For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Simplicity: That is exactly right. My SEs became so severe that I couldn't carry out my normal activities or enjoy anything, and in fact needed help. It took months to feel better after quitting the Arimidex, and I hoped the exemestane would be okay. But it wasn't. And onc agreed with me that forgoing the anti-hormonals was a reasonable decision, given that the "absolute benefit" of any of the drugs would be very small in the case of my "index" cancer. (For example, she said it would cut my recurrence risk from 5 percent to 3 percent.) But these drugs can also help us avoid a second primary, etc. Maybe after I am feeling better again and have done for months, I could try Tamoxifen. I'm not ruling it out.
My husband and I agree that, if the cancer comes back, we will do our best NOT to feel it was our fault or that we hadn't tried. Part of me is petrified not to take the drugs, but another part knows that I can't possibly live every day feeling as bad as I was. I was going to say, "What a terrible choice to have to make," but it really isn't a meaningful choice for me.
It's hard to believe that oncologists aren't more aware of the SEs. Maybe they're afraid that, with full disclosure to patients, a lot of women wouldn't even start on them? But of course many would, the fear of BC being what it is for so many of us.
The nut of it for me is that the SEs aren't inconvenient or annoying....they can be life changing and even debilitating for some patients. I envy those who have few or mild SEs and wish I could join their ranks. Maybe someday?
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I too, am concerned that the MO doesn't test my hormone levels. I got the "We just don't do that" answer. My neighbor in a NP for a Women's Health Office. She agrees that they should be testing for hormone levels or we don't even know what we are doing. I might go in and have her test my levels. Her office does hormone replacement therapies, so they always test levels before treating.
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Girl53 and others. Hang in there. It seems it took me about 3 weeks for the weepy feeling, anxiety, shakiness, and brain fog to lift. I feel like I am beginning to find my old self. No drugs I just feel a whole lot better. Working on my eating habits again. I am beginning to get back on track. I have a lot of messes at work to clean up and I am getting things back under control. One thing I find interesting is clothes that I could not stand to wear while on Anastrozole are fun to wear again. I was thinking about throwing out all my clothes and getting new stuff. I feel like me thinking just got so screwed up while in the brain fog.
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Girl53, your post is what made me realize. I am 2 weeks off tomorrow and I had immediate changes. Course, I have started seeing a therapist too through work EAP program. That helps.
I start my exemestane this weekend. Hoping the SE's stay away because it really does affect daily life. *sigh*
I am glad to read some have found blockers that they do okay with.
It is a tough decision...what to do.
Hope all have a great day and fell well
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Brutersmom: Yay for you!! So glad you are feeling better. Interesting you should mention clothes...Since BC dx, I had lost all interest in what I wore. Hope it will come back after some more healing. Have a great day. I am going to get there eventually! Big hugs to you.
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Thanks Girl53. I am sure it will get better for you. You are taking the right steps. I hope that things turn around soon. I made the decision I was going to move on and live my life no matter what happend. This was a bump in the road. I am not sure what I will do but for now I am going to enjoy the nice weather. Do what I need to do at home and work. I don't see any Dr's until mid June. I attended a board meeting today. I actually found I cared about what people were talking about. I was thinking last month about resigning because I felt like my mind was useless. I believe you will get there.
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I've just completed 5 years of Anastrozole. Going to start Tamoxifen now. Anyone else doing the same?
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MSBelle, way to go! Sorry I can't contribute more on your question.
HUGS!
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Ive been on anastrozole for a year 2 months now , for the first couple of months no SE but later on joints pains which was alleviated by moving around,mild hot flashes and now the newest is terrible hair shedding . Has anyone else experienced thinning shedding hair and if so what have you been doing to stop the shedding? What should one look for if there was a reoccurrence in the chest wall, liver or brain? since i had a mastectomy with reconstruction.
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Shorty123,
I hope this helps with your hair question.
There is a community at BC.org called Hair Hair Hair. You can find a lot of information about what people use in this forum.
I have been using a mixture of:
1 cup coconut oil
1 cup jojoba oil
1/2 cup castor oil.
I apply this all over my head and thru my hair at night. I also use it at the crown on my husband's head where there has been no hair and I can see new growth on him!
This is the oil I got from Amazon: Jojoba Oil Golden Organic 100% Pure 16 Oz by Dr Adorable
For shampoo, I use:
Redken Cerafill Retaliate Shampoo For Advanced Thinning Hair 33.8 oz.
I hope this helps you. If the links paste large, my apologies.
Coach Vicky
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I just wanted to update from my previous posts:
I've been doing my best to be extra healthy since my diagnosis. Lots of exercise and good-for-you foods. Despite all efforts, I had a huuuge wave of SEs from the anastrozole at the 2 month mark that lasted a month or so. It seems to have passed, for the moment, and I am feeling much better.
I still have pretty constant hot flashes that interrupt my sleep but the muscle and joint aches have gotten much better. The depression and anxiety are still there but they're not a tsunami anymore. I'm also experiencing some brain fog, but it hasn't become unbearable at this point.
I talked to my MO about turmeric for aches and claritin for mood issues. She said turmeric is fine and she knows some women who swear by it. She had never heard of claritin being used for depression but there's no reason I shouldn't try.
I just wanted to share an upside after some initially awful SEs with anyone who is reading this thread and trying to decide whether AIs are right for them. This is not to invalidate anyone who is experiencing unrelenting SEs, just an anecdote that (for some) they can get better in a reasonable time frame.
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glowgene - how much turmeric do you take? What form? Where do you get it?
Do you take Claritin once a day and if so what dose?
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Butterfly1234: I haven't started taking either yet! I wanted to talk with my MO first, just to make sure nothing else I was taking would interact in an unexpected way.
I'm planning on adding both once a day, though. While I'm enjoying the current decrease in SEs, I still want to take steps to prevent them from coming back. I'll let you know if I find a good source for turmeric.
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glowgene - thanks for your reply. I'm very interested in what you find out. I'm planning to start name brand Arimidex around May 9. Keeping my fingers crossed I can manage potential SEs
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I have not heard of taking Claritin for depression, but it does help many of us with joint/foot pain. Be sure and get the kind that does NOT have a D on it (you don't want the decongestant component).
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Many women find claritan helpfull for the achiness. Didn't work for my feeling of deperssion or lack of sleep. And Janett2104 is correct you do not want D.
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help! I have been on Arimidex for 5 months. Is Satan on the patent? I realize for my Cancer, this is the best course. (Hr+,Pr+, Her2+). But not sure where to go from here. I can deal with the hot flashes, no problem. Thumb and wrist problems, that's why we have Immobilizers. But in the last three weeks I have had every SE thrown at me there is. The biggest concern is stress and anxiety. I have a very stressful job. It used to be the more stressful, the more I liked it! Now, I am the B____h from hell! I have a very young, wonderful group of young ladies who work under me. I want to be a source of inspiration and a good role model. Can't deal. Besides an elevated stress level, I now have bad joint aches, horrendous muscle aches, and just today you can add "trigger finger" to the mix. Arimidex is worse than the weekly Taxoll! My questions is this. Do things even out? Does this become easier as time goes on, will there be a balance? Or do I scrape it all and take my chances?
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Shorty123, I had a big hair shed after being in Letrozole for about a year. It was bizarre. After talking to MO, I went off med for 2 weeks (shed slowed/stopped) then started on Aromasin. I am also taking 2 Biotin pills each day, 10 drops of Jerrosil (per dermatologist), and added a vitamin C pill to my regime. It's been about 7 weeks and I am happy to say I am getting considerable regrowth!! Hooray!!!!!
I'm wondering if going forward I will need to rotate the AI drugs every 10 months or so. I plan to talk about it with my doc at my June appt. Wondering if there arent some accumulated side effects that could be avoided. So far I am finding the aromasin to be relatively easy. Some stiffness and aches but fewer flashes and much better sleep. I feel like I sleep more deeply and my hubby says I snore now. 😉
Wishing the best to all who are struggling with SE. I think I finally have my supplements working for me. I suggest you keep trying until you find what works.
PS-- I also take 3000 Vit D, Calcium chew, and Glucosamine Condroitan.
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Glowgene
So happy that you are doing better. Gives everyone hope, I believe!
Coach Vicky
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Dioptics. So difficult to all have to live with these SEs! We are thinking of you ALL. 0 -
Dioptics
I hope your oncologist can help you. Demand answers so you have a better quality of life.
Best wishes.
Coach Vicky
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Dioptics, My stress and anxiety only got worse. I did not have the aches and pains. Mine was brain fog. I didn't care about anything. Even hated my devoted dogs. Couldn't stand to be touch. I too work full time. I stuck it out for 13 months until the anxiety attacks hit, I would feel like my insides were shaking, and I didn't want to live anymore if this is what my next 4 years were gone to be like. I was not successful on a different Als. That only added back pain to the mix. I have stopped for now. I see the surgeon in June and my Family doc. I will decide what to do then. Right now I feel great and feel like I have a life again.
Talk to your MO. See if you MO can offer some alternatives.
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I've been on Tamoxifen for 6 years now and my oncologist wants to switch me over to Arimidex as I've been on Lupron shots now for the past couple of years. I've tolerated Tamoxifen fairly well and frankly I'm terrified of switching especially after reading all these side effects (haven't yet read the whole thread). Also, I was still off work when I started Tamoxifen, so I had down time to make my way through early side effects etc.
Hot flashes I can handle, and I'm already pretty achy. The thought of MORE anxiety or depression scares me, as I've found since Lupron in particular, my anxiety levels have increased. Nausea and vomiting as a side effect also scare me, how do I do my job with all that?
Oncologist told me btw, that this change of drug would reduce my chance of recurrence from a possible 10% to 7%.
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Just when I thought things were looking up - started Anastrozole on Monday and am already experiencing the joint and leg pain. Have some arthritis already and my knees are really screaming! Will stop at the pharmacy for Claritin this afternoon. I'm already taking G&C, and vitamin D as well as extra strength tylenol for the arthritis pain. Thanks for the suggestions in previous posts. I have been able to find threads on this site as I need them. Thank goodness! What a support this site has become. My MO warned me about the hot flashes but not many other SE. Will be alert of anxiety and depression.
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ChemicalWorld, I understand your fear of taking Anastrazole. I was scared to death after reading all of the side effects and more or less was promised by my MO that I would have many of them. I took the first one at dinner time one evening . I lay awake most of the night waiting for the side effects to start. Nothing. In the morning I stretched my arms and legs because I knew something was going to hurt. Nothing.That's been 7 weeks ago and I still have not had any side effects. Not everyone has terrible side effects from it and everyone reacts differently. I also have 2 other friends who started taking it about the same time as me. One has had a few hot flashes, the other one nothing. Good luck to you.
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seg24 - Oh this so encouraging! I'm starting on Tuesday and you've given me hope! You've been through a lot so I am so happy you're not experiencing SEs. Gentle hugs.
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Thank you seq24 !
Whenever I can muster up the courage to give up the Tamoxifen and actually start this, I will be sure to check in.
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Chemical and Butterfly, I've been on Arimidex for over 2-1/2 years. I'm 71. I've had no problems with it. My hair is thinning but it was before Arimidex. I was creaky in the morning before Arimidex and I still am. Yes, Claritin (regular, not D) definitely helps that but since it doesn't work on my allergies, I don't take it. Not everyone has problems with AIs. Hopefully neither of you will either.
HUGS!
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ChemicalWorld--you're very welcome! Another thing to keep in mind too is that if the Anastrazole doesn't work out there are lots of other AI's that can be prescribed. My MO told me that Anastrazole in her opinion has the fewest side effects. I actually just read somewhere that Tamoxifen has more than Anastrazole. So if you are tolerating it well then hopefully the Anastrazole will be the same My MO told me that taking the hormone blocker is the most important part of our treatment and if one AI doesn't work she would find one that did. Good luck and please let me know how you're doing.
Butterfly1234--Good luck as you start taking Anastrazole. I hope you are pleasantly surprised as I was. Next week will mark 10 months since my diagnosis. I've had surgery, chemo, radiation and now hormone blocker. It's been a very long ordeal!! I still get tired easily but I'm glad to feel mostly like myself and be back into my normal routine for the most part. Now if my hair would just hurry up and grow faster. Take care and let me know how you're doing.
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PPeggy - thank you as well! I'm creaky every morning too without Arimidex. I think it's part of the aging process though I am not minimizing the possible SEs. I know they are very real for so many. I can only start and see what happens.
Seq24 - thank you as well for the encouragement. I know how important these AIs are. Onward and forward,
I've read a lot on this thread about Claritin helping with aches and pains from Arimidex. Does anyone know why it helps? I'm wondering if I can take it with hypertension. Will have to check with MO.
Chemworld - let us know when you make the switch.
Have a peaceful Sunday evening all. Will let you know how I'm doing. Hugs all
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