I thought this was interesting regarding Letrozole. Posting the paragraph of my greatest interest FIRST .... makes ya go hmmmmmmmmmm ... or me anyway.
“compliance” is how consistent the women were in taking the hormonal therapy; the women were given treatment packs every 6 months -- any woman who took at least 80% of the pills during each 6-month period and took no treatment breaks that were 7 days or longer was considered to be compliant with treatment.
article breastcancer.org/research-n...
Thanks for sharing the article. I wonder if this is mainly geared towards early stage breast cancer patients though? There is an emphasis on starting hormone therapy following surgery in a bid to prevent recurrence. But many of us have not had surgery and we have metastatic breast cancer. That was what I got from it.
Sophie x
I took it for 5 years after surgery, chemo & radiation. Three years after I stopped taking it, I was diagnosed with MBC. Can't help but think, maybe I should have taken for 10 years.
I was non-compliant as well. I thought I was well after I got that tumor out of my body and had radiation. The radiation made me so tired, the last thing I wanted was to take pills to make me sick. But yes, now looking back, maybe I should have listened and taken the arimindex, I did go pick it up at the pharmacy but then didn't take it. There is a reason everything looks small in the rear view mirror! onward through the fog sister/warrior! God's got our backs, amen! My hubby has had 3 heart attacks, 2 strokes, abdominal aneurysm and colon cancer and he is still kicking and able to walk and talk and is fine; so I am a firm believer in the belief that we do not leave this earth until God says it's time! God bless you and heal us all, in Jesus name, amen!
Well actually I was compliant. I was only required to take it for 5 years. Now, some are saying we should take it for ten years. Just saying, maybe I wouldn't have MBC, had I been required to take it for 10 years.
I realized that after I replied, I forgot we can edit on here DUH! Not having a good day, sorry!
A little off topic, but in addition to MBC stage IV lung cancer
I also have a severely sternotic mitral valve that needs surgery,
but my cardiologist and Oncologist have not given the green light
on the heart surgery, because my life expectancy from the lung
cancer is not established
to be even 12 months . On top of this, the CT scan found an aneurysm
in a right kidney artery, and all my primary will say about the aneurysm is
he will "monitor" it.! I find that ridiculous, as it wasn't any test he
ordered that discovered it, in the first place.
So I am asking what your husband did about his
aneurysm---as I think, again, they are writing me off (I am one of those
old medicare biddies, right?)
his is 4.9 cm and seems to have shrunk a bit actually. we get an ultrasound every 6 months to monitor and dr. said if it's the same in July that he will only monitor once a year. we went to a different dr. for a 2nd opinion because the one where we live wanted to do surgery and said it was 5.2 cm and when we asked what would happen if he didn't have surgery he said "you would die" and we left that office arguing because the surgery to fix it is more dangerous than the thing itself. So that's when we went and got the 2nd opinion and another ultra sound and the dr. who is the chief of surgery at Baylor in Houston, said they had measured it wrong at UTMB as they measured it on the curve and they have to be measured across-ways. when I contacted the dr. at utmb about more specifics, he, and I might add, very unprofessionally, did not answer me and the surgery we signed up for, he never even called to schedule, even though we didn't tell him our findings on the 2nd opinion! He wouldn't answer my questions about the neck of the thing, etc. He has one on his kidney too that they are watching. Main thing is to make sure your blood pressure is nice and low and no undue pressure on your arteries. Hope this helps in some way. God bless you and I am so sorry you are going through this. Jesus, please heal Arkait from the top of her head to the soles of her feet, and we thank you Lord Jesus, that you hear our prayers, amen! <3
also, his aneurysm is abdominal aortic. they have done autopsies on ninety-nine year olds and found aneurysms 9 cm big that the person never even knew they had. one day at a time; yesterday is history, tomorrow is a mystery, today is the present! open it and enjoy! God's got you, relax in Father's arms! <3
no, you are not a medicare biddy, no more than I am <grin> you can email me directly at thechurchasleftthebuilding@yahoo.com one h between churchas ... I have been through some things with my mitral valve causing heart problems but I don't want all my business on the street! too late probably LOL God bless you and heal us all in Jesus name, amen!
It sounds like you started out with primary breast cancer. I was de novo, with no prior cancer at all. You can't blame yourself. You did what you thought was best at the time.
Take care,
Sophie ❤
you are so sweet, thank you! so glad I found this support group and YOU! Jesus loves me this I KNOW! <3
That happened to me. 10 years is recommended for many now.....to late for us! Fay
it's not too late as long as you are living and breathing! there was a woman in florida totally cured with immunotherapy! they're on the right track, we live in such a promising time! God bless you and heal us all in Jesus name, amen! <3
My story is the same as yours. After 5 years I was done and they didn’t consider me a high risk any more. I would have gladly taken Letrozole for the rest of my life to avoid this.
yes, I thought I was cured and maybe I was, who knows about cancer, you can do everything right and it can still pop up again. God bless you and heal us all in Jesus name, amen!
I took aromatase inhibitors for 10 years after mastectomy. cancer returned 2 years after I stopped.
wow! I'm thinking we should take it the rest of our lives after reading of your experience! thanks for sharing! <3
Thanks Soph! Have a blessed evening!
You're welcome. I'm off to bed soon. I've got a busy day ahead tomorrow.
Sophie ❤
Hello! Sounds like study emphasis did not include women with MBC like us? I am one of those women who was HR positive, node negative, and had no follow up with tamoxifen or anything else. 17 years later my BC had metastasized to my spine. UGH! Hindsight can be so depressing!!
Thank you for sharing, though. Such interesting studies have been done with this disease—many that lend hope. Bless you! Linda
Thank you, Linda. The reason I posted that is because I've been playing with my letrozole the last week, only taking M,W,F because I read the results are the same in some study from the University of Arizona with 112 women, but alas I am ditching that idea as I can't really know and the experts must have a reason that we take 2.5 mg. daily, so I will be compliant. Wow! 17 years in remission! That's a long time; I just thank God there is a way to fight this beast that can give us hope and I am hopeful that the cure will keep getting better and better as BIG advancements are being made. We just have to make sure we hang around for them, right? I had six years after my original diagnosis and surgery, rads, and wouldn't have even gotten checked out had I not had a lady run a stop sign and hit me. I had been arthritic, chalked it up to old age and never thought cancer. The next day my back was sore, so I went in to get checked out to be on the safe side, but we all know it's normal to be a bit sore after a wreck, but I had to be sure nothing broken. FF to a week or two later when I had an appt. with my PCP and I thought I might as well get my shoulder checked out as I had hurt it 8 mos. earlier lifting a big screen tv. That is when I got the xray and she said it didn't look right and looked like cancer. Just on a regular xray! So I had the CT and bone scan, and set up for a biopsy. Then the day before my biopsy, the hospital called and told me to bring $800 copay and my insurance had said my copay should only be $100, which the hospital would not back down and I got mad and cancelled the biopsy. Then, about a week later, I slipped in my kitchen and broke my femur above my rt knee due to the bone mets weakening the bone there. i also want to mention that when I would be getting up from doing chores that had me on my knees, something in my brain would not let me push up with my right leg. So before I even knew there was a problem, my body knew. It didn't hurt or anything, just felt weak. I think that is interesting, the mind/body connection. So, since I didn't have the biopsy yet, they couldn't fix my leg until they had it so I had to stay there 7 days before they could do surgery because it took that long for the biopsy results to come back. So I had surgery around 11 p.m. and then back in my room by 3 a.m. They put in a titanium rod all the way from my hip to my knee, and the ortho had told me I'd be able to stand right away, which was encouraging. They kicked me out of the hospital that same day at 4 p,m. and tried to force me to go to a rehab facility. I'm only saying all this to share the fact that a wonderful admin. RN patient care rep. came in and told me that alot of times, insurance will pay for an ambulance to get you BACK into your house. They were pressuring me to go to the rehab and that's why they wouldn't let me stay another night in the hospital. I have steep steps and hubby is disabled and I didn't want to take the chance of hurting my brother, or falling. Anyway, she got it approved and that afternoon I was brought home where I had my hubby and brother to help me get better, and the insurance did pay for it! Praise God! So I have had a huge distraction from my re- diagnosis in January and now I am walking just fine without aid, but all the cancer uncertainty is settling in again, no distractions! It's so hard, I talked to my sister yesterday about family burial plots, and just the thought of it, I cried all day. I found out talking about burial is different when you think you might be buried soon, it is depressing. I thank God for Jesus Christ in my life who gives me His peace; I know this road is hard for all of us but honestly I know I can trust Him to bring me through it because He has never failed me. I don't count this as a failure, I will count it as a testimony; just like my broken leg and me up and walking just fine 2 mos. afterwards without even a limp most days! Said too much, my hubby says, "have you met my wife? she's the world's first tongue transplant, she wore the 1st one out". He's always making me laugh. God bless you and heal us all in Jesus name, amen! <3
Good morning! Just loved reading your story and thoughts. What an amazing journey you have been on!
Like me, you must have been totally shocked to learn that your bone pain was, in fact, breast cancer. I remember that, after working in the yard for so many years, I was used to waking up the next day and all of the back pain would have disappeared. Mine seemed to have become chronic but I just attributed it to the aging process.
I eventually noticed a lump in my right arm pit, very small and very hard. Of course, after a biopsy, I was diagnosed with MBC, and subsequent scans showed spread to spine and one pelvic bone. I thought I was a goner and had no idea that there were manageable treatments to extend life.
You have such a beautiful attitude and inspire me to find that same place in my head! Love and prayers to you, Linda
awwwwww thank you for being so kind. I go back and forth, today is a good day, yesterday was dark ... God knows we're only human. I am a wimp ... I lived a life with no pain and hardly any physical ailments, so I should have realized that arthritis doesn't just come on you suddenly when you haven't had it your whole life. I think, subconsciously, my head was in the sand and I didn't even want to THINK of the beast! Now, with the letrozole, my back is hurting and that's one part that never hurt before. My left hip flexor was so painful, I'd have to lift my leg to get it in the car, pre-diagnosis; now it doesn't hurt but the right one does at hip flexor where the bone mets were said to be. My niece is a physical therapist and said the hip flexors will be painful as we age if we're inactive, so both sides ached, but the side that hurt the most wasn't implicated in the diagnosis. Too late for a "long story short" I know, but I think I have a mixture of mets and arthur itis, they are often mistaken one for another I've heard. i will tell you one thing estrogen did for me; it kept the wrinkles away, now they are setting in fast since it's gone, a price I will gladly pay! So nice to meet you, although I wish it were under better circumstances for both of us! God bless you and heal us all in Jesus name, amen! that is the cry of my heart! <3
Don't you take Ibrance along with the letrozole? Supposed to be one of the best "zap and clean up" combos! May God shine His healing light on all of us for years to come!! XXOO Linda
not yet, I was supposed to have an onc appt. this month but he went on vacation and rescheduled me for April 20th. he had mentioned the ibrance at our 1st and only meeting so I'm thinking, yes, he will start me on that. God bless you and heal us all in Jesus name, amen!
It's a very expensive med, so be sure to ask your oncologist about Pfizer's program to cover the entire cost! Bless you!! Linda
thank you! God bless and heal us all, amen!
Can you please elaborate on possible reduced rate of Letrozole being OK? Thanks.
" I've been playing with my letrozole the last week, only taking M,W,F because I read the results are the same in some study from the University of Arizona with 112 women, "
yes, I had read a study and decided to try it but I was worried the whole week so I went back to the once a day and, surprisingly enough, it's not bothering me anymore. I don't know why, I am taking "move-free" with boron and have been for two weeks, so that could be helping alot as I came upon it at walmart.com when I was looking for calcium supplements and things for arthritis and I saw that and saw over 1,000 people commenting and saying how much it helped them with their aches and pains, so for $14.00 I bought it and it seems to be helping alot. Here is the website where I got the information for alternative dosing of Letrozole. God bless you and heal us all in Jesus name, amen! ncbi.nlm.nih.gov/pubmed/266...
In looking at the reduced Letrozole study, does it seem to you to imply
there were no reduction in adverse side effects, despite the lower dose?
if you scroll down and look at the chart, it says 38% saw an improvement in bodily pain; that is what I was going for. but actually, the week I took it every other day, it seemed I was hurting MORE! the mind is so powerful with it's placebo effects, so who knows, but I know when I went back to taking everyday, my pain is almost non-existant. what's confusing to me is that I had started taking "move free" with boron 2 weeks earlier and it supposedly has two weeks until effectiveness period, so I don't know but I'm thinking it's the move-free because the letrozole had made me hurt.
From Oncology 2022 Nov 11: "Acupuncture Reduces Aromatase Inhibitor-Related Joint Pain" 
Letrozole/Femara V Anastrozole
Letrozole Ibrance & CBD?
Stage 4 BC with brain mets - success stories
Ibrance / Letrozole and Bloating anyone?
