Bad results from recent LP- need advice

chicagored

Writing for my mom Anne who has Stage IV ILC ER+/PR+, HER2-. She was first diagnosed in Summer of 2011 with mets to uterus, ovaries and tons of bones. She had a total hyster and started on Taxol. Within a year she was changed to Gemzar, then 6m-1y later went on Navelbine for awhile. Next she went on taxoterre for a while. Then a couple years ago on Femera, then Femera and something with it, then Faslodex, then Affinitor for about a year with something else, then Ibrance for less than 6 months, now for 2 months on Xeloda.

Since starting the oral chemo and hormone therapies 2 years ago, her cancer markers would slowly continue to go up a little bit prompting her oncologist to change her treatment more frequently, but pet scans would only show some progression within the bones.

A month or 2 ago she had a droopy eye and some vision issues so her oncologist had her get a MRI which was negative for metastasis.

Since her cancer markers just kept going up some, her oncologist had her get a lumbar puncture and the results just can back showing atypical cells suspicious for metastasis.

Apparently her oncologist said treatment with intrathecal chemo and radiation treatment and repeat LPs and MRIs to check progress would only buy her a few more months. She seemed to recommend stopping all treatment and go on hospice.

I don't know enough about chemo treatment, does this sound right? Does anyone have a "success story" with this type of cancer where they had a positive LP and even brain mets but stayed alive for more than 6 months-1year with continued treatment?

Any feedback would be appreciated

Anonymous

Hi,

I'm just writing to say I hear and feel your anxiety about this... I have brain mets and have had treated with stereotactic radiosurgery with very good results... I have an ear issue that continues to concern the docs in the case that they find leptomeningeal disease...

So far, nothing has shown on MRI to suggest lepto.

I don't want to go further than that to just support you in understanding your diagnosis, if that is in fact what you have. And when I got my brain mets diagnosis I became very familiar with lepto. It does seem less favorable a prognosis but you really have to consider your functional ability and your hopes and goals before you decide to just go to hospice.

I have in fact read stories of positive outcomes / longevity on this website.

Please know I'm sending you support and hope and wish you very good luck.

GirlWarrior

Just wanted to let you know tha I was just given the same diagnoais on October 21 - leptomeningeal cancer. I am starting whole brain radiation for five days tomorrow and then we will see from there. I am going to fight - I have a nine year old daugter - every extra day is another milestone, hair cut, spelling test, walk in the snow - I cannot accept their dismal prognosis. I won't be sent home to die. My second opinion said "keep looking for answers, I have seen people live one, two year with this diagnosis". I want be one of those people. I know I cant have it all anymore, but I want a little bit more🍧 I send all my support and compassion to your Mom - this is a very frightening diagnosis.

Longtermsurvivor

There are two differently named and overlapping bco.org communities for those with leptomeningeal cancer and MBC:

Lepromenngeal

Lepro mets

(click on titles for links to communities)

The titles are misspelled, but the members are sincere, experienced and very helpful for one another.

I hope you'lll both join the small group, so you find the friends, inspiration and support to face your daunting diagnosis and prognosis.

warmest healing wishes, Stephanie

kt1966

Hi ,

I have LM too. Diagnosed in July - there aren't many of us here but as Stephanie said there are a couple of threads on this (unfortunately misspelled) you can click on her links.

Thanks so much Stephanie for keeping an eye on us and jumping in to help so often. You are one amazing lady ((hugs))

kt

GirlWarrior

Thank you for giving me the lay of the land - this is a really lonely diagnosis. 🙁

steelrose

I am here too... recently diagnosed and trying to come to grips with it all. I'm scared but determined... so grateful for all of you!

Rose.