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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flowergal | @flowergal | Oct 24 6:38pm
In reply to @windyshores "@flowergal did you mean your ER% is low? If so maybe you can ask your oncologist..." + (show)
@windyshores

@flowergal did you mean your ER% is low? If so maybe you can ask your oncologist if an AI is that helpful in the context of lower response due to lower ER%.

Just wanted to also say that on the osteoporosis forum there is a lot of discussion about the difficulties in getting off Prolia: there is a "rebound" with loss of bone density and increase in fracture risk. Some experts (McCormick, Leder for example) suggest either doing Reclast or Zometa instead. If you do 1-3 shots of Prolia you apparently could do Reclast/Zometa (they are both zoledronic acid) or oral Fosamax. If you do longer term Prolia then Reclast is needed to prevent rebound. I am just suggesting this concern as an osteoporosis sufferer, so ask your doctor about rebound and the best way to deal with both bone loss from cancer meds and potential rebound from Prolia.

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I just looked it up ER+
"15% weak"

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1 reply
windyshores | @windyshores | Oct 24 8:40pm
In reply to @flowergal "I just looked it up ER+ "15% weak"" + (show)
@flowergal

I just looked it up ER+
"15% weak"

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@flowergal did you have an Oncotype Dx test? That report should tell you your risk with and without an AI. Maybe your Oncotype info and talk with onco will mean that you don't need the AI, at least for too long- ?

Glad you can do Prolia a few times and then Reclast. My bones took a dive during those 5 years because I could not, at the time, take bone meds.

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2 replies
dlmdinia | @dlmdinia | Oct 25 8:06am
In reply to @flowergal "I will ask her about this drug. Thank you." + (show)
@flowergal

I will ask her about this drug. Thank you.

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Just an FYI about Exemestane. I've been on all three of those drugs, but I only took Exemestane for 30 days because I found my insurance didn't cover it and it was extremely expensive without. I've noticed recently that Mark Cuban's online pharmacy has started offering Exemestane at a very affordable price comparable to what I was paying with insurance for the other two drugs. Good luck.

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1 reply
flowergal | @flowergal | Oct 25 12:03pm
In reply to @windyshores "@flowergal did you have an Oncotype Dx test? That report should tell you your risk with..." + (show)
@windyshores

@flowergal did you have an Oncotype Dx test? That report should tell you your risk with and without an AI. Maybe your Oncotype info and talk with onco will mean that you don't need the AI, at least for too long- ?

Glad you can do Prolia a few times and then Reclast. My bones took a dive during those 5 years because I could not, at the time, take bone meds.

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I don't know if I qualify for oncotype wasn't that to decide if one needs chemo?
Not sure..

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flowergal | @flowergal | Oct 25 12:03pm
In reply to @dlmdinia "Just an FYI about Exemestane. I've been on all three of those drugs, but I only..." + (show)
@dlmdinia

Just an FYI about Exemestane. I've been on all three of those drugs, but I only took Exemestane for 30 days because I found my insurance didn't cover it and it was extremely expensive without. I've noticed recently that Mark Cuban's online pharmacy has started offering Exemestane at a very affordable price comparable to what I was paying with insurance for the other two drugs. Good luck.

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Thank you. Will check that out. Hoping to hear back from oncologist soon.

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carrot47 | @carrot47 | Oct 25 1:26pm

Sorry you are dealing with so much.
I am on Tamoxifen after bad side effects from Exemestane and Letrozle. I also had Osteoporosis before treatment. Prolix stabilized me.
Everyone has different issues with all this .
I am 77 and asked what studies are done on older people who take inhibitors, nothing was out yet.
My quality of life is important. I can tolerate Tamoxifen but wonder how much I helps at my age,
Good luck

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1 reply
windyshores | @windyshores | Oct 25 2:50pm
In reply to @windyshores "@flowergal did you have an Oncotype Dx test? That report should tell you your risk with..." + (show)
@windyshores

@flowergal did you have an Oncotype Dx test? That report should tell you your risk with and without an AI. Maybe your Oncotype info and talk with onco will mean that you don't need the AI, at least for too long- ?

Glad you can do Prolia a few times and then Reclast. My bones took a dive during those 5 years because I could not, at the time, take bone meds.

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@flowergal there is an Oncotype for DCIS as long as you are ER+ and HER2-. You can still have one using specimens in storage. It does provide some good information and might help you decide whether to continue on meds.

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1 reply
flowergal | @flowergal | Oct 26 2:31pm
In reply to @carrot47 "Sorry you are dealing with so much. I am on Tamoxifen after bad side effects from..." + (show)
@carrot47

Sorry you are dealing with so much.
I am on Tamoxifen after bad side effects from Exemestane and Letrozle. I also had Osteoporosis before treatment. Prolix stabilized me.
Everyone has different issues with all this .
I am 77 and asked what studies are done on older people who take inhibitors, nothing was out yet.
My quality of life is important. I can tolerate Tamoxifen but wonder how much I helps at my age,
Good luck

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Thank you

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flowergal | @flowergal | Oct 26 2:33pm
In reply to @windyshores "@flowergal there is an Oncotype for DCIS as long as you are ER+ and HER2-. You..." + (show)
@windyshores

@flowergal there is an Oncotype for DCIS as long as you are ER+ and HER2-. You can still have one using specimens in storage. It does provide some good information and might help you decide whether to continue on meds.

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Ok thank you. I will see if my surgeons office can get me that information.

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ebtexas55 | @ebtexas55 | Oct 27 10:05am
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.

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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.

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