Triple negative breast cancer with bone only mets

[Sadie321]

Anyone else out there with TNBC and oligometastatic bone Mets? What treatment did you get? I had 3 x stereotactic radiation and now nothing. Doctor says I have no “measurable disease “ so not eligible for any trials. Originally had 4 x TC chemo + double mastectomy and then 6 x gemcitabine + carboplatin and radiation when I had a local recurrence. They say if those chemos didn’t work then there is nothing else they can give me till it spreads outside the bones (e.g. liver, lungs, brain). Not happy to just sit and wait for it to spread. What treatment did others have and what results did you get? Specifically looking for treatment for TNBC.

[Iwasborntodothis]

I know there will be better answers but why are you not offered Xgeva as a bone strengthening med? It is a high dose of Prolia which is for osteoporosis.

[Sadie321 in reply to Iwasborntodothis]

I don’t have osteoporosis and the bone Mets weren’t large and treated with radiation. Oncologist said the risk of osteonecrosis of the jaw (a side effect of Xgeva) was not worth the risk. She didn’t really want to prescribe it to me but she did. Did not recommend any supplements to take with it (calcium and Vit D) but did say I had to get the ok from my dentist before starting it.

[Iwasborntodothis in reply to Sadie321]

I have bone mets check out my post on Xgeva and a tooth problem I am having. What I have found after three various dental visits is that there are few dentists willing to deal with an Xgeva patient with a dental problem. I have found an endodontist now who will work on my tooth in a way that my oncologist approves. I am taking Vitamin D and calcium.

[PJBinMI]

Sadie, I don't have personal experience with triple negative mbc, but I have been living with bone mets for over 17 years. Alot of oncs do say that we generally do not die from bone mets. If you have not seen a bc specialist onc, it might be worth your time to do that. The top cancer centers in the US are the Comprehensive Cancer Centers. They have bc specialist oncs who both see patients and do research and are the oncs who give presentations at major cancer conferences. Most of them do second opinion evals and your own onc should be willing to help you arrange one. My onc suggested it to me and got me an appt in about 10 days. I hadn't really felt a need to do that, but it was hugely reassuring to my husband and grown daughter and was well worth it for that along. After my original long time old and wise onc retired, I went back for another second opinion. Your no measurable disease is very good news, and may even mean that you have been cured! That doesn't happen often, but it does happen. So I guess my main advice to you is to get a second opinion, and then try to free yourself from being consumed by worry. No matter how long any of us have, worry can wreck that time and finding ways to enjoy life certainly doesn't shorten our life! Easier to say than do, but worth the effort. Wish i could tell you more

[Sadie321 in reply to PJBinMI]

I have sought a second option from Houston Methodist but they recommended the same as my current oncologist except they recommended the Xgeva. I am an American citizen but not living in the US and with Covid it is too difficult for me to get out of the country and I don’t any health insurance if I come back to the US. Many think the US has the best treatment and wanted to know if others in the US are really getting better treatment than I am getting now.

[Bettybuckets]

Hi Sadie- I recently came back to USA for family snd treatment. I was getting good care in NZ for free… now my hubby snd I have to pay $3k month ($36K/ year) for a health plan. But if you don’t make a lot of money then it will be cheaper than that… as they use a sliding scale on Obamacare.

[Goldenhair in reply to Bettybuckets]

Hi Bettybuckets, I chose not to go on Obamacare. I went to a Health Insurance Advocate. He recommended AARP or Humana to be the best choices for my medical. I chose Humana. Then my OC was able to get me on Ibrance through the manufacture of Pfizer. My best to you and yours, -GH

[Sadie321 in reply to Goldenhair]

Hi Goldenhair, could i get the name of your health insurance advocate? Not living in the US for almost 30 years I have no idea where to start/who to call! I was looking into care at MD Anderson and they will not accept Obamacare so I have to be careful on what insurance I get.

[Goldenhair]

Hi Sadie321, my health insurance advocate is local to where I live, but he's very helpful. His name is Joe Holm and his number is: 623-824-1545 or 320-905-7711. I hope your health and insurance work out for you. Cheers, -GH

[Bettybuckets]

I also came back after years and years… ended up on Tufts HMO now merging with Partners. Hope that hells