Okay, so most recent update. I've been experiencing some increasing issues with my movements since late August, and went to see my surgeon (the original from last March) for a follow up early in September. He looked inside with a camera thingie, and what he saw seemed to be continual healing from the initial surgery, so not to worry.
As it's now late October, and the bleeding during movements hasn't stopped, and the recent PET scan had indicated there might be something going on in my no-no zone. Because of this, I decided to have a surgeon consult up at the Portland hospital where my Oncologist works. Not that I don't trust my original surgeon, but I wanted a fresh set of eyes, and felt having my treatment team all be in the same location could be beneficial.
It turns out, in the space of a little over a month, I now have a "walnut sized' tumor reappearing in the same spot as the original surgery. As the locally based surgeon was looking to remove a hemorrhoid and not a tumor in March, it's pretty likely we just didn't get a clean and complete removal of that tissue,
So now I get to have a sequel of the original surgery, without of course the super nasty surprise that it's an anal melanoma tumor (old news... yawn). Yay for me... but at least it doesn't really mean anything other than we just didn't get the entire original bit removed, and the walnut size, just means the skin around the area is bulgy cause of the location and such, not that I have an insanely large amount of fresh mucosal melanoma developing.
The surgeon up in Portland actually is pretty amazingly aware of what I have going on from an oncological perspective, and of course let me know just how special I must be to have such a crazy rare cancer (as well as difficult to treat). We discussed the c kit mutation discovered in the genetic test, and he related a story of another patient with a tumor in the same area (different super rare cancer, but again, he let me know not as rare as mine, to which I cheered ... well not so much lol). She also had a kit mutated gene marker in her cancer, and was able to use Gleevec with tremendous success, and it's been a few years now and her tumors are completely under control (except that she had to switch insurances as her original provider would only pay for 6 months of the pills...).
So next Wednesday I'll be back up in Portland getting my no-no zone cut open again, and will be sitting on pillows made of ice packs for a couple of weeks ... again.
On the upside, the surgeon felt this was likely the opportune time for this kind of procedure, since I haven't started the Gleevec (some wrangling with insurance and the hospital back and forth, but having a recurrent tumor should certainly help provide additional ammunition for this discussion). Apparently with a more traditional cancer treatment approach (Gleevec vs IL2 or Yervoy), it's best to not have to recover from surgery while your body is dealing with the medicine.
For the record - I'm still bitter about never seeing any IL2 induced hallucinations nor having had the sail boat-effect promised in the treatment brochure back in June, but I'll settle for basic progress, and a few weeks of light eating...
And you know... questions you wish you would've asked would certainly include:
"Now when you say size of a walnut, would that be with or without the shell...?"
But since I didn't, we're going on the premise of shelled nut. Just cause I prefer that idea all things considered,
Thursday, October 27, 2011
Saturday, October 15, 2011
Gotta get a Rascal first...
So I had my first post Yervoy follow-up CT/PET Scan a couple of days ago (Thursday the 13th) and met with Dr Lufkin yesterday (Friday the 14th - you know that date certainly rings nicer than the last day of the Templars).
The scan gave us pretty much the better end of the results we were expecting. The mets/nodules have grown slightly and I have a couple of new spots in my right hip area. Not really a jump up and down-and run to eat a big steak moment, but frankly better than what we saw in my follow-up scan from the IL2 treatments from July.
In the last scan the general growth rate had the cancer spots double in size (larger mets went from 10mm to 20mm in my lungs). This time the growth was only 2 to 4 mm at the most, and the spreading was minimal, and not in any critical areas.
To have had such a small amount of change vs. the last time shows that the Yervoy is doing more than the IL2 managed, yet should give us enough leverage with my prescription drug provider (insurance) to be approved for Gleevec pills. Reading the description for Gleevec and how it acts on cells that generate the "kit" protein (which is the C Kit mutation in my melanoma we discovered), gives me a tremendous amount of hope for my cancer cells to be successfully targeted by these pills.
In the meantime I have a my next appointment with Dr Lufkin scheduled in a month, and am waiting to hear from a surgeon's office at the Portland Providence for another bum surgery... I've been experiencing some non painful bleeding during most movements, and the latest scan shows a little something in the area where my original operation occurred that removed the anal melanoma. I can't tell you how thrilled I am to have the opportunity for another surgery this year... but it should be a pretty simple recovery I hope, and doesn't have me any more concerned than I was before (which just means we're at alert level cantaloupe... you know that just sounds better than orange).
Of course now I need to get on the ball and get a mobility chair (they were so much cooler when they were called "rascals" but oh well) approved before I get better. I mean how cool would it be to have one of those thing for free! :)
Bottom line... Still hanging in there and doing well.
The scan gave us pretty much the better end of the results we were expecting. The mets/nodules have grown slightly and I have a couple of new spots in my right hip area. Not really a jump up and down-and run to eat a big steak moment, but frankly better than what we saw in my follow-up scan from the IL2 treatments from July.
In the last scan the general growth rate had the cancer spots double in size (larger mets went from 10mm to 20mm in my lungs). This time the growth was only 2 to 4 mm at the most, and the spreading was minimal, and not in any critical areas.
To have had such a small amount of change vs. the last time shows that the Yervoy is doing more than the IL2 managed, yet should give us enough leverage with my prescription drug provider (insurance) to be approved for Gleevec pills. Reading the description for Gleevec and how it acts on cells that generate the "kit" protein (which is the C Kit mutation in my melanoma we discovered), gives me a tremendous amount of hope for my cancer cells to be successfully targeted by these pills.
In the meantime I have a my next appointment with Dr Lufkin scheduled in a month, and am waiting to hear from a surgeon's office at the Portland Providence for another bum surgery... I've been experiencing some non painful bleeding during most movements, and the latest scan shows a little something in the area where my original operation occurred that removed the anal melanoma. I can't tell you how thrilled I am to have the opportunity for another surgery this year... but it should be a pretty simple recovery I hope, and doesn't have me any more concerned than I was before (which just means we're at alert level cantaloupe... you know that just sounds better than orange).
Of course now I need to get on the ball and get a mobility chair (they were so much cooler when they were called "rascals" but oh well) approved before I get better. I mean how cool would it be to have one of those thing for free! :)
Bottom line... Still hanging in there and doing well.
Saturday, October 1, 2011
There once was a girl from Nan...
Okay so that was my attempt at an "attention grabbing headline" and I realize many may not get the reference, but that's just fine :).
I had my 4th infusion of Yervoy this last Thursday, the last for the treatment cycle. My first follow up scan is slated for the 13th of October, and the results will be discussed with the oncologist on the 14th. With Yervoy, it's common to not see results until after a couple of months have passed, so my expectations for progress at this point are low, but I do expect to see good things on later scans.
That having been said, I feel pretty good, and have to keep reminding myself when I have chest pains, that they're most likely not inside of my lungs, since we don't really have nerve endings inside of our lungs... A nice fact pointed out by my med student partner and my oncologist. Funny how so many little niggly things seem to build up over time. Fortunately, none of those have been in the side effect category so far, and since none have manifested themselves, they're unlikely to.
I would definitely recommend Yervoy to IL2 treatments... Even though going through IL2 at least makes you feel like you're actively involved in the process to get better... Which to be honest helps the kind of mind that I seem to posses with regards to being more in charge of my healing.
Feeling a bit like a boat with less of an anchor is a weird place for me, but learning to think in a manner to make that so it isn't a negative thing is proving to be a good exercise. I truly feel that I'll overcome this with the treatment that is coursing through my veins, as well as the option for the Gleevec. Just need to cross whatever body parts will help so insurance approves that at an option, as well as my disability pay benefit... Worrying about finances has added such a major weight to my shoulders that I've had to accept that not everything is in my control, and that I have to hope for the best.
So many mantras about fear management have gone through my head over the last couple of weeks. Fear truly is the mind killer. I have to thank the author Frank Herbert for his perspective on that. And whoever had Babs Bunny from Tiny Tunes quote the first line from the girl from Nantucket... That always makes me smile. And being able to smile and laugh is the best mental medicine I have.
Please continue to send good vibes, and wish Ki the best of luck for his residency interviews coming up for the next few months. He's done a great job with his first interview (which was in Long Island at NUMC), and should really knock any of the coming interviews out of the park.
I had my 4th infusion of Yervoy this last Thursday, the last for the treatment cycle. My first follow up scan is slated for the 13th of October, and the results will be discussed with the oncologist on the 14th. With Yervoy, it's common to not see results until after a couple of months have passed, so my expectations for progress at this point are low, but I do expect to see good things on later scans.
That having been said, I feel pretty good, and have to keep reminding myself when I have chest pains, that they're most likely not inside of my lungs, since we don't really have nerve endings inside of our lungs... A nice fact pointed out by my med student partner and my oncologist. Funny how so many little niggly things seem to build up over time. Fortunately, none of those have been in the side effect category so far, and since none have manifested themselves, they're unlikely to.
I would definitely recommend Yervoy to IL2 treatments... Even though going through IL2 at least makes you feel like you're actively involved in the process to get better... Which to be honest helps the kind of mind that I seem to posses with regards to being more in charge of my healing.
Feeling a bit like a boat with less of an anchor is a weird place for me, but learning to think in a manner to make that so it isn't a negative thing is proving to be a good exercise. I truly feel that I'll overcome this with the treatment that is coursing through my veins, as well as the option for the Gleevec. Just need to cross whatever body parts will help so insurance approves that at an option, as well as my disability pay benefit... Worrying about finances has added such a major weight to my shoulders that I've had to accept that not everything is in my control, and that I have to hope for the best.
So many mantras about fear management have gone through my head over the last couple of weeks. Fear truly is the mind killer. I have to thank the author Frank Herbert for his perspective on that. And whoever had Babs Bunny from Tiny Tunes quote the first line from the girl from Nantucket... That always makes me smile. And being able to smile and laugh is the best mental medicine I have.
Please continue to send good vibes, and wish Ki the best of luck for his residency interviews coming up for the next few months. He's done a great job with his first interview (which was in Long Island at NUMC), and should really knock any of the coming interviews out of the park.
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