Quick Update - the latest CT scan brought no changes to the party. Generally this is a good result, just not as amazingly good as the last scan.
I saw Dr Soutrain last Friday, and he confirmed the radiation had resulted in roughly a 60% reduction in Lymon. He felt this was a good result, and we would likely not need to revisit that area unless we see new growth.
My visit with Dr Curti went well this morning, and he and I discussed the more detailed analysis from the CT scan. With no appreciable growth or reduction showing he felt my current plan was where we should stay. I gather there were a few of the lung mets which showed as + or - 1mm in size which is due to the greater resolution of a dedicated CT scan as opposed to the version delivered with a PET (fluffy animals do tend to shed so in the warmer months, and Dr Curti appears to be quite fastidious with his grooming habits).
However the next scan will be of the fluffy variety, as we want to see if the metabolic activity has changed with the continuance of the faux Gleevec. With so much cell growth, it's inevitable to have some residual left overs which the body won't reabsorb. I'm hoping there will be reduction in the amount of life (metabolic activity) showing in the cancer mets.
On a fun buying-my-own-cancer-meds note... The lab in Goa is no longer where my pills are made, and while I don't have the new box handy to read to share where my newer pills were made, I can attest to the packaging being much fancier. Who knew there would be more than one pharmacy in India producing a generic for this drug? It'll be interesting to see if the pills keep coming from there in the future, (assuming I'll keep on the Gleevec plan).
Dr Curti and I chatted about what we might look to do if the pills stop working and there are a few new immune response treatments being developed as well as added combination therapies with radiation and immune boosters. There are also a few chemo options to try. With mucosal melanoma acting on different areas of the body than skin melanoma, there are some differences in what tends to be effective (it's also far more likely to be C Kit positive apparently).
Hopefully if I need to change, I'll qualify for one of the new options, but for now my plans are to start actively losing weight, practicing keys and guitars, trying to write, and going back and forth from Talent to Albany/Corvallis to see Ki (who is starting residency today!).
Monday, June 18, 2012
Monday, June 4, 2012
Remembering Lah Jawlah in the WC
So the thing is, when you're a child (and sadly a teenager, young adult, pre middle aged adult etc) you don't always know what the hell people are referencing after hearing something multiple times. For me the earliest memory of this phenomenon was the name of a town in So. Cal (my father was stationed in Coronado for 5 years in the 70's). This mysterious town where my sister would go on occasion for sporting events was named:
"La Jolla"
And of course being a Spanish name roughly translated as "The Jaw Line of a Female Ox," it wasn't pronounced quite the way the name read to a young boy (that would be me at the time) who knew nothing of Spanish. So of course I heard the name of this place as:
"Lah Hoyuh"
Never once thinking it was the same as that funny sounding town I would see on road signs from time to time known to myself as:
"Lah Jawlah"
I suppose if I were being properly British about it (only with select words of course... or so it seems) I would just brashly proclaim that I wasn't a native Spanish speaker and push on ahead in my life continuing to say (and in my mind correctly so) "Lah Jawlah."
The reason I'm putting you intrepid readers through this scintillating explanation of how my mind revisits and updates a childhood memory through my pre middle aged adult brain's filter, is simply because my birthday is coming up in 2 days, and I thought this would be more interesting to write about vs. last year's birthday when I checked in for my second cycle of Interleukin 2 therapy. 'Happy Birthday Doss, now put this lovely gown on, and we'll commence to plug a myriad of tubes into you and do our best to keep you comfortable while you go into shock every 8 hours for as many times as you can take it' (I was a wuss ... maybe if I'd managed all the infusions I would have had the sail boat effect?).
Update bits:
Happily I'm still seeing reduction in Lymon, but he hasn't made a complete disappearance quite yet. He's a bit larger than a good sized almond to my touch, hopefully he'll continue to shrink by the coming CT scan.
I'll be getting my next scan on Friday, June 15th and visiting with the good Dr. Soultrain later that morning (and likely stopping by Ikea with Ki for some last minute grabs for his apartment in Albany (which is the town next to Corvallis where his residency will start on June 18th). On that Monday (the heretofore mentioned 18th), I'll meet with Dr Curti to go over the CT results.
And for those of you in the "know" I've had a total of 4 "incidents" since starting this mad journey last year in May. I thought I was done with that stuff, but radiation therapy after effects have included a need to keep a water closet within striking distance. I'm hardly the only person to experience this heightened degree of daily fun, so I'm not whining. Just sharing :) And fortunately I haven't had to book it out of the car again in the middle of a May shower to reach the woods in the mountains of I-5 just south of Canyonville this year (while trying to not pass out from my first week of IL2 therapy) what a memory - I'll cherish it forever!
And to close I'll include a photo of a lovely fountain in Lithia Park (here in Ashland - the park is truly one of the gems of the region). Ki seems to love this shot even though the angel baby is strangling the poor goose (of course if it's a goose, it deserves said treatment as species based sorta karma... and no I don't hold having to fend off geese with a briefcase on multiple occasions as they simply decided to chase after and snap at me against them... such lovely birds really).
"La Jolla"
And of course being a Spanish name roughly translated as "The Jaw Line of a Female Ox," it wasn't pronounced quite the way the name read to a young boy (that would be me at the time) who knew nothing of Spanish. So of course I heard the name of this place as:
"Lah Hoyuh"
Never once thinking it was the same as that funny sounding town I would see on road signs from time to time known to myself as:
"Lah Jawlah"
I suppose if I were being properly British about it (only with select words of course... or so it seems) I would just brashly proclaim that I wasn't a native Spanish speaker and push on ahead in my life continuing to say (and in my mind correctly so) "Lah Jawlah."
The reason I'm putting you intrepid readers through this scintillating explanation of how my mind revisits and updates a childhood memory through my pre middle aged adult brain's filter, is simply because my birthday is coming up in 2 days, and I thought this would be more interesting to write about vs. last year's birthday when I checked in for my second cycle of Interleukin 2 therapy. 'Happy Birthday Doss, now put this lovely gown on, and we'll commence to plug a myriad of tubes into you and do our best to keep you comfortable while you go into shock every 8 hours for as many times as you can take it' (I was a wuss ... maybe if I'd managed all the infusions I would have had the sail boat effect?).
Update bits:
Happily I'm still seeing reduction in Lymon, but he hasn't made a complete disappearance quite yet. He's a bit larger than a good sized almond to my touch, hopefully he'll continue to shrink by the coming CT scan.
I'll be getting my next scan on Friday, June 15th and visiting with the good Dr. Soultrain later that morning (and likely stopping by Ikea with Ki for some last minute grabs for his apartment in Albany (which is the town next to Corvallis where his residency will start on June 18th). On that Monday (the heretofore mentioned 18th), I'll meet with Dr Curti to go over the CT results.
And for those of you in the "know" I've had a total of 4 "incidents" since starting this mad journey last year in May. I thought I was done with that stuff, but radiation therapy after effects have included a need to keep a water closet within striking distance. I'm hardly the only person to experience this heightened degree of daily fun, so I'm not whining. Just sharing :) And fortunately I haven't had to book it out of the car again in the middle of a May shower to reach the woods in the mountains of I-5 just south of Canyonville this year (while trying to not pass out from my first week of IL2 therapy) what a memory - I'll cherish it forever!
And to close I'll include a photo of a lovely fountain in Lithia Park (here in Ashland - the park is truly one of the gems of the region). Ki seems to love this shot even though the angel baby is strangling the poor goose (of course if it's a goose, it deserves said treatment as species based sorta karma... and no I don't hold having to fend off geese with a briefcase on multiple occasions as they simply decided to chase after and snap at me against them... such lovely birds really).
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