Life on aromasin
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Jessica- sorry to hear your mom is not feeling well. There are so many bugs going around right now, the flu is bad, adenovirus too, etc. It is common when you don't feel well, you automatically think it has to do with the cancer.
As your mom is post menopausal now without the ovaries, but may still have her uterus, any sort of vaginal discharge should be checked out. I had a full hysterectomy right before my bc surgery, so ovaries came out but also my uterus as well. The only discharge came after my initial surgery in 2012.
I would make an apt with her gyn to get things checked out, or family practionner if that person does her annual exam.
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thanks for your reply! The flu/bugs that have been going around are horrible! I'm sure she just caught something like that in regards to the diarrhea and feeling like crap. So far today she's better, no diarrhea which is good. She is definitely going to mention the discharge to the gyno and oncologist! Today she has had no discharge or anything of that sort. Just the one time last night and that's it. She also told me that the discharge was mostly clear, just a spot or two of pink. Today she is dry down there (sorry for being so detailed lol). This past summer she was hospitalized and had to have surgery for an umbilical hernia. She went to emerg for abdominal pain because she could barely walk, so given her breast cancer history they did a CT scan to make sure it was nothing cancer related, and thank God it was only a hernia (who would have thought a hernia is something to be happy about lol)....anyways the CT scan was clear for anything more sinister, so I would assume that the chance of the discharge occurrence last night being anything cancer related is small? The report did comment that the pelvis and pelvic organs, liver etc all looked good. Everything was good minus the hernia. Sorry, I feel like I'm rambling but any little pain or anything unusual just scares the crap out of me. Thanks for listening.
Jessica
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Jessica- sounds like your mom has had some additional checks on her abdomen recently. She can also wait and see if it happens again too. Your mom sounds like she keeps on top of things. I hope it is nothing. And yes, dryness goes with the aromasin too.
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thanks so much Jazzygirl! She definitely keeps on top of things and isn’t one to ignore anything if she is truly concerned. About an hour ago we were talking and she said that she’s feeling much better than she did this morning because she was actually able to eat today and didn’t have diarrhea, and she told me that she’s not concerned about the discharge incident yesterday being anything cancer or recurrence related. She said she just found it weird that she’s always dry and then all of a sudden she had a clump of that with a touch of pink. She is definitely going to mention it to her doctors regardless and keep an eye on it, but so far today she’s had nothing. No discharge and completely dry. The dryness and sore joints is what she complains about most being on Exemestane.Thank you so much
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Hi - I have been on aromasin since late December. So far all is fine. I am 60 and started having a few hot flashes. Night sweats started again though. But not complaining, they just are interesting after being post menopausal for several years.
My oncologist is waiting for my strength to return before we add more aggressive treatment, if that is ever agreed to by me and thought worth the attempt w/o losing renewed quality of life.
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Karen, I totally know what you mean about having more side effects than most people! I finished treatment in Sept 2015, and it's been one medical problem after another! My bones and other joint problems are the biggest issues. I don't think there's a single part of my body that hasn't been adversely effected by treatment! I do a lot of embroidery and other hand sewing projects and thought the wrist pain was related to that. My wrist pain also travels up my arm. The ortho doc said there's a nerve that runs along the very spot I'm having pain. We'll get through this no matter how much it sucks. The only other option is risking death, and I'm not willing to take that chance, but I totally get why some people stop these meds altogether.
Jazzy and others - I was on Arimidex previously and had horrible pain from my back to my feet. My feet were the worst. That resolved once I started Aromasin, but my wrist immediately became swollen and painful. Basically, I'm having to choose between which body part I want to be functional. I'm going with my hands, so I'm going to go back on Arimidex. I can always use a cane. What a horrible choice to have to make! I have to be on these meds for 10 years. I've been on them about 2 1/2 years. It's daunting. How can one small pill completely wreck everthing?!
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Catlady- the quality of life on these drugs is not that great, but am with you that things got better for me on aromosin. My feet are much better, still not perfect and also have issues with plantars fasciitis. I have my feet worked on by someone about once every month to six weeks, most recently with my massage therapist this weekend. It really helps if you have access to someone to do reflexology or foot massage, even for 30 minutes. This treatment is important to finish, but these pills really can ruin your quality of life (and it is hard to make others understand this too.....)
I counted out how many pills I have left in the current bottle and it will take me to the end of the month. My MO CNP said to not worry about finishing on the day, but sort of thinking I may let this bottle be it? It would have me done three weeks early from my original start date. I may be going to a conference in Vegas for a few days with my work now in early March and just thinking it would be great to go off the pills (easier time walking). So I will think about it and decide later this month if I have had enough.
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Jazzygirl - I'm not a doctor, and I'm not giving mediical advice, but in my opinion, if you've been on them the for however many years you were supposed to, I doubt that stopping a few weeks early will be a big deal. I understand your concern though. When I was switching from Arimidex to Aromasin, they had me stop them for 2 weeks before starting the new drug. I was pretty scared about it, but they said it's not risky to do that. I might be misunderstanding what you said. I'm good at that!
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Catlady- yes, I hear you on this and think it is just a personal decision for me at this point. I took a week vacation the first year I was on the AIs (anastrozole then) for three weeks to adjust, and the MO said the same thing. Taking breaks periodically does not hurt things as the drug is cumulative over the long term.
I talked to a BCO sister who said I just should decide if I was at peace with the decision to finish this bottle in Feb and end it 3 weeks early. Would I feel okay about that if it came back and wonder if I should have done it to 3/22? I think if I didn't finished a year or two earlier and opted out of the recommended five years, then I would, but not three weeks. And yes, I know there are people here who don't finish the recommended 5 or 10 years, but I told myself that would NOT be me. So I will decide when I get to the end of this bottle if I am done. My birthday is a few days after the actual anniversary of starting so I am definitely stopping before my b-day!
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Jazzygirl, I feel the same way about not completing the 5- 10 years on these meds. No matter how rough the side effects are, I've made the decision to complete the whole course. My grandmother died from breast cancer and I think I would sell my soul to Satan to avoid that (not really, but you get the idea
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Catlady- a couple ladies I know on these threads have the ILC and learned through them that the hormone suppression drugs are key for managing that type of cancer.
HapB- not that the post was addressed to me, but I was REALLY worried that I could not get through the five years on the AIs. The first six months had me really struggling to walk, I did not see that coming. When I saw my MO after doing anastrazole for 7 months and telling him I could not even consider 5 years on this stuff, he told me the goal is to find something I can tolerate. I also took a short vacation on them for three weeks in my first year, went back on and it was better. I did adjust through time, but think I have not had it as bad as many here. I was worried I was going to be disabled from the drugs in which case, I would have opted out. My MO worked with me to find a way through.
I hope you are doing okay?
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It is such a very personal decision whether or not to stay in the AIs We all experience them so differently. I think it is equally courageous for the women who choose to stop taking them in order to maintain QOL All are warriors fighting the battle in different ways.
I’m considering talking to my MO about taking a vacation from Aromasin in order to lose some weight and (hopefully) get my hair to start to regrow. I’m committed to stay on the AIs, too so would switch back to Femara when I restart. I did not have the weight gain (15 pounds this year!) on Femara.and I think the hair loss wasn’t as bad. It may be that the cumulative factor it the killer for my hair, though. Who knows?! I do find that Aromasin affects my appetite much like a steroid. I get something like “the munchies,” if you know what I mean. Can anyone relate? It’s not controllable for me. Grrrr. I have not tried the other AI Anastrole? but I’ve read those side effects are even worse. Thoughts and advice? Thank you!
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Shelly you have just given me "food for thought" - i have experienced episodes where I get symptoms similar to low blood sugar I think, - usually when I get it it is before lunch rather than the evening- where i get literally shaky and lightheaded feeling like I desperately need food, even though I may have had no serious gap between meals. The only other time in my life I ever experienced this was when I was on chemo. I used to get that after each chemo session. Goodness I had not thought of connecting these episodes with the exemestane at all, but it does make sense now I know about AI's steroid nature.
Great, another thing I can blame on the drugs rather than me!
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Shelley- I am with you on whole do it/don't finish it thing with these meds. I never realized how bc could really disable women, especially on the drugs. I felt like that was where I was headed the first six months after being repeatedly told by my medical team because my bc was early and small, I would be fine. Being crippled by medication is not my idea of fine either! I never saw the foot issues/struggling to walk thing coming......
I did take anastrozole the first 2.5 years and found it to be much harder to tolerate. That is the generic for Arimidex. My doctor switched me to aromosin half way through and find it is a bit easier on the joints and foot issues. I am not sure if it was the drug or just starting the drug or a combination that made the arimidex so hard, but suspect probably both.
I have not experienced the appetite thing on the aromosin, nor the hair loss (although I will be curious to see if my hair thickens off the drugs when I go off soon). But I did gain a lot of weight on the AIs when I started them the first year, and have had to work with an endocrinologist on some things to be able to loose weight. I lost 40 lbs when I got sick in 2012 and then gained back 30 within a year. Now I am back down 25 and going for another 15 to get to a better weight for the long term.
The last time I did my "vacation", I dropped 10 lbs the time I was off. Curious to see what happens on the weight front. I am not sure if the weight was fat or if I was retaining water.
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I took a break from Aromasin for 6 weeks, I has some surgery. I went back on it a couple of weeks ago and have been pissed off at the world ever since then. Has anyone found that Aromasin makes them more angry? I can't tell if it's the winter weather, snow and cold now turned to rain and more gloomy sky or if it's the medication. Everything makes me irritated.
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Suzy-Q,
You are NOT alone. Aromasin gave me major mood swings. I felt like I was PMSed. My MO prescribed Celexa; I've been on an even keel since. Hope you find a solution! ((Hugs))
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HapB,
I have been on Aromasin for three years now. Since I started Celexa, I have been OK. My side-effects overall have actually been decreasing. I used to have more frequent hot flashes and night sweats, but those are decreasing. Yes, there is a steroid component to Aromasin. But, please don't tell me that I will be suffering from roid-rage when Celexa has been managing that side effect.
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I have the food cravings and crazy empty stomach feeling. I have gained 10 lbs due to out of control snacking. Anastrozole was a beast though exemestane is tolerable.
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I got the go ahead to take a holiday from Aromasin for 30 days. During this time I plan to do the Whole30 diet and lose the 15 pds I have gained since I started it. I am hoping for a reprieve from my hair shed as well. After 30 days I plan to go back to letrozole. Even though I had hair loss, i did not experience the weight gain with it. Other SE were comparable. I truly think the steroid aspect to Aromasin is the problem for me. The weight gain is bothering me so much that its becoming a mental health issue. As I i told the MO nurse, “Fat and bald is no way to go through through life.” I’m pretry sure I can fix the fat part anyway
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Thank You everyone! I was on Celexa for a few months after I was diagnosed and when I was was going through radiation treatments. If my mental attitude doesn't improve in the next monthI will definitely ask my primary care physician to put me back on!
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HapB - I wasn't sure how to interpret your reply to me, but I'm sorry if my comment offended you. I've had the same side effects and I absolutely understand why people go off of these meds. I've considered it myself. It's a personal decision whether or not to take them. I never meant to impose my view on anyone else. I was just stating my own choice. I'm really sorry you're having all of these side effects!
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Oh ok, no problem. Despite all of the side effects, I'm going to stay on them. I'd rather deal with the side effects than have a recurrence. That terrifies me. It's pretty hellish though. I've recently starting taking taurine and I think it's helping the joint pain. A friend of mine's oncologist recommended it. Also, I finally found a cancer rehab doc and I'm going to be bringing up all of this stuff. I'm anxious to hear what she has to say. Depression has been a big struggle, but I have a great therapist who's helping me figure out how to cope with the chronic pain and the emotional distress that accompanies it. I'm lucky enough to not have to work. I don't think I could if I tried. I bought a cane. My husband helps me with some of the housework, but I mostly plan on one activity per day (like dusting the living room), and have found some hobbies that I can do while seated. I have a spine and foot specialist who are trying to help me out with the various joint disorders I now have.
It's been an awful thing to live with. My oncologist is useless and hasn't helped me one bit. I'm thinking of changing docs. The side effects took me by surprise. The only side effect he warned me about was hot flashes. He never mentioned the long list of other side effects. It's been incredibly discouraging.
I don't know if that answers your questions. If not, just ask me again. I'm sorry you're having these problems.
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Being disabled is not a choice and it most certainly is not a luxury.
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Suz=Q:
I also took a 6 week break from generic aromasin because of emergency surgery in Dec.., I was in the hospital for 22 days with an NG tube.
I started back on the generic aromasin 3 weeks ago and today I'm saying to myself., "why am I feeling so tired and down?"
The anger hasn't reared it's ugly head yet.
Thanks.
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hi all... starting Aromisin tomorrow. I’m considering reading all your posts to prepare, but more likely won’t go too deep, so I don’t freak out at the menu of possibilities
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Hello ladies!
I'm back from vacation and catching up and reading all your posts and nodding my head...I feel your pain!!!
I was feeling so crappy when we arrived in Florida, that I took myself off the Aromasin for two weeks. I forgot to call the MO nurse before we left and didn't want to call from Florida. FINALLY my bladder pain and vaginal and urethral dryness cleared up. I was also able to walk 2.5 miles every morning without pain...well, except for the blisters on my big toes!
After 2 weeks, I decided I should probably go back on the pills. And I'm back to where I was. I can barely walk if I've been sitting for any period of time. I wake up in the middle of the night with terrible muscle pain from the neck down, but mostly in my legs. I'm losing hair like crazy. I'm not sleeping more than 5 hours a night. I'm cranky and I'm hungry all the time. My eyes are so dry they burn constantly. I use a gel eye drop at night. So far so good in the nether regions though!
On top of that I've been having pain in my breast that had the cancer...started as sharp, shooting pains 2 weeks ago and now is kind of a dull ache all the time and increases depending on what position I'm in. I saw my MOs nurse practitioner today who ordered a bilateral mammogram because I was due and also ultrasound. They found nothing but small benign cysts and scar tissue. So, I've come to the conclusion that it's the damned Aromasin making me hurt all over.
I am going to try and hold out until my appointment with my MO April 17....try, is the key word. But honestly? I'm ready to chuck the AIs altogether. Quality of life is so important. My Predict came out with a 1% increase in survival at 5 years and 2% at 10 years. For that I am going to be in pain and miserable???? I'm 66 years old. I would like to enjoy the years I have left. Lack of sleep and pain are no way to live.
I really applaud those of you who are determined to battle it out and continue taking the meds. I'm a wimp. I'm willing to take my chances.
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Good morning ladies- I took my last pill today. The five years on this stuff is now coming to an end. As I read Nancy's posts, I am going to be watching now to see how things improve for me. My feet have always been the biggest issue for me on the AIs. More to follow with time.
I am not going to be on BCO as often going forward but will pop in to share any updates for others who may be coming off the drug soon.
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Nancy, you're not a whimp! Please don't beat yourself up about this.
If I had been diagnosed at Stage IA, and I had your side-effects, I'm not sure I'd stick with Aromasin either. Alas, I was diagnosed at Stage III, and 95% of my cancer sample tested positive for ER/PR receptors. So, I'll take it. But, my side effects are nowhere near as severe as yours. ((Hugs)) Good to hear that you felt better in Florida!
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I am having so much trouble w being able to eat - I want to then after one bite have to force myself and it is torturous.
Trouble is deciding is it the aromasin or the liver lesions which are pretty large.
Do others have trouble w anorexia-like symptoms? And I don't mean vomiting, just unable to eat or enjoy food.
Thanks.
Diane
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Congratulations to JazzyGirl!
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