So I was up at providence in Portland getting the Yervoy treatment sitting in a comfy chair and looking out a window with a nice view - what a difference from the IL2 therapy. And apparently they were one of the places key in the development of this medication. The name was based on "your voyage" which seems a little silly since I'm wasn't going anywhere for a few hours. Maybe the sailboat side effect can finally show up.
A different nursing staff administers the Yervoy (Ipi) and the vibe is quite different since the treatment isn't similar but it's cool to be at the place where this stuff was developed.
I have to thank my cousins and good friend Mary for the care packages they sent. It inspired me to get a juicer and start pulverizing all the natural goodness out of a variety of fruits and veggies. We even found orange and purple cauliflower which might be best not juiced since there isn't much liquid in them... Lol but they have way more vitamins and antioxidants than regular cauliflower.
The machine going chuga was the regulator pushing the Ipi (my liquid voyage... Usually you'd expect tequila or jaeger to be involved in that). Perhaps it should have a name. Bob seems to come to mind so there you have it.
The previous post's walking is going well and I expect to keep it up. It would be amazing to actually get out and do some hiking once my legs are ready to do the up and downhill thing a bit better.
Enough for now - back to looking at my planet and star apps . The iPad Ki gave me for our 2 year anniversary is amazing for the kid still buried in me who used to pour over universe books and stare at the clear night sky.
Thursday, July 28, 2011
Thursday, July 21, 2011
One Week from Now
Okay I officially think 1 week in waiting-to-get-scheduled-time equals like a month in real-time...
Next Thursday 7/28 I'll start the Ipilimumbab (Yervoy) infusion plan. For those of you curious, this is a super new treatment for Melanoma approved by the FDA in May of this year. This will be a lot easier for my body to handle than the IL2 treatments, and since the Melanoma isn't spreading to form new sites, I'm right in the target group for this drug.
More updates as the day approaches and the liquid goodness is stuck into my arm (I hope that's where I get it... since it takes 2 hours for the treatment).
On the personal health side, I've started walking down the local bike path (I'm sure the hard core bike folks love seeing pedestrians there... ) as of yesterday. Of course 1 day is hardly a trend, unless of course you have a political agenda to push, and then it would constitute a commonly held belief and intensely popular dogma which the majority of people have held dear and should be considered as the direction for our societal needs. :)
Bottom line - I'm going walking further today lol.
So lets hope I don't develop any of the super low % of serious side effects which might derail my interest in getting my body healthy and moving again! Between that, processing photos upon which I've been sitting... and playing and recording music, I plan to ensure I'm picking up my mental as well as physical activity.
More to come!
Next Thursday 7/28 I'll start the Ipilimumbab (Yervoy) infusion plan. For those of you curious, this is a super new treatment for Melanoma approved by the FDA in May of this year. This will be a lot easier for my body to handle than the IL2 treatments, and since the Melanoma isn't spreading to form new sites, I'm right in the target group for this drug.
More updates as the day approaches and the liquid goodness is stuck into my arm (I hope that's where I get it... since it takes 2 hours for the treatment).
On the personal health side, I've started walking down the local bike path (I'm sure the hard core bike folks love seeing pedestrians there... ) as of yesterday. Of course 1 day is hardly a trend, unless of course you have a political agenda to push, and then it would constitute a commonly held belief and intensely popular dogma which the majority of people have held dear and should be considered as the direction for our societal needs. :)
Bottom line - I'm going walking further today lol.
So lets hope I don't develop any of the super low % of serious side effects which might derail my interest in getting my body healthy and moving again! Between that, processing photos upon which I've been sitting... and playing and recording music, I plan to ensure I'm picking up my mental as well as physical activity.
More to come!
Friday, July 15, 2011
Not the best news
Unfortunately the results of my scan showed the IL2 treatments to have been mostly ineffectual. The nodules are growing and Dr Lufkin indicated it was not going to help me to keep working with plain Interleukin 2 therapy.
While it was mostly bad news, we did find that there were no new cancer areas which means either the IL2 did that at least or well, I'm lucky. Either way it's a silver lining.
Frankly it really sucks but there are other options with just as much chance as what we've pursued so far. My value menu choices are many, and there are new drugs and treatments being developed for melanoma at a fair clip right now.
After a good amount of discussion we chose to go with a treatment of 4 infusions called Yervoy (tm). This will be far less stressful on my system (unless I am uber lucky and my colon goes insane... Sounds like a super time, and/or my pituitary gland shuts off. Now both of these side effects hit a very low % of folks, and I don't expect to be featured on any fiber bases cereal commercials over the coming 4 months so this is my chosen path. Both of these symptoms can be managed with steroids so maybe I'll get all buff if this happens... I know it's more likely I'd get the puffer fish face with no muscles but hey, nothing to be done about it).
The way this treatment works is basically similar to IL2 except it takes a different approach towards the immune system (operates on different receptors blah blah medical talk ...). In the words of my oncologist, it takes the brakes off the immune system. So more of my body using it's own devices to fight this thing. I guess the difference in physical side effects are to do with the pathway to getting the immune system up and running? At any rate, there have been good results with "incurable" ocular melanoma patients and such so my version of melanoma stands a good chance to respond.
If this doesn't work well enough, we have biochemotherapy (combines IL2 and chemo... now that sounds lovely), 2 pills that have shown good promise, the possibility for my melanoma to be 1 of 2 genetic variants which they have specific treatments developed (this would be good) and some other things which we didn't discuss
Both Ki and I feel very upbeat about my choices and the future. I am resolute in my will to get this under control. There are options and we're going to keep fighting the good fight. He'll be back in Beirut (the nickname I've given his apt in Lebanon) in order to teach the students here at his school's campus this Fall, so I'll be coming up to Portland for the infusions and spending time between the place up north and the house in Talent during this process.
I wish it were better news, but rather than let my body swim in depressive chemicals and get down about this I'm choosing to focus on getting my body healthier (diet and exercise) so trips to the gym and focusing my mental state on low stress with fun activities.
Please continue to pray, light candles, meditate and send good energy, sponsor underprivileged children and those insanely cute animals (yes tigers and polar bears are cute) as I do believe it will all help. Much love and appreciation to all. I'll continue to update the blog through this process.
While it was mostly bad news, we did find that there were no new cancer areas which means either the IL2 did that at least or well, I'm lucky. Either way it's a silver lining.
Frankly it really sucks but there are other options with just as much chance as what we've pursued so far. My value menu choices are many, and there are new drugs and treatments being developed for melanoma at a fair clip right now.
After a good amount of discussion we chose to go with a treatment of 4 infusions called Yervoy (tm). This will be far less stressful on my system (unless I am uber lucky and my colon goes insane... Sounds like a super time, and/or my pituitary gland shuts off. Now both of these side effects hit a very low % of folks, and I don't expect to be featured on any fiber bases cereal commercials over the coming 4 months so this is my chosen path. Both of these symptoms can be managed with steroids so maybe I'll get all buff if this happens... I know it's more likely I'd get the puffer fish face with no muscles but hey, nothing to be done about it).
The way this treatment works is basically similar to IL2 except it takes a different approach towards the immune system (operates on different receptors blah blah medical talk ...). In the words of my oncologist, it takes the brakes off the immune system. So more of my body using it's own devices to fight this thing. I guess the difference in physical side effects are to do with the pathway to getting the immune system up and running? At any rate, there have been good results with "incurable" ocular melanoma patients and such so my version of melanoma stands a good chance to respond.
If this doesn't work well enough, we have biochemotherapy (combines IL2 and chemo... now that sounds lovely), 2 pills that have shown good promise, the possibility for my melanoma to be 1 of 2 genetic variants which they have specific treatments developed (this would be good) and some other things which we didn't discuss
Both Ki and I feel very upbeat about my choices and the future. I am resolute in my will to get this under control. There are options and we're going to keep fighting the good fight. He'll be back in Beirut (the nickname I've given his apt in Lebanon) in order to teach the students here at his school's campus this Fall, so I'll be coming up to Portland for the infusions and spending time between the place up north and the house in Talent during this process.
I wish it were better news, but rather than let my body swim in depressive chemicals and get down about this I'm choosing to focus on getting my body healthier (diet and exercise) so trips to the gym and focusing my mental state on low stress with fun activities.
Please continue to pray, light candles, meditate and send good energy, sponsor underprivileged children and those insanely cute animals (yes tigers and polar bears are cute) as I do believe it will all help. Much love and appreciation to all. I'll continue to update the blog through this process.
Tuesday, July 12, 2011
next step
CT scan follow up to the first round of treatment tomorrow - I'll meet with Dr Lufkin on Thursday to discuss the results.
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