Life on aromasin
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Tim stop it I just told u not to think I'm anyone special--u'd do the same thing anyone would--I'm no hero believe me.
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OK I haven't slept yet--I'm blaming the aromasin and my stupidity. OK here's what happened it was 12, 1am and I heard a door open--my bedroom is on the other side of the house and off the laundry room, And my cat's ears went up so I thought OK I've got to save my family. Yea right--so I grabbed a lighter and like all scary movies we see did what we always say is that stupid and walk out in the laundry room and see a figure near one of the doors and thought I should sscream to wake everybody up, but again stupidly I figured I'll burn him and he'll leave--what world do I live in and watch to many scary movies. So he turned and it was my SIL letting the dog out--he never goes out at that time ever. My SIL said how sorry he was then he saw the lighter and started laughing, I don't know why---the way it woke me I couldn't fall back to sleep so the bitch is back for now (me). Oh and I'm out of xanax hahaha I'll get it today. I'm still blaming the aromasin--so another night of life on aromasin---We should actually do the study for it and the researcher should read what we go thru LOL
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You are all brave and beautiful ladies whether you want to be or not. I think that alcohol and drug abuse are important issues and ones that touch so many lifes (and from there I have my own personal thoughts having worked with these and so often the same people over and over again on the tax payer's dime)
The real issue I want to get to is that schizophrenia can be devastating disease and is not a disease of choice. While our government is wasting money on silly nonproductive research which is so stupid that they keep packaged in bills of greater significance in order to get them through, they could be spending that money on research of greater significance.
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Cami I just saw your post and I don't know whether to laugh or cry! I think we all have scrambled eggs for brains at this point due to the stress, tx and don't forget the estrogen sucking mini pill. No wonder so few people take us serious which is both frustrating and sometimes a good thing.
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I am starting month 3 of Aromasin, I had hip pain lamost immediately, then got better after a cuple weeks, lots of night sweats, i was taking it with dinner but was waking up at 1-230 am with flashes and pain, moved it to take just before i fall asleep, the last few days have been almost unbearable joint paint wise but I am a couple months in and expected it, ibuprofen doesnt touch it, neither does Aleve, Im told it will get better, no bowel issues. I am also on Herceptin q3weeks, I just ache...constantly.
Having what I hope is my final plastic surgery next Friday....had to have expanders removed I was reacting badly to them, this surgery will just flatten me...hopefully
carry on soldiers
Peace!
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Unofficial verdict from bone scan. I have arthritis! Horray!
Someone on here said I "knew" the pain was from the aromasin and I did kind of know but every now and then the pain would get so strong and I'd doubt. What a relief!!!
BTW, eternal thanks to all of you for listening and caring and sharing. I don't know what I would have done without you. Good health to all of you!!!
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Tim it's kid of funny when they find other things than cancer we're so happy and yet in pain, LOL
Willy talk to u'r Dr. if it's too bad They might change to another one or give u some meds for help--don't just go thru it without saying something.
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CAMI, no one understands but us.
I emailed a friend to tell her the good news. She said "wonderful! now you can get new knees and stop thinking about cancer." I told her I had to go back on meds though. She said "STOP TH EMEDS! I FEEL VERY STRONGLY ABOUT THIS!" She went on and on about how it made no sense to take them. I asked how many books she'd read about it because I'd read a lot and while I dearly would LOVE to ditch the pills I think my dr and i should try to work something out! I absolutlely cannot understand her! And the worst part is I really don't want to take the pills. I told her that 95% of the problem was worry over if it was just the pills and now that I know what they can do I won't be as scared.
But she knows nothing about anything and yet she's telling me what to do and telling me to increase my chance of recurrence!
I always say that no two drs have agreed on anythng with with me but that's not true. The one thing they have all agreed on is that i should take this damn pills. I may not be able to in the end and I definitely will take pain killers, etc. My onco said i will probably have to keep taking vacations from them and switching them around. But to just tell someone, having no experience or knowledge, to defy dr orders is a bit much.
she also told me very proudly that she has a friend who had both breasts removed and no chemo and no meds "and I thought that was very smart!" Ugh. I told her she didn't know the details ofher case and everyone is different. Did she have it in her node? I did. Did she have it in her lymph? I did. I'm really annoyed at her. What if i listened?
How do people do this???And i don't mean people like us, who have been reading and struggling with the facts, all of them. This was pure arrogance.
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Oh Tim...what a shame your friend is like that. She doesn't realize that those like me who had BMX and only needed hormone therapy aren't the norm. Shocking how people think of things.
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She would tell you to stop taking the pills. She "feels strongly" about that. She was a second grade teacher, not a dr!
well, I've calmed down a bit. I guess i was so thrilled that the bone scan was ok, and so grateful that perhaps the pills are effective after all, that to be told i was just making myself miserable for nothing blew my stack! thanks for understanding, so many don't!
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Some people just have to give you their opinion on everything. I guess it is so arrogant and very annoying. If you don't ask for an opinion nobody should give you one. I will sometimes say "Well, it is none of my business, but---etc etc. But most of the time I don't give an opinion.
I have two friends that are very opionated and I am thinking of avoiding them as much as possible. They love to "bait" me and I always fall for it and we get into a big argument. Life is too short for this kind of nonsense.
There! I just gave MY opinion, unasked LOL
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I agree dogs. But my friend just sent me an apology. She meant well but she realizes how wrong she was.
What more can you ask?
When i was making the decisions about treatments, chemo, which and where, etc? I kept my distance from people. I am easily influenced and i knew that this was one decision that was too important to involve others. Just my husband, the drs and me. When I decided to do what I decided to do one friend said "you always go for overkill". It threw me for a loop and I didnt talk to her until i was done doing what i had to do. People are just so stupid sometimes. If you're talking about whether or not to get a manicure, talk all you want. But when your life is on the line, shut up. Especially if you don't know anything. that's the truly amazing thing. It comes from total ignorance!
BTW, my son, the dr. told me to go for second rate care. I guess it would have been more convenient for him. He said "a monkey can do a mastectomy, it's a snap." Well he was wrong. They missed the cancer in the node.
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Hahahaha Dogs--u'r opinion s=is valuble here so go for it.
I rarely give opinions about any of this cuz I don't know much and everyone knows that's how I want it. But all of u that do research and find out dacts I give u so much credit--I just kind of follow--I'm the sheep.
Time I don't blame u, unless someone really understand this and it can only be going thru it can u have an opinion (I think) and even then we don't all agree but we usually are open to whatever is best. The old walk in my shoes one is really true here, for a while I was taking Aromasin every other day (my own thoughts) and when I told my Dr. she said it's u'r decision, but I wouldn't do that--so I did go back to every day. And I still say Alot of us have had 10 yrs added to our body age cuz of so much chemo etc. so agin people don't understand that. (IMO)
Of course anything I say is my theory not Dr. recommended LOL And even my sister who has told me walk, walk u need to do that, but it was hurting so much when I did do it, then I find out don't walk my discs and vertabrae are like crumbling so again it's a different story for everyone of us. We can only do what our bodies let us do and what we think is right for us. No one want to take all these meds a day but so many things are going on as a result from all of this (for some) that it's a choice but one u fear if u choose not to. Well I do.
Now when I get ogether with my family we have political talks and then my opinions fly and religion again I go into it. 2 Things that they say don't discuss I enjoy so I go at it. But medical --NO--I just think mentally and physically we are all so different we just try to play the cards given and try to play well. So Tim we all get it but others don't Those are the people I always say I'm fine to cuz they'll give me a mayonaaise mixture that will cure anything. LOL
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Fantastic Cami! You are so humble but so wise! And funny!
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Tim u make me laugh all the time, I'm lucky when I can put two sentences together and u'r always cheering me on. U'r so cute I want to pinch u'r cheeks (that an old Italian thing) on u'r face BTW
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LOL! Too much! I really needed some laughs! Don't we all????
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In my youth and ignorance I was certain how I would act, react and handle certain situations but through living I found out I didn't know and my opinion really sucked. One of those situations was handling life after my first husband was killed in an auto accident and the other was when I was dx with cancer. Now there is only one thing I'm certain about and that is the uncertainy of life and the whole situation. That can really mess with the "Well, I would . . . ?" You are right you have to walk in these shoes.
No we don't all agree and one tx does not fit all, but because we've all had to walk in these shoes we know better then anyone where the pinches and blisters are resulting in a desire (need) to know how others survive and an acceptance of each others choices. How could you possibly expect any of us to agree with everything since you can hardly find 2 doctors who agree on anything.
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Seabeal u are so right about the Dr.s LOL
But I am so sorry for u'r circumstances with u'r DH--that is such a shock to have happen and there can't be any one way to react. (((HUGS)))
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Tim u stopped aromasin right? Did u slowly stop or just stop. I'm considering it cuz my back bone are getting destroyed and I think this has something to do with it---Just my thoughts. In 3 months I went drom moderate ack stuff to seere--3 months. that seems all so fast and I hate the way this makes me feel--I don't got to the dr. til July I think but if it is my decision I want to know if that how u did it. I don't want withdrawals, hahaha
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It took about 3 months for me to get to severe pain. I stopped cold turkey due to heart palpitations. Then the next week or two it all the SEs got worse - then tapered off. So not sure if that was withdrawals or not, just my experience.
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It took me 3 months to get to severe pain too. I just stopped cold turkey on March 23. I had to be able to walk!
It got better immediately. When I went to the onco about 2 weeks ago was it? I told him it was 70% better. That was within about a month or so. Now, about six weeks down the line I'm about 90-95% better. I can snap my fingers again, walk for short periods without pain, etc. I don't know if it was effecting me mentally but I feel more clear headed and optimistic, maybe becasue the pain is almost gone,
I plan to go back on arrimidex May 15. I am relishing every day I am off the stuff. But reason must rule and I'm afraid not to be on something. I've kind of resigned myself to being on and off the drugs for the next 4 years, God willing. BTW i lost 17 pounds with zero effort. There's the rub. Less weight and more excercize are also good for preventing recurrence but on the pills i can't excercize or control my weight. Well, as you say, it's up to us in the end, I hope you do the best for yourself, whatever that may be. Hard, hard decisions!
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Thanks Sayne and Tim--my back has so much damage that won't clear up but maybe the rest will help==I realize the consequences but it's dragimg me to much. I might start another in a while but for now I think i'm going to take a rest. And I know this is my decision but just wanted to know if there are withdrawals? So it could be, but maybe not. LOL
Thanks alot of sharing with me.
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I stopped gradually. First I tried a pill every other day for a while. Made no difference; still had the bad SES. Then every third day ( I had read somewhere that it stays in your system that long; not sure if that is true though.) but the SEs were still bad. So after a while I cut it out entirely. Bear in mind, this was my decision only. My onc was not happy and neither was my internist. The cardiologist was more understanding - and so was my family.
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I got switched over from Arimidex to Aromasin about 3 months ago due to my complaints in the "Mojo" area...Aromasin has helped that immensely! Not dry as the desert any more so a LOT less painful to have relations with my husband. I look forward to it now and more often too...
I learned from a posting on this forum that another member that was on Arimidex that she had gone gluten free to help with the joint pain. So, I figured, what have I got to lose? My pain level was pretty bad, extremely sore knees, hips, hands and feet...It took awhile for all the pain to go away - about 3 months, especially my hands...Even now, if I eat something with gluten sure enough, my hands will hurt for the next two days...I recommend gluten free to anyone suffering from joint pain - there are so many other choices out there and yes, there is a learning curve but to be able to walk and exercise without pain that none of the pain relievers even touched, it gave me my life back.
My only complaint now is that the Aromasin has made me gain about a pound a month and I'm trying like heck to stop that!0 -
Hi, Everyone!! I have not been here for awhile, Sorry!!! I have been on Aromasin for almost 8 years, went off of it for about 10 months, but went back on since I moved to CA. Just wondering if anyone knows if Aromasin compromises your immune system. My onc doesn't really give me a difinitive answer. Since being back on it, I have had cellutlitis and shingles. Yikes. I would so appreciate any info you have. I come here for the best info. Hope you are all doing well!!! Thank you and Blessings, Kathy
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Ritaz - I am on Arimidex and my joint pain was horrific. I could barely walk some days. Apple Cider Vinegar helped a lot, but I finally decided to go gluten free. WITHIN ONE WEEK, my pain has subsided about 80% or more. Not sure why, but it does work at least for me!
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I'm going to have to try gluten free too. I asked my onco about it and he said no, it doesn't work but I believe you guys more.
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See everyone has a story and I don't think the Drs. know some of these, I think they go by reg studies and if no one made a study of it then they can't say yes or no it, like nothing.
I don't know if Aromasin ruined by back but I do knoe in 3 months time i went fro moderate lower discs and ower vertabrae deteriation (sp) to severe WTH 3 months plus every joint hurst and my one shoulder can barey pick up my arm, of course that's my LE arm. But I'm more concerned with my walking which I can't do much of anymore--that's why I want to see if it helps not that it will be better, just not get worse. Just confusing. To many things and u don't know if it's SE's or just happening.
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Cami, I thought I'd never be able to walk normally again. Now I'm walking in the forest everyday, pain free! It's the pills. I will start on Arrimidex (again) in a week or so and hope it's better than the aromasin. When I first took it my hands became like claws and I coiuldnt stop crying. I prefer that to not being able to walk!
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So the damage wasn't permanent then Tim, I don't get all this. Mydamage is all permanent I should have sropped a while ago, but I didn't so maybe I can at least get some relief with other areas that might hep--I will go on another one, but for now I feel like I need a rest. U know I really don't know what 'm doing but I have to find some relief somewhere.
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