I was wondering if we had any other patients / lurkers / caregivers dealing with leptomeningial mets. I know Kevin from Atl and I have them, right? Hope you're doing well Kevin - I'd love an update when you feel like it. We can compare notes on my intrathecial IL2 vs. your ipi plan. Have you been able to continue that in TN?
I am still at once a week rounds (one day admissions inpatient each week for the dose). But I am getting close to moving to once every two weeks. At least that's MY plan, lol. Dr. Papa may have other ideas. I know he's had a crop of patients who have had some success with this. I'd love to hear from some others who have done this.
The treatment is definitely tolerable in comparison to bio chem. Of course with bio chem as the standard by which all are judged it's pretty hard to imagine ANYTHING that wouldn't rate as "well, at least it isn't bio chem!". I stay in patient for 23 hours and then have a few days at home as a vomitting, moaning vegetable, then a few days of more normal couch potato "at least she's here" kinda days. Then if I'm lucky I have a day or two of "good" productive unmedicated days. Just in time to start all over! If I go to another week off then it will be great!
Side effects are pressure headaches, muscle aches, severe dry mouth, vision changes, naseua, dizziness, etc. Now I think it may be screwing with my hearing - everything sounds muffled, like when you water in your ears. Or have ear plugs in so you hear your own voice REALLY loudly in your ears and have no idea if you're volume appropriate or shouting at people.
I am so thankful that this treatment seems to be working. Last MRI showed some shrinking of the LMD and everything else is still stable. No luck getting back on the GSK but so far so good with the other body systems. So that issue is on the backburner for now.
Thanks again to all my wonderful MPIP buddies for yyour love, encouragement and prayers. Sorry so bad about keeping my CarePage and facebook updated. And don't even get me started on THIS debacle. I'm trying to get used to it but hate all the changes and hope we can all keep each other up to date on the latest developments.