Arimidex would be just a small amount of extra insurance. Any other + HER2 people with low ER positive scores who still decided to do this?
Two: Wish I could say I have "sailed" through chemo. Anything but. I have been so nauseated that I literally cannot get out of bed from about post chemo days 3-8. They have tried several different anti-nausea meds with no relief. Have done acupuncture, SeaBands, ginger; you name it. Fail to all. Have been on the chemo threads, have tried everything and anything that worked for anyone else. MO said at the outset that they have "good meds" nowadays and no one should have to have a miserable experience. Yeah, so much for that. I am so sick of being sick. Really would like to try to get back to life without SE's.It is taking all my emotional energy to think about getting from here to the end of infusion treatments without thinking of years more of who knows what.
I don't want to take foolish chances by any means. And it's true that I could try and see what happens. I just know from my experience of trying to find the right anti-depressant that they start one, then it doesn't work or you have bad SE's, but you need to continue for at least 4 weeks to get enough into the system to truly evaluate. Then it is determined to be less than effective, so they try another one, and the process starts over. It is a difficult and drawn out process, at best, though finding the right med in that instance was truly worth it. I see the possibility of a similar experience here. I just don't know if I have the emotional energy for that battle at this point.Sorry, just finding this a more difficult decision than anticipated.
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Saw my MedOnc and she switched me to Aromasin. I hope I have many fewer SE's from it.
I had my mammogram and all is good. Happy dance with that! Doc said my labs are all good too.
Now we will see what adventures aromasin holds in store for me.
Hugs Ginger
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Ginger - happy dance! Great news! Let the adventures begin
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Goldenlover - just want to say I'm thinking of you, and if is is shingles, hope you get it EARLY.
Ruthbru- my docs at Dana Farber had me wait 6 months after chemotherapy - all was fine when I got the shiingles vaccine. I was 62, so over the 'age' suggested then for the vaccine.
Rocket - I know what you mean about having to be our own advocate. I had to FIGHT with my PCP, finally changed, when my TSH was 5.9 - and she was telling me it was "within normal range." I think the need to FIGHT was more painful than the exhaustion I was feeling, seriously. Maybe that's why we are all so EAGER for NativeMainer to get a GOOD DOCTOR who is looking out for HER, and not having to feel she has to work out all these complicating issue on her own.
While we can support each other, help answer some questions, each of our situations is UNIQUE and as bc survivors, may have different causes, ramifications. DAMN - sorry, but it's just such a sore point fo rme, having to FIGHT with doctors to get answers, even to learn what are the questions we should be asking. My docs at Dana Farber as so fabulous - answer my emails very quicky with INFORMATION, suggestions, and are so AWARE of this feeling of being concerned when new "symptoms" occur -
TO THE NEWBIES on the A TEAM. I agree with ruthbu - I'm 4 1/2 years - and only 'complaint' really is weight gain ( but that's ALWAYS been a problem for me) and other meds I take contribute to it. The BENEFITS so, so ( times a zillion) out weigh the challenges of an AI, I give thanks many days a day for having this medication in my 'arsenal' - along with massage, gluten free, and acupuncture.
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Wow, there was a lot to catch up with today!
Thanks for the support, will let you know how the second opinion works out.
About shingles--someone wrote that if the rash crosses the midline it probably isn't shingles, which is true EXCEPT after chemo or an organ transplant when the rash often crosses the midline. This has led to lots of mis-diagnosis of shingles in post-chemo people or even during chemo.
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Darlam, as I'm sure you know, HER2 is a very aggressive cancer. To me, that would be all the more reason to hit it with everything you can. You are right, all the decisions are tough ones. The emotional part is the hardest, I think.
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HI Darlam,
Sorry that you had to join us here, but I hope that the rest of your chemo goes well. I honestly think that you should put off making a decision on AI therapy until you are done with chemo and have given your body and mind a rest. Then, you can see how you feel.
For me, I only did TCX4, but I still had neuropathy, anemia and was totally wiped out at the end of it. It took me a while to get my equilibrium back. Then I was ready to continue to fight the battle.
Check on the Her2 positve thread here for a better take on your question too. I am sure there are folks there who have the same diagosis as yourself and have thought about the benefits/downsides of AIs. Good luck!!!
Hi to all of you! I am moving along well. Sunflower, I can't believe that you are 4.5 years in - congrats. You too Mcgaffey. Go girls go! You motivate me to keep going on my bad days. Best to all, Beau
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JO: I see you say that Effexor can interact with Armidex? Is that any kind of AI? I am going to start Lupron shots and then go on an AI, in the meantime I have been given Effexor to help me sleep. Now Im a bit worried to take it when I start the AI.. Why would the doctors prescribe it then? This is a great thread, thank you for all the information!!!
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JO: I see you say that Effexor can interact with Armidex? Is that any kind of AI? I am going to start Lupron shots and then go on an AI, in the meantime I have been given Effexor to help me sleep. Now Im a bit worried to take it when I start the AI.. Why would the doctors prescribe it then? This is a great thread, thank you for all the information!!!
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darlam: I am also a health care provider, young, and had similar advantages to adjuvant treatment as you. I had a low oncotype score and at first thought "great! I don't need chemo!" But when I crunched the numbers, I realized of *course* I need to give myself those extra percentage points. I figured I'm relatively young, employed, have health insurance, a stable life and good support, and if cancer were to recur in 10 years it would likely be in bones, heart, or organs and stage IV and who knows what situation I would be in then? Better to do all I can now to prevent that from happening. My same thinking carried on to the hormonal treatments.
I was on tamoxifen for a year+ and recently switched, as I'm now completely post-menopausal (a 3-month turnaround). Thus far I've had almost no SEs whereas with tamoxifen I had everything possible either short-term or long-term. Switching has been a blessing. If SEs become debilitating, I'll evaluate the short term vs. long term benefits at that time.
As with all things, the possible SEs are just that: a menu of possible SEs which you might or might not get, in varying degrees. Everyone responds differently. You have time to think about your decision, but don't sell yourself short. At minimum, give it your best shot. Think positive. If you have unbearable SEs, address your treatment at that time. But don't make decisions based in the fear of what may -- or may not -- be your reaction. You deserve at least that!
I am also a Penguin Cold Caps user, btw.
Cheers,
Susan
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I posted this question on the "I say yes" thread but thought I'd put it here also.
Have any of you found that the pain gets worse with time? Mine was bad at the start, then leveled off and sort of dropped a bit, now it's cranking back up (about 18 months after I first started). It's driving me crazy. I work out almost daily, eat well, try to sleep well, and I've tried every NSAID known to man. I've also tried chondroitin whatever-it-is but they make me nauseous. The only thing that works is hydrocodone, but I hesitate to increase the amount I'm already taking.
I am gradually decreasing my Celexa intake from 60mg to 20mg. Could that be the culprit?
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scoot
have you had your vitamin D level checked lately? I'm at 4.5 years, and YES, there definitely have been ups & downs - it's taken a slew of things combined to keep me feeling good:
My I Will Not Go Without List: starts with all the supplements, massive amounts of Vitamin D (& still only at 35, which has me beginning to wonder if parathyroid has gone wonky) ACUPUNCTURE, and Massage, GLUTEN FREE, NO SUGAR, very little dairy.
ACUPUNCTURE is the key for me -I stopped for a few months, my knees started to CREAK, I got cranky ( so what else is new?) & I go once a month now. Can walk up & down stairs without straightlegging it (too much) - general "complaint" if I had one, is an overall feeling of not being as strong as I used to be, no matter how much exercise, free weights, yoga, walking....sometimes I call it weakness. Don't have the endurance I had, ok, yes I'm 5 years older then when diagnosed (almost 67) but really think this feeling is more than plain ole age related.....
I use Agave in my green tea, used to use honey, but my blood glucose went wonky too. FInd this is SUCH a balancing act. Thankful beyond words that all feels to be in balance now, but it's definitely an ongoing activity.
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Regarding the stiffness and joint pain (especially hands and hips for me). A friend gave me some of her Sam-e tablets to try. She has different medical issues (not a BC patient, not tinkering with her hormones), but she has degenerative arthritis and she claims that the Sam-e has made a world of difference for her. I will, of course, run it by my MO before trying. Just wondering if anyone here can comment. Thanks!
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Hey sunny sunny Sunflowers -
My vitamin D is in the high normal range and I take 50,000 IUs of vit D/week. Acupuncture I can't afford regularly, but I'm thinking of going on a once/monthly course of massages. I can't afford more than that.
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mpeached: Just wanted to add; I had the parathyroidectomy also, but do need a blood test to check the calcium levels every six months. So far so good, since 2004.
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scoot - most of the acupunturists I know have a "sliding scale" - also, participate in many of the local Bartering, Time Dollare kind of networks.... hope you can find a way to wangle a few treatments to see if it helps..
Also the local Cancer Connection here, non profit working to support all cancer survivors, patients, etc. has a massage therapist who works for them on a very reduced fee scale, so the center can offer FREEEEEEE Massage to their clients...
I think the 50,000ius are D2 - seem to remember a discussion somewhere/somehow about it not possibly being as effective as large doses of D3? Somebody must know this - it's all vague to me...
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When my D turned out to be an 8 I was prescribed 50,000 IU once a week for 6 (I think) weeks. Now I take 5000 IU a day. My current D is 38 after more than a year of treatment. I think my initial score of 8 was very low. I live in the Pacific Northwest were the sun is most often a surprise.
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tinat - I've been taking Sam-E for over a year, because it helps with my depression. I can't say it's done anything for my joints, but if your dr. okays it still might be worth a try!
Purrs,
Jenn
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Just weighing in on the ER/PR HER2 positive and use of AI's. When I received my first pathology report I was relieved to be told that I was ER/PR positive and HER2 negative. radiation, AI's for a few years and then boom, done. Then, on the advice of my MO who was concerned about my numbers we proceeded with the Oncotype testing which came back with a score of 41. Oh, and I wasn't HER2 neg, I was HER2 positive. In a single moment I faced 6 months of chemo and a year of Herceptin. I had a terrible time with Taxol. It started the minute it hit my veins and my lips went numb. By the 7th week I could hardly walk. The AI's haven't been much better. Joints are killing me and I now have significant carpal tunnel in both wrists. I'm over 2 years into the little pill and I'm going to stick with it until the end. Why? Because with God's help I intend to have no regrets 10 years or even 20 years from now that I have done EVERYTHING possible to never face cancer again.
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Hi everyone,
What are Sam-e tablets? I'm new to Arimidex and have had some stiffness (lower back, shoulder) which might be due to my very physical activities but might be due to my recent switch of meds.
Thanks,
Susan
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Hey nancyb - get yourself some good quality wrist splints immediately - there has been a lot of inout here on that - they saved me from having to have surgery and work the first night you wear them. after some time, you may find youu no longer need them as that se goes away - that;s happened for several of us here.
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Yes, nancyb, as flanelette has said, please try wrist splints. I use one on my right wrist when I go to bed every night & after the first night, I was shocked, it was much better in the morning. (I haven't felt the need to use it during the day yet.) I couldn't believe it, but was so glad I tried it on the advice of flannelette. Don't get anything from Wal-Mart, go to a good Pharmacy & try them on. Be sure to get ones with adjustable velcro flaps that you can adjust to be firm but not too tight. I was going to see about getting a prescription from my MO, but I really like the one I got from Walgreens, so will stick with that for the time being.
It really does help. I think I have avoided surgery, which I so did not want to have to do.
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Hi Susan - SAM-e is a supplement used to treat depression, osteoarthritis, and some liver problems. Here's a link:
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