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[Rego-park]

My sister has been on ibrance for 2 half years and now it stopped working she’s 38 her2 what is the next medication her dr said she needs to get a special blood test for her mutation anyone knows the next steps I want to take her to Dana farber institute in boston please give suggestions thank you all great souls

[blms]

I was extremely impressed with Dana Farber for breast cancer when I contacted them un 2017. They were by far the most thorough institution I had contacted--and I did most big ones from Sloane, MD Anderson, Medstar Lombardi, Cancer Institute of America, and MD Anderson. So, I believe your sister will be in good hands there. In fact, when I have to change meds again, that is who I am contacting. Yes, she should check for mutations then see if any drugs target that. Many times its a no go but you have to do it to see.

[Hidden]

Hi,Yes she needs to get the blood test. There are certain drugs that would target mutations that may show up if the tumor burden in her blood is high enough with the progression. I had this test but it could not be resulted because there were not enough tumor cells in the blood when I was diagnosed.

I go to Dana Farber myself and highly recommend them. I have MBC to my bones diagnosed in December 2020. I started on Ibrance, Letrozole and Xgeva. Currently on Ibrance, Falsodex and Xgeva.

I see Dr. Nancy Lin at Dana Farber. I am 59, but I believe there are also specialize in younger patients with MBC. You should check that out.

I hope this helps.

[Praising in reply to Hidden]

I have Mets to my bones. Cervical neck. Been on same treatment. How long have you? I’m taking exemestane. Do they do ca markers?

[mbc_carepartner]

The DFCI team is phenomenal. I am my sister’s care partner as well, and it was a huge relief and giant boost when we got to Dana Farber for the first time. Although we greatly appreciate the local oncology team, the volume of patients they see is simply not sufficient for them to have the depth of experience I wanted for my sister’s care. She receives all treatments locally, but we won’t be starting any new treatment without seeing her onc at DFCI, going forward. It’s a big team — have you asked your sister’s local team for a referral? Happy to chat privately with you, care partner to care partner. I would welcome that!

[Kaydub]

Ibrance failed for me a few weeks ago as well. I just got a second opinion at Dana Farber with Dr Lin . She gave me a whole laundry list of drugs on the horizon in clinical trial that I could be eligible for, which gave me a much needed emotional boost. It was really tough, and I’m sure your sister is feeling it, to digest the news that ibrance stopped working. She also explained things clearly to me and I will definitely see her again if unfortunately I need to change drugs again.

It’s a really good idea to get the genetic testing done because a lot of the new drugs and the clinical trials target specific mutations of the cancer. Your sister should get it done before any second opinion so she can get the whole range of options available to her. It does take time some time to get results so don’t delay.

If your sister is getting treated at a major cancer center, she will get the standard of care treatment, which is generally the same choices at all these hospitals, depending on her cancer type. What can differ is access to clinical trials for new drugs being developed. There’s not a lot overlap of clinical trials between hospitals in the same area because of the cost of running the trials. DFCI seemed to have a lot of breast cancer trials from what I could see.

From your user name, are you in the NYC metropolitan area?

[Pbsoup in reply to Kaydub]

How did you set up a second opinion with Dr Lin? I am in California but have read such amazing things about her.

My onc here is good—I think… but would love to get a second opinion especially as I may have liver progression.

I have friends in Boston so could easily make the trip.

Thanks!!!

[Kaydub in reply to Pbsoup]

I just called her office and asked. She’s pretty booked so it took a few weeks., but if you are traveling, that’s not an issue for you. If you’re seeing a good oncologist, her value add is suggesting alternatives that are still in clinical trial stage.

[Rego-park in reply to Kaydub]

Which dr Lin their are two dr Lin Jennifer and Nancy

[Kaydub in reply to Rego-park]

It was Dr Nancy Lin.

[LDR1]

I’m being treated at Dana Farber as well, by Dr. Ann Partridge who is excellent (along with her Senior Fellow Tal Sella, whose incredibly kind and gentle attitude made all the difference in getting through the stage-4 diagnosis).

[Rego-park]

Hi ladies my sister just started to get double vision?

[Rego-park]

Anyone had double vision all of a sudden?