Arimidex - Coping with the SE's
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Hi RuthBu,
Not sure what white raisens are? Are they normally available at a Whole Foods or the like? I have a bulk nuts, etc. store nearby, so will also check there.
Or as you say, skip the raisens and go the gin. I do like Sapphire and tonic.
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I suspect they mean Golden Raisins?
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gingerbrew - I am SO sad about what's happening to Cotton t shirts, just for an example. used to adore all the LLBean ones - now they're coated with "stain proof" which is fine, but they don't absorb perspiration! How can you wear a t shirt in the summer & not sweat? Just makes me want to cry. Also notice they ( well, LLBean) are long, narrow, slinky ( slingy) - I'd look like a sausage in a casing if I wore one ;(((( Everything on their website says "imported" - NOTHING to wear Made in USA.
Sorry for ranting - but it really is so, so sad....and such poor construction, glad I've saved my old ones.
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Maybe we need to start a thread for this topic. I don't know how, but I think it could be interesting. I would find it very useful if anyone knows of US sources for high quality fabrics and ready to wear sources.
Anyone?
Ginger.
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Thoughts on whether it's okay to switch to generic Arimidex from the AZ brand? My BS gave me 6 weeks of samples (3 bottles) of the brand version, which I am tolerating so far as I start my 4th week. My local CVS has the brand for $50 and the generic for $15, according to my BC/BS insurance. I know I can find the brand cheaper elsewhere, but doubt it would go as low as the generic.
I would want a UK/Ireland/Isreal version of either, but supposedly the generic/brand versions are biosimilar, with additives being the difference.
Would it be a bad idea to switch? More likely to have SEs?
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Chris - RARELY is someone effected by the inatice ingredients/fillers. I use TEVA (Israel/USA) and am fine with it.
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Gingerbrew - I don't know about starting a thread, if anyplace I guess it would be in Alternative Forum, BUT, REMEMBER, many users of BCO do not live in the USA ;-))))
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Oh yes. One last off topic post. I buy Coldwater Creek shirts and they are getting thinner and thinner. Now I am looking for another supplier of plus size cotton blouses that are made of quality material. I used to love Land's End tee shirts, they were nice enough to wear to work. Tailored in good quality cotton that never faded or pulled out of shape. Sears bought them, need I say more.
Back to our regular scheduled program.
Ginger
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I have noticed the quality of clothes is awful..even in kids. I ended up buying my child's clothes from Target because they hold up just as well as Kohls if not better. Thankfully this year I get a break...she lost some weight and can still wear last years stuff! yay me.
Now as far as plus size clothing...why do they think we need a neck hold bigger than our shoulders. There may have been a day when I liked to show a little shoulder but not now. LOL Especially when I have a foob that want to rise up and out of the shirt.
My hand surgery is March 29. I had my follow up chest scan today...now the wait begins...Results Thursday.
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Greetings Usha,
So glad that you are now 2 years out from chemo! You and I are on a similar time path, although I am a few months behind you. You and I struggled to get through the first months on th AI team together. I second your round of thanks to the folks who frequent this thread with such positive and helpful advice and support ( yeah , Sunflower, Ruth and many others who have inspired me to keep going! )
Some days, I hit the wall and think that I will switch to another AI so I am glad to hear that Aromasin has helped in some areas. Hopefully, some of the new side effects will lessen with time. Keep me posted.
For now, I am hanging on and grateful to be feeling reasonably good.
Sunflower, I will keep in mind what you said about " survival stats" generating angst. I myself am trying to track what is best course of treatment, but in the end, I think it is a conundrum. The science is only advanced to a certain point; we can drive ourselves crazy trying to be so precise when the answers aren't really there. I will focus on Godivas as an end unto itself - much better therapy!
Best, Beau0 -
I guess the lack of response to my inquiry means it never comes back or no one read it. Hopefully it is the latter.
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Fearless - I've gone back several pages and can't find a recent post from you on this thread. Perhaps you should post your inquiry again.
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Beau = yup, Godiva chocolates a much better subject ;-) For a long time, many women who were against taking any kind of "traditional medicine" including chemptherapy, and AI's ( on another thread) were really critical because of the lack of data, and focused on the little then known about "survival rates" and I agree with YOU completely = there just isn't enough data yet. What IS KNOWN, is that the AI's are excellent in preventing a reoccurence of bc. That's what I focus on.
As I said, I would be THRILLED to die of something else, round about age 95 or 100!!!! As compliance is one of the main problems, women stopping the AI's, because of SE's - even tho we KNOW they are effective medications - I prefer to focus on supporting us to do what we can do to make the SE's less - and even if that needs a bit of DeNile, I'm good at that too!!!!!!!
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(Fearless posted something here on the evening of March 18, but deleted it 6 hours ago, right about the time she posted her most recent comment. I didn't see the original post, either.)
otter
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Tina T - Thank you for your kind words.
Faith22 - My last Herceptin my bp was elevated, I am always low, I will have to see when I go again on 4/3 for my LAST Herceptin!
I see a few of you ladies mentioned Effexor, I don't really know anything about it but could you give me info? is it for depression? anxiety? how do you go on, is it through your Onc? primary? or Physcologist? do you have to be monitored regularaly while on it? mentally?
Do you all see your general practicianor and have all the other stuff checked (tryglicerides, bp, ekg etc.)? not sure if I need to do this now? or when?
Besides the sadness and anxiety, I have the nausea, headaches, joint/muscle aches not to mention the brain/memory & spelling (which I was better at) is still not like it was pre-chemo.
Sunflowers - your post about 100th b-day and Godiva made me smile.
Exercise is good, I have ALWAYS exercised regularly, but now, mentally I cannot get myself motivated!
Thanks all for the posts I love being able to see whats going on with everyone and compare feelings.
Ginger M.
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Hi Ginger_Mea
I too had lots of side effects from chemo and also from Arimidex. Can you make a list of all of the issues you have? Just a one word list, we will understand. That might make it easier for us to go through and respond to you.
I share some of the side effects you have and would like to give you a complete response.
I can respond now to your question about Effexor. Effexor is for depression and can be taken with Arimidex, some antidepressants cannot. Your primary doctor, Onc or Psychiatrist can prescribe this medicine.
I had severe side effects from Arimidex. My Oncologist took me off for a break and now I am on Aromasin for about two months. My only side effects to date are a daily headache and some hand pain. I hope this is all I get from this but I won't know for some time yet. It is however, much better than it was on Arimidex. I really want to be able to take this medicine and receive the benefits.
I see you are still having memory and comprehension side effects. I am about a year ahead of you in treatment and mine is just clearing up now. I felt like I would never feel better or be able to think or plan clearly again. I felt like I was not engaged in my life and it was frightening. I feel better now, I feel more alive again. I am not all the way there yet, and maybe I will never be, but this level of coherence is tolerable.
Things I did to improve my thinking. I learned Sudoko, I am not very good at it yet but I can do it. I am playing Words with friends on my Iphone. I used to win regularly at Scrabble and now have only won once. I can play though and that is good. I organized my purse, seriously. My aphasia is greatly improved. I sounded like I had a mild stroke and now I can be understood. My writing is still better than my speaking.
When I say my SE's were serious I am very serious. My neuropathy has not improved so I have to be very careful where I step or turn around. I nearly fell over again the other day because I was standing on one toe with my other foot and didn't know it. I caught myself on furniture. I have done this too many times, splat.
I obviously still have problems organizing my thoughts to communicate well. I hope this helped you even a little bit Ginger_Mea
Hugs Gingerbrew
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Gingerbrew, Have the same SE's as you on the aromasin. Have been on it since January 4th. These Se's seem better then the ones our sisters have posted with arimidex.
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Fearless, try again and we will look for it.
If you aren't on a low dose daily aspirin, you will probably want to consult your doctor about taking one. The news tonight was all about studies showing that taking a daily aspirin is proving to lower the risk of getting various cancers, lowers the chance of it spreading, and lowers the death rate. As it is also good for heart health, it is worth checking out.
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"Things I did to improve my thinking. I learned Sudoko,"
I have started back playing this game too. I have a Nook color and it is a free app. I play all four levels each night before bed. The good thing about it on the nook is it's easy to cheat when you are just stumped!
My neuropathy also has not gotten better. I never thought the balancing problems had to do with my feet...now I will check each time I take a spin or wobble. I have yet fallen close calls but I was getting up and just fell back onto the couch.
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Side effects... hmmmm...
The worst thing I think is this depression/anxiety! and the feeling that I am a different person now, with the cancer word always lingering in the background waiting to strike. I want to move past it but I just can't, and I am thinking it is a mental s.e. from the pill? I did start to see a counselor.
nausea, neuropathy, headache, muscle/joint issues, I too am clumsy haven't fallen but come close, and have to hold on to the handrail doing steps (like an old person) when I use to be able to run up and down stairs, fatigue, not much of an appetite.
Ginger M.
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ginger--the feeling of the cancer word always in the background isn't a SE of arimidex, it's a side effect of being diagnosed with cancer. The thought of a recurrence or met showing up is always there. It does fade as time goes by, but it rears it's ugly head every time I have a twinge, pain, or symptom that I can't immediately identify.
Fatigue is a known SE, but many of us have discovered that a little exercise goes a long way in that regard. Walking is the best, start with just a few minutes and work your way up. Keep taking the stairs at work.
Counseling should be offered and encouraged for every woman diagnosed with bc. I find it very helpful.
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I am SO glad I came across this topic. I finished chemo on 12/22, finished radiation on 3/2 and have been on AZ since late January. I am more depressed now than when I was going through treatment. Could that be a side effect of the AZ? Also, I am losing feeling in my hands more and more, especially at night. I cannot even grab the alarm clock - can't close my hand around it. It feels swollen but isn't. Anyone else experiencing this? I called my onc but the nurse said it is leftover neuropathy from the chemo (ACT). Any thoughts? I'd appreciate any input.
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ginger_mea - you really are describing what many women feel as they go into menopause. AND, we, if we weren't already, were THROWN into it. Remember, in a "natural menopause" most of us still have some estrogen "floating" around from what the adrenal glands produce. On an AI there is NONE, zap, nada, or that's what we hope. NO WONDER WE ARE FEELING different - and with bc "hanging in the background" with a big question mark over it's head -
I HOPE you will consider taking some medication to deal with the depression/anxiety. Honestly, it makes dealing with the physical SE's so much easier. We need ALL our emotional, psychological energy to get on with our lives.I expect you're on Herceptin, or something like that also - just an assault on our sense of well being.
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Thank you all
SunflowersM after reading all of this and all my research I do realize that the AL's are putting me into BIG menopause and causing all of this.(since I already did menopause, not as bad the first time)
I am going to speak to my dr. (Onc.) about it, and considering meds, I am a little afraid. I had taken Zoloft for 6 months (after 9/11) for PTSD, and was monitored by a physicologist (no longer around he took a big job somewhere else). I just don't know who would handle this? what type of dr? Onc.? Primary? or Phys? and what to take? or how it would make me feel? I don't want to make myself feel worse either? its a little scary to me. I don't mean to offend anyone currently on meds. I do get it. A friend told me to take them, take whatever is going to make you feel better.
I guess I just want to be me again! (guess we never really can be after this) This last year I was consumed by cancer, it went from never being around me to being everywhere I turned. My dad (passed stomach cancer) my son-in-law had thyroid had a complete removal, his dad passed from bone, and my diagnosis. So its been a big "C" year and it is very wierd. I know there are so many worse off, I really do and am thankful for a lot. Guess we all just have our own stuff. Sorry for ranting. Ginger M.
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I can't remember who posted the Arimidex Direct email offer of $40 if you ordered direct from the co., but thank you!!!! I had such joint pain on the generic, knees, was feeling 80 yrs. old that my MO wanted me to try the name brand again, I had very few SE's and they did not affect my QOL at all. He wrote a script. for my pharmacy and it was $409! You saved me so much, the Social Worker was not familiar with the offer and I told her bc.org. has all the latest info, so thank you again!! Karen
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Ginger M, You have had such a tough year and now you have to deal with the SE's of arimidex. Please be gentle with yourself. If you want to try meds for depression/anxiety, your PCP is a good place to start. That is where I started and she was very understanding and helpful. Even with celexa, I find myself much more anxious since beginning arimidex. I plan to ask for a med specific to anxiety during my next PCP visit. Our lives have changed so much and so permanently both physically and emotionally in a short time. Thank goodness we can count on each other for support.
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You are most welcome Karen. Glad it helped somebody. Hope you SE improve on the name brand.
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I am a 4 year survivor. Had chemo, radiation, been on Tamoxifen for 4 years then switched to Arimidex. I had Invasive Ductal - er/pr +. It has been one month on Arimidex. I can deal with the joint pain (mostly in my hips and legs), it intensifies the day after I work out but manageable because I work out the next day. (I am trying). What I am starting to have a very hard time with is the hot flashes and the mood swings between sadness (where I can cry any time) to losing my temper. I hate feeling this way.
I gained my weight back as I went into menopause, which so upsets me and now being on weight watchers and always measuring and eating well, working out - the weight won't budge. Sorry I dont' mean to vent. I have tried my best not to let this cancer thing get to me but all I want to do is go sit in a corner and cry.
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Again thank you...
So sorry to kim24, not about being a 4 year survivor though!!! thats great!!!
A great place to vent is here! I completely hear what you are saying about the mood swings I find that the hardest to deal with too. Koodos for you at least you work out, I need to and always did, but for right now can't get myself going its terrible.
Feel better and cry it out if it helps, I feel like thats all I do anymore! Ginger M
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Justina...I've been having the same problem with my hands, especially my right hand and went to see my MO today. She told me that it is a side effect of the Arimidex. I'm also starting to have problems with my ring finger on my left hand wanting to lock up sometimes. OUCH! That too is a side effect. She said that some women can have these problems just going through menopause but adding the AI can make it worse. I'm also more depressed so she is switching me to Femara in the hopes that I will tolerate that easier. She also gave me Effexor to help with the hot flashes and possibly the depression a little, though it's a small dose.
I was just really annoyed because when I asked what my chances of recurrence are without the AI she told me that everybody that stops has the cancer come back. I told her that wasn't possible! Stage 1 does not have 100% recurrence rate. She just always likes to scare me into everything. She said she doesn't have any patients who have stopped and are doing well. I told her she doesn't know because they probably don't come back to see her because they're fine. She said that even if my chance was only 2%, if it came back to me the numbers wouldn't matter. This is true, but I also told her that if the medication gives me a heart attack because my cholesterol goes up and I can't lose weight and I'm stressed out because I feel so lousy, the cancer coming back won't make any difference either. I am becoming very tempted to switch doctors...
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