Life on aromasin
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Went to Rheumatologist since it caused my RA to flare up badly. I too had Tendonitis in one hand which got a cortisone shot for. Helped greatly. One year later, feels like it's coming back. GRRRR Got better to some extent once off the Letrozole although not fully. Exemestane doesn't seem to be causing it since have tested it by going off for a few weeks and no change.
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I took tamoxifen for 1.5 years and had little problem with it except for hot flashes. I felt it would be ok to be on an AI and since the chemo ended my cycles for over a year, they said I was past the 'change' and put me on Anastrozole. I had a supportive, fun group of ladies in my breast cancer support group and they were very happy with Anastrozole, and I tried to be happy on it too but I became more and more anxious and had trouble leaving the house just to go to church or see friends. The anxiety was preventing me from carrying out my tasks at times. I slept a Lot more, maybe 10 hours a night. The joint pain was annoying but not too bad, Finally, after leaving many voice mails at the onc's nurse line, I just told them "I am going back on Tamoxifen if you cant find me another drug." The chemo nurse told me to go on a different AI which was Letrozole (generic Femara) which was Outragously expensive. I did not have to pay anything for it, the insurance paid it all, but it was over $600 a month if I had to pay myself. Also the joint pain was just appalling. There were times I had to struggle to stand from getting up from a chair, and at the time I was not yet 50 years old. I developed osteopenia of the spine. The pain in my fingers and joints was shocking...sometimes my fingers would lock, or my leg would just fold. Luckily, I did not fall. I developed liver damage from it also, and it took months to get that diagnosed. I could not even wear loose elastic waste pants, it hurt my liver so much to have the pressure around my waste. I really tried to make it work, but the crushing sadness which replaced the anxiety from the other drug, was making my life so hard and miserable. I was always tired and felt sick, several times a day I would have to find a private place to cry to let off the steam. Over Christmas, my onc said take a medication vacation, and after just four days I began to feel better. I felt like myself over the holiday. The liver pain improved dramatically and I could wear pants again after awhile. Now I am on Aromasin (generic exemestane is actually what I take) and I need to stay on the AI for at least another year and a half before I can switch back to Tamoxifen. I also take Zolodronic acid infusion every six months for three years. The last one will be near April. The first three doses gave me high fever and flu like symptoms for a few weeks, also my toe nails would fall out. I had terrible anxiety because at first, no one told me to take calcium supplements. I found that out from reading the Novartis web site. Zolodronic acid freezes the calcium in your bones so your body cannot regulate the blood levels as it normally would. Also you need to drink a gallon of water a day for at least six weeks after this transfusion. It can kill your kidneys. The drug binds to your bones and releases over time for three months. My toe nails fell out three times. On the fourth dose, I did not get a fever and my toe nails did not fall out, but I got allergy like reactions in my lips, mouth, hands and feet. If I got too much friction or pressure or hot tea or water on my lips, hands, feet etc they would swell up and literally blister. I was using scissors to cut open a package and the friction on my palm made a blister that took 10 days to heal, it made an angry red scab. This went on for three months. I was very concerned they gave me the wrong medication. I even switched infusion labs. The next dose, I also did not have a fever and my toe nails did not fall out. I am not sure if the change in side effects was from taking it with a different AI or my body just has adapted to the Zolodronic acid by now. My large toe nails will probably need surgery to correct the deformed edges that cut into my toes. but they generally are not giving me as much trouble and they appear to be basically normal, instead of like a turtle beak which is what they looked like growing out the first time! I am glad to have a place to tell what has happened to me. At my support group the nurse and social worker do not want people to share unpleasant facts about treatment and its especially difficult for me to have to not tell the truth EVEN THERE. Thank goodness some other people have also had trouble with AI side effects and they heard the few things I shared and were happy to be able to talk about their joint pain, sleep problems and tingling hands and feet. I am eating Natural Egg Membrane which has been studied by the NIH and found to help with arthritis. Its available in capsules if you are squeamish about eating the membrane out of a raw egg shell. The old grannie way is to wash the empty egg shell, dry the shells and pulverize them in the blender then mix with orange juice and drink. My hubby bought the capsules. We have both felt improvement but with raw egg products there is always the salmonella risk so be advised. I just want to feel better and be happy again. I thought it would be much better once chemo was over and of course I feel better than when I was on chemo but I do not feel normal or like myself. I cry and worry too much. My hands and feet swell. I was a much more active/proactive person before this. Also, I take two baby asprin two times a day because the onc said its a very strong prevention against a new tumor and also helps fight any stray cells that might be out there. Its my private joke to myself that I am taking baby asprin because i feel like such a baby
I am also just starting in a study to see how different kinds of exercise may help improve fitness after chemo and I am looking forward to that. I went to the shelter and got a new dog a few weeks ago and getting out to walk her and care for her is a big bonus too. I find on exemestane, even a little sugar is too much and I am challenging myself to go sugar free. I already eat low sugar, and I have not had artificial sweeteners in my life for about 15 years. Changing to a new AI has not been perfect, I have trouble sleeping now, and I still wake up with anxiety and sadness but its manageable, and I was able to get in gear enough to get my sweet little dog friend. Luckily my husband is a programmer and usually hooked up to his computer so he only experiences small doses of my moods. My children are in college now and pretty self directed but I am very grateful for the one who is living at home and going to the state school. Just the few things we do together really help me feel better and remind me there is a lot of life left to live and beating the odds, keeping up the meds, to make it out the other side is really really worth it. 8 years ago, I remember holding my friend in my arms, when she thought she had a stroke, but it was a brain tumor of metastatic breast cancer, she had quit taking her tamoxifen. No one will ever know if that would have happened any way, but she had a 12 year old son who came to live with me for a week, and it was a terrible situation that the only relative who could care for him after that was his brother who was in jail for drugs. I dont know what happened, my friend got very anxious someone would take her son and became super secretive and she would not let me be involved after she got home from the hospital. One ray of light was her daughter moved back home to help also. I just want to do what I can to try and survive this, and even annoying side effects can be tolerated a few more years. God be with you all and I wish you all the best,0 -
k8eekatt,
Thank you for telling your story. You have been through a lot. It's remarkable you have managed to stay on an AI with all the SE you have suffered. I hope exemestane works better for you than the others.
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k8 - please find a new support group! If you can't share there, where?! I belong to a wonderful group, and we share the good, the bad, the ugly. It is what helps keep all of us sane! You deserve a safe place to do this. Hugs!
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k8ee, Thank You for such a heart-felt writing. It's obvious you've poured your soul into it. I'm sorry the support group hasn't helped in this way. Personally, the Ladies I've met on here locally are WONDERFUL. The get-togethers we have are where we can get all these feelings out, talk about what others don't want to hear....IMHO they ARE my support group!!
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Galsal, I agree, my support group is and has been from the beginning, online on this board and one on weight watchers! Both have given me pals and answered questions and concerns
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Hahaha, cami!
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Love the Office Camel! What a hoot!
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Camille, love the hump day camel!
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k8ee, just want you to know that here, sharing ANYTHING is safe. We support one another no matter what and no one ever puts you down for how you are feeling. Several of the wonderful women here have suffered low to no side effects but they NEVER put those of us who do down in any way. Huge hugs and hopeful the exemestane will be much better for you. I am too terrified to quit too even though I am not tolerating it well, so I totally get it. Sometimes you just got to scream!
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ahhhh, Camille, too cute!
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Happy Valentine's Day Romies!
Camille, too cute...saw it on the STFU thread too. You are too sweet.
Proud, how are you doing with coming off your AI? Any se's?
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well, coming off the AL has been interesting. I had asked my doc if I should go slow or cold turkey and she said cold turkey.
not a wise idea, I was very anxious and nervous for the first week, couple folks said to take something for the anxiety but I did not, but now after almost 2 weeks, I feel fine. So when you end the med, do it slow!
it is still a little scary not to have the security blanket of the PILL after all this time
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Cami, so cute!
Now that we have a Valentine's doggie, how about a kitteh!
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Camille and Yorkiemom how sweet! I want to hug them both!
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Awww, a beautiful pupster and now a kitteh...love them both!
Proud, glad you are doing better. As for the "security blanket" of the pill, I totally get it. If we are not actively engaged in some type of "treatment" we worry it will return. Rest easy though. According to what I read, for each year you take an Aromatase Inhibitor or Tamoxifen, you get another year of protection according to the literature. So, you are good for another 5 years at least and by that time, if no recurrence, your odds are better that it won't happen I think so it's all good girl!
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Thanks April! since I am 64, I just want to have some retirement years~~~with out pain or reoccurance
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Good Morning
Proud I'm glad u'r feeling better, I cheat a lot lately, I (on my own) go for a month or 2 without taking it. But I go just cold turkey--so much damage has already been done I don't notice a lot of difference but a little so I take the little.
I hope everyone has a comfortable weekend, and as far as the weather goes--who knows at this point we get what we get I guess.
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Hi ladies,
Thank you for sharing your stories. I started taking the pill yesterday morning and I felt tired all day. Is that normal? I took it in the morning and now I am curious what time of day you take it.
I have had a rough road as we all have and just lost a TE due to infection. I wanted to wait two more weeks to start- last chemo was 1/2/2014- but was scared to.
I am already in PT for my back. Never had any back problems until chemo, now they say I have degenerative disc disease. Hopefully, that will keep me ahead of any pain.
Thanks in advance for your amswers!
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School, to me it seems some of my pals who never took any meds, end up on many after going thru all this. Sorry for the disk disease, hope you can find some relief
I am just ending aromasin, I am tired and not sure yet (although hopeful) that my tired feeling passes. For me it was gradual
but hey, it is 6 years and I am here!
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School, you have been through a lot--the chemo, the infection. These things in and of themselves are enough to cause fatigue. It is probably too soon to blame the fatigue on Aromasin. And it is not unusual to develop Degenerative disc disease as we age. Be kind to yourself. Most women on Aromasin never develop SEs. My MO says that it is the gentlest of the AIs. Do you keep a health journal? You can see if a pattern emerges and decide if a symptom is from Aromasin or not.
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Just wondering if any of you taking Aromasin developed high blood pressure! For some reason, now, after starting the Aromasin on January 3, I now have high blood pressure! Don't have any symptoms of high blood pressure, just caught it at each Dr. visit because they take it each time! Now they want me to see my GP to get on Blood pressure meds, but I'm tired of adding pills to the regimen!!
Anyone else experience this and did it lower over time as your body adjusted to the Aromasin?
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Nettie, I hope this helps.
http://community.breastcancer.org/forum/78/topic/815984?page=1#post_3833961
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School, I started Aromasin after being on Arimidex for 14 months. I started taking it at night, but after a couple of days forgot to take it (memory issues lol) so took it the next morning. I took it for around 3 mornings after that, and I was so tired during the day it was almost like being on chemo again. I switched back to night and the tiredness went away.
I take it in the morning now and have done for the past 12 months or so, and the tiredness isn't an issue like it was then. So - at least for me - it did cause tiredness, but after a while my body got used to it.
Hope this helps!
Trish
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Hi School---I really think for as many people on this tiny little pill there are that many stories and a lot are fine, but then again a lot are crazy too---It's hard to say just what's causing what--U'r Body has been thru so much and that alone needs rest so all u can do is pay attention daily and I think we all take it different times. I really hope u have very few or none side effects from this pill.
See I was nice I didn't say this pill of horror and anything negative, like I always do.
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thanks for you restraint cami 😄. Thank you everyone for sharing your experiences with me. I was hospitalized two weeks ago and when I came out my mind seemed so clear. Two days on this and I am so wiped. I will switch to the evening though because when I return to work I need to not be so exhausted. I'm 45 and I feel so old!!
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Oh sorry School u read that part, usually no one pays attention to all that I say.
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