@dwcowing
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- July 10, 2012 at 6:44 pm
I posted the following on the Ocu-Mel list, so apologies to those who read both!As a Class 2 patient, I am really not happy with this article. Okay, the description of the test is correct. The statistics are correct, and I acknowledge that they are grim. But many of the interpretations are overly bleak and negative (can you be overly bleak here? Yes!)."As for those in Class 2, 70 to 80 percent will die within five years. Their cancers will re-emerge as growths in the liver. For them, there is no cure and no way to slow the disease."There is no cure as yet. The clinical trials that Dr. Harbour mentions are among a number of approaches researchers are taking towards a cure. There are ways to slow the disease, particularly if metastasis is detected early. Knowing that one’s tumor is Class 2 means that one can be more frequently monitored (as I am), in hopes of detecting liver tumors when they are very small. Particularly when they are detected early, there are definitely treatments that will slow the progress of the disease. Some people are starting to talk about “living with” Stage 4 ocular melanoma as a possibility. If tumors are detected early, and treated, maybe one can live long enough for better treatments (or a cure) to be developed. I am hoping, by the way, that I can get into Dr. Harbour’s clinical trial when it starts up."The results will either give them reassurance that they will survive the cancer — or near certainty that they will die from it."I don’t consider 70-80% “near certainty”. Sorry. Maybe it’s only because I need to look at it this way for my own mental health, but I think the other 20-30% is significant.“Why would you want that information when we don’t have anything we can do for you?” Dr. Flaherty asked. “That is the fundamental question that has caused people to pause.”…Nothing has been shown to prolong the lives of Class 2 patients, said Dr. Evangelos S. Gragoudas, an ocular oncologist at Massachusetts Eye and Ear Infirmary. Not more frequent monitoring of the liver, not more aggressive or earlier chemotherapy. Nothing.Again, the idea that there is ‘nothing they can do’, and that nothing will prolong the lives of Class 2 patients is NOT true, according to what I’ve been hearing on this forum and at the Patient and Caregiver Symposium in Philadelphia.“… those in Class 2 have no real options other than to wait for the inevitable.”"…Class 2 patients, most of whom are doomed anyway"Gina Kolata (the writer) should definitely not consider a second career in genetic counseling.Dr. Harbour has a different view, and conveys it to his patients. He tells them that if they are Class 2 he will monitor them closely, doing liver scans every six months and blood tests in between, and will treat metastases with chemotherapy, delivered to the site of the cancer’s spread, as they occur.Yes, that is the type of approach that the leading clinicians treating O.M. are taking.Also, being diagnosed with a type 2 tumor has led me to explore other options of fighting cancer, in the hopes of making my system as strong as possible to fight off the cancerous cells, and the environment in my body as inhospitable as possible for them. This includes – currently – changing my diet, getting lots of exercise, meditating, taking some supplements, and seeing a Chinese medicine specialist associated with the oncology program at UCSF.In any case, if I weren't going to live for long, I wouldn't want to think about it as "waiting for the inevitable". What a fatalistic statement. In that case, maybe everyone's life is just "waiting for the inevitable". Everyone is going to die some day.
Deborah
DX ocular melanoma 6/30/11
Class 2 by Castle Biosciences test
proton beam treatment 8/11
Currently NED by liver MRI and chest CT -
- July 10, 2012 at 6:44 pm
I posted the following on the Ocu-Mel list, so apologies to those who read both!As a Class 2 patient, I am really not happy with this article. Okay, the description of the test is correct. The statistics are correct, and I acknowledge that they are grim. But many of the interpretations are overly bleak and negative (can you be overly bleak here? Yes!)."As for those in Class 2, 70 to 80 percent will die within five years. Their cancers will re-emerge as growths in the liver. For them, there is no cure and no way to slow the disease."There is no cure as yet. The clinical trials that Dr. Harbour mentions are among a number of approaches researchers are taking towards a cure. There are ways to slow the disease, particularly if metastasis is detected early. Knowing that one’s tumor is Class 2 means that one can be more frequently monitored (as I am), in hopes of detecting liver tumors when they are very small. Particularly when they are detected early, there are definitely treatments that will slow the progress of the disease. Some people are starting to talk about “living with” Stage 4 ocular melanoma as a possibility. If tumors are detected early, and treated, maybe one can live long enough for better treatments (or a cure) to be developed. I am hoping, by the way, that I can get into Dr. Harbour’s clinical trial when it starts up."The results will either give them reassurance that they will survive the cancer — or near certainty that they will die from it."I don’t consider 70-80% “near certainty”. Sorry. Maybe it’s only because I need to look at it this way for my own mental health, but I think the other 20-30% is significant.“Why would you want that information when we don’t have anything we can do for you?” Dr. Flaherty asked. “That is the fundamental question that has caused people to pause.”…Nothing has been shown to prolong the lives of Class 2 patients, said Dr. Evangelos S. Gragoudas, an ocular oncologist at Massachusetts Eye and Ear Infirmary. Not more frequent monitoring of the liver, not more aggressive or earlier chemotherapy. Nothing.Again, the idea that there is ‘nothing they can do’, and that nothing will prolong the lives of Class 2 patients is NOT true, according to what I’ve been hearing on this forum and at the Patient and Caregiver Symposium in Philadelphia.“… those in Class 2 have no real options other than to wait for the inevitable.”"…Class 2 patients, most of whom are doomed anyway"Gina Kolata (the writer) should definitely not consider a second career in genetic counseling.Dr. Harbour has a different view, and conveys it to his patients. He tells them that if they are Class 2 he will monitor them closely, doing liver scans every six months and blood tests in between, and will treat metastases with chemotherapy, delivered to the site of the cancer’s spread, as they occur.Yes, that is the type of approach that the leading clinicians treating O.M. are taking.Also, being diagnosed with a type 2 tumor has led me to explore other options of fighting cancer, in the hopes of making my system as strong as possible to fight off the cancerous cells, and the environment in my body as inhospitable as possible for them. This includes – currently – changing my diet, getting lots of exercise, meditating, taking some supplements, and seeing a Chinese medicine specialist associated with the oncology program at UCSF.In any case, if I weren't going to live for long, I wouldn't want to think about it as "waiting for the inevitable". What a fatalistic statement. In that case, maybe everyone's life is just "waiting for the inevitable". Everyone is going to die some day.
Deborah
DX ocular melanoma 6/30/11
Class 2 by Castle Biosciences test
proton beam treatment 8/11
Currently NED by liver MRI and chest CT -
- July 10, 2012 at 6:44 pm
I posted the following on the Ocu-Mel list, so apologies to those who read both!As a Class 2 patient, I am really not happy with this article. Okay, the description of the test is correct. The statistics are correct, and I acknowledge that they are grim. But many of the interpretations are overly bleak and negative (can you be overly bleak here? Yes!)."As for those in Class 2, 70 to 80 percent will die within five years. Their cancers will re-emerge as growths in the liver. For them, there is no cure and no way to slow the disease."There is no cure as yet. The clinical trials that Dr. Harbour mentions are among a number of approaches researchers are taking towards a cure. There are ways to slow the disease, particularly if metastasis is detected early. Knowing that one’s tumor is Class 2 means that one can be more frequently monitored (as I am), in hopes of detecting liver tumors when they are very small. Particularly when they are detected early, there are definitely treatments that will slow the progress of the disease. Some people are starting to talk about “living with” Stage 4 ocular melanoma as a possibility. If tumors are detected early, and treated, maybe one can live long enough for better treatments (or a cure) to be developed. I am hoping, by the way, that I can get into Dr. Harbour’s clinical trial when it starts up."The results will either give them reassurance that they will survive the cancer — or near certainty that they will die from it."I don’t consider 70-80% “near certainty”. Sorry. Maybe it’s only because I need to look at it this way for my own mental health, but I think the other 20-30% is significant.“Why would you want that information when we don’t have anything we can do for you?” Dr. Flaherty asked. “That is the fundamental question that has caused people to pause.”…Nothing has been shown to prolong the lives of Class 2 patients, said Dr. Evangelos S. Gragoudas, an ocular oncologist at Massachusetts Eye and Ear Infirmary. Not more frequent monitoring of the liver, not more aggressive or earlier chemotherapy. Nothing.Again, the idea that there is ‘nothing they can do’, and that nothing will prolong the lives of Class 2 patients is NOT true, according to what I’ve been hearing on this forum and at the Patient and Caregiver Symposium in Philadelphia.“… those in Class 2 have no real options other than to wait for the inevitable.”"…Class 2 patients, most of whom are doomed anyway"Gina Kolata (the writer) should definitely not consider a second career in genetic counseling.Dr. Harbour has a different view, and conveys it to his patients. He tells them that if they are Class 2 he will monitor them closely, doing liver scans every six months and blood tests in between, and will treat metastases with chemotherapy, delivered to the site of the cancer’s spread, as they occur.Yes, that is the type of approach that the leading clinicians treating O.M. are taking.Also, being diagnosed with a type 2 tumor has led me to explore other options of fighting cancer, in the hopes of making my system as strong as possible to fight off the cancerous cells, and the environment in my body as inhospitable as possible for them. This includes – currently – changing my diet, getting lots of exercise, meditating, taking some supplements, and seeing a Chinese medicine specialist associated with the oncology program at UCSF.In any case, if I weren't going to live for long, I wouldn't want to think about it as "waiting for the inevitable". What a fatalistic statement. In that case, maybe everyone's life is just "waiting for the inevitable". Everyone is going to die some day.
Deborah
DX ocular melanoma 6/30/11
Class 2 by Castle Biosciences test
proton beam treatment 8/11
Currently NED by liver MRI and chest CT -
- March 13, 2013 at 9:47 pm
I was referred to the UCSF ocular oncologist, Dr. Paul Stewart, for a second opinion when my ocular melanoma was diagnosed a year and a half ago. (Apparently mine was a fairly straightforward diagnosis, but it's such a rare disease that my health plan wanted a second opinion.) I found him very knowledgeable and very personable, and everyone in his office professional, skillful, and caring.
I am also being followed at UCSF's melanoma clinic for mets – thankfully no mets have been found at this point! Although they don't have the volume of OM patients that Dr. Sato does, as his clinic is the main OM clinic in the country, they do have some smart, good, doctors who keep up on the current research on OM, and are aware of the differences between it and cutaneous melanoma.
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- March 13, 2013 at 9:47 pm
I was referred to the UCSF ocular oncologist, Dr. Paul Stewart, for a second opinion when my ocular melanoma was diagnosed a year and a half ago. (Apparently mine was a fairly straightforward diagnosis, but it's such a rare disease that my health plan wanted a second opinion.) I found him very knowledgeable and very personable, and everyone in his office professional, skillful, and caring.
I am also being followed at UCSF's melanoma clinic for mets – thankfully no mets have been found at this point! Although they don't have the volume of OM patients that Dr. Sato does, as his clinic is the main OM clinic in the country, they do have some smart, good, doctors who keep up on the current research on OM, and are aware of the differences between it and cutaneous melanoma.
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- March 13, 2013 at 9:47 pm
I was referred to the UCSF ocular oncologist, Dr. Paul Stewart, for a second opinion when my ocular melanoma was diagnosed a year and a half ago. (Apparently mine was a fairly straightforward diagnosis, but it's such a rare disease that my health plan wanted a second opinion.) I found him very knowledgeable and very personable, and everyone in his office professional, skillful, and caring.
I am also being followed at UCSF's melanoma clinic for mets – thankfully no mets have been found at this point! Although they don't have the volume of OM patients that Dr. Sato does, as his clinic is the main OM clinic in the country, they do have some smart, good, doctors who keep up on the current research on OM, and are aware of the differences between it and cutaneous melanoma.
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- July 13, 2012 at 7:41 pm
Esther,
Points well taken (and well expressed)! Thank you!
One additional comment – although the hard facts and data are what will lead to a solution, on an individual level hope is critical, and not only leads to a better life but may possibly prolong life by helping to strengthen the immune system.
Anne Marie,
I agree, my real problem with the article was the tone.
Deborah
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- July 13, 2012 at 7:41 pm
Esther,
Points well taken (and well expressed)! Thank you!
One additional comment – although the hard facts and data are what will lead to a solution, on an individual level hope is critical, and not only leads to a better life but may possibly prolong life by helping to strengthen the immune system.
Anne Marie,
I agree, my real problem with the article was the tone.
Deborah
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- July 13, 2012 at 7:41 pm
Esther,
Points well taken (and well expressed)! Thank you!
One additional comment – although the hard facts and data are what will lead to a solution, on an individual level hope is critical, and not only leads to a better life but may possibly prolong life by helping to strengthen the immune system.
Anne Marie,
I agree, my real problem with the article was the tone.
Deborah
