1. < Breast Cancer

Metastatic breast cancer: Anyone else?

Posted by rae3 @rae3, Oct 6, 2016

Hello...I am new to this site. I had BC originally in 1989 with lumpectomy, chemo and radiation. After 4 months of pains, thought to be muscular from lots of tennis, xrays revealed cracked vertebraes in the spine and led to MBC diagnosis, to the bones. I have been receiving xgeva and faslodex injections once a month since February 2015. One round of radiation in August to the hip eliminated that pain by reducing the tumor. Just wondering if there is anyone out there in a similar situation and how are you doing??

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Moderator
Colleen Young, Connect Director | @colleenyoung | Sep 27, 2022
In reply to @millard "I had a mastectomy one and 1/2years ago and have had a pet scan showing that..." + (show)
@millard

I had a mastectomy one and 1/2years ago and have had a pet scan showing that I have neuromas nodules in my lungs.
I had a biopsy on August 30, and it took that long that my cancer has returned.
It is stage 4 Metastatic breast cancer.
I had an appointment 12 days; now, they tell me today the drug the doctor wanted me on is not
approved. So they went to another medication to see if that would be authorized.
Here I am still waiting for a chemo drug to get approved,
So stressed beyond belief

Jump to this post

Oh, that is stressful. Is the drug not approved by your insurance?

REPLY
millard | @millard | Sep 28, 2022

No, it HAS NOT, AND I AM INTO DAY 13.
THE FIRST DRUG WAS NOT APPROVED, WHICH I CALLED OVER AND OVER TO FIND OUT
ONLY YESTERDAY, FROM SOMEONE, CALLED OLGA; THE DRUG WAS( RIBOCICOIB).
SHE SAID YESTERDAY THEY ARE TRYING TO GET ANOTHER DRUG CALLED (ABEMCICLIB}
I WILL NOT KNOW UNTIL THE END OF THE WEEK. WHY SO LONG?
I AM OVER THE MOON FRUSTRATED; SO MUCH DISCONNECT HERE IN MY CARE.
IT HAS BEEN A YEAR THAT THE PET SCAN FOUND MANY MANY NODULES IN MY LUNGS.
NOW CALLED METASTATIC BREST STAGE 4 .

REPLY
3 replies
leeann66 | @leeann66 | Sep 28, 2022
In reply to @millard "No, it HAS NOT, AND I AM INTO DAY 13. THE FIRST DRUG WAS NOT APPROVED,..." + (show)
@millard

No, it HAS NOT, AND I AM INTO DAY 13.
THE FIRST DRUG WAS NOT APPROVED, WHICH I CALLED OVER AND OVER TO FIND OUT
ONLY YESTERDAY, FROM SOMEONE, CALLED OLGA; THE DRUG WAS( RIBOCICOIB).
SHE SAID YESTERDAY THEY ARE TRYING TO GET ANOTHER DRUG CALLED (ABEMCICLIB}
I WILL NOT KNOW UNTIL THE END OF THE WEEK. WHY SO LONG?
I AM OVER THE MOON FRUSTRATED; SO MUCH DISCONNECT HERE IN MY CARE.
IT HAS BEEN A YEAR THAT THE PET SCAN FOUND MANY MANY NODULES IN MY LUNGS.
NOW CALLED METASTATIC BREST STAGE 4 .

Jump to this post

So sorry to hear that news! I was on Ribociclab (Kisqali) for 18 months, the company that makes it Novartis have a program here in Canada that will pay for it if insurance won’t. Maybe see if there is similar if you are in US? It is extremely expensive and quite new and that is why insurance hesitates. Mine took a while
To agree to cover it but Novartis sent me
The medication within a few days even though we didn’t know of it would be covered, they said it was important to treat treatment then we would deal with the insurance. Please try reaching out to Novartis! Good luck, keep us posted.

REPLY
boogz | @boogz | Sep 28, 2022
In reply to @millard "No, it HAS NOT, AND I AM INTO DAY 13. THE FIRST DRUG WAS NOT APPROVED,..." + (show)
@millard

No, it HAS NOT, AND I AM INTO DAY 13.
THE FIRST DRUG WAS NOT APPROVED, WHICH I CALLED OVER AND OVER TO FIND OUT
ONLY YESTERDAY, FROM SOMEONE, CALLED OLGA; THE DRUG WAS( RIBOCICOIB).
SHE SAID YESTERDAY THEY ARE TRYING TO GET ANOTHER DRUG CALLED (ABEMCICLIB}
I WILL NOT KNOW UNTIL THE END OF THE WEEK. WHY SO LONG?
I AM OVER THE MOON FRUSTRATED; SO MUCH DISCONNECT HERE IN MY CARE.
IT HAS BEEN A YEAR THAT THE PET SCAN FOUND MANY MANY NODULES IN MY LUNGS.
NOW CALLED METASTATIC BREST STAGE 4 .

Jump to this post

I’m sorry you’re dealing with this. It’s beyond frustrating.
I too had a delayed diagnosis of MBC because no one could figure out (7 doctors) my shortness of breath and why my one area of my lung was narrowed. Long story short, after a second bronchoscopy, it was a lymph node narrowing and causing the collapse of one of my lungs. I dealt with it for 11 months before they figured it out and that was without treatment. I started on Verzenio and Faslodex (after a week approval process) and within three months my scans showed no evidence of disease. I’m HR + HER 2 -
I understand your anger. I was beyond disappointed and felt completely ignored. I had to fight to get others to understand what I was feeling and that irritated me because it wasn’t anxiety, but it sure did create anxiety after so many months of dealing with many that didn’t move forward correctly.
I was also angry at myself for not demanding a PET scan. I’m an RN and should’ve known better but relied on my team to take care of everything. Well, now I have a great care team and I don’t sit back.
Stay persistent. Keep us posted !

REPLY
1 reply
eku | @eku | Sep 28, 2022
In reply to @boogz "I’m sorry you’re dealing with this. It’s beyond frustrating. I too had a delayed diagnosis of..." + (show)
@boogz

I’m sorry you’re dealing with this. It’s beyond frustrating.
I too had a delayed diagnosis of MBC because no one could figure out (7 doctors) my shortness of breath and why my one area of my lung was narrowed. Long story short, after a second bronchoscopy, it was a lymph node narrowing and causing the collapse of one of my lungs. I dealt with it for 11 months before they figured it out and that was without treatment. I started on Verzenio and Faslodex (after a week approval process) and within three months my scans showed no evidence of disease. I’m HR + HER 2 -
I understand your anger. I was beyond disappointed and felt completely ignored. I had to fight to get others to understand what I was feeling and that irritated me because it wasn’t anxiety, but it sure did create anxiety after so many months of dealing with many that didn’t move forward correctly.
I was also angry at myself for not demanding a PET scan. I’m an RN and should’ve known better but relied on my team to take care of everything. Well, now I have a great care team and I don’t sit back.
Stay persistent. Keep us posted !

Jump to this post

Wow! It's amazing that you are now NED. So happy for you! Are you still taking the meds?

REPLY
1 reply
boogz | @boogz | Sep 28, 2022
In reply to @eku "Wow! It's amazing that you are now NED. So happy for you! Are you still taking..." + (show)
@eku

Wow! It's amazing that you are now NED. So happy for you! Are you still taking the meds?

Jump to this post

Oh yes. Treatment will be for the rest of my life until they come up with a cure. And I have come to terms that the side effects of the meds, even though my fatigue and some joint pains, that is what I will do.

REPLY
1 reply
tessspike | @tessspike | Sep 28, 2022

I take Kisqali - ribociclib - and after the PAN Foundation covered it for 3 months, Novartis then included me in a program that covers what insurance doesn't pay. My doctors arranged it all, so I don't know the mechanics of applying, but your medical team should! Keep asking.

REPLY
eku | @eku | Sep 28, 2022
In reply to @boogz "Oh yes. Treatment will be for the rest of my life until they come up with..." + (show)
@boogz

Oh yes. Treatment will be for the rest of my life until they come up with a cure. And I have come to terms that the side effects of the meds, even though my fatigue and some joint pains, that is what I will do.

Jump to this post

I love your attitude! You give me hope.
Have you heard https://radicalremission.com/ ? They collect healing/NED stories.

REPLY
2 replies
boogz | @boogz | Sep 28, 2022
In reply to @eku "I love your attitude! You give me hope. Have you heard https://radicalremission.com/ ? They collect healing/NED..." + (show)
@eku

I love your attitude! You give me hope.
Have you heard https://radicalremission.com/ ? They collect healing/NED stories.

Jump to this post

I haven’t! Thank you. Being new to this diagnosis 12/2021, I’m apprehensive. It’s normal, but still learning to live normally.

REPLY
jaynep | @jaynep | Sep 29, 2022
In reply to @millard "I had a mastectomy one and 1/2years ago and have had a pet scan showing that..." + (show)
@millard

I had a mastectomy one and 1/2years ago and have had a pet scan showing that I have neuromas nodules in my lungs.
I had a biopsy on August 30, and it took that long that my cancer has returned.
It is stage 4 Metastatic breast cancer.
I had an appointment 12 days; now, they tell me today the drug the doctor wanted me on is not
approved. So they went to another medication to see if that would be authorized.
Here I am still waiting for a chemo drug to get approved,
So stressed beyond belief

Jump to this post

I am so sorry you’re having to go through this-sometimes I wonder about insurance. Paid so much when young and then it’s “sorry we don’t pay for that”. You are in my thoughts and prayers.

REPLY
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