Life on aromasin
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I was on Aromasin for a short while but am now on Faslodex because of mets - however just wanted to warn that not "everybody" should be on calcium - my drs. PCP and Onc don't want me on supplements because my diet is rich in calcium and my bone density has remained the same for the last five years and I am 70 years old - they keep saying to check with them before adding any supplements and I agree.
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Just to chime in here, overall, I've been on all 3. Arimidex for one year of a clinical trial, 2 week break then Aromasin for 5 months because I had bone/joint effects and terrible INSOMNIA on Arimidex. but started to lose my hair again on Aromasin like it was chemo! So 2 week break and Femara for 5 months. Then one day my inner gums and mouth developed painful sores, which my MO cultured and put me on this $175 for 5 days Stanford Solution. Took a month for them to Go away completely. He couldn't figure out why, but I told him that I googled it and sure enough, after 5-6 months this was a pretty high-incidence side effect. (10% or so). He had NEVER heard of this,,nor did my other MO's NP. But after another 3 week break, MO #1 agreed to put me back to Arimidex, but THIS TIME, a different manufacturer. Don't know why, and of course I'm not 100% pain free, but I am tolerating this Arimidex soooo much better, NO mouth sores, MORE hair but not totally back. And I can SLEEP again. Can manufacturers make a difference? They can't really say, they don't really know. So ladies, the moral of the story is, I think we're in uncharted waters here. Period. We need to make our own reality of what works for us. Because now they're all telling me This may go to TEN years, not five. And just when I thought I was halfway there
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Barb many here say the manufacturers make a difference. Most prefer Teva or the Brand name. When I was on Anastrozole the brand didn't make a difference. I'm better with Exemestane but I agree I had a little more hair loss initially. I've been on it for 2 years and it seems to have stopped.
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Hi all,
Is there anyone on Lupron with Aromasin? I'm still baffled by the fact no one has removed my ovaries in light of many recurrences. It's in my nodes on the opposite side axilla now.
May the Lupron is my problem. I'm grasping at straws.
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I'm on Zoladex (a different ovulation suppressor) with Aromasin. Typically, an OB/GYN would be the one to remove ovaries. I talked to my OB/GYN about removing my ovaries so I could get off the Zoladex (monthly shot). He said it was my call. Unless there are problems with the ovaries, (cysts, e.g.), he typically doesn't take them out. In general, women live longer if they keep their ovaries. However, he felt I'd been through enough treatment, and that if I wanted them out, he'd be happy to perform the operation. I decided to keep them for now. The Zoladex shots don't take very long, and I can get my port flushed at the same time. I may change my mind in the future, though.
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Ok ladies, so far so good on Aromasin - ha ha (it has only been like 4 days) I have a headache today so now I am wondering what that is all about! Funny how different MO's have different ideas. I was off all AI's since 2013 because i had a hysterectomy (full) so my MO at that time told me i no longer required an AI. I now have a younger female MO and she is insistent that I try another one (I was on Femara when I had all the issues) and keep trying to find one i can tolerate!
Fish oil is doable so I am going to try and find some today. I don't want to loose any more hair so that is a worry!
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lala1 - how much ginger please. I was reading about it at Sleuthjournal.com last night.
Barb - I had mouth sores for three weeks on Femara, 7 months out. They came out of nowhere. So painful I lost five pounds. Never had them before.
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Marijen--I take 1 500mg capsule of ginger once a day. That, combined with the turmeric and magnesium, works well to keep my joint and muscle pain at bay.
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lala, thanks. I wonder how much natural ginger I would have to eat? I'll try to figure it out. Does real ginger ale count I wonder? I've been craving it.
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I have a friend who makes her own ginger tea with lemon but I don't know how much raw ginger equals the capsules.
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So maybe she grates the ginger, I'll try to figure it out. Someone today told me her bad knees were better with Vit D and a high daily dose of B complex. She said she takes something like gummie Bears but they are gummie dots. Only took a few weeks to feel better and she had been suffering a long time. She has said a 34 year old she knows turned up with a big hard liver cancer and lung cancer - inoperable. Like out of the blue. Started with shortness of breath. Makes my problems look very very small
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For those of you worried about hair loss, I forgot to say I take 1 biotin tablet every day (not sure what the dose is, usually they come in 50-100 mgs) since I finished chemo, and my hair is in great shape and maybe thicker than before the dx. So I think the biotin is working for me, regardless of any AIs I've taken.
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I take 5MG of biotin (5,000 mcg) as directed by my dermatologist. You can also use Minoxodil
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Lago do you have a good brand? Claireinez what brand do you use. I think it matters and there are so many choices.
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I used to use Vitamin Shoppe but now I just buy Nature's Made or Finest at Walgreen's when the sell buy one get one free.
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Hi ladies !Hope everyone has a wonderful Easter! I went for my last visit to my surgeon .5 years! My MO says I can stop taking my pills.:)
Anyone know how long it takes to start feeling normal again?
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Congratulations! You will have to let us know how it goes. I have 2.5 years left...
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Walley that's great. Just curious what was you diagnosis? I'm considered high risk so my MO keeps saying she wants me on it for another 5
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Walley that's great news.
I'm like Iago only my MO has no end date in view
.Maybe you can pop back and let us know how you are doing after AI's - it would be great to hear and hope you will feel the benefits of "normal" really soon.
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That's great, Walley! Just curious, did she/he recommend doing a Breast Cancer Index test?
I'll be 3 years out this June, but it sure seems a lot longer!
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Biotin: Country life, from Sprouts 1 mg.
I hope it helps; it did me!
C
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Somehow I knew I'd get hit with hair loss. Has anyone followed the issue for long enough to know what I can expect? I have taken biotin and liquid silica everyday since starting chemo. However, after 6 months on Aromasin the amount of hair that I lose when I shampoo and the amount of breakage I have when I brush my hair is reminiscent of early chemo. The other symptoms I've had with aromasin (joint pain and insomnia) have lessened so I'm lucky there. What's the prognosis with hair? Am I going to end up with my scalp showing and ridiculously thin hair or will this too taper off and stabilize over time? How bad does this get? I use Nioxin shampoo. Is Minoxodil better? Cancer sucks. With that said, I am so freakin' grateful that it's only my hair that is concerning me now.
I hope everyone is having a nice start to the Spring!
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I used the Tamoxifen for 3 years and saw severe hair loss. When I stopped 3 years ago, the hair has since come back but not to the original fullness. I'm given Aromasin for my 2nd diagnosis and my hair isn't too bad. I'm not sure it's that my individual reactions to different drugs or the first drug has "winnow out" the weaker follicles. I take biotin now though.
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Treelilac - Thanks for your reply. From everything I am reading the severity and duration of the hair loss seems quite individualized. At this point my hair looks fine. I will talk with my oncologist. He did tell me that it's not that bad for women who do lose some hair from Aromasin. I'm going to pin him down on exactly what "not that bad" means.
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Hope he's not bald
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treelic when I went to see my LE MD a few months after chemo he asked how I was. I said fine but I wish my hair would grow back. He said "Me too!" He's in his 70's and bald.
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LOL! Doctors should be a more positive role model than that.
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Too funny. It's all a matter of perspective.
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I was on Arimidex first. Bad insomnia. After 1 yr. went on Aromasin. Hair loss just as if I was beginning chemo, all over again. In addition to the insomnia. Down to the scalp almost. Went on Femara. After 5 months, the worst mouth sores, all over my mouth and gums, just like I was on chemo again. Back to Arimidex. It all sucks, and no, my hair never did return to its former glory. Well, not glory, but certainly better than the dryer lint on my head now. It's been three years. I'm not sure I can do 10 years. I'm taking it to five years and then will reassess. Some research is now saying to take it until your natural life expectancy minus five years (the length of time they think it takes to reoccur??) which for women is 84 minus 5=79. My MO just shrugged, said all the data isn't in yet. To go home and enjoy my good health, her exact words. Really? Joint muscle pain neuropathy LE wrinkly dry skin no hair weight gain like I swallowed an inner tube bad sleep no energy is good health?
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The data isn't in for 10 years so how do they even know for lifetime? Those results will be much much further out.
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