First Post, father has Stage IV

Hi there Lesleynunn,

Wow, we are in pretty eerily similar boats.

My mom, also 59, was diagnosed (formally, after her craniotomy to remove a left frontal lesion) on April 17th. January 17th she went to the ER with right side weakness, our little podunk hospital ER did a CT and said she had a brain bleed and rushed her to the slightly less podunk big sister hospital where they did a comparative CT and showed it hadn't grown. Symptoms resolved within 48 hours. MRI showed three total 'lesions', they said it's likely metastatic cancer and released her.

Went for a PET scan, one hilar lymph node by lung lit up a little. Down the throat needle biopsy, came back clear. A little area in her intestines lit up, so a colonoscopy was up next, but we never got to that. I told her I thought we were on a wild goose chase and we'd only get a definitive answer from a brain biopsy, so we set it up. The planning scan for the biopsy revealed that it had silently gone from 8mm January 17th to 2.8 cm April 13th, the other two (left parietal and left putamen) had grown, and there was a new 4mm one close to where the resected tumor bed was. The plan was immediately changed to debulking craniotomy, though he said he got it all out.

Then we set up gamma knife for May 17th, where in the planning they found 3 new ones on the right frontal lobe, zapped all 6 and the tumor bed to make 7 zaps.

We just recently discovered from the PET scan she had to determine her baseline for treatment that she has "interval thickening" of her right adrenal gland with a 15 something uptake, so that's her only 'outside the brain' met.

Tomorrow, she will start ipi/nivo. We just found out she is also BRAF negative. We do have a melanoma specialist, and he's amazing.

Curious, would you happen to know if your father ever had any moles removed in his younger days?

After extensive searching and even a suspicious mole biopsy, they've found no primary lesion… However she recently told me about a mole she had removed from her face around 30 years ago that met all the ABCDE criteria for melanoma, so… That's probably what the primary was. On top of the fact that the loss of her mom and quitting her job afterwards made for the most stressful year of her life… I suspect all contributed.

Thank you for sharing with us, I am hopeful and very happy for you all to hear that treatments are shrinkign things up. Best of wishes for a complete response!

Spinal mets and lepto aren't the same thing.  Did they specifically say lepto?  If so, difficult to treat.  MD Anderson seems to be the place to go for lepto.  Spinal mets are basically bone mets and treated systemically (e.g., the Opdivo) and/or with radiation.

From the brief run down given, it sounds as though his docs are pretty on top of things. I have the same question that Mat has… Did they specifically mention Lepto, or was that something you ran across in researching brain and spinal metastasis? Gamma is a great way to deal with melanoma brain mets. It's quite effective, and leaves the least amount of potential damage. Being BRAF negative, the systemic "drugs of choice" in the current environment, would be Opdivo or Keytruda… potentially the toss in of Yervoy as well. Immunotherapy meds take a little time to ramp the immune system up to full speed attack, so keeping watchful eyes on the brain is important. If lepto is suspected, the treatment isn't going to be the same as "ordinary" brain metastasis. I say that as someone who has had 39 "ordinary" mets….. two craniotomies and gamma x10. Sooooo, please know… "ordinary" isn't meant to sound as though brain mets are a routine nothing. **yeeks** I'm assuming the docs have run a full body scan as well. Do they suspect the bowel and bladder issues are brain/spine related, or is there metastasis in his abdominal region as well? The brain is an intricate area. Some folks here have had small mets cause big neurological issues, and others of us have to have a skull full of edema and midline shift (your brain literally moves left or right of center from all of the edema on one side), before we experience any loss of control, numbness, etc. It's difficult to determine just how "bad" things may be, when everyone's neurological function response varies.