Life on aromasin
Comments
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It seems that the docs are not in concensus about when to start AI's. I started chemo 6 weeks post MX, and started my AI 3 weeks post final chemo, while starting radiation. Some docs have their patients wait until they are done with radiation, some don't. Though it can lower your white count some, it's not like chemo in leaving you open to infection. My guess is it won't cause a problem with healing, but running it past your BS/PS is probably a good idea.
Tip: Don't plan on having side effects, 2/3's of women have little to no side effects from the AI! Reading this forum could be a little off-putting, but we're mainly sharing info on the SE's and how to deal with them, so most women on here are having side effects, so take it with a grain of salt.
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LindaKR...thanks so much for your response and good advice...each new treatment step is like standing at the end of the "high diving" board and trying to decide when to jump:) I am a realist so I know every drug has side effects but hearing that others are doing okay is very helpful and knowing there are people who I can "talk" to if side effects do occur so I know how to deal with them...thanks again, Maureen
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Maureen, I think I started the Aromasin about a month after my lumpectomy, but that was probably because I didn't have an appt. with the MO until that point. I've had minimal SEs with Aromasin. Like LindaKR said, don't assume you will be in the minority who have serious problems!
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Thanks for the reply, sounds like it's okay to take a few weeks to recover from surgery before I start it...Yorkiemom:) By the way...your little Yorkie is adorable, what a cute face:)))
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Thanks Maureen! She's my baby! :-)
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Hi Maureen---and it's so true not everyone feels the same, I ike to come here to see if my SE are normal to others rhat way I know. My cousin felt OK on them so it's one of those maybe things. Linda is so right. But we're here if u need us. The ladies on here have inbelievable knowledge of all of this (not me) so if u question anything someone will answer u.
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Thanks for your response Camillegal...I'm nervous about starting it, never took any meds except vitamins until I got breast cancer...I'm glad to know there is somewhere to get information esp about side effects if I get them:)
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I just want to say too - don't expect serious se's I've been on Aromosin now for 8 months and finding it a breeze. I have some tiredness from it, but not major, and I've noticed my left knee aches a bit at night on occasion. My skin is very thin and papery, but no acne thank God :-)
For me Aromasin has been wonderful. I did 14 months on Arimidex and it was 14 months of hell. So if one AI doesn't suit - there are others to try that may be made just for your body.
Trish
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Thanks Trish, appreciate your response:) My oncologist said she's had fewer issues with patients taking Aromasin so she wanted to try that one first - sounds like that's your experience too, I have arthritis in my knee and ankles so it may bother those joints? Have you needed to use anything special to protect your skin?
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I had my last infusion March 15, 2012. I started on ai's April 15, 2012. My surgery was July 27, 2011. I can't remember but I think i started on Ai's about a month later. I had no side effects then. It was only after chemo that
everything went a bit differently. When I was on the Ai's post surgery I had energy, was biking, walking, running around as though nothing had happened.
When I started again, after chemo...very different.
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Thanks for the response Timbuktu...Good to hear that it didn't interfere with your recovery from surgery...I finished chemo on Dec. 26 2012 and I thought my body would "return to normal" fairly quickly but my oncologist said it will take me about 6 - 12 months for the side effects to really go away so I guess that may also be a factor when I start the Aromasin since it's only been 2 1/2 months...
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Hi Maureen
I pour moisturiser on now. I used to have oily skin on my face and had to use an oil free moisturiser all my life. Now I use a "normal" moisturiser lol to put the oil back lol. I use a good quality hand cream on my hands and arms a few times a day. My face is ok at the moment, but it's my hands and arms where the skin is really thin and papery.
I have arthritis in most joints now - caused by Arimidex, my bone scan at dx didn't show any arthritis. My back and left knee is the worst, and I exercise as much as I can now, which helps. My back is pretty good so long as I don't overdo things, when on the Arimidex it was aching all the time, no matter what I did. So the relief now is great.
Trish
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You are so lucky to have an onco who told you it would take a year! Mine said 3 months and when I broke out in blisters after being in the sun, 4 months out, i called sloan and they told me a year to BEGIN to feel normal. That actually cheered me up a lot because I thought this was as good as it gets!
Trisha, my skin is old looking too. I guess estrogen is what keeps us looking young.
My onco said it is not arthritis. He said that the arrimidex makes the nerves extremely sensitive and that's what I'm feeling. I find it hard to believe but when i went off of the arrimidex the pain did go away and if it was arthritis I don't think it would. He swore the joints are not being damaged and they will be normal when i do go off of it permanently.
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Timbuktu, mine is arthritis, and was definitely caused by the Arimidex. I had a bone scan in Sept 2010 and there was none, and had the next one done in March 2012 and it was everywhere. Now I'm off the Arimidex I don't get as much pain, but it still aches now and then.
Trish0 -
Timbuktu,
Are any of your joints swollen? I have one in my foot and one in my ankle that are at times very painful and always swollen. My hands ache a bit, but no swelling. The foot/ankle all started with zometa, calmed down on anastrozole, then became much worse almost immediately on aromasin.
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Well, that stinks Trisha! To tell the truth I found it hard to believe that my joints were not being destroyed.
You know it's unbelievable but I have never gotten the same answer twice when I have asked two different drs.
It doesn't give me a lot of confidence in their "knowledge".
I'm so sorry you had that happen. Are you on another AI?
these drugs are really really new and no one knows what the long term effects will be!
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Doxie, my fingers seem swollen from time to time but it's hard to tell.
Arrimidex really hurt my fingers. It was painful to turn a page in a book.
I'm on aromasin now and my fingers, while slightly stiff, are not painful anymore.
But my legs! OMG. Some days I can barely walk. The knees and the ankles and sometimes even the hip.
Something happened to my leg when I sat for too long and I wound up going to the ER because it was
hot swollen, black and blue and i was afraid it was a blood clot. It wasn't but they didn't know what it was and I'm pretty sure that whatever it was had something to do with aromasin.
Has anyone cut back on the dose? I was thinking of either taking a vacation from it just to see if everything goes away or taking it every other day but I'm afraid.
The dr kept telling me that the longer I would take it, the sooner the aches would go away. He said they reach their peak around 6 months. And fish oil and excericize will help.
Some days the pain is just gone. i can't understand it. i guess I should keep a diary.
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Timbuktu - the drs don't seem to know as much as they should lol. The list of se's for Arimidex has arthritis on it :-)
Yes, I"m now on Aromasin and doing so much better with it. Arimidex also caused a sort of "chemo brain" for me too, I was so bad, but didn't realise quite how bad it was until I went off it and onto Aromasin.
If Aromasin is giving you a lot of bad se's you can try another one. I had a 2 month break from Arimidex before starting Aromasin, and it was wonderful not taking anything. I was pretty scared about trying Aromasin, and had decided if it caused the same se's as Arimidex I'd try another one, I think Femera?, and if that was the same I'd go without as quality of life was becoming an issue. Thankfully all's going well, and if I had to I could stay on Aromasin for 10 years quite happily.
I have found that exercise is helping me a lot, so it might be worth pursuing.
Trish
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Thanks so much for all the information on Aromasin, I will be seeing my surgeons tomorrow so may be starting the AI after that visit...I feel more positive about giving it a try and think I have a much better picture of what to watch for...you were all so helpful:)))
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I've been on all 3 AI's and so far aromasin is the easiest to take. I've only been on it for about 2 months.
Now I'm wondering about this dr...
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Good luck Maureen.
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Achey. Advil fairly frequently, often for sleep. Some days I warm right up, others I creak all day. My hands are sore. My arms (with some tendinitis or???) hurt!! I'm trying think that I exchanged cancer for arthritis. But whatever. I just want my fuzzy curly Harpo Marx hair to look like a style so I could ditch the wig. May 1 it will be a year since the buzz cut.
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My Onc told me the stats on people having SEs on Aromasin is 40%. I was one of the unlucky ones.
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Wow, I've never experienced my dr.s not recognizing SEs as Aromasin related! It may be time for you guys to go dr. shopping. My MO diagnosed my tingling hands as an SE of Aromasin, soon as I asked her about it.
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hi,
i was suppose to start aromasin last week. i finished chemotherapy on mardh 1st. march 8th was my first triple dose of herceptin. i wanted to see the results of my muga and how i would react to that before throwing in the addition of another drug. i go to the oncologist this thurs. and will probably start then. i have a few questions. do you feel side effects immediately? i was told that i would feel like i have arthritis and to try and exercise. i was also told, although i lost my hair with chemotherapy, it was likely i would have thinning hair while on aromasin. is this true? my daughter is coming to visit this friday and i don't want to feel sick while she is here. i am very happy to have found this group and appreciate any input you have.
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D, it took a couple of months before I had any discernible SEs. I have been among the lucky majority, none of my SEs have been severe and I can easily deal with them. Also, remember if you get some bad SEs it could be due to fillers in the particular manufacturer's drug. Some people switch to another manufacturer, and, poof, SEs gone! Don't worry too much. You should be just fine for your daughter's visit.
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yorkiemom
thank you so much. anyone have any thinning or loss of hair. just 2 wks. out my chemo and awaiting hair growth. my luck it will start on my chin! you would think after surgery, radiation and chemo i would be used to this. still at times rebelling in my mind for not being in control of what my body does and what i am told has to be done. the funny thing is, even my wig is losing hair!
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D, I haven't noticed thinning hair, but many on this thread have. Don't know why I had it so easy on thhis drug, but maybe having gone through a very easy menopause is a clue. I think I had two minor hot flashes during that time, and haven't had one while taking Aromasin. I do take Effexor, which may be masking them. Lol, about your wig!
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My hair did get a little thinner. It was happening even before bc. After chemo it got thicker again but after a couple of months of aromasin it's thinner, male pattern baldness. I got a short haircut from a great hairstylist and now you can't tell at all.
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D I was on Herceptin, and my hair started growing back while I was on it, but slowly. Once I finished Herceptin my hair growth just took off. I didn't really have a hair cut the whole time I was on it, but within 6 weeks of the last H treatment I had to get it cut, and then every 6 weeks after that (I keep my hair short, always have). One thing I did have to get pre bc was having my hair thinned every time it was cut, I haven't had it thinned once since bc. On Aromasin (and Arimidex) it's stayed thin. It's not a huge problem as it was so thick before it was a pain, always getting bushy. It's changed texture too. It used to be very brittle and dry - now it's lovely and soft.
Trish0
