Life on aromasin
Comments
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Has anyone suffered such hair loss you are considering a wig? I have been on this drug for two years and my poor head is becoming bald!! Will insurance still help to cover cost of wig? I hate this drug.
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My hair is flourishing on Aromasin (exemestane) but was thinner and finer on Letrozole!!
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While my hair isn't as thick as it was pre chemo, once I finished Herceptin, my hair grew really well. I haven't noticed a difference between my time on Arimidex to now (18months) on Aromasin. I wear it short and have to have it trimmed every six weeks.
Trish
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Have had no problems with my hair on Aromasin. But I never had chemo, so maybe that's the difference. I also take Biotin every day.
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hmmm, ending up my 5 years but no hair loss, no chemo either
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bgirl my hair isn't what it used to be so I keep it short when I really never did. ut I haven't that much thinning for a wig=Geeze these surprised never stop.
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My hair was thinning on top as the years ticked by into menopause. I was having to part my long hair in another place because of the thinning. Had chemo and lost it all. So I've kept it short and avoid a style that requires a part on top, still too thin. I don't think it is any different than pre chemo.
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My hair was always thin and fine and I have always kept it short. It's just in the last two years, I have a receding hairline and getting worse. And thinning all over. I see my poor bald head!!! My insurance will help pay for a wig if it is considered oral chemo. So can Aromasin be considered chemo or just hormone treatment? Another question for my BS in April.
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bgail, I don't think u'll have to write that down, but if the Dr. words it the right way u'r ins can cover it. And I don't see why not.All this stuff does a number on all parts of our bodies and they really aren't sure of all the things they do----look up side effects of aromasin, maybe it will help u get what u need.
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My hair has definitely "changed" and not for the better. It is dry like straw and it was always silky before this drug. I slather on the conditioner but it still is much dryer than ever. Also, lots more hair in my brush too although since I always had a lot of hair, not noticeable (yet) but definitely coming out much easier. Hubby said it is always in all of the sinks (can't see without my glasses heh heh) and so I guess it is definitely coming out a bit. It has to be the Aromasin as that is the only "change" since summer and that is when this began.
Today is my one year "cancerverssary" and I plan to try not to think about it. I am headed off to work (which is where I got that fateful call one year ago today) and spending it immersed in a mountain of paperwork that I have on my desk. My brain is much "slower" since taking this drug and thing are not getting done the way I used to do them, that is for darn sure.
On 2/4 I meet with MO and we will see what she says and what my options are. I might just quit. As terrified as I am with being >95% ER+, I am so tired of feeling like chit on this stuff. My joints are so creaky that I actually "yelp" when I get up from my desk. My office neighbor is 29 years old and she always comes running over to see if I am "ok" and I am older than her own Mom. I think I scared this young girl into checking her boobs every day in the shower
cause she sees what can happen to a perfectly normal person who has been diagnosed with this awful disease. The cure in my case is much worse than the diagnosis!! So, since I have DCIS, I am thinking I will take my chances. My MO insists that I take this for at least a year and prefers two since most recurrences happen in the first two years and you get one for one on this drug (for every year you take it, you get another year of protection) so one year would cover that period of time. That would mean June for me...ugh!0 -
April this is a tough decision to make, and I can't give advice because I don't know, I still take it, but there has been damage to my body and it's not going to be undone I know that so unless it gets worse, I don't like to think about it. Bt I don't recall except with the brochure from the pharmacy any dr. telling me how bad this could be so for so long I thought it must just be in my mind--until tests where done then the reality of what these drugs do is unbelievable--u'd think by now there would be meds that didn't impact u'r life so much that cancer is always reminding u every day how it can change everything and the pain u'll have to live with for different reasons. I know I"m very lucky and happy to hold cancer at bay so it's not acting up in anyway.but it's almost comical to have Drs. tell u this is highly unusual when in my mind I don't think anything is unusual it all packed together and does what it wants. I don't think it's just the aromasin, I think (no medical reason) that's it's an accumulation of yrs of surgeries, chemo and rads and then the meds. Our bodies are all unbalanced and not in tune with everything being in place and it just makes what's in place in a position to work harder and our bodes (most) can't take the stress of what has been going on. So it withers or atrophies in other ways. OK I know I have no idea why anything happens and u know I don't so this is an opinion of a pain meds, chemo brain LOL, so keep that in mind.
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April - talk to your Onc about taking a holiday from Aromasin and then trying another AI.....I was a lot worse on Femara than on Aromasin, but am beginning to find, after 7 months on aromasin now that my hips are hurting.......but its still significantly less than how I was on Femara, I was like an old lady struggling to get out of an armchair some days! I didn´t really believe a different drug would be different but it is......I was also very emotionally depressed on femara and and don´t get that on aromasin
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so sorry you are having problems, do you try to stretch and do some exercise? I really believe that if I did not do my dang stretches at the gym, the old body would yell more than it does! I have taken a break from the gym this week, and I can tell! Back in to the gym on Sat!
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I personally did PT for my LE and again for my back so now I do them at home--what I learned, well I won't say much more but it does help a little--so maybe u could just start by walking everyday or something everyday so it helps. I'm not preaching cuz it's hard worse some days but not a lot else to do--well OK I do take pain meds for a couple of different things so, let's face it I'm a bad example.
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I just started Aromasin. I was on Tamoxifen for nine months and it had stopped working. So my MO prescribed Letrozole. It came as I was undergoing a challenge with a tumor in L3 that had begun to grow and caused me so much pain until I had radiation to the site. Once I began to recover and went back to work, I became aware of incessant joint pain that made life horrific. I was unable to knit (which I love), I developed trigger fingers on both (still an issue), and the morning I woke up with hands that were shaped like claws. My knees were so bad it was becoming hard to walk. In December I had enough and just stopped taking it. It's taken a month and there has been substantial improvement, though I still need to walk with a cane because of the left knee pain. So reading all of your posts about Aromasin leave me cautiously optimistic. I certainly hope it does not become as evil as Letrozole.
I hope you are all doing well.
Scorchy0 -
I'm a knitter too, but am quilting right now. Love your knitter critter, Scorchy.
I've been on AIs for 18 months, aromasin for a little over a year. I had early hand joint pain on arimidex. Have just started having trigger thumb problems on aromasin. This is supposed to happen less often with aromasin. I was surprised that my MO didn't think it was the drug causing mine. But we often know the SEs better. Sometimes these SEs disappear as quickly as they appear. You may do fine. My problem is manageable though I will go to a ortho doc for help if it gets worse.
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After switching from Arimidex to Aromasin, I developed trigger fingers, but they went away within a month. The claw hands and joint pain fromArimidex gradually suvsided. I'm VERY happy with Aromasin and hope you have good luck with it. We're all different, though.
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My hands are like claws when I first wake up and then I can bend them in a little while of being awake. I already take a pain killer in the morning and have for a while for my bone on bone knee and severe arthritis in that knee as well. I feel the aromasin is making it way worse PLUS the hand thing and my hips hurt too. BUT, Aromasin is the BEST of the AI's according to my MO which is why she prescribed it and she said Femara and Arimidex are much harder on the body and joints. ugh! So, unless I am willing to take tamox (which I am not) I am going to have to either quit, take a vacation or keep taking the exemestane. We shall see what she says on 2/4 when I see her next.They also mentioned another drug that is related to tamoxifen which name escapes me right now (nothing new since I also have foggy brain syndrome from this drug!) just like the alarm code did this morning when I came to work. I have put that code in 100's of times and yet this morning, I could NOT remember it for nothin...then the cops called..lol. I had looked it up by then and told them no one was here but me and they told me to carry the code with me on my person if I am gonna forget it! HA!
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April, had to laugh at the cops coming, but I know what brain lapses are like. I was at the grocery store, where I go at least 3-4 times a week, with nothing but my debit card and drivers license. All of a sudden, I blanked on my password for the debit card and could not get it. I had to leave my groceries and come back later with a credit card. Naturally, the password came to me later that day.
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question all,
my MO told me I could stop the AL at the end of my 5 years. That being end of Jan (actually, she snuck in an extra month on me) so this morning, first day officially off!
question, should I go off it gradually or cold turkey? I am thinking a gradual thing is best after all this
note, I was DCIS and think that is why she thought it fine to end
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Proud, I am puzzled as to why you were prescribed an AI since you had DCIS. My understanding is that in DCIS the cancer cells are still confined to the duct and didn't potentially escape to anywhere else in the body. Did you have a lumpectomy and radiation? Was the thinking that it would prevent any DCIS from developing in the healthy breast?
What does you MO say about tapering off? I discovered that after three weeks off Exemestane my foot, leg knee and hand neuropathy along with knee pain completely disappeared. And my MO said that Exesmestane didn't cause neuropathy.
Edited to add: I see where Beesie has posted a very informative synopsis about DCIS under that topic. Apparently the treatment varies depending on the type of DCIS.
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Corky, the thinking with DCIS is to prescribe an AI to kill escaped cancer cells to prevent a recurrence of cells that might not have been gotten in the first place during the lumpectomy or rads that they did not know were IDC cells. Also, it can prevent a new primary in someone who is highly ER+ in both the same breast and the opposite breast. I was >95% ER+ so she felt it was wise to prescribe the drug in my case. DCIS is very misunderstood by those who have not researched it. It is not a pre cancer. It is cancer that has not left the duct (or at least they hope it has not escaped but it has been known to have escaped and not found until mastectomy and/or it appears later on as a recurrence which is invasive to the breast over 50% of the time) but if it recurred, it can be as IDC. It is a preventative drug just as it is for those with IDC.
According to my MO, it is not about the type of DCIS for why she prescribes. It is about the amount of estrogen the person with the DCIS presents with. If someone has low estrogen, she does not prescribe for DCIS but with my numbers, she definitely wanted me to take it. I am just not sure I want to deal with the SE's anymore so I may stop on my own. DCIS can recur as often as IDC does within the first two years and as I said before, over half the time, it comes back as IDC.
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Proud, not sure why someone has not answered your question about tapering but my MO says that exemestane mimics a steroid in the body and often if people stop steroids cold turkey, they have issues with withdrawl. I know I read here on this thread that someone had withdrawl when they just stopped the AI cold turkey but it is probably back a whole bunch of pages.
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April, I thought also that I saw someone talk about tapering off so for now, gonna check the onco on Mon. As to why I was given an AL, my docs believe the side effects of Tamoxifin are much worse than those from the Al and wanted me to have the added tool.
I had 3 lumpies and full rads but the docs felt this was one more preventive tool. I sure do not want it to come back so better to hit it hard the first time. I did have one scare of something picked up on a mamo about 2 years ago, biopsy said it was nothing of concern but....my BS had told me at the time, if it was anything, mastectomy was the only option. For now, tapering seems the best option
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Proud I would call u'r pharmacist we all tend to forget they are the specialists in the area, the Drs. go by who complained.
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gee, that is a good idea, thanks Camille! snow here today but actually, I have an apt with pharmacist tomorrow night to talk about Medicare Part D junk so can do at same time
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Camille, I agree! The pharmacists know much more about drug interactions and have seen first-hand the side effects. I quit Fosamax due to jaw pain and trouble swallowing and hip breakage! My internist said my hip breaking had nothing to do with Fosamax and my dentist said the jaw pain did not mean jaw necrosis.
I mentioned to the pharmacist and she said "You did the right thing by discontinuing the drug" That was all she said, but it was enough for me.
Besides I was coming up on 3 years on the drug and supposedly it is not effective after that.
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Good point, I used to take Fosamax, it did improve my bone density but I took it for about 5 years and stopped when I saw the reports. Also, a woman at one of my clients, took it for 6 months, developed the jaw problem and died! She struggled to get back to work but it really went very fast for her.
now, I am on the AL but have not gone for a bone density test since I know I would not want to or even could do the Fosomax now
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Thanks Proud and April for your enlightening views on why to take an AI for DCIS. I am seeing my MO on Weds. to see about trying a different AI. I need one that has manageable SEs!
Camille, great idea about consulting the pharmacist! That is one of the advantages of getting prescriptions filled locally rather than via the mail
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Corky, good luck with all. Remember not everyone has side effects and those that do not have any are likely not on the message boards!
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