From stage IV terminal to clean scans in 3 months.

starlove

Hello everyone,

I was told in May of this year (2020) that I would die in 2 months. RO and MO both have said the samething. They referred me to Palliative dr. because I refused radiation treatment. I only had 2 WBR to my brain and couldn't handled it well so I stopped. I ended up in the hospital as a result of 2 WBR treatment.

I begged my doctor to put me on chemo pills that I have read the studies for. Tukysa and Xeloda alon with kadjinti (herceptin). I had brain MRI and whole body PET/CT scan and they all came clear. I had leptomeningeal cancer in my brain which dr. has said that the treatments would not get rid of it. It would only (maybe) stop the growth. However, there is no cancer at all in MRI of the brain scans.

Another thing was that I had cancer in my lungs, liver, bones and lymph nodes. They are all gone as well.

What I wanted to ask you guys is that, has anyone got results like mine? Has anyone was given the clear on metastatic cancer and the cancer came back? I am not sure what to feel. I am happy that I have no cancer, but not totally happy because I think it may come back again. I am taking CBD oil and MSM pills every day with my treatment. I wonder if that helped? I appreciate all who chime in and share their experience.

Love

Star

moth

Hi Star, yay on your current status! you might want to check out the Stage IV NED thread https://community.breastcancer.org/forum/8/topics/...

Anonymous

Sad to say, it can always come back again but the good news is, people who respond well to the anti HER2 drugs, like you did, can maintain NED status for quite awhile.

I don't know much about brain mets although I have heard these new anti HER2 drugs for brain mets look promising.

Hope your treatment keeps the cancer in check for a good long time!

illimae

I love this! So happy for you 😀

ShetlandPony

Star, this is fantastic! Well-done figuring out and asking for this treatment that has worked so well for you! I hope those doctors learned their lesson. When I achieved my first NEAD, my doctor said that in up to 4 per cent of cases where this happens, the cancer does not come back. But listen, Olma is right about Her2 treatments' ability to give people quite a while. Years. And I wonder if there is something about some cancers or maybe some ILCs that makes them respond so completely to treatment, because I have quickly reached NEAD three times. First two times I got two years each before needing to change treatments, and this time nine months so far, and I have hopes for more than two years this time because it is a novel treatment for Her2 mutated cancers. Can you get a really expert oncologist to consult with going forward? Be happy!