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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miles5513 | @miles5513 | Nov 10, 2022

Today, Nov. 10, 2022 I get the results of the PET Scan I had for the metastatic breast cancer that is in my liver. I pray results are good. If anyone else has MBC please reply what treatments are receiving. I appreciate replies. I am on Keytruda, a drip every 21 days. Chemo was suspended because blood work came back liver enzymes were high. I was diagnosed with MBC in June, 2022. I had a complete mastectomy in May of 2019. Never thought I would get MBC. My lymph nodes were clear with mastectomy; however my ondex? Was high at 27. Anyone else have other types of treatment for MBC? Thank you for your replies & God Bless. Miles5513

meme5 | @meme5 | Nov 9, 2022

In reply to @meme5 "Will do when I see them on Nov 8th. Thank you for the info" + (show)

So I met with my oncologist yesterday. He wants me back on letrozole, which I took for five years. My MBC is still estrogen positive. Also a new pet scan to have a new base to compare from the old one in July before the lymph nodes were removed. Then scans every 3-4 months. Also after pet scan may put me on either Kisquali, Ibrance or Verzinio. I m checking with my insurance (Medicare RX) to see which drugs they cover and co pays. My drs office does have someone who deals with insurance and pharmaceuticals to obtain a co pay I can afford.
I would like to know how others have faired on these drugs. Was one better than the other as far as side effects? Does your body eventually adjust to the side effects so they become easier? Thanks for any impute. I am glad to now have a plan in place.

miles5513 | @miles5513 | Nov 3, 2022

In reply to @leeann66 "Hi everyone, I have posted a few things here before and thought I’d share my updates..." + (show)

I, too, have metastatic breast cancer now in my liver. Chemo was suspended because of high liver enzymes; now am on Keytruda, a drip every 21 days. Had a PET Scan this past Wed. My thoughts are with you, I would like to stay in touch with you.

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!

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?

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)

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.

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)

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.

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)

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

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)

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?