FEMARA
Comments
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Thank you for your post, Susan. I hear you when you say: "I know I should not complain. I am above dirt". I tell myself that often, but ya know, sometimes being above dirt is not enough. I want to feel good again!
I see my onc/surgeon next week for 6 month follow-up and am going to ask if there is a test of some sort to determine estrogen levels. Anyone else asked that question? Seems like there should be such a test and maybe if my level is low, low, low, I could take a break from these little nasty pills. Or cut my dose or something! Certainly can't hurt to ask, right?!
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SissyK, yes, do discuss it with your doc. Mine grilled me every time on the SEs of the femara etc. I finally realized it was to make sure I was actually taking it. Apparently this is a drug with horrible patient compliance, and patients are usually too scared to tell their docs they quit. It is much better to be upfront about the problems you are having, because the doc might be able to help.
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Momine - you are absolutely right. The patient compliance on the AIs is dismal. A huge number of patients just stop taking the meds without ever disussing it with their doctors.
Before I went off Femara, I had been enrolled in a Clinical Trial at Kaiser to see if a daily text or email would help with me "remembering" to take my Arimidex. As it turns out, I was in the control group that did not get texts, yet I took those pills faithfully every day.
After my two month break from Arimidex (on my MOs orders due to SEs) I switched to Femara, which I also took faithfully every day.
Sadly, the SEs came back so quickly, she also took me off Femara, and said I didn't need to try Aromasin or Tamoxifen.
She said that I had done everything she asked me to, and that I was just one of those patients for whom the benefits did not outweigh the (life-threatening) SEs. She had told me that in the beginning, which is why I tried so hard to be compliant.
Keep in mind, though, that even though I was 100% ER+, my multi-focal IDC and DCIS tumors were small, caught early, and I did not have chemo or rads.
I still urge all women to give the AIs a try. We are fortunate to even have these drugs available to us. Many women have NO SEs, or very minimal ones, that can be mitigated through several different types of options.
Don't give up!!! Really give it your best shot!!!
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Agree with you 100% re being upfront and honest with docs! They can't help us if we aren't. At last appt, doc did comment that I would be surprised at the number of his patients who stopped with the meds but lied to him about it. I assured him that wouldn't include me.
When I saw his PA in May when my SE's were horrible, she wanted me to take an antidepressant. Sorry, I can't remember which one, but she insisted that they'd had great results with patients taking it. I detest taking meds in general and don't want to take one drug, with its own set of questionable SE's to combat femara's. I am probably a little depressed, but don't feel I'm to the point of needing meds for it. I opted for large doses of fish oil with vitamin D, and turmeric supplements for their anti-inflammatory properties in an effort to help with the joint pain. They have helped. That was the only alternative they had for me. It was basically "You need femara, take it" , but said in a kind manner!
I'll report on his response to question about estrogen level testing.
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yes, you can test quite easily in fact for estrogen levels - it can be broken down into free estrogen, estradiol (the usual culprit in breast cancer of the 3 estrogens). A simple blood draw should do it.
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she is right. yet when i saw my estradiol levels, i had much less than a full-grown man, like 1%.
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As a Stage IV person, stopping Femara isn't really a choice if I want to remain stable. So I would echo what was said above - be honest with your doctor. I asked mine if I could switch to another AI because of SEs. He said that since I'm so stable on Femara for now, he doesn't want to switch. Then we got into why exactly I wanted to switch (what SEs are the worst) and he put me on a stronger arthritis medication (that doesn't trash my tummy!) and I'm tolerating the SEs much better. So - be honest with the doc and ask for help. And keep asking. And keep taking your pills!
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Hello everyone,
I have not posted since April and wanted to pop in!
Thanks for the info on calcium as I am taking this as well & didn't know if taken at night it helps with cramps. Should I take it at dinner time which is normally 7pm for me or take just before bedtime?2nd question; When is our true anniversary date? A year after breast surgery, a year after all treatments are stopped or a year from first diagnosis? Or a year after the follow up mammo that shows no cancer? I know silly question but I just am not sure?
I am walking in two weeks for strides for life, very excited
my first one!Tomorrow mom & I are volunteering in support of reach for recovery and will help assemble pillows & totes!
.Will post more later.
{{{{Hugs to All you Pink ladies and gents}}}}
Furfriend2
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Furfriend, I take calcium after breakfast and around 10 pm each night. That nighttime dose has made a world of difference in mitigating and even eliminating foot and calf cramps. l
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Honey,
Thank you for the quick response. I am delighted to hear taking at night should improve the cramping.
How has your journey been?
Furfriend20 -
fur, I won't kid you last year was a trying one, both physically and emotionally, and I got through it rather well thanks to the support especially from my DH. Other than a blood clot in my left leg caused by my Taxol and my nails lifting, I did really well physically compared to many of the ladies who have to be hospitalized because of their treatments or complications caused by surgery. My surgery left me with some nerve damage, and I often have to sleep in a recliner to be able to stay asleep through the night. I can no longer sleep on my surgery side, and am really uncomfortable lying on the opposite side too. My BS says that is caused by the removal of 22 lymph nodes. I chose to get no reconstruction because I simply did not want to undergo lots of surgery and maybe face complications. I still have trouble viewing myself in a mirror. I am eating more healthily and exercising to break a sweat about 6 days per week. I do not dwell on what I have endured and just try to live a normal life. My MO assured me that taking that letrozole was the most important aspect of my treatment now. I am just grateful for the drugs that are now available to us, and I am really grateful for Breast Cancer.org. What a wonderful website filled with support and information. I informother women about it who do not have cancer so they can get information to help them.
I notice you have not shared your medical profile. I really gained a lot of comfort from reading the profiles of other women, and I have certainly learned a lot from them. There are some really well-informed women here who eagerly share their knowledge with us.
I wish you well and am happy that you have joined us on this thread.
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Hey HoneyB,
I removed my medical profile just to mixed things up a bit. I was on BCO much of the time last years into the new year.
I had stage II with lymph node involvement as well and like you no reconstruction ( afraid of complications ) I deal with continued irritating mild pain and numbness on my right side and back. My treatments ended in April this year.
Just went in for an MRI because now my forearm is bothering me and I am uncomfortable. Possible carpel tunnel and/or nerve damage as well? Neurologist wants me to do an EMG the end of this month & I am not looking forward
Could you tell me when we can say we reached our one year anniversary cancer free? Silly I know but I really am not sure. I am walking in two weeks to support AMC and Breast Cancer. Excited.
Good to hear from you Bear and I hope you are enjoying your day
Furfriend
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Hi Furfriend, when we celebrate our cancerversaries varies from person to person........for myself I count mine from the day of dx. You decide what day is the most significant for you and go from there.
Love n hugs. Chrissy
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I celebrate everything.... the date of my initial dx, the date of my BMX, the date of my Exchange.... at least it's good for a card from DH!!!
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Hi Fur, I don't know when the anniversary is to be observed either. Perhaps it is when we are given a clean bill of health following our original diagnosis. All I know is that I am happy to have all the treatments behind me. Now if the post mastectomy pain would go away, I would really be thrilled.
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Sisters. Today I bought my last bottle of Letrozole! I almost cried, but I told the pharmacy tech and she hugged me. Here it is
And here am I
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Eph3 12,
HOORAY!!! Fantastic!!! Too bad there isn't a bell to ring like there is when one finishes chemo..
Vickie
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I never got to ring a bell because I didn't have to do chemo/rads. I also think we should have a bell for that last refill and for the last surgery.
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Yay Joni!!!!! You made it!! Woohoo!!!!! Doing the happy dance for you! Just one more month and you are done, done, done!!! Then you can breathe a great big sigh of relief, sit back and watch those SE disappear!
Love n hugs. Chrissy
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Joni - happy dance for you!! For me just 4 years to go....
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Thanks all, I am super, super excited!! Tammy_M43, it doesn't seem like it, but the time does go by. Hang in there!
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Congrats, Eph3-12. You are looking snazzy. Love your hair. I have many months and years to go. Share with us how much better you feel when the drug leaves your system.
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Eph3 12 - Way to go!! Congrats - you deserve to be happy, healthy and cancer free. Dance party for you - yay!!!! You look gorgeous. Hugs, Mar
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I'm only in year 1.5 - I'm telling myself I'll have to do 10 years (which I would happily do if they find it would be helpful) so that if I find I only have to do 5 I'll be pleasantly thrilled. I am already weary of joint pain - but I keep telling myself it's better than lots of other things. Congrats to you Eph3-12.
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Kkuziel
I have been on Letrozole (generic for Femara) since Nov. 2011. I have found that the SEs come and go. Have had times where joints (especially hands) would ache, (even had couple of trigger fingers in each hand). A couple of months ago it was bad but now all is good again. Hope you too will have the respite from the pain..
Vickie
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wonderful! I celebrate with you! This is a HUGE accomplishment and you should be proud.
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kkuziel, why 10 years? I thought the standard of care for AI's is 5 years.
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I have been on Femara then letrozole when it became available in generic form since Feb 2010 and at this time Dr says I will be on it forever. Originally was told for 5 yrs but he said that newer research shows that it should be forever with IBC and in some other cases. Remember there is no 'One Size Fits All' when it comes to BC with all the different variables and with our unique/individual body and how it reacts. What worked great for me might not for someone else and visa/versa. For me, A/C was easy and Taxol was nasty but it is the,reverse for some.
I have not had any SEs from it. Other than it may have hurried my osteopenia progressing to osteoporosis but may not have. I was osteopenia LONG before IBC TXs and a huge family history of it on both sides of family so would have eventually progressed anyway.
Anniversary date - that's personal/up to you. I use my DX date as it makes sense (to me anyway) to count from when the War began, not the individual battles; end of neoadnuvant chemo, UMX, end of adjuvant chemo, end of rads or anything that comes in the future IF it does. Do what you feel comfortable doing - celebrate ALL if that's for you. There is no 'right' or 'wrong'.
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Love the bell idea for those of you who aren't stage IV! For us Stage IV ladies, I'd suggest we ring a bell when we renew our Femara after a year on it because it means we're still stable and it's still working for us. What do you reckon ladies?
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