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Letrozole

barnyardgal
Posts: 187
Joined: Oct 2017

I met with my my gynecologist oncologist last week and she wants me to start Letrozole to help prevent a recurrence. I had endometrial adenocarcinoma, stage3a, grade 2 and it was estrogen positive. She said since I was grade 2 this has a good chance of preventing a recurrence. Letrozole has been used to help prevent recurrence in breast cancer, and now they are using it for ovarian cancer as well. A recent study is showing that it cuts recurrence in ovarian cancer. If the side effects don't bother me she would like me to take it for a couple of years. Main side effects are joint pain and bone loss. I just had my dexoscan to check bones and hopefully I won't get any joint pain. 

Had my ct scan a couple of weeks ago which showed I was ned. My vaginal cuff still had a little swelling, but not as much. I just finished treatment in June so she thinks that it is still a little irritated. She is going to have me do a pet scan in October just to double check that. I feel great though.

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

Good for you!  Considering how positively I reacted to the Megace I wish my oncologist would have recommended it to prevent reoccurrence. I wouldn’t be in this mess not being a candidate for surgery for this renal problem. 

barnyardgal
Posts: 187
Joined: Oct 2017

Thank you. I have a friend who had breast cancer and she is on something similar as her cancer was estrogen positive. It makes sense that it would work to reduce the estrogen.  I forgot to post it before but here's an article explaining recent study for ovarian cancer. https://www.onclive.com/web-exclusives/letrozole-maintenance-therapy-improves-rfs-in-ovarian-cancer-

I'm glad megace is working for you. 

LisaPizza's picture
LisaPizza
Posts: 199
Joined: Feb 2018

Thanks, i need to look into that as i am same stage and grade as you. Don't  know about receptors though.

Lulu7582's picture
Lulu7582
Posts: 102
Joined: Jun 2018

Hi Ladies,

I am fairly new to this forum but wanted to drop by and say hi and tell my story....I was Stage 1A, Grade 2 and 4 months later cancer had spread to my bone, pelvis and lungs. Just finished 6 rounds of chemo Taxol / carbo and had a great response so in partial remission. The cancer is very estrogen positive so started the Letrozole 2 weeks ago. So far so good. Will be getting Xgeva every 3 months to help prevent bone loss and fractures. Initially when they first found the mets, the docs tried megace alternating with tamoxifen but the tamoxifen gave me terrible bone pain and I mean it was 20 out of 10!!! The magace ...well it just made me eat and put weight on...so after 9 weeks the cancer had worsened so they took me off it all and started the chemo. But for right now the plan is to be on letrozole and get a PET end of September and see how things are going. 

pato58's picture
pato58
Posts: 97
Joined: Jun 2018

I am sorry for what you are going through. Also amazed about your progression from stage 1A to mets in 4 months. My Stage was also 1A one month ago and I did not have any further treatment after the robotic surgery and only a chest Xray prior.

Can you tell us about your pathology report regarding lymphovascular invasion and pelvic wash findings? 
Take care Smile

 

Lulu7582's picture
Lulu7582
Posts: 102
Joined: Jun 2018

Hello Pato58,

Yes the doctors said this was very unusual. I had 27 nodes removed all negative, pelvic wash negative but my LVSI was positive. The cancer was the garden variety endometrioid adenocarcinoma! Lynch Syndrome negative. They did ask if I had ever lived in a 'toxic environment'. After talking to my sister who also had an unusual breast cancer  she told me our father had used lots of DDT and other chemicals while we lived on the farm during our childhood. But who knows...anyway you can imagine how we felt when they told me mets...just couldn't believe it after being told stage 1 no further treatment. BUT here I am now doing well and hope to stay that way. Can't change the past but I can enjoy every day that I am given and pray for better treatment options that may one day cure metastatic cancer. Thanks for asking!  

barnyardgal
Posts: 187
Joined: Oct 2017

I'm sorry about your progression from 1a so quickly, though I'm glad it responded well to the chemo. Good to hear about Letrozole. 

cmb's picture
cmb
Posts: 324
Joined: Jan 2018

This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

BluebirdOne

Nov 04, 2018 - 8:54 pm

No one asked me about toxic environment during treatment...

I always wondered when I would get cancer from following the DDT trucks spraying for mosquitos when I was a kid. 

 

ConnieSW

Nov 06, 2018 - 1:49 pm

DDT

My friend remembers doing that when she was an Air Force brat in Texas. Cringe.   

 

barnyardgal

Oct 31, 2018 - 9:30 am

Just thought I'd update. I've

Just thought I'd update. I've been on the Letrozole for 3 months and no side effects. The doctor said the first two months are when you get the side effects so I should be good. Just had PET scan and all was good.

 

MAbound

Oct 31, 2018 - 10:06 am

Thanks for the update

I don't remember seeing this thread earlier, so thanks for updating...so glad this seems to be going well for you. It's always good to be up-to-date on the options for treatment that are out there for us.

 

cmb

Oct 31, 2018 - 10:05 am

Happy for you

So glad to hear that you've not had any side effects from Letrozole and that your PET scan was good. 

 

ConnieSW

Oct 31, 2018 - 10:16 am

Appreciate the update

So glad it's going well 

 

LadyMox

Oct 31, 2018 - 10:31 am

Good to hear that it is going

Good to hear that it is going well without side effects so far

 

addie13

Oct 31, 2018 - 3:10 pm

I'm new to this board.

I was diagnosed almost five years ago with endometrial cancer Stage Ia and told that would be it, after a complete hysterectomy.  But then about two years ago, endometrial cells appeared on a CAT scan in my lungs..indolent cells they said.  They put me on Megace and after a year of breathlessness which was awful, they tried Aromosin which has caused severe joint pain.  I still have a few cells and there's a shot that's experimental but has the same side effects as the others (although some people do better).  I'm wondering if anyone else has this problem with side effects and if there's anything that has helped.   I have felt very alone since while this is a common cancer, I don't know anyone that has had it.   many thanks!

 

MAbound

Oct 31, 2018 - 5:24 pm

Hello!

Glad you found us, but sorry to hear that you are still having issues. What type of endometrial cancer do you have? Have you ever been tested to see if you'd be eligible for immunotherapy?

 

NoTimeForCancer

Oct 31, 2018 - 7:27 pm

addie, so glad you have

addie, so glad you have finally found us.  You are not alone!  

 

barnyardgal

Nov 01, 2018 - 4:13 pm

Addie,

Addie,

I'm sorry you have bone pain. The inhibitors can cause bone pain. For the Letrozole, the doctor wants to keep my vitamin d high to help prevent that side effect. I don't know if it helps with the type you're on though. I know with breast cancer they can try different inhibitors if one causes problems so you might ask about that.

cmb's picture
cmb
Posts: 324
Joined: Jan 2018

This recap includes posts that were lost during CSN's data outage from 10/29/18 to 1/30/19.

BluebirdOne

Nov 04, 2018 - 8:54 pm

No one asked me about toxic environment during treatment...

I always wondered when I would get cancer from following the DDT trucks spraying for mosquitos when I was a kid. 

 

ConnieSW

Nov 06, 2018 - 1:49 pm

DDT

My friend remembers doing that when she was an Air Force brat in Texas. Cringe.   

 

barnyardgal

Oct 31, 2018 - 9:30 am

Just thought I'd update. I've

Just thought I'd update. I've been on the Letrozole for 3 months and no side effects. The doctor said the first two months are when you get the side effects so I should be good. Just had PET scan and all was good.

 

MAbound

Oct 31, 2018 - 10:06 am

Thanks for the update

I don't remember seeing this thread earlier, so thanks for updating...so glad this seems to be going well for you. It's always good to be up-to-date on the options for treatment that are out there for us.

 

cmb

Oct 31, 2018 - 10:05 am

Happy for you

So glad to hear that you've not had any side effects from Letrozole and that your PET scan was good. 

 

ConnieSW

Oct 31, 2018 - 10:16 am

Appreciate the update

So glad it's going well 

 

LadyMox

Oct 31, 2018 - 10:31 am

Good to hear that it is going

Good to hear that it is going well without side effects so far

 

addie13

Oct 31, 2018 - 3:10 pm

I'm new to this board.

I was diagnosed almost five years ago with endometrial cancer Stage Ia and told that would be it, after a complete hysterectomy.  But then about two years ago, endometrial cells appeared on a CAT scan in my lungs..indolent cells they said.  They put me on Megace and after a year of breathlessness which was awful, they tried Aromosin which has caused severe joint pain.  I still have a few cells and there's a shot that's experimental but has the same side effects as the others (although some people do better).  I'm wondering if anyone else has this problem with side effects and if there's anything that has helped.   I have felt very alone since while this is a common cancer, I don't know anyone that has had it.   many thanks!

 

MAbound

Oct 31, 2018 - 5:24 pm

Hello!

Glad you found us, but sorry to hear that you are still having issues. What type of endometrial cancer do you have? Have you ever been tested to see if you'd be eligible for immunotherapy?

 

NoTimeForCancer

Oct 31, 2018 - 7:27 pm

addie, so glad you have

addie, so glad you have finally found us.  You are not alone!  

 

barnyardgal

Nov 01, 2018 - 4:13 pm

Addie,

Addie,

I'm sorry you have bone pain. The inhibitors can cause bone pain. For the Letrozole, the doctor wants to keep my vitamin d high to help prevent that side effect. I don't know if it helps with the type you're on though. I know with breast cancer they can try different inhibitors if one causes problems so you might ask about that.

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