It's Scott's birthday today and while number 43 would not normally be considered a monumental number, Scott's feeling pretty stoked to be celebrating this year.
This Friday, Jan. 17, at 6 p.m., we're going to order pizza from Scott's favorite pizza place and throw back a beer. If you read this blog and pizza tastes good to you, feel free to come on by for a slice. If you need our address, email me at pamela.j.reeder@gmail.com. Feel free to bring the kids!
(Please no presents -- just your smiling faces and empty stomachs).
Tuesday, January 14, 2014
Tuesday, January 7, 2014
We saw the surgeon Friday and the exam room was full of white coats with big smiles. All the doctors are really happy with Scott's post-surgical progress, which pleases us a great deal, too. He's getting a lot of walking exercise and even clocked six miles one day. He's very motivated to do well — such a good patient.
We also saw the oncologist at Cedars on Monday. We discussed a lot of different options and have come up with a plan. In February, Scott will have a Gallium 68 PET/CT scan at UCLA (it's only available at four places in the U.S.). The Gallium 68 scan is the best technology available to detect tumors and metastasis. Scott's previous scans showed only regional metastasis, but the Gallium scan is better. If the scan only shows the little bit we know is left in his chest, then we may elect to do radiation to that area. We will not likely do any more chemotherapy as it is not very effective. Radiation is known to be pretty ineffective itself but the benefits of both chemo and radiation may not be easily measurably apparent. Other people who have had this type of cancer and who have had radiation and chemo have had a longer survivability than those who did not do radiation and chemo. This, however, is not great science. A randomized controlled trial using chemo and radiation would be best, but unfortunately, that is impossible with such a rare cancer. There just aren't enough subjects.
If the scan comes back with what we are expecting (that little hunk of tumor in his chest) then beyond possibly radiating that little piece, Scott will continue to get octreotide injections to try to keep the tumor from growing. Our oncologist at Cedars then suggests CT scans of the chest and MRIs of the abdomen every three months. If growth is detected in the coming months, years then we can think about doing a therapy called PRRT (peptide receptor radionuclide therapy). In other words, radioactive medication that goes right to the site of the tumor and binds with it. This medication is currently in a phase 3 trial at Cedars-Sinai but Scott is not a candidate. Only those with intestinal carcinoids are being included in the Cedars trial. But it's available in Europe and in Houston (for a hefty price). Our hope is that he will do well on the regular octreotide injections and then when/if he needs the PRRT, hopefully it will be more widely available in the U.S. Our doctor at Cedars thinks this is a good plan.
Sorry for all the mumbo jumbo details, but some people have asked me very specific questions, so I thought I'd try to break it all down. One thing to remember and to not lose sight of: SCOTT HAD A SUCCESSFUL SURGERY!!!! This alone has added many years to his life. Beyond that, it's important to remember that this is a chronic illness, not a death sentence. Much like other chronic illnesses (like diabetes for example), it must be managed. Scott is strong and has a great attitude. We will continue to fight this thing and will continue to look for the best therapies and best treatment options for both quality and longevity of life. And to quote Dr. Wolin again, "You don't have one foot in the grave and one on a banana peel." 2014 is going to be a great year for L-I-V-I-N!
We also saw the oncologist at Cedars on Monday. We discussed a lot of different options and have come up with a plan. In February, Scott will have a Gallium 68 PET/CT scan at UCLA (it's only available at four places in the U.S.). The Gallium 68 scan is the best technology available to detect tumors and metastasis. Scott's previous scans showed only regional metastasis, but the Gallium scan is better. If the scan only shows the little bit we know is left in his chest, then we may elect to do radiation to that area. We will not likely do any more chemotherapy as it is not very effective. Radiation is known to be pretty ineffective itself but the benefits of both chemo and radiation may not be easily measurably apparent. Other people who have had this type of cancer and who have had radiation and chemo have had a longer survivability than those who did not do radiation and chemo. This, however, is not great science. A randomized controlled trial using chemo and radiation would be best, but unfortunately, that is impossible with such a rare cancer. There just aren't enough subjects.
If the scan comes back with what we are expecting (that little hunk of tumor in his chest) then beyond possibly radiating that little piece, Scott will continue to get octreotide injections to try to keep the tumor from growing. Our oncologist at Cedars then suggests CT scans of the chest and MRIs of the abdomen every three months. If growth is detected in the coming months, years then we can think about doing a therapy called PRRT (peptide receptor radionuclide therapy). In other words, radioactive medication that goes right to the site of the tumor and binds with it. This medication is currently in a phase 3 trial at Cedars-Sinai but Scott is not a candidate. Only those with intestinal carcinoids are being included in the Cedars trial. But it's available in Europe and in Houston (for a hefty price). Our hope is that he will do well on the regular octreotide injections and then when/if he needs the PRRT, hopefully it will be more widely available in the U.S. Our doctor at Cedars thinks this is a good plan.
Sorry for all the mumbo jumbo details, but some people have asked me very specific questions, so I thought I'd try to break it all down. One thing to remember and to not lose sight of: SCOTT HAD A SUCCESSFUL SURGERY!!!! This alone has added many years to his life. Beyond that, it's important to remember that this is a chronic illness, not a death sentence. Much like other chronic illnesses (like diabetes for example), it must be managed. Scott is strong and has a great attitude. We will continue to fight this thing and will continue to look for the best therapies and best treatment options for both quality and longevity of life. And to quote Dr. Wolin again, "You don't have one foot in the grave and one on a banana peel." 2014 is going to be a great year for L-I-V-I-N!
Thursday, January 2, 2014
Happy New Year! We are feeling pretty hopeful about 2014 and have enjoyed a lot of mellow at-home time over the last couple of days. Scott has been getting out for good, long walks every day, and yesterday, New Year's Day, we ventured down to the beach for the first time since the surgery. It was so nice to let the dog run and Scott, too. Well, not run, but walk and talk to friends we ran into there.
We will see the surgeon tomorrow for a follow-up visit. And on Monday, Jan. 6, we will see the oncologist. Hopefully we will find out what's next regarding treatment for that last 5 percent. Scott's had a hoarse voice since the surgery, so we will also schedule a visit with an ear, nose and throat doctor later this month (there are some last bits of tumor around the laryngeal nerve). But his voice is slowly getting better.
Below are some pictures from the beach and some taken at home over the last couple of days.
Casey is stoked!
Maz digs low tide.
Enjoying a little tidepooling with Casey.
So fun to run into Scott's buddy Lisa, who was enjoying the low tide after a surf.
Us (and Casey)
Got this picture of Scott and his friends making their way around the point.
Such a nice visit with Ion and Yvette. Casey action shot.
Scott with our good buddies Ashley and Rob.
Maz and Vincent took a reluctant break from playing to pose for a picture.
We will see the surgeon tomorrow for a follow-up visit. And on Monday, Jan. 6, we will see the oncologist. Hopefully we will find out what's next regarding treatment for that last 5 percent. Scott's had a hoarse voice since the surgery, so we will also schedule a visit with an ear, nose and throat doctor later this month (there are some last bits of tumor around the laryngeal nerve). But his voice is slowly getting better.
Below are some pictures from the beach and some taken at home over the last couple of days.
Maz digs low tide.
Enjoying a little tidepooling with Casey.
So fun to run into Scott's buddy Lisa, who was enjoying the low tide after a surf.
Us (and Casey)
Got this picture of Scott and his friends making their way around the point.
Such a nice visit with Ion and Yvette. Casey action shot.
Scott with our good buddies Ashley and Rob.
Maz and Vincent took a reluctant break from playing to pose for a picture.
Subscribe to:
Posts (Atom)