I'm going to answer my own post in hopes of moving it up so more people can see it. Is anyone out there working with Duke or UNC? If so, please let me know. I'm seeking a second opinion, and they are the two closest options for us. That said, can anyone recommend clinics in the Southeast that would be good for a second opinion? We can travel a little; it's just more awkward this summer because of family schedules and needs. If you seek evaluation from a more distant practice, does that practice coordinate with your "home" practice for chemo etc, or is everything at the second, distant site? FWIW, I'm on Medicare.
My CT scans taken yesterday show the main tumor appears stable (although no measurements are provided, so I can't really compare with the scans taken in March, which included very specific measurements). There is now some low-level ascites and appears to be some small lesions here and there in the abdomen. It's difficult to reconcile the info with the scans taken in March because the two radiologists wrote the reports very differently. The second report also spend a lot of time on my thyroid, which is scanned regularly by my endocrinologist, as well as the remnants of heart damage I sustained in fall 2020 due to myocarditis, probably linked to covid. Finally, I don't have CA 19-9 or CEA results back; indeed, I don't know whether they were ordered as part of Monday's draw, although the nurse who scheduled everything last week said she entered them on the list.
The oncologist consult Monday was very unsatisfactory. He seemed rushed and impatient, and I had no time to ask about HIPEC or MRI-LINAC. I asked him about removing an apparent growth that is pinching a ureter, and he snapped "No!" When I told him I wasn't ready to give up and wanted to keep working to control the cancer, he laughed at me, but then said he would keep working as long as I wanted him to. When he told me about the stable main tumor, he said that was good, because if it had grown, he would have advised me to stop chemo. What was the point in that? It almost sounded like a threat. I'm seriously frustrated with this guy. I have a palliative appointment Friday, and I'm hoping that MD can help me find another doc in this practice. Meanwhile, I want to pursue the second opinion elsewhere.
I know one guy from a small town in South Carolina who had his chemo treatment plan set up by Mayo/Jacksonville, but received all his infusions back home. Similar case with a guy in Florida, several hours from Mayo, who got chemo and primary oncology care in his small town. Mayo had no problem with it in either case. If you were in a bigger city and getting chemo at a bigger "more established" clinic, they might be the ones who want to "drive" instead of letting someone else like Mayo be in charge. Ego if nothing else at some of these places.
Aside from Duke and UNC, the only big names I can think of in the general region are Mayo, Emory, Vandy, UVA, and Johns Hopkins.
Houston has two major airports and is a hub for Southwest Airlines, so MD Anderson might be within your reach. They have a lot of clinical trials going on, some of which don't require much travel. Lots of affordable flights into the two major NYC airports with good pancreas programs nearby. Dr. Christopher Wolfgang at Langone ( https://nyulangone.org/doctors/1770519761/christopher-wolfgang ) is said to perform surgery that other docs won't attempt.
If you don't have a primary onco you like and trust, you're right to keep looking as long as you have the fight in you. Hang in there!
My sister was assessed and her care directed by Mayo, Rochester with neoadjuvant approach to Whipple. While she insisted on oncology in our hometown due to wanting to be with her cats, I would recommend, unless extenuating circumstances, that a patient move to the center of excellence and remain there in order to take advantage of the better knowledge, equipment and personnel. In the case of Mayo, the town is set up to support patients. A walking distance apartment is possible.
I fully recognize the difficulty and cost of the above approach.
I know one guy from a small town in South Carolina who had his chemo treatment plan set up by Mayo/Jacksonville, but received all his infusions back home. Similar case with a guy in Florida, several hours from Mayo, who got chemo and primary oncology care in his small town. Mayo had no problem with it in either case. If you were in a bigger city and getting chemo at a bigger "more established" clinic, they might be the ones who want to "drive" instead of letting someone else like Mayo be in charge. Ego if nothing else at some of these places.
Aside from Duke and UNC, the only big names I can think of in the general region are Mayo, Emory, Vandy, UVA, and Johns Hopkins.
Houston has two major airports and is a hub for Southwest Airlines, so MD Anderson might be within your reach. They have a lot of clinical trials going on, some of which don't require much travel. Lots of affordable flights into the two major NYC airports with good pancreas programs nearby. Dr. Christopher Wolfgang at Langone ( https://nyulangone.org/doctors/1770519761/christopher-wolfgang ) is said to perform surgery that other docs won't attempt.
If you don't have a primary onco you like and trust, you're right to keep looking as long as you have the fight in you. Hang in there!
Consider Massey Cancer Center of VCU in Richmond Virginia. They were the first Center in VA to get and use the Linac. So, there are two sites with this machine, VCU in Richmond and UVA in Charlottesville.
My sister was assessed and her care directed by Mayo, Rochester with neoadjuvant approach to Whipple. While she insisted on oncology in our hometown due to wanting to be with her cats, I would recommend, unless extenuating circumstances, that a patient move to the center of excellence and remain there in order to take advantage of the better knowledge, equipment and personnel. In the case of Mayo, the town is set up to support patients. A walking distance apartment is possible.
I fully recognize the difficulty and cost of the above approach.
Adding on to this one, many of the bigger centers are affiliated with some kind of low-cost lodging alternative, like the American Cancer Society's Hope Lodge. The intake coordinator at each center should be able to direct you to a lodging/travel specialist.
As far as the care goes... I totally agree with the comment from @mayoconnectuser1 above. When my dad was offered treatment for his mesothelioma from three different centers, a few people advised him that he could get the same meds at his hometown center, and sleep in his own bed every night without excessive travel. I voted for two other centers of excellence where we had affordable/free short-term lodging, but he declined both. In the end, although you might get the same MEDS at a smaller clinic, you might not get the same CARE, and this really came back to bite him. 🙁
I'm thankful and blessed to "endure" 6 hours on the road (sometimes split with an overnight stay, sometimes all there and back same day) every two weeks in exchange for the care, attention, and expertise I'm getting for my pancreas. Some insurance companies (probably not Medicare) may reimburse some of the travel expenses.
I had my chemotherapy at an NCI designated center of excellence that was a high volume center for treating pancreatic cancer. I wanted the higher level of expertise of oncologists whose sub-specialty is pancreatic cancer. That is rarely if ever found at a local, small clinic. I traveled 4'20" round trip to get my chemo every 15 days to treat stage IV disease. And 11 years later I have no regrets in investing the time traveling to and from the center of excellence to get my infusions.
Over the years I have mentored many pancreatic cancer patients. One in particular wanted infusions close to home rather than a 3 hour round trip to the pancreas center where she had a distal pancreatectomy and splenectomy. So she chose a small medical center near her home and was started on Folfirinox. She had severe reactions to it and by the fifth infusion, ended up in ICU for several days and a lengthy hospital stay requiring physical and occupational therapy. It turned out the head of oncology who was overseeing the treatment had no experience with the Folfirinox regimen. With each infusion and side effects and adverse events occurring, the oncologist never lowered the dosage. When one's life depends on getting the best possible care, it's but one reason why I prefer going to a high-volume center despite the inconvenience of travel.
I had my chemotherapy at an NCI designated center of excellence that was a high volume center for treating pancreatic cancer. I wanted the higher level of expertise of oncologists whose sub-specialty is pancreatic cancer. That is rarely if ever found at a local, small clinic. I traveled 4'20" round trip to get my chemo every 15 days to treat stage IV disease. And 11 years later I have no regrets in investing the time traveling to and from the center of excellence to get my infusions.
Over the years I have mentored many pancreatic cancer patients. One in particular wanted infusions close to home rather than a 3 hour round trip to the pancreas center where she had a distal pancreatectomy and splenectomy. So she chose a small medical center near her home and was started on Folfirinox. She had severe reactions to it and by the fifth infusion, ended up in ICU for several days and a lengthy hospital stay requiring physical and occupational therapy. It turned out the head of oncology who was overseeing the treatment had no experience with the Folfirinox regimen. With each infusion and side effects and adverse events occurring, the oncologist never lowered the dosage. When one's life depends on getting the best possible care, it's but one reason why I prefer going to a high-volume center despite the inconvenience of travel.
I had the original formulation of Folfirinox that was 20% higher concentration than (m)Folfirinox in use since 2018. I had 24 cycles in groups of six with alternating groups of just 5-FU/Leucovorin to lessen the cumulative effects of neuropathy from oxaliplatin. That alternate dosing helped in the peripheral neuropathy from becoming severe and permanent. It resolved but took several years.
I had the original formulation of Folfirinox that was 20% higher concentration than (m)Folfirinox in use since 2018. I had 24 cycles in groups of six with alternating groups of just 5-FU/Leucovorin to lessen the cumulative effects of neuropathy from oxaliplatin. That alternate dosing helped in the peripheral neuropathy from becoming severe and permanent. It resolved but took several years.
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I'm going to answer my own post in hopes of moving it up so more people can see it. Is anyone out there working with Duke or UNC? If so, please let me know. I'm seeking a second opinion, and they are the two closest options for us. That said, can anyone recommend clinics in the Southeast that would be good for a second opinion? We can travel a little; it's just more awkward this summer because of family schedules and needs. If you seek evaluation from a more distant practice, does that practice coordinate with your "home" practice for chemo etc, or is everything at the second, distant site? FWIW, I'm on Medicare.
My CT scans taken yesterday show the main tumor appears stable (although no measurements are provided, so I can't really compare with the scans taken in March, which included very specific measurements). There is now some low-level ascites and appears to be some small lesions here and there in the abdomen. It's difficult to reconcile the info with the scans taken in March because the two radiologists wrote the reports very differently. The second report also spend a lot of time on my thyroid, which is scanned regularly by my endocrinologist, as well as the remnants of heart damage I sustained in fall 2020 due to myocarditis, probably linked to covid. Finally, I don't have CA 19-9 or CEA results back; indeed, I don't know whether they were ordered as part of Monday's draw, although the nurse who scheduled everything last week said she entered them on the list.
The oncologist consult Monday was very unsatisfactory. He seemed rushed and impatient, and I had no time to ask about HIPEC or MRI-LINAC. I asked him about removing an apparent growth that is pinching a ureter, and he snapped "No!" When I told him I wasn't ready to give up and wanted to keep working to control the cancer, he laughed at me, but then said he would keep working as long as I wanted him to. When he told me about the stable main tumor, he said that was good, because if it had grown, he would have advised me to stop chemo. What was the point in that? It almost sounded like a threat. I'm seriously frustrated with this guy. I have a palliative appointment Friday, and I'm hoping that MD can help me find another doc in this practice. Meanwhile, I want to pursue the second opinion elsewhere.
Thanks for letting me vent (again).
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4 ReactionsI know one guy from a small town in South Carolina who had his chemo treatment plan set up by Mayo/Jacksonville, but received all his infusions back home. Similar case with a guy in Florida, several hours from Mayo, who got chemo and primary oncology care in his small town. Mayo had no problem with it in either case. If you were in a bigger city and getting chemo at a bigger "more established" clinic, they might be the ones who want to "drive" instead of letting someone else like Mayo be in charge. Ego if nothing else at some of these places.
Aside from Duke and UNC, the only big names I can think of in the general region are Mayo, Emory, Vandy, UVA, and Johns Hopkins.
Houston has two major airports and is a hub for Southwest Airlines, so MD Anderson might be within your reach. They have a lot of clinical trials going on, some of which don't require much travel. Lots of affordable flights into the two major NYC airports with good pancreas programs nearby. Dr. Christopher Wolfgang at Langone ( https://nyulangone.org/doctors/1770519761/christopher-wolfgang ) is said to perform surgery that other docs won't attempt.
If you don't have a primary onco you like and trust, you're right to keep looking as long as you have the fight in you. Hang in there!
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Hug
5 ReactionsI understand the difficulty of these decisions.
My sister was assessed and her care directed by Mayo, Rochester with neoadjuvant approach to Whipple. While she insisted on oncology in our hometown due to wanting to be with her cats, I would recommend, unless extenuating circumstances, that a patient move to the center of excellence and remain there in order to take advantage of the better knowledge, equipment and personnel. In the case of Mayo, the town is set up to support patients. A walking distance apartment is possible.
I fully recognize the difficulty and cost of the above approach.
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Helpful -
Hug
3 ReactionsConsider Massey Cancer Center of VCU in Richmond Virginia. They were the first Center in VA to get and use the Linac. So, there are two sites with this machine, VCU in Richmond and UVA in Charlottesville.
-
Like -
Helpful -
Hug
2 ReactionsAdding on to this one, many of the bigger centers are affiliated with some kind of low-cost lodging alternative, like the American Cancer Society's Hope Lodge. The intake coordinator at each center should be able to direct you to a lodging/travel specialist.
As far as the care goes... I totally agree with the comment from @mayoconnectuser1 above. When my dad was offered treatment for his mesothelioma from three different centers, a few people advised him that he could get the same meds at his hometown center, and sleep in his own bed every night without excessive travel. I voted for two other centers of excellence where we had affordable/free short-term lodging, but he declined both. In the end, although you might get the same MEDS at a smaller clinic, you might not get the same CARE, and this really came back to bite him. 🙁
I'm thankful and blessed to "endure" 6 hours on the road (sometimes split with an overnight stay, sometimes all there and back same day) every two weeks in exchange for the care, attention, and expertise I'm getting for my pancreas. Some insurance companies (probably not Medicare) may reimburse some of the travel expenses.
-
Like -
Helpful -
Hug
3 ReactionsI had my chemotherapy at an NCI designated center of excellence that was a high volume center for treating pancreatic cancer. I wanted the higher level of expertise of oncologists whose sub-specialty is pancreatic cancer. That is rarely if ever found at a local, small clinic. I traveled 4'20" round trip to get my chemo every 15 days to treat stage IV disease. And 11 years later I have no regrets in investing the time traveling to and from the center of excellence to get my infusions.
Over the years I have mentored many pancreatic cancer patients. One in particular wanted infusions close to home rather than a 3 hour round trip to the pancreas center where she had a distal pancreatectomy and splenectomy. So she chose a small medical center near her home and was started on Folfirinox. She had severe reactions to it and by the fifth infusion, ended up in ICU for several days and a lengthy hospital stay requiring physical and occupational therapy. It turned out the head of oncology who was overseeing the treatment had no experience with the Folfirinox regimen. With each infusion and side effects and adverse events occurring, the oncologist never lowered the dosage. When one's life depends on getting the best possible care, it's but one reason why I prefer going to a high-volume center despite the inconvenience of travel.
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6 ReactionsWhat a great story. Did you receive Folfrinox?
I had the original formulation of Folfirinox that was 20% higher concentration than (m)Folfirinox in use since 2018. I had 24 cycles in groups of six with alternating groups of just 5-FU/Leucovorin to lessen the cumulative effects of neuropathy from oxaliplatin. That alternate dosing helped in the peripheral neuropathy from becoming severe and permanent. It resolved but took several years.
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Helpful -
Hug
3 ReactionsThank you! Your story is so inspiring.
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1 ReactionI forgot to ask you, I am sorry - did you receive any naturopatic treatment during chemo (IV , nutrition support, immune system support etc? )