Latest not-at-all greatest developments

The results of my recent MRIs were not good.  The pelvic MRI to see what might be causing left leg pain showed “patchy areas” in the cauda equina (nerves just below the end of the spinal cord). That worried everyone and triggered a quick repeat brain MRI and a cervical spine MRI to look for more deposits or “thickening” in various places.  Both showed evidence of more cancer-cell deposits on the lining of the spinal column and brain, which can cause swelling that impinges on nerves and do other damage to the nervous system and the brain.  Cancer in the cerebro-spinal fluid, which is called leptomeningeal carcinomatosis or leptomeningeal disease (LD), is just about the worst development in metastatic cancer.*  

Eric and I talked with my oncologist for half an hour Saturday morning (he gets called at home with bad results). We discussed treatment options and the option of no treatment–because the one standard treatment for LD only works half the time and has nasty side effects.  “Works” means you maintain the function you have–people don’t (usually) get better from this.  Life expectancy with no treatment is only 4-6 weeks.  Life expectancy with standard treatment, according to one study, was a median of 7 months for LD from breast cancer, and shorter for LD from other common cancers. 

So that’s sobering.  We had lots of questions and called him back that night to discuss them.  But basically I just don’t think…or feel…that it’s time to give up yet. 4-6 weeks?  I will try for those extra months as long as my quality of life is still decent despite side effects–headache, nausea, vomiting.  And more trips to Albany; twice-weekly chemo delivered–here’s the cyborg part–directly into my brain via a “reservoir” under my scalp, connected to a tube that reaches into one of my large ventricles.  That way the drug can be infused directly into my cerebro-spinal fluid (CSF).  It’s called an Ommaya reservoir but I just call it the brain port.

I’m also planning to try taking penfluridol, an old oral antipsychotic drug that seems to kill triple-negative breast-cancer cells…apparently in people (retrospective study) and definitely in mice (randomized controlled trial). Would that I were a mouse. But at this point I’ll try it anyway if I can.  The exciting thing about this drug is that it acts in the brain perhaps even more strongly then in the rest of the body. Most chemotherapy drugs, by contrast, do not cross the blood-brain barrier at all.  So for someone with cancer in the body and worse cancer In the brain, it seems worth it to start acting psychotic right away.

There don’t seem to be cutting-edge or novel ways to treat leptomeningeal disease that are being done at bigger cancer centers; the standard of care is methotrexate everywhere, It seems. Eric and I were exploring the idea of going somewhere bigger and busier to deal with this complication because a place like Dana-Farber would probably have more experience with LD than our one oncologist here in Albany. But that introduces the need to drive long distances for treatment, which decreases quality-of-life quite a bit. We also asked about and looked into clinical trials but have yet to find anything that fits.

We are still draining my left lung every three days and the amount of liquid is going down, Which may mean that the chemo I’m on now is working to kill off little cancer cells. Cross your fingers!

I am now back on high-dose steroids to decrease brain and spinal-cord swelling, Which could mess with my nerves or cause a seizure. No one will ever see my cheekbones again. I am very sad about this. And a lot of me does not quite believe how this is going–that is, about as badly as it could go. But on the other hand my foot edema is gone and my daily headaches went away and although I have LD, it does not seem to be kicking my butt with its patchy deposits at the moment.

More later on all the thoughts this makes us all think…

*LD is more common now that more women are surviving longer with metastatic disease–the cancer has more time to find its way into the CSF.

11 thoughts on “Latest not-at-all greatest developments

  1. Debra

    Oh, this is yucky news indeed. I’m really glad you are going for the treatment. Big hugs to you.

  2. David Millians

    So sudden, yuck! Hugs and much love to you and Eric and the kids.

  3. Shelly

    Try to be a mouse. Maybe you can fool your cells into responding like mouse cells. This all sucks so bad. I have no words.

  4. This really sucks. I’m glad you’re going for the treatment too.

  5. Gina Qualliotine

    Whoa. I just read this post again and it doesn’t get any better second time around that’s for sure.
    I love you.

  6. Jen FS

    Cancer is sucky. Yes be the mouse!! Miss you! Jen

  7. Dee

    “So for someone with cancer in the body and worse cancer In the brain, it seems worth it to start acting psychotic right away.” !!! Thank you for the continuing gift of your humor! Much Love!

  8. Dee

    Oh, and I LOVE the pic that arrives in my inbox with the announcement of your new post – cheek bones! not to mention that great grin… <3

  9. Ellen..know that there are so many around this beautiful country of ours praying for you, thinking of you always, and holding space as midwives do…we love you…vicki hedley

    • ekhb


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