1. < Breast Cancer

Letrozole joints, bone loss, low platelets, high cholesterol

Posted by flowergal @flowergal, Oct 23 8:04pm

Hi DCIS stage 0 grade 3 ER+ low % lumpectomy/radiation, clean margins no lymph involved.
Was on Anastrozole, could hardly walk, hair loss, increased chin hair, brain fog, memory issues. Now Letrozole -joint pain (tolerable), hair loss, dry vagina, increasing back pain, bone loss, (need Prolia soon, after dental work) . Blood work by GP shows high cholesterol, very low platelets. Extreme fatigue has been an issue with both. Been on AIs since December '23. Do I really need them? Should I try another one? Go off? I'm 69 and have calcifications in the other breast Dr is watching and fatty Necrosis in lumpectomy breast. Help.

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cancerstage1 | @cancerstage1 | Oct 27 3:00pm
In reply to @ebtexas55 "Hello flowergirl, You may want to look at Exemestane as an alternative to the other AIs...." + (show)
@ebtexas55

Hello flowergirl,
You may want to look at Exemestane as an alternative to the other AIs.
Was on both, same issues…these drugs are crippling. Ask your pharmacist what the 1/2 life is on all of them.
Exemestane is 50 hours. Perhaps after your being on it for 3 months, your onc will let you go every other day because of the half life.

I dont know if your drs discussed Faslodex, but its 2 shots on each cheeky.
If your cancer is attracted to estrogen, yes, youll need an AI or something like Falslodex.
However, if your cancer was not attracted to progesterone, you could actually use that to balance the estrogen.

Look for Dr. John Lees book on this.
Sadly he passed away years ago, but he actually reversed osteoporosis in his patients who had estrogen dominance.
HOWEVER, look into mushrooms as specific ones are excellent aromatase inhibitors. But youll have to consume a good quantity. Perhaps Exemestane one day, mushrooms the next.

Jump to this post

I stopped taking letrozole one month ago and life has improved. On top of palpitations and foot neuropathy, It felt like ants were crawling on my neck several times a day. After a month, the feeling of ants crawling on my neck is gone, neuropathy is better and i hope palpitations will go away. I am 76 and if my life expentancy is 10-15 years I will take my chances. It would be a different decision if I was 55. A 76 year old body cannot take the onlaught of this terrible medicine.

REPLY
2 replies
ebtexas55 | @ebtexas55 | Oct 27 8:40pm
In reply to @cancerstage1 "I stopped taking letrozole one month ago and life has improved. On top of palpitations and..." + (show)
@cancerstage1

I stopped taking letrozole one month ago and life has improved. On top of palpitations and foot neuropathy, It felt like ants were crawling on my neck several times a day. After a month, the feeling of ants crawling on my neck is gone, neuropathy is better and i hope palpitations will go away. I am 76 and if my life expentancy is 10-15 years I will take my chances. It would be a different decision if I was 55. A 76 year old body cannot take the onlaught of this terrible medicine.

Jump to this post

Cancerstage 1,
GOOD FOR YOU! Youre right! The AIs can be very debilitating & crippling.
Im not too far from you in age, a bit younger, but Im for quality of life.
If youd feel better taking something natural, research mushrooms. There are quite a few species that do inhibit estrogen naturally.
If your cancer did not feed on progesterone, you might talk to your dr about taking yam or progesterone cream.
Look for the late Dr John Lees book.
He had his patients reverse osteoporosis with the cream. It balances the estrogen.
I experienced those palpitations too, and had to go to the er because i either passed a clot or had an arterial spasm, said the hospital cardio.
Saw him for a follow up and he asked if exemestane was a pro thrombotic drug. I told him I didnt know, but i asked my retired med tech to research for me. He said it could be for a small percentage. Guess I was one of them.

REPLY
flowergal | @flowergal | Oct 28 9:14am

My oncologist called me back. Although the DCIS non invasive she said it would be a 50% chance it would come back.
Because my immune system was compromised by multiple tick diseases the oncologist thinks this may be why my body is so sensitive to these drugs.

There was no oncotype done because it was DCIS .

I'm wondering if having a would be helpful in lowering reoccurrence?

I have no idea what to do.

REPLY
1 reply
flowergal | @flowergal | Oct 28 9:17am
In reply to @flowergal "My oncologist called me back. Although the DCIS non invasive she said it would be a..." + (show)
@flowergal

My oncologist called me back. Although the DCIS non invasive she said it would be a 50% chance it would come back.
Because my immune system was compromised by multiple tick diseases the oncologist thinks this may be why my body is so sensitive to these drugs.

There was no oncotype done because it was DCIS .

I'm wondering if having a would be helpful in lowering reoccurrence?

I have no idea what to do.

Jump to this post

-Having a mastectomy

REPLY
ebtexas55 | @ebtexas55 | Oct 28 10:07am
In reply to @ebtexas55 "Hello flowergirl, You may want to look at Exemestane as an alternative to the other AIs...." + (show)
@ebtexas55

Hello flowergirl,
You may want to look at Exemestane as an alternative to the other AIs.
Was on both, same issues…these drugs are crippling. Ask your pharmacist what the 1/2 life is on all of them.
Exemestane is 50 hours. Perhaps after your being on it for 3 months, your onc will let you go every other day because of the half life.

I dont know if your drs discussed Faslodex, but its 2 shots on each cheeky.
If your cancer is attracted to estrogen, yes, youll need an AI or something like Falslodex.
However, if your cancer was not attracted to progesterone, you could actually use that to balance the estrogen.

Look for Dr. John Lees book on this.
Sadly he passed away years ago, but he actually reversed osteoporosis in his patients who had estrogen dominance.
HOWEVER, look into mushrooms as specific ones are excellent aromatase inhibitors. But youll have to consume a good quantity. Perhaps Exemestane one day, mushrooms the next.

Jump to this post

Flowergal,
I need to make a correction:
Exemestane half life is 24 hours.
Letrozole is 48.
I had been on Letrozole and switched to Exemestane Because Letrozole was crippling. I faired better on Exemestane with mobility and no joint pain etc.

My apoligies for my mistake.
Best.

REPLY
mari | @mari | Oct 28 1:15pm

Anastrozol was created by a devil.
Crooked fingers. Surgery on same
Injections from hand Dr
Hand pt
I Refused Anestrozal and fired that prescribing Dr. !

REPLY
1 reply
katrii | @katrii | Oct 31 6:30am
In reply to @flowergal "Exactly. I need to ask again what the percentage of a return is without AI. Thank..." + (show)
@flowergal

Exactly. I need to ask again what the percentage of a return is without AI.

Thank you for the reminder.

Jump to this post

You and me both!! Letrozole was a No Go for me..lots of joint pain and mood swings.
Now on Anastrozole, and was put on a 600 mg, 3x/day Motrin regime for 5 weeks…but my thumb pain drove me to the Ortho Surgeon. Got shots in both thumbs, and he said I’m a good candidate for thumb joint replacement (9-12 mo recovery) and painful. I want to just STOP AI’s!!! Going to dr Friday to talk about it. I’m 71 almost…life’s too short for these mood swings and 24/7 joint pain!

REPLY
1 reply
katrii | @katrii | Oct 31 6:36am
In reply to @cancerstage1 "I stopped taking letrozole one month ago and life has improved. On top of palpitations and..." + (show)
@cancerstage1

I stopped taking letrozole one month ago and life has improved. On top of palpitations and foot neuropathy, It felt like ants were crawling on my neck several times a day. After a month, the feeling of ants crawling on my neck is gone, neuropathy is better and i hope palpitations will go away. I am 76 and if my life expentancy is 10-15 years I will take my chances. It would be a different decision if I was 55. A 76 year old body cannot take the onlaught of this terrible medicine.

Jump to this post

I totally hear you! Letrozole caused crippling hip and lower back pain. Switched to Amestezole (sp?)…but my thumb Joints, esp my R thumb are 24/7 hurting.
Ortho wants to replace the joint.
Dentist today…I’m so scared. Some tooth pain.
I want NO AI drugs, am 70, and am truly wondering if I will have a better life with no pain, and no cancer recurrence. Hard to get a clear answer.

REPLY
1 reply
katrii | @katrii | Oct 31 6:37am
In reply to @mari "Anastrozol was created by a devil. Crooked fingers. Surgery on same Injections from hand Dr Hand..." + (show)
@mari

Anastrozol was created by a devil.
Crooked fingers. Surgery on same
Injections from hand Dr
Hand pt
I Refused Anestrozal and fired that prescribing Dr. !

Jump to this post

Are you on any AI meds, then?

Going through same…

REPLY
flowergal | @flowergal | Oct 31 12:24pm
In reply to @katrii "You and me both!! Letrozole was a No Go for me..lots of joint pain and mood..." + (show)
@katrii

You and me both!! Letrozole was a No Go for me..lots of joint pain and mood swings.
Now on Anastrozole, and was put on a 600 mg, 3x/day Motrin regime for 5 weeks…but my thumb pain drove me to the Ortho Surgeon. Got shots in both thumbs, and he said I’m a good candidate for thumb joint replacement (9-12 mo recovery) and painful. I want to just STOP AI’s!!! Going to dr Friday to talk about it. I’m 71 almost…life’s too short for these mood swings and 24/7 joint pain!

Jump to this post

I have the constant lower back pain mentioned below too.
Anastrozole gave me a "trigger finger" something I knew nothing about before.
The combined impact on my body has been horrid.
In a few weeks I have an MRI and mammogram. I meet back with the surgeon. I've stopped the Letrozole. My oncologist says I have a 50% reoccurrence rate. (No oncotype done) So when I meet with the surgeon I'm going to discuss a double mastectomy.

REPLY
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