Life on aromasin
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have a cookie! lol
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Question - anyone noticed a sensitivity to elastic while on Aromasin? I know my skin is dryer but wondering if anyone has noticed differences with elastic? I have been getting a red rash after weaing my lymphedema sleeve and I'm trying to decide if it's Aromasin related. Haven't changed routine, soaps, etc. but also notice increase itching around panty wasteband. At first I chalked up the itching to dry skin but then the reaction to the LE sleeve made me wonder if there is something else.
Sensitivity to elastic sounds far fetched but........ it's got to be something.
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Dogs don't start me about cookies, the only thing I want to eat is salt or sweet ==2 horrible things. I don't want reg. food --I know better but I'ts like an addiction-everything else tastes icky to me.
And Ohio nothing surprises me what these meds do to us. my skin is itchy but I do think it is dry skin but elastic could aggrevate it too. IDK for sure but it just makes sense to me.
When my mon was in her 80's she was cold alot my dad too and walking in their house we'd all be sweating LOL--I'm in my 60's and I've already started that. I bundle myself like it' 20 below and it's 60--that's why anything goes with this. With all of this.
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my back is the place that it is itchie as all get out! of course, the middle where I can nor reach it...but was not blaming aromasin
another reason for me to look forward to the end of the dumb 5 years
crossing fingers and toes for that day
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I was extremely itchy for weeks and then I realized I'd switched shampoos to Pantene. Great shampoo but I'm allergic to it.
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Latest - I think the itchy skin is related to dry skin. Been using more lotion than normal and it seems better. My sister (nurse) thinks the redness under my LE sleeve may be heat rash! This is not good - the summer hasn't even started. Gonna have to wear that thing again and see if I get the rash when I can have one of my sisters look at it. It does go away after my sleeve is off for awhile so that lends itself to the heat rash theory.
Never a dull moment.
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I have not been on this board for a long time, but need some help....I took tamoxifen for 5 years. I had an oopherectomy in 2011....I am now taking Aromasin and I hate it. Bad diarrhea. I tried Femara and that made me lethargic. I am seriously considering to stop taking anything. I did okay with the tamoxifen,but I am so tired of side effects. Can I get some honest opinions? Thank you...
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I had diarrhea the whole time I was on Aromasin. Ive been off of it almost 3 months and finally starting to feel good again. Im not looking back
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Great going Shayne! It's wonderful to hear!
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Wacky, do you know how ER+ you are? That would be a big factor in your decision.
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I have been reading this board for about two weeks and would like to give you my thoughts on Aromasin/exemestane. I was originally diagnosed with bc 11 years ago. I had a lumpectomy and then radiation (I think it was 37 treatments). I then started Tamoxifen. I had terrible leg pain and stopped it at 2-1/2 years. Then started Arimidex which I took for 3 more years. Leg pain continued, not quite as bad, and I was afraid to stop.
Now after 11 years I have mets in my left hip (same side as the original bc). Once again, radiation and now exemestane. I can honestly say that tamoxifen and arimidex were a walk in the park compared to this poison. The joint and muscle pain are not getting any better even though I am into my fourth month on it. I have terrible insomnia and my hair is going bye-bye - not to mention the expense of this drug. I will soon have to make a decision whether it is worth staying on this horrible drug.
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So sorry to hear this story, for you as well as for the rest of us. Is there any reason why you were given aromasin and not arrimidex?
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And yet, I've been on Aromasin/Exemestane for 1 1/2 years and am doing very well, with only minor, easily managed, side effects.
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Mary - sorry to hear about the mets. Sucks. Totally agree and had the same SEs on Aromasin. I was 100% ER+, but the quality of my life was nil......and I chose to go off and feel better. Its a decision we are alone in, no one can make it for us. For me, it wasnt hard. I couldnt get off the couch and I was in so much pain. Im working with a ND, changed my diet, and just started doing yoga every day and I love it and feel great. Its very healing in every aspect of my life.
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Oh Mary so sorry to here this, what a hit u'r taking. Like Shayne said it has to be u'r decision completely, but these drugs are crao--I'm glad to hear someone doesn't have crazy side effects but most of us do and it's a choice we have to make--how are u feeling?
Jackie I think (don't know) but maybe it is dry skin I have an area in my back that is I didn't have a wooden back scratcher I'd go nutes cuz I can't reach it so I figure, when I slather my skin I don't reach that area so maybe it is, but it's so irratating especially when I'm all comfy and it's itchy alot. My cat gets all upset cuz she has to move while I scratch. LOL
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Shayne...how long were you on the Aromasin? I hope I make you all laugh a little. I wouldn't mind having the diarrhea if I could lose some weight!!! LOL...but that's not happening. In what ways did you change your diet, Shayne?
My back is itchy also and I have a back scratcher.
Mary...I am so sorry you are going through this. I am leaning toward stopping. I mean just a couple of years ago it was 5 years of tamoxifen and that's it. My oncologist says if it were her she would try to put up with it. Also, I have osteoporosis in my spine and this Aromasin is supposed to cause bone loss. I just feel like if I got a recurrence I would blame myself..........
Thank you all for your responses. I really appreciate it.
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I think all the IAs cause bone problems, but my Onc told me that Aromasin causes the least damage.
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wacky - I was on Femara for about 5 months when first diagnosed. That caused knee pain that was unbearable. I still have side effects with Aromasin but all very tolerable in comparison.
I have itchy skin, too. I attribute it to the dry skin that comes with life without estrogen. I started using more lotion since I scratched my back raw in a few places. I don't have insomnia with Aromasin - I have always had a few nights here and there where I have trouble sleeping but generic benadryl helps during those times. Some people take the med at night and seem to sleep better.
My hair thinned a bit on top so I went to a shorter cut and it looks good. I liked the carefree days of baldness and that is always an option. Well, I say that now - it would be a great big change but it is what it is. I never had any GI issues. I have trigger finger on both hands - no pain, worse in the morning - doesn't change my life.
I'm 100% ER+ so plan to stay on whatever meds fight the cancer with tolerable side effects - so far I like Aromasin much more than Femara.
At the end of the day you need to weigh the options and make the decision you can live with - no regrets. Like yorkie said - the percent positive may help make the decision. For me, at 100%, I'm looking at meds for a 'very long time' as my MO said. Don't know how long is a 'very long time' but today's a good day so I'm happy.
Best wishes as you make your decisions.
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Now i'm wondering if it was really the Pantene that caused the itchy skin? I went off Aromasin and Pantene around the same time! lol I just didn't think of the aromasin.
Woke up today pain free! Words can't describe what that means.
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I was on aromasin for 7months. The last couple months were the worse, with dibilating bone/muscle pain that confined me to lying on the couch. The heart palps were the final straw and my Onc took me off them.
There are no guarantees as we have seen on this thread and many others on this forum. People take AIs for years, and still have recurrences. Ill take my chances - I have changed my diet radically, exercise and have removed at home toxins. Im not afraid, I think positive knowing I am doing what is right for MY body - which was NOT taking an AI.
Just started a daily yoga practice - it has changed my life. I am feeling stronger and mentally feel more in tune and stable than I hve pre dx. Sleeping better - so many benefits!!
wishing you all luck in your decision - and peace afterwards!0 -
I have been sleeping so much better too! It will be 3 weeks tomorrow that I've been off of it,
Interestingly, when I went to Sloan, and told her my reactions to arrimidex and femara, she wrote out the script for aromasin saying "you may be one of those who cannot tolerate the AI's". I was surprised that she said that so quickly. She said I should think about Tamoxafin but I told her I had strokes in my family. She still said I should consider it. But what impressed me was that she immediately seemed to accept that I was going through something. That is was very possible that I could not tolerate them. When I went to my onco here, he kind of insisted I stick it out as long as possible. His nurse kind of poo pooed by reactions. He told me to excercize and take fish oil.
I'm not sure what I'm saying here except that I think the Sloan dr got it. That I wasn't just being a complainer or a wimp. She knew that there was a certain percentage of people who really cannot tolerate these meds. It wasn't a lack of perserverence or character or whatever. I see my onco next Friday. I will come prepared with a list of my side effects ie sufferings. We'll see what he says.
I certainly understand his desire to keep me on them. I just hope he understands what they have done to me.
At least now if I give them another try, I'll know what to expect. At least half of the suffering was the fear that it was not the pill causing the symptoms.
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My onc highly recommends me to stay on the Aromasin. My primary says enough is enough. I mean first it was 5 years of tamoxifen, now they added 5 more years of AI. what if they add 5 more? I know I should be grateful but I am so tired of these meds. I hope I don't sound like a baby. I think you have all helped me. Thank you so much. I know my onc will give me a hard time but I am going to stay off of the Aromasin. (I think!!) LOL...
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Shayne, I'm very glad you're doing so well now! But I want to add that being Stage 0 is a lot different from Stage II and III with nodal involvement. We who have had it move to the nodes or have LVI know that there are probably some cancer cells moving through our bodies. Not a pleasant thought, but there it is. I don't want to give those suckers a chance to set up shop somewhere else if I can help it. No, there are no guarantees, but we significantly increase our odds of stopping cancer in its tracks by taking an Al. JM2B.
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Yorkie, hate to be clueless but what is LVI?
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Sorry pt, it means Lympho Vascular Invasion, or something like that lol. Anyway, it is when the cancer learns how to get into the bloodstream directly from the tumor site (somebody correct me if I've got this wrong!). Even though I had two nodes involved, I had no LVI. Either situation is dangerous, which is why I take my Aromasin religiously every morning!
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Thanks for the reminder Yorkie! Yes, I had lymph invasion and a micromet. This is a really hard call for me. Now that I see it was the med that was causing the problems I'll probably go back on it.
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How could the tumor get to the node without lymph invasion?
I have a friend who is a pathologist. He looked over my case and said something about lymph invasion being irrelevant if it's in the node already. IOW, it's on the move somehow. My lymph invasion was not picked up at U of Chicago, nor was the micromet. Only at Sloan. I asked how that could be and she said it's very hard to see.
Oh boy, this could drive a person crazy!
But boy do I feel great today!
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I don't know Tim. I've never understood this. Maybe the route to the node is different than the cancer building it's own blood vessels, which is what I think LVI means. Anyway, on my final pathology report, after surgery, it says no LVI.
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I question what will happen if I stop the exemestane but keep reminding myself that I had a recurrence even though I had taken tamoxifen for 2-1/2 years and then arimidex for three years. Maybe these drugs still don't give a lifetime guarantee so should I put up with this kind of pain. It is a difficult decision.
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