Life on aromasin
Comments
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I guess I should have mentioned that when I brought it up I also mentioned that I was shooting for 20,000 steps day and swimming at least a half hour each day (and, of course, GAINING weight). So, my MO probably felt like she had to do something else. Just staying active was not enough for me. (My knuckles swelled so much I had to have a ring cut off. Ultimately I couldn't take it).
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Good to know. I feel very fortunate muscle pain and joints are my worst side affects. I'm getting tests today. Femara affects somethings we can't see. Results next week.
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Good luck Marijen
Professor - having been a skinny minx for 46 years I gained a lovely spare tyre on tamox that hasn't gone away with aromasin.
Photos of me from 5 years ago I have to explain to people that yes that IS me in the photo (cos I don't look like that any more!)
This:
Not this:
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Hi all. I was on Tamoxifen for 8 months. I started right after finishing radiation at the end of 2013. I had lots of complications including horrible asthma, swelling, ovarian cyst and a uterine polyp. Had ovaries out then onto Arimidex. I lasted 4 months and then my face and tongue swelled and I could barely breathe. So then I tried Aromasin. I lasted three months before the aches and pains and mouth sores were intolerable. I stopped three weeks ago and planned to start again. I just went for a physical and mentioned that I have been really thirsty. She did a blood test and I am pre-diabetic. What?! I google aromasin and diabetes and learned that they can be connected. And guess what? Diabetes is a side effect to chemo and steroids too. Nobody ever told me that.
I still would have done the chemo (look at my stage and lymph nodes, I was willing to do anything!) but it would have been nice to know.
I am just so aggravated. Before treatment, I was healthy and active. I was fighting my weight but it was a good fight- five pounds. 10 at the most. Now I am obese and I am not happy. Since treatment, I have struggled just to breathe let alone the weight gain, the lethargy, the swelling.
I took the anti-hormonals because I was told it was my best chance to escape a recurrence. I keep trying. I keep taking meds that make me feel terrible. I keep telling myself that the side effects of the anti-hormonals are easier than a recurrence but now I am looking at diabetes. Please don't get me wrong, I know recurrence is terrible (hence all the meds and treatment) and I have nothing but compassion and respect for anyone who is dealing with this disease but how much can the anti-hormonals do to prevent that from happening? And what is the point if I end up with diabetes, uterine cancer and all the other horrid side effects from these drugs?! I am just tired of dealing with every possible bad side effect happening to me!
I didn't even know that diabetes is a possible side effect to chemo and steroids, which was the beginning of my weight issues. I gained 35 pounds during chemo that I can only lose when I stop taking the anti-hormonals. I am just so frustrated.
I think I am done with aromasin.
Thanks for letting me vent.
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Follow-up, I had a bone density test after six months of Femara and the reults have fallen back from last year but not as bad as the year before..yet. Labs are good as they've been in years. Surgery in 12 days.
AryaS. i'm really sorry, it looks like you've really beeen suffering. I would find it hard to keep taking something that makes me feel so bad. Have you contacted another doctor? My Onc was going to put me on Arimidex and then decided to go with Femara. It was less sides. I have not gained weight, but I haven't had chemo and won't. Femara makes me feel less like eating, my healthy appetite has been toned down. I'm sure there are way more knowledgeable people here that will respond to you
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AryaS,
Vent away! Sadly, cancer is the gift that just keeps on giving. I'm sorry hormonal therapy has been so tough on you. I don't think anyone would blame you for quitting. Best wishes to you!
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My med. onc. plans to start me off on Femara once my RT is over. Any reason why Femara rather than Aromasin or Arimidex? She also wants to put me on a bisphosphonate (probably Fosamax) to help ward off or at least slow down osteoporosis. I’ve heard that all AIs can raise LDL cholesterol--but that statins not only lower it but also help guard against osteoporosis w/o the jaw necrosis danger that bisphosphonates can cause. I am 10 years-post-menopausal (with a horrible family hx of cardiovascular disease), so that’s why an AI rather than Tamox. Thoughts?
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Hi ChiSandy - just "met" you over on cats,cats, cats - I can't comment on your onc's decisions as I'm not knowledgeable enough but I CAN tell you my onc did not give me another drug to ward off osteoporosis. I was simply given a medical grade (rather than an over the counter one) VitD+Calcium tablet. Far as I can see the strength of the medical grade one is not much stronger than the OTC one.
Marijen - best wishes with your surgery, keep us posted if you can.
AryaS - I wasn't told of any diabetes risk from chemo and steroids. Same time as I was going through BC treatment, the sister of a good friend was also having treatment, same hosp, same very eminent oncologist. My friend and her sister's Dad is a type 1 diabetic. My friend's sister had lesser grade, much earlier stage cancer than mine. She was ER+PR- Her2+ (I'm just ER+) so she had the same Taxol + Cyclophosphamide regime as me and she had herceptin for her HER2+. She had a lumpectomy, that's how early her cancer was. She was not put on hormone therapy as it is not a protocol for very early stage, low grade cancer here. Now I had the full works: mastectomy, chemo, rads, hormone therapy. (yaaay - all the fun). Amazingly she has ended up with the weight gain and mental fog issues despite no hormone therapy - blame squarely pointing at chemo in her case. Worse still she ended up with type 1 diabetes which had never appeared in her before. Her medical team are frank that the diabetes has been triggered by the chemo. I have to say that despite that I had the mastectomy and now the hormone therapy, both of which she escaped, she is far more down and angry than me and I think I may have been the luckier one which you would not have thought at our initial DX. So vent away. You have sympathetic sisters here. You know what you can or can't tolerate.
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Sad fact is that for some of us, the side effects of this drug are bad. Hugs to all who are suffering. I am once again in agony and thinking I am done with exemestane and on to femara in Dec. when I see my MO...sigh!
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Chi- my Mo started me on femara and I then switched to aromasin. I think your MO chose the AL that she had the most experience with but most MOs will be very willing to try you on another if you ask, the important thing is to be taking one of them.
Also I had taken Fosamax years before for osteopenia and had ended it at the time of my diagnose, at the bone density at the start of my ALs my bone density was fine. I did not want to go back on Fosomax so I stepped up my weight bearing excercises and at the end of my 5 years of ALs my bone density is still fine and dandy.
Oh yeah, the gym was my form of an upper to get me through all the junk and my docs, totally approved of that
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Question, Ladies....has anyone gotten a UTI while on Armosain? I'm most curious. First one in my life was this past Spring. Late Aug to early Sept I had another one. Now, I've another one.
Thing is, I never know I have one. Every time, they put me on Cipro and then turn around that Macrobid is needed as well.
While I"m on questions, is there anything between Aromasin and Cholesterol? After years of being down once I'd quit smoking after the BC diagnosis, it's back up high again. Dr immediately started talking about statins. I said I've done that before, got mine down without it for years and stayed that way until now. She actually asked if I was refusing it. Told her no, I'm declining at this time. Shocked me that someone who didn't know a hell of a lot of my history (newer PCP for me) wanted to jump to that level. I'm not Diabetic, but am Pre-Diabetic. That was before the BC journey.
Thanks!
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I gotten a lot of UTIs but never connected it with the AL, my cholesterol has always been an issue but it is level now as I am off the AL after my 5 years
also, when I get a UTI, my doc insists that I come in and she tests my urine for what I am resistant to. Cipro only rarely and mostly Macrobid will clear me up quickly
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GalSal - raised cholesterol is a potential SE of aromasin.
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GalSal,
I got a UTI shortly after I started aromasin, but I haven't gotten one lately.
My cholesterol seems OK, but my blood pressure is higher. Is HBP a side effect of aromasin?
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proudtospin - AI dries out the vagina area inside and out. Therefore it would be easier to get an infection. Also you can look up side effects at drugs.com from the FDA. To see all side effects related to your aromasin.
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Thanks ladies. smh Do NOT want to go on a statin!
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Elaine, Aromasin does have a side effect of sometimes causing high blood pressure. It has caused mine to elevate enough as to make my PCP prescribe Lisonipril for me and I NEVER had an issue with HBP before. Just luck of the draw that it happened to me. It does not happen to most people I heard.
Marijen, that makes sense to me as to why some people get more UTI's.
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Hi ladies I was on tamoxifen for 4 1/2 years with horrible side effects. I quit taking it and then MO tested and I was post menopausal so he put me on Aromasin. Things have been pretty good a little joint pain but glucosamine has helped. The last month I have had terrible gas. Has anyone else experienced this and if so is there anything that help
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Has anyone tried MegaRed joint supplement? It's a smaller gelcap than the usual glucosamine tablets. It has krill and hyualuronic acid
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I was thinking about taking MegaRed Leslienva but have not bought it yet. If you do take it, can you let us know if it makes any difference? Glucosamine seemed to work a little in the beginning and then I did not find it helpful at all unfortunately so I stopped spending the money on it. If something works though, I am all in!
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Hi everyone. Does anyone know whether "insomnia" listed as a SE refers just to primary insomnia, or also to secondary insomnia? I seem to be waking around 3am and rarely get back to sleep. I've never been a stellar sleeper so this may not be a result of exemestane, but thought I'd check with all of you.
Thanks.
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Not sure about that. I too have been a poor sleeper for years. Have done better on aromasin than on arimidex though.
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I slept better on Aromasin, actually I never slept on Arimidex!
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Strong, I've been sleeping fine. But I admit I take melatonin every night.
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I started the MegaRed but had to stop because I have surgery coming up and it contains fish oil.
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I had secondary insomnia on it.......
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Thank you, everyone. I may try Melatonin. Haven't used that in many years. I take Ativan occasionally when I have had a run of really bad nights, but I would prefer not to do that.
I see my oncologist in a couple of weeks and she is hinting at switching me to tamoxifen, because of all the SEs I am experiencing on aromasin (and Arimidex, previously), but from what I read on the boards, the SE profile is no better than that of Aromasin. Better the devil you know...
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I sleep better on Exemestane than Anastrozole. Haven't needed Melatonin like I did on Anastrozole. I do use a sleep mask and it helps.
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I used Melatonin twice and had night terrors both times - not a good fit for me.....anybody try warm milk - my two maiden aunts used to swear by it.
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I took melatonin for about 6 months after i finished my treatments. My doc was very emphatic that I start with lowest dose possible which was 0.3mg which I found on Amazon. It was enough for me. No night terrors and I was able to regulate my body back to a normal sleeping pattern. After 6 months i weaned myself off and have slept very well ever since despite Tamoxifen aches and pains.
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