I just have a prescription for Letrozole 2.5mg, Anyone has used ??

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Hello everybody,

I'm new in the board, I have been reading so many of the post and ever since I feel a lot better, I do not feel alone in this matter, I'm a very blessed person, because I have so much love ones around me who are giving me courage all the time, but they do not know all you know, so now I feel complete ...

I had Ovarian Cancer III, I was diagnose on December 2008, had surgery and 6 rounds of chemo, on July 2010 I had recurrence and went to my second round of chemo, ending it on November 2010, I have been on avastin trial, starting with my 6 chemos, and continued until last month, they stopped the trial because my CA-125 is 200, my CT scan is clean, and I do not have symptoms, but my doctor is almost sure that the tumor is growing somewhere and it will show it soon, in the meanwhile my doctor has prescribed to me Letrozole 2.5mg, for 90 days, he said it will help to hold the tumor for a while, at least that is what I understood ...

Reading many of your post I realize I never really put much attention to the name of my chemos, I'm pretty sure I have been once in taxol/carboplatin, and last time taxol/carboplatin/avastin, I just asked to the onc/nurse to give me a copy of my file, I want to understand more, I do not feel sick, it is very disappointed for me the results of my CA-125, It is very soon, and I possible going to get treatment soon (according to my doctor), but I do see that to happen I have a lot of hope that is just numbers, I'm also reading a lot about natural options like juicing vegetables and fruits, I mean there is many ways to keep the fight, it is a lot of information, I really want to fight the best I can, I'm 40 years old, single and not kids, but I want to have a family, so I need to keep fighting for my life.

I will really appreciate any advice about this new therapy I will start as soon I buy them !!

Big hugs for everyone of you, God bless you all!!

Love,

Mercedes

Comments

  • MK_4Dani
    MK_4Dani Member Posts: 314
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    Femara: it is the brand
    Femara: it is the brand name of the drug. You are first one with OVCA (that I can recall) taking this...it is usually for breat cancer. I did a goggle search. A sad welcome to the board.
    Hugs,
    Mary
  • Mercedes20870
    Mercedes20870 Member Posts: 24
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    MK_4Dani said:

    Femara: it is the brand
    Femara: it is the brand name of the drug. You are first one with OVCA (that I can recall) taking this...it is usually for breat cancer. I did a goggle search. A sad welcome to the board.
    Hugs,
    Mary

    Hi Mary, thanks a lot for
    Hi Mary, thanks a lot for your answer, I also did some research myself and you are right, most of what I found was for Breast Cancer, but them I search like this : Letrozole in Ovarian Cancer and I found some studies for it ... I hope this work for me ...
    Take care yourself!
    Hugs,

    Mercedes
  • LaundryQueen
    LaundryQueen Member Posts: 676
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    Hi Mary, thanks a lot for
    Hi Mary, thanks a lot for your answer, I also did some research myself and you are right, most of what I found was for Breast Cancer, but them I search like this : Letrozole in Ovarian Cancer and I found some studies for it ... I hope this work for me ...
    Take care yourself!
    Hugs,

    Mercedes

    Chemo break
    There is research done in the UK that shows no survival benefit when women are treated based on their CA--125 alone. You are better off giving yourself a break and wait until you are symptomatic or your scan finds something worth treating.

    LQ
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
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    Chemo break
    There is research done in the UK that shows no survival benefit when women are treated based on their CA--125 alone. You are better off giving yourself a break and wait until you are symptomatic or your scan finds something worth treating.

    LQ

    I totally agree with having a chemo break
    I totally agree with having a chemo break. My oncologist said exactly the same thing to me. Studies carried out have show there to be no benefit to going back on chemo early and it is much more effective to wait as long as possible. The benefits are that the body as time to recover and the chemo will be more effective the wider the gaps in-between treatments.
    Tina
  • carolenk
    carolenk Member Posts: 907 Member
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    I totally agree with having a chemo break
    I totally agree with having a chemo break. My oncologist said exactly the same thing to me. Studies carried out have show there to be no benefit to going back on chemo early and it is much more effective to wait as long as possible. The benefits are that the body as time to recover and the chemo will be more effective the wider the gaps in-between treatments.
    Tina

    It makes sense to take a break
    Too bad we are so attached to our CA-125 numbers! In the research that LQ is talking about, the women were NOT told what their CA-125 level was--that contributed to their better quality of life in addition to the chemo break.

    In the study, some of the women were put back on chemo when their CA-125 got to 70. Others with high CA-125 levels were not put back on chemo until they were symptomatic (about 4-6 months after their number hit 70). At the end of the study, the women who were on a longer break had a better quality of life and no worse survival rate than the women who went into chemo sooner.

    If you know your number is rising, it is hard to no worry about it. But it makes sense to give the body as long a break as possible between chemo treatments. Too many women are dying from having their bone marrow trashed by chemo rather than dying from the cancer itself.

    Carolen
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
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    carolenk said:

    It makes sense to take a break
    Too bad we are so attached to our CA-125 numbers! In the research that LQ is talking about, the women were NOT told what their CA-125 level was--that contributed to their better quality of life in addition to the chemo break.

    In the study, some of the women were put back on chemo when their CA-125 got to 70. Others with high CA-125 levels were not put back on chemo until they were symptomatic (about 4-6 months after their number hit 70). At the end of the study, the women who were on a longer break had a better quality of life and no worse survival rate than the women who went into chemo sooner.

    If you know your number is rising, it is hard to no worry about it. But it makes sense to give the body as long a break as possible between chemo treatments. Too many women are dying from having their bone marrow trashed by chemo rather than dying from the cancer itself.

    Carolen

    Chemo break
    My gyn/onc talked about this study when I saw him a couple of weeks ago. He says the main purpose of the CA-125 is to make us nervous.
  • Mercedes20870
    Mercedes20870 Member Posts: 24
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    Chemo break
    There is research done in the UK that shows no survival benefit when women are treated based on their CA--125 alone. You are better off giving yourself a break and wait until you are symptomatic or your scan finds something worth treating.

    LQ

    Hello LQ,
    Thanks to reply

    Hello LQ,

    Thanks to reply to me, well I'm happy to get a break on my imminent upcoming chemo, I'm treating very well my body, eating the healthy I can, trying my best to reinforce my immune system, but honestly it is sad to do it just to feel sick with the treatment, but still there is a time to enjoy ...

    So do you think I should not get the pills?, they are coming in couple weeks anyways, I do not have health insurance, I called walgreens to ask for the price, they told me Letrozole 2.5mg 30 pills = $534.99 ! so expensive, but i told to my Social Worker, she is amazing, and I knew she could help me, so she find out about RX Outreach and they sell them : 90 pills = $30.00 !! it is a huge difference, and shocking at the same, I just think in other patients who doesn't have this information !!

    I hope everything is going good for you!

    Big hugs!

    Mercedes
  • Mercedes20870
    Mercedes20870 Member Posts: 24
    Options

    I totally agree with having a chemo break
    I totally agree with having a chemo break. My oncologist said exactly the same thing to me. Studies carried out have show there to be no benefit to going back on chemo early and it is much more effective to wait as long as possible. The benefits are that the body as time to recover and the chemo will be more effective the wider the gaps in-between treatments.
    Tina

    Hi Tina,
    It does make sense

    Hi Tina,

    It does make sense to take a break from chemo, I just wish is a very long time ... my doctor did not say nothing about a break he just said I have not been in this pill therapy and it could help me to hold the tumor to show up, he said it have a mild side effects, I guess he just want me to think I'm getting some treatment, I honestly prefer do not take them ...

    I wish the best for you, yo seems to me very strong!!

    Hugs,

    Mercedes
  • Mercedes20870
    Mercedes20870 Member Posts: 24
    Options
    carolenk said:

    It makes sense to take a break
    Too bad we are so attached to our CA-125 numbers! In the research that LQ is talking about, the women were NOT told what their CA-125 level was--that contributed to their better quality of life in addition to the chemo break.

    In the study, some of the women were put back on chemo when their CA-125 got to 70. Others with high CA-125 levels were not put back on chemo until they were symptomatic (about 4-6 months after their number hit 70). At the end of the study, the women who were on a longer break had a better quality of life and no worse survival rate than the women who went into chemo sooner.

    If you know your number is rising, it is hard to no worry about it. But it makes sense to give the body as long a break as possible between chemo treatments. Too many women are dying from having their bone marrow trashed by chemo rather than dying from the cancer itself.

    Carolen

    Hi Carolen,
    You are right,

    Hi Carolen,

    You are right, Ever since I knew my CA-125 was getting up, I felt so down, and I'm a happy person most of the time, starting in march, with 9, then 23, then 36, then 123 and then 200, this progression was every three weeks, they took it when I was going to get Avastin, so it seems the Avastin did not work for me, I do not have symptoms, I think, but since I knew my number are 200 I do feel a little sick, I'm guessing could it be my mind, or Avastin side effects, in all the time I have been in Avastin the most I felt was headache or shortness to breathe, but now my stomach is upset ...

    We don't really know what happens inside of our body, and there is a lot of information, thousands of stories of people who cure themselves, I'm really planning to keep learning and I wish we all could be one of them and cure ourselves without that much drugs.

    Thank you so much for write to me, we all are doing the best we can, and that is the best part ...

    I hope you are doing good,

    Lots of hugs,

    Mercedes
  • Mercedes20870
    Mercedes20870 Member Posts: 24
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    Tethys41 said:

    Chemo break
    My gyn/onc talked about this study when I saw him a couple of weeks ago. He says the main purpose of the CA-125 is to make us nervous.

    Hi Tethys,
    He has a point,

    Hi Tethys,

    He has a point, the CA-125 really make me nervous, but day but day I'm trying do not loose my mind over it, anyways nobody really knows exactly what will happen tomorrow, doctor have a lot on their mind, but they know every person is different than other, but I really hope my high CA-125 numbers just give me nervous and not a future chemo!! :-)

    I hope you are doing good...

    Thanks for answer to me,

    Lots of hugs,

    Mercedes
  • pattysoo
    pattysoo Member Posts: 170
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    Femara
    I'm on Femara aka Letrozole and have been for nearly 10 months. The doctor I saw at MDA recommended this for maintenance for me saying that most low-grade tumors are hormone receptors. Letrozole blocks estrogen. I think it's responsible for some pretty annoying joint pain, but my numbers are staying down so far and I like that. Exercise and acupuncture help the joints.
  • Mercedes20870
    Mercedes20870 Member Posts: 24
    Options
    pattysoo said:

    Femara
    I'm on Femara aka Letrozole and have been for nearly 10 months. The doctor I saw at MDA recommended this for maintenance for me saying that most low-grade tumors are hormone receptors. Letrozole blocks estrogen. I think it's responsible for some pretty annoying joint pain, but my numbers are staying down so far and I like that. Exercise and acupuncture help the joints.

    Hi Patty,
    It is great to

    Hi Patty,

    It is great to know you are taking Letrozole, and it is working for you, it really make my hopes up!! I wish with all my heart will work for me as well! I'm glad you get to handle the pain of your joints, as you said it is better than get tumors back ...

    Thank you so much for tell me about your experience,

    Hugs,

    Mercedes
  • carolenk
    carolenk Member Posts: 907 Member
    Options
    Tethys41 said:

    Chemo break
    My gyn/onc talked about this study when I saw him a couple of weeks ago. He says the main purpose of the CA-125 is to make us nervous.

    LOL!
    I have to agree with Tethys' oncologist!

    Carolen
  • LaundryQueen
    LaundryQueen Member Posts: 676
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    Hi Patty,
    It is great to

    Hi Patty,

    It is great to know you are taking Letrozole, and it is working for you, it really make my hopes up!! I wish with all my heart will work for me as well! I'm glad you get to handle the pain of your joints, as you said it is better than get tumors back ...

    Thank you so much for tell me about your experience,

    Hugs,

    Mercedes

    Aromatase inhibitor drugs: What's the point?
    Let me clear up some of the confusion about Femara (aka Letrozole). This drug is an enzyme inhibitor. To be specific, it is an "aromatase inhibitor." Aromatase is an enzyme that converts androgens (typically thought of as "male hormones") to estrogen. It is given to keep the estrogen level low in those women who have estrogen positive receptors on their tumors. How would you know this if your doctor never tested your tumor for estrogen receptors? There is no way to know unless the pathology report said you had a "positive estrogen receptor tumor."

    It makes sense to me to take Femara ONLY if you have a high or high-normal testosterone and/or DHEA levels. How would you know if you had high androgen levels if the doctor doesn't check your blood? Some of the signs of high androgens are acne, dark facial hair and increased libido. Also, some women have androgenetic hair loss (hereditary hair loss) from high androgen levels--so thinning of the hair can also be a sign of elevated testosterone (it is actually the metabolite of testosterone that affects the hair follicle).

    Women with polycystic ovarian syndrome often have high testosterone levels that originate from their cystic ovaries.

    Where do androgens come from? Testosterone is an androgen that is made in the ovaries. DHEA is made in the adrenal glands and it is a precursor to both estrogen and androgens.

    If a person has a lot of belly fat, the belly fat produces the aromatase enzyme. So even low levels of androgens would be more likely to be converted to estrogen.

    I would venture to say that it does make sense to give an drug like Femara or Arimadex to a woman who has been diagnosed with positive estrogen receptor breast or even ovarian cancer IF she has not been castrated as most of us OVCA survivors have been. Does it make sense to take a drug designed to lower androgen levels and then NEVER check the androgen level to see if it is going to be worth the risk of the drug? Not in my opinion.

    Of course, the doctor might be hoping for a placebo effect. These drugs are pretty expensive for a placebo effect and come with too many risks of side effects for a placebo effect also. Again, this is just my opinion.

    All this being said, there is a way that a women can ACQUIRE an increased androgen level: from having unprotected sex with a man. I am not kidding. Semen & prostatic fluids carry androgens and the male hormones are easily absorbed vaginally. I wouldn't have believed it unless I had seen the high testosterone level on a blood test on a 76-year old woman.

    So if you are sexually active, maybe it does make sense to take an aromatase inhibitor--or use condoms--IF you know your tumor tested positive for estrogen receptor AND your blood work shows a high testosterone level.
  • Mercedes20870
    Mercedes20870 Member Posts: 24
    Options

    Aromatase inhibitor drugs: What's the point?
    Let me clear up some of the confusion about Femara (aka Letrozole). This drug is an enzyme inhibitor. To be specific, it is an "aromatase inhibitor." Aromatase is an enzyme that converts androgens (typically thought of as "male hormones") to estrogen. It is given to keep the estrogen level low in those women who have estrogen positive receptors on their tumors. How would you know this if your doctor never tested your tumor for estrogen receptors? There is no way to know unless the pathology report said you had a "positive estrogen receptor tumor."

    It makes sense to me to take Femara ONLY if you have a high or high-normal testosterone and/or DHEA levels. How would you know if you had high androgen levels if the doctor doesn't check your blood? Some of the signs of high androgens are acne, dark facial hair and increased libido. Also, some women have androgenetic hair loss (hereditary hair loss) from high androgen levels--so thinning of the hair can also be a sign of elevated testosterone (it is actually the metabolite of testosterone that affects the hair follicle).

    Women with polycystic ovarian syndrome often have high testosterone levels that originate from their cystic ovaries.

    Where do androgens come from? Testosterone is an androgen that is made in the ovaries. DHEA is made in the adrenal glands and it is a precursor to both estrogen and androgens.

    If a person has a lot of belly fat, the belly fat produces the aromatase enzyme. So even low levels of androgens would be more likely to be converted to estrogen.

    I would venture to say that it does make sense to give an drug like Femara or Arimadex to a woman who has been diagnosed with positive estrogen receptor breast or even ovarian cancer IF she has not been castrated as most of us OVCA survivors have been. Does it make sense to take a drug designed to lower androgen levels and then NEVER check the androgen level to see if it is going to be worth the risk of the drug? Not in my opinion.

    Of course, the doctor might be hoping for a placebo effect. These drugs are pretty expensive for a placebo effect and come with too many risks of side effects for a placebo effect also. Again, this is just my opinion.

    All this being said, there is a way that a women can ACQUIRE an increased androgen level: from having unprotected sex with a man. I am not kidding. Semen & prostatic fluids carry androgens and the male hormones are easily absorbed vaginally. I wouldn't have believed it unless I had seen the high testosterone level on a blood test on a 76-year old woman.

    So if you are sexually active, maybe it does make sense to take an aromatase inhibitor--or use condoms--IF you know your tumor tested positive for estrogen receptor AND your blood work shows a high testosterone level.

    Hi LQ,
    It is very

    Hi LQ,

    It is very interesting your explanation, honestly I don't know if my doctor knows if I am a positive estrogen receptor Ovarian Cancer, I never ask much, it is since I'm part of this network than I'm learning, I had a complete confidence to my doctor and medical team, but at this point I need to learn more, because my doctor told me it is chronic, and since 2009 the tumor grow back once a year, if it keep in that way my future it is not to promising, what I know is I have been part of studies since the beginning, I donate my tumor to the science, (I did not wanted anyway), and I have been in two studies, both for Avastin, but I just got it the second time, and according to my rising CA-125 it seems like did not worked...

    I wish I do not have to get more medicine if anyways I will get Chemo soon, my body it is been receiving a lot of medicine already, but I feel so good, I have a lot of hope but I like to be realistic, I have start yet to take the pills because they are in the way, I bought them in RX Outrage, so cheap, I can't believe the big difference on the price, I will take them, I know I will have my CA-125 test in a month so if the numbers still getting up I don't see the sense to keep taking the pills, but again, I feel very healthy.

    Our bodies are so perfect and Cancer is so traitor, and apparently no one really knows what is the real reason why some people make it and other no, but I do think this illness have been giving me so much good thing like love and compassion by my family and friends, and is teaching me to don't worry to much and be more faithful, this cancer won't take the best of me, so let's keep hoping ...

    Thank you so much for all the great explanation, and I will keep updating my treatment!

    God bless you,

    Mercedes
  • chrispy1018
    chrispy1018 Member Posts: 1
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    Hi LQ,
    It is very

    Hi LQ,

    It is very interesting your explanation, honestly I don't know if my doctor knows if I am a positive estrogen receptor Ovarian Cancer, I never ask much, it is since I'm part of this network than I'm learning, I had a complete confidence to my doctor and medical team, but at this point I need to learn more, because my doctor told me it is chronic, and since 2009 the tumor grow back once a year, if it keep in that way my future it is not to promising, what I know is I have been part of studies since the beginning, I donate my tumor to the science, (I did not wanted anyway), and I have been in two studies, both for Avastin, but I just got it the second time, and according to my rising CA-125 it seems like did not worked...

    I wish I do not have to get more medicine if anyways I will get Chemo soon, my body it is been receiving a lot of medicine already, but I feel so good, I have a lot of hope but I like to be realistic, I have start yet to take the pills because they are in the way, I bought them in RX Outrage, so cheap, I can't believe the big difference on the price, I will take them, I know I will have my CA-125 test in a month so if the numbers still getting up I don't see the sense to keep taking the pills, but again, I feel very healthy.

    Our bodies are so perfect and Cancer is so traitor, and apparently no one really knows what is the real reason why some people make it and other no, but I do think this illness have been giving me so much good thing like love and compassion by my family and friends, and is teaching me to don't worry to much and be more faithful, this cancer won't take the best of me, so let's keep hoping ...

    Thank you so much for all the great explanation, and I will keep updating my treatment!

    God bless you,

    Mercedes

    Femara
    Hi to Everyone!
    I, too, am new to this site but not to OC :(. I am starting Femara today and working towards clinical trials at Abramson Cancer Center in Philadelphia. I meet with my onc at BJC Hospital system in Missouri and they are very "up" on the treatments available. I was diagnosed in 2007 and have gone through all of the standard chemo's, radiation treatments, supplements,etc. When I finally moved from Illinois to Missouri, the docs at BJC actually reviewed the pathology and found that I was low grade, estrogen receptive epithelial cancer which explained why I was not finding success with the chemo. I am stage 111b and have never had even 8 months of remission as of yet. I finished radiation therapy this past May and they stopped the Avastin during this time. It was absolutely wonderful not to have the chemo but only had a reprieve of 35 days before the ca125 started climbing, and not slowly. So I will start the medication and keep working towards the clinical trials with my doc and see where it goes. P.S. I also started counseling for the "up and down" feelings :)