Life on aromasin
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Yorkie, thanks for being the "cheerleader". You are so right Al do save lifes and are an important part of our tx. I hope that nothing I post enfluences another's tx negatively and I can certainly see how this might affect the newbies. I would rather be a source of information and encouragement then a negative enfluence.
I'm very unhappy with my current MO and have been for a while. In the beginning he was great but when I returned from San Antonio where I choose to have my surgery/reconstruction and radiation he has been distant and I feel has brushed me off during discussions of further tx. This became worse after I went for a 2nd opinion at UNM who only rewrote my 29 page pathology report and was seen once. I'm just not sure where to turn to find another MO as I live in an isolated community with the nearest large cities being Alburquerque and Amarillo but will go where ever I need.
I also think I'm just now starting to deal with ca even though I was dx 2/12. When I was dx I was in several crisis within my family and marriage and was more fixated on those problems. It seems like it was "bam bam, thank you mame" from dx to the day I started aromasin with little time to adjust from one step to another.
Every week I feel better since I stopped aromasin and I've gone from stopping and not caring if I died from this choice to "ok, need to reconsider and go at this a different way". I'm not going to make any major decisions until I'm fully rational because these are the decisions I will either live or die with based on my choices. I feel clearer today then I did last week and look forward to feeling clearer next week. Its time for me to take my life back on my terms.
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(((Seabeal))) You have gone through so much, I hope things get better very soon! Some just can't take the Als or Tamoxifen. I know that and also know depression absolutely kills, same as cancer. You have to take care of yourself in the way that's best for your body, emotions and needs. Don't know about your doctor situation. My MO is about an hour's drive away, but I only see her every 3 months. I did have to change my entire medical team right after diagnosis. The ones in my small town were idiots. So now I drive to an NCI hospital and docs there.
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Yorkie
I'm another cheerleader for Aromasin - you aren't alone lol.
I do know how our sisters feel though, as for me Arimidex was hell. I'm fortunate in that Aromasin's se's aren't as bad as Arimedex's se's. If all I had to choose from was Arimidex, I'd be thinking very carefully about QOL, but with Aromasin I could very easily stay on it for 10 years if I had to.
I do worry about the lack of estrogen in my body though and what that depletion is doing to my bones and heart, will I go off it? No, not until or if I'm forced to. I dread recurrance more.
So I feel for those of you who are suffering so much, but if Aromasin is not good for you - it really is worth trying a different AI - I'm proof that one AI is hell for me and the other very tolerable. I'm lucky that I found the right one on the second try, but I would have tried a third or fourth if I had to.
Trish
xoxo
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Trish I think u hit the nail on the head---I hope the newbies don't take our rants as a solution for them. We all tolerate every meds differently--even pain meds so we have to keep that in mind when making decisions. And as long as there are alternatives talk to u'r dr.--It's jst that aromasin has been hell on some of us and we're just here to compare, cuz u hate to think u'r the only one--but if u know more t does help some of us mentally.
Seabeal we all have to make our own choices and pray they are the right one. Right now (as u know) I'm dealing with a rogue colon moving my liver into my ribs, this is awful to me cuz the Drs say Oh this is unusual--well if one Dr. would say Oh seen this so often I'd feel better--the pain doesn't help either it's a constant reminder--so I think we all tend to want to vent and if there are good things to say it's wonderful to hear, I know I'm always happy to hear good news.
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Cami, I'm so sorry to hear about your new health issues. Have to say I've never heard of this either and can only imagine how scary this is. I'll be praying that you find answers soon.
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Oh Seabeal I wanted u to say Oh I've heard about this tons of times LOL no one is
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I am taking a week off and switching to Femara. I hesitated cuz I didn't want it to be worse or have new icky side effects- but I had 2 nights where I woke up almost crying cuz I hurt so much(legs, back, hands.). Maybe it was getting worse. At any rate my MO convinced me that it probably wouldn't be worse, might be better. And the fun part is I remember when I started Arimedex (3 mos) and Aromasin I had a month or two of no issues! So maybe ill get that Gift again! Wish me luck ...
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We all wish u luck--let us know what happens.
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Hope it works for you. I know one person who is on Femara and she is doing great - no SEs to speak of.
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I'm SO much better on Aromasin that was on either Arimidex or Femara. Not entirely, but the arthritis is a bit more than prior to taking Tamoxifen or an AI.
Of course, between the Lupron and AI, my brain function sucks.
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I am thinking that if I make it to 9/17 (my appt with my MO for the 90 days on Aromasin) I will make it the 5 years. I feel so lousy that I figure it must be working (or so they say) and leaching every oz of estrogen out of my body that might possibly be there to make me feel like a woman...lol
Thanks for all the support.
Cindy, I could NEVER hate you...you are the cheerleader of the entire BCO community! xo
Just wanted to say hi and now I am going to stop and go take an advil (or 9..lol)
Peace!
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Doxie, Im told that the beauty of Fareston is that it is used for pre or post men. I am looking to go back to it, the Arimidex is killing my bones lately and I cant take it, being only 42. I still have to do a nipple reconstruction, not sure how that goes, any one gone through it already??
Thanks!
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B123,
I had my nipple reconstructed 4 weeks ago. There is a thread Nipple Reconstruction on the Breast Reconstruction forum. It's been really helpful. I had a flap cut and twisted into a nipple with a little alloderm to keep it from collapsing. Had the tattooing done at the same time. It's healing well and I'm glad I had it done.
There are several other ways to reconstruct a nipple and areola. My PS gave me three options.
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Thats wonderful Doxie! You must be relieved its all over! Do you have implants or fat grafting? Do the nipples stand out under a shirt? Are you awake during the procedure? I went the implant route because I really was not given another choice, my PS told me it was too much to go through having the fat. I have pains and aches in the good side more so then the effected side, I think when I have to exchange them, I will go the other route!
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B123,
I had a partial lumpectomy in which I lost my nipple. I could use a little fat to blump up the tattooed areola, but I think I will skip it. Want to be done. My PS did the nipple and tattoo at the same time. It was under general anesethesia. Glad she wanted to do it that way because I'm a surgery whimp.
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I wish there were proof that AIs save lives........havent seen it or heard a doctor proclaim it.
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Yes, wouldn't that be great!
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Shayne I so agree---u read studies and it's a handful of women that they use and some on placidos do just as well and others don't but some on Als don't do so well--so who knows. U all know how I am about studies every year they can do the same srudy and come up with different answers on all these side issues especilly--Soy or no soy,veggies well common sense tells u that they are good for u but vegans get cancer too, thin athletic, overweight and no excercise all get cancer and even celebrities who eat like birds and have personal trainers. So what do studies mean? Again there are no rules, it is what it is.
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I just wanted you to know that my doctor has stopped the exemestane as he wants me to begin chemo. Strangest thing I never had hot flashes (I imagine that has something to do with my age) while on the poison but have had them since it was stopped.
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Mary I'm confused u'r just starting chemo now or u'r going back on it???
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My cancer is metastatic - original cancer was twelve years ago. I did not have chemo at the time just radiation and three years of tamoxifen and three years of arimidex. When this cancer first showed in hip - I was put on exemestane and had radiation to the hip. It seems to be progressing and that is why the doctor is talking chemo. I guess you might say that I am living proof that these pills don't always work. Six years of them and the cancer came back.
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Oh Mary I'm so sorry--chit I've said there is no proof of anything yet---OK What chemo will u be on cuz now they can do so much more--are the mets in u'r bones or hip???
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mets started in hip - after radiation had some healing and no more pain. Now in rib area.
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Mary now in u'r ribs? Ugh damn cancer--I'm sorry.
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I am also starting Aromasin today. Have been on Faslodex for 1.5 years. Was on Tamoxifen before that but developed blood clots in the lung. My sister had a very bad experience with Femara. So I didn't want to try that. My tumor marker has been rising for the past 6 months on Faslodex alone. Went from 17 to 21 to 34 to 47 to 82. Trying to reverse that.
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Hi Florence I truly hope this does the trick for u. I am restarting too I was off of it for about 6 weeks, now I just started yesterday or today I don't remember already. Wow all the SE's u'r family has had on all of these things but maybe this is the charm for u--I hope so.
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The title of this thread is a misnomer because there is NO LIFE on Aromasin. I am having really bad joint pain to the point where I can't function. I am going to try hard to stick it out until 9/17 (90 days) cause my MO said that is how long it usually takes for the body to adjust, but I am doubtful I will make it that long before I ask to be switched. She said tamoxifen would be next for me (she does not like Femara or Arimidex for DCIS) so I REALLY want aromasin to work for me cause I don't feel comfortable taking tamoxifen with my Mom's history of DVT and TIA's..ugh!
It is so wonderful to hear about some women doing well on this drug. I wish it were me.
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April, my MO keeps pushing tamoxifen also but I refused it. He keeps trying, though.
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Hi April
Sorry you are having such a rough time on Aromasin. I take mine right before lunch...also not the generic...straight stuff. Will your MO give you time off for a good try behavior or let you do every other day or something. Tami scars me...strokes in family
Are you able to walk 30 min everyday...exercise and timing seem to help me.
Sending calm tiny white pill behaving thoughts and prayers...
Devil we know and devil we don't...what a year...
(((Hugs)))
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I doubt I will get any time off Cindy because my MO feels that it takes the body at least 90 days to adjust. She told me that if I make it through 90 days, we will discuss alternatives. I just hate feeling so lousy all the time. It is like having the flu 24/7 in terms of body aches. Hugs to us all and Savgigi, get me one of those tee-shirts, ok? xoxo
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