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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Mentor
Chris, Volunteer Mentor | @auntieoakley | Oct 30, 2022
In reply to @miles5513 "What injections are you getting for your your MBC? I, too, have MBC which is in..." + (show)
@miles5513

What injections are you getting for your your MBC? I, too, have MBC which is in my liver. Am getting Keytruda drip every 21 days. Have a PET Scan coming up. Please reply the name of your injections & how often do you get them? Thank you Miles5513

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I am sorry, I couldn’t figure out which injection they were referring to, and this member hasn’t been active for a few years.
I am crossing my fingers for your upcoming scan.
How well are you tolerating the Keytruda?

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meme5 | @meme5 | Oct 30, 2022
In reply to @auntieoakley "If you have this conversation with your doctor, there might be resources to help you with..." + (show)
@auntieoakley

If you have this conversation with your doctor, there might be resources to help you with this. Cancer centers frequently have someone on staff that help you get signed up for a program or a grant. Also our doctor is very good at looking at alternative deliveries of medicine. In clinic shots, opposed to orals, if it means getting it paid for. It is truly crazy that an infusion or in clinic injection has a copay of 20.00 or 40.00, but if you take a pill at home it is frequently not covered or has a ridiculous co pay in the thousands. My husbands two chemo pills together add up to $35,000 per month. If they weren’t covered he would have been gone years ago. Is your oncologist part of a larger cancer center? Are you close enough to be comfortable getting regular injections or infusions?

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Yes there is a cancer center at my local hospital. I will also check with them if need be once I see my MO on the 7th of Nov.

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mglinkhart | @mglinkhart | Oct 31, 2022
In reply to @meme5 "I am on traditional Medicare with a supplement through AARP. I also have Medicare RX coverage...." + (show)
@meme5

I am on traditional Medicare with a supplement through AARP. I also have Medicare RX coverage. But how does anyone afford the drugs you have to be on for metastatic breast cancer. I know I can get an Aromatase Inhibitor for cheap through Optum RX (mail delivery) but the other drugs like Ibrance, etc seem so high I won’t be able to afford even with insurance. Any insight? I live on Social Security and a very small retirement. I just break even every month.

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My Oncology nurse applied to pfizer on my behalf and I’m getting the meds at no cost. The number is 1-800-877-744-5675. They are very helpful. Give it a try. Or ask your doc to do it for you. Hope this helps. Maria

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1 reply
mglinkhart | @mglinkhart | Oct 31, 2022
In reply to @mglinkhart "My Oncology nurse applied to pfizer on my behalf and I’m getting the meds at no..." + (show)
@mglinkhart

My Oncology nurse applied to pfizer on my behalf and I’m getting the meds at no cost. The number is 1-800-877-744-5675. They are very helpful. Give it a try. Or ask your doc to do it for you. Hope this helps. Maria

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That’s for Ibrance

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adanab | @adanab | Oct 31, 2022
In reply to @meme5 "I am on traditional Medicare with a supplement through AARP. I also have Medicare RX coverage...." + (show)
@meme5

I am on traditional Medicare with a supplement through AARP. I also have Medicare RX coverage. But how does anyone afford the drugs you have to be on for metastatic breast cancer. I know I can get an Aromatase Inhibitor for cheap through Optum RX (mail delivery) but the other drugs like Ibrance, etc seem so high I won’t be able to afford even with insurance. Any insight? I live on Social Security and a very small retirement. I just break even every month.

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I have the same insurance coverage you have. The Ibrance & Afinitor (immunotherapy) and now Xeloda (chemo pill) plus Xgeva are all fully covered between insurance and an income based fund the hospital administors. Have you checked with your oncologist group to see what help they can offer?

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1 reply
meme5 | @meme5 | Oct 31, 2022
In reply to @adanab "I have the same insurance coverage you have. The Ibrance & Afinitor (immunotherapy) and now Xeloda..." + (show)
@adanab

I have the same insurance coverage you have. The Ibrance & Afinitor (immunotherapy) and now Xeloda (chemo pill) plus Xgeva are all fully covered between insurance and an income based fund the hospital administors. Have you checked with your oncologist group to see what help they can offer?

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Will do when I see them on Nov 8th. Thank you for the info

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1 reply
eku | @eku | Nov 1, 2022
In reply to @meme5 "I am on traditional Medicare with a supplement through AARP. I also have Medicare RX coverage...." + (show)
@meme5

I am on traditional Medicare with a supplement through AARP. I also have Medicare RX coverage. But how does anyone afford the drugs you have to be on for metastatic breast cancer. I know I can get an Aromatase Inhibitor for cheap through Optum RX (mail delivery) but the other drugs like Ibrance, etc seem so high I won’t be able to afford even with insurance. Any insight? I live on Social Security and a very small retirement. I just break even every month.

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I, too, suggest to contact your oncologist or nurse to help you sign up for a free/discounted plan. I am on Verzenio (abemaciclib) and the oncology nurse put me on the program immediately. If you are at a cancer center, the specialty pharmacy workers also might know about it.

On a separate note, may I kindly suggest MBCs to include their disease type (PR/ER, HER2, mets sites)? I am still trying to find my way and when someone says they are on, say, Keytruda, I end up searching what that is for and why am I not on it. Then it turns out it's not a fit for what I have. Or perhaps it could be put under the profile section? Thank you for your understanding.

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boogz | @boogz | Nov 2, 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.

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Since first, being diagnosed 12/21 I hardly would say that I would be an NED story. Remission isn’t a medically accurate description regarding no evidence of disease. We will never be in remission.

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cctoo. Catherine Crowley | @cctoo | Nov 2, 2022

just had limited axillary dissection for recurrent breast cancer to lymph nodes...anyone else have this? what's next?

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leeann66 | @leeann66 | Nov 3, 2022

Hi everyone, I have posted a few things here before and thought I’d share my updates that may offer ideas for the rest of you. Quick recap, diagnosed June 2020 metastatic Breast Cancer with mets in lymph nodes under arm and bones in many places. HR +\ HER2 negative but borderline with a FISH score of 2+. 19 months on Kisqali and Anastrozole (was Ned for about 16 months) then Mets started to grow. Went on Afinitor and Exemastane but reacted badly, switched to Xeloda, after 6 months scan showed it wasn’t working and cancer has progressed. This week started in a trial for a new soon to be on the market combo drug Dato-Dxd that in the first two phases of trials got great results. So far just had one treatment Tuesday but will post updates down the road. My message to all of you is we will Always be on treatment, will be NED for aWhile then that will change and we’ll go into something else. Good news is there are several options - lots of tools in the tool box - and like this trial I am on, they will continue to develop new, better treatments for us that one day might even lead to a cure! Stay informed, ask your doctor about programs and trials available, stay active and focused and let’s all live our best lives in the battle together!

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