› Forums › General Melanoma Community › Md Anderson – my status
- This topic has 96 replies, 22 voices, and was last updated 10 years, 2 months ago by
Brent Morris.
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- October 2, 2015 at 12:37 pm
Well it's been another week of no treatment. Like I mentioned the doc would not let me in the trial. He wanted to start the keytruda abraxane last Friday. It is interesting mda has what is called a business center or financials to get such things approved. I was told Friday it would probably take a couple hours and treatment would be Friday or that weekend. Monday I was told 48 hours by the bs and my insurance. Tuesday I was told it was still in medical review. Wednesday the bs said it could be 10 to 15 business days.
The melanoma group although the keytruda was approved they refused to give me a dose to get me by until the combo treatment got approved. They said the doc wants me to do both.
Apparently insurance has their own doc's. One of the latter stages is what they call a peer to peer where the insurance doc talks to your doc. Instead of having to wait weeks I would have thought a good team would get that accelerated to either get it approved or denied. But maybe that's not possible. I dunno but I'm pretty sure it is.
Anyway I'm very upset with the mda melanoma team. At least the group I have with dr Diab. By not even giving me my regular pd1 I had to travel back home missing my very important meeting with the neurosurgeon. It has been 4 weeks overdue since I've got my pd1. So yes the doc correctly saw I was in worse shape than when he first saw me a few weeks before. Plus I lost a lot of money with the nice apartment we had rented and air fare but money is minor issues compared to the important stuff.
Anyway I'm back home. I've requested via their app to reschedule the neurosurgeon appointment and treatment that never happened for the last week of this month. I'm not sure yet if I'm going back a third time or not. So far I've been hosed twice by mda in my opinion. Also my local doc is totally against this treatment the mda doc has changed to. Their refusal to work with me to get just pd1 really upsets me. So I dunno. But my back and legs hurt a lot it has become a problem just trying to walk so I dunno. That wasn't anywhere near this bad before I went to mda. So I dunno. I'm quite depressed, frustrated and upset.
Artie
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- October 2, 2015 at 1:24 pm
Artie,
Really sorry to hear about the issues you are having with MD Anderson. Seems totally unacceptable to me. Have you considered alternate treatment locations? Since you were already travelling to Houston, seems it might be worth considering other locations. My doctor recently made a move from Wake Forest Baptist Health to Duke. I was very happy with the care I received at Wake Forest but I am following my doctor to Duke. My only point is that if something seems off with your experience, trust your gut and find an alternative.
Kevin
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- October 2, 2015 at 1:24 pm
Artie,
Really sorry to hear about the issues you are having with MD Anderson. Seems totally unacceptable to me. Have you considered alternate treatment locations? Since you were already travelling to Houston, seems it might be worth considering other locations. My doctor recently made a move from Wake Forest Baptist Health to Duke. I was very happy with the care I received at Wake Forest but I am following my doctor to Duke. My only point is that if something seems off with your experience, trust your gut and find an alternative.
Kevin
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- October 2, 2015 at 1:24 pm
Artie,
Really sorry to hear about the issues you are having with MD Anderson. Seems totally unacceptable to me. Have you considered alternate treatment locations? Since you were already travelling to Houston, seems it might be worth considering other locations. My doctor recently made a move from Wake Forest Baptist Health to Duke. I was very happy with the care I received at Wake Forest but I am following my doctor to Duke. My only point is that if something seems off with your experience, trust your gut and find an alternative.
Kevin
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- October 2, 2015 at 4:06 pm
Thanks scooby
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- October 2, 2015 at 4:06 pm
Thanks scooby
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- October 2, 2015 at 4:06 pm
Thanks scooby
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- October 2, 2015 at 3:46 pm
Thanks Kevin. I'm thinking about that. This is the 3rd place I've been to since May and didn't get treatment. So I'm actually thinking about that huntsman place in Utah I keep seeing advertised. It was created by a guy with cancer. Looks like they have a lot of melanoma trials. But I'm still leaning on the idea of giving mda one more try. Most particularly to see the neurosurgeon about my spine and compare what he says to what the one said here in saint Louis.
Artie
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- October 2, 2015 at 3:46 pm
Thanks Kevin. I'm thinking about that. This is the 3rd place I've been to since May and didn't get treatment. So I'm actually thinking about that huntsman place in Utah I keep seeing advertised. It was created by a guy with cancer. Looks like they have a lot of melanoma trials. But I'm still leaning on the idea of giving mda one more try. Most particularly to see the neurosurgeon about my spine and compare what he says to what the one said here in saint Louis.
Artie
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- October 2, 2015 at 3:46 pm
Thanks Kevin. I'm thinking about that. This is the 3rd place I've been to since May and didn't get treatment. So I'm actually thinking about that huntsman place in Utah I keep seeing advertised. It was created by a guy with cancer. Looks like they have a lot of melanoma trials. But I'm still leaning on the idea of giving mda one more try. Most particularly to see the neurosurgeon about my spine and compare what he says to what the one said here in saint Louis.
Artie
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- October 2, 2015 at 2:12 pm
Artie – Are you able to get on the NIVO/IPI combo?
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- October 2, 2015 at 3:51 pm
Not really. My mayo and Chicago doc mentioned it but once they thought on it more they figured they couldn't get insurance to pay and they had other options. Granted those options ended up being chemo so I declined. Since I was a total non responder to ipi they weren't sure it was worth the toxic risks. My saint Louis doc said no way for me. It would be way too severe for me.
Artie
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- October 2, 2015 at 3:51 pm
Not really. My mayo and Chicago doc mentioned it but once they thought on it more they figured they couldn't get insurance to pay and they had other options. Granted those options ended up being chemo so I declined. Since I was a total non responder to ipi they weren't sure it was worth the toxic risks. My saint Louis doc said no way for me. It would be way too severe for me.
Artie
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- October 2, 2015 at 3:51 pm
Not really. My mayo and Chicago doc mentioned it but once they thought on it more they figured they couldn't get insurance to pay and they had other options. Granted those options ended up being chemo so I declined. Since I was a total non responder to ipi they weren't sure it was worth the toxic risks. My saint Louis doc said no way for me. It would be way too severe for me.
Artie
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- October 2, 2015 at 2:15 pm
I am so outraged by this. Certainly there has to be someone out there that can help! Artie is willing to FIGHT, and if that means money, travel and additional stress, he is willing to take that on. Artie – can you call the Chicago doctor that was willing to help a few months back? Do they have a patient advocate group at MDA?
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- October 2, 2015 at 2:15 pm
I am so outraged by this. Certainly there has to be someone out there that can help! Artie is willing to FIGHT, and if that means money, travel and additional stress, he is willing to take that on. Artie – can you call the Chicago doctor that was willing to help a few months back? Do they have a patient advocate group at MDA?
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- October 2, 2015 at 2:15 pm
I am so outraged by this. Certainly there has to be someone out there that can help! Artie is willing to FIGHT, and if that means money, travel and additional stress, he is willing to take that on. Artie – can you call the Chicago doctor that was willing to help a few months back? Do they have a patient advocate group at MDA?
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- October 2, 2015 at 3:57 pm
The patient mda advocate group didn't see it the way I see it. They basically said it was pending insurance medical review so had to wait. That I was scheduled for October 16 treatment. Which is also true. That would have been the second dose if it had started on the 25th.
The last time I talked to the Chicago doc he wanted me on chemo while I wait for an immunotherapy opening. My saint Louis doc said that would be too rough on me and by the time a slot opened I would not be in shape to qualify for it or any other trial. But that is an idea to check and see if he's got anything else.
Artie
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- October 2, 2015 at 3:57 pm
The patient mda advocate group didn't see it the way I see it. They basically said it was pending insurance medical review so had to wait. That I was scheduled for October 16 treatment. Which is also true. That would have been the second dose if it had started on the 25th.
The last time I talked to the Chicago doc he wanted me on chemo while I wait for an immunotherapy opening. My saint Louis doc said that would be too rough on me and by the time a slot opened I would not be in shape to qualify for it or any other trial. But that is an idea to check and see if he's got anything else.
Artie
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- October 2, 2015 at 3:57 pm
The patient mda advocate group didn't see it the way I see it. They basically said it was pending insurance medical review so had to wait. That I was scheduled for October 16 treatment. Which is also true. That would have been the second dose if it had started on the 25th.
The last time I talked to the Chicago doc he wanted me on chemo while I wait for an immunotherapy opening. My saint Louis doc said that would be too rough on me and by the time a slot opened I would not be in shape to qualify for it or any other trial. But that is an idea to check and see if he's got anything else.
Artie
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- October 2, 2015 at 3:28 pm
Artie, I bet you are the only one having this kind of experience there. I'm so sorry to hear this is continuing. I hope all your efforts will pay off soon.
My two treatment centers both use the "MyChart" app. My docs have been responsive to emails through the app (even if it's often their nurse who who responds). I haven't had to pester or harass them through the app's 'email my doctor' function. Maybe your doc deserves a load of frustration or anger being dropped on them through the app. If the doctor cares or has time to care, they should try to block and tackle for you, rather than be upset or offended.I hope you get some relief soon, either from your local docs or, somehow MDA. I did get a second opinion at MDA once — it did seem a bit impersonal and it also ended up feeling like a ripoff in that they could have told me in 2 minutes (or maybe even 1) over the phone that I very clearly wouldn't qualify for the TIL trial I was asking about, something a trial coordinator at a smaller cancer center could have (and often has!) told me over the phone.
Are they actually too big for their doctors to follow up on their patients' treatment and make sure they are actually on track to get treated? And to break knees in the different offices to make that happen if things get stalled? <opinion> Even though the business office and the like are "separate" from the doctor, they're not separate if the result is you not getting care. Especially if the doctor knowingly makes a a treatment choice that puts you at particular or extraordinary mercy or risk of those offices. In my opinion the doctor should either know better or follow up to make sure things happen.
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- October 2, 2015 at 3:28 pm
Artie, I bet you are the only one having this kind of experience there. I'm so sorry to hear this is continuing. I hope all your efforts will pay off soon.
My two treatment centers both use the "MyChart" app. My docs have been responsive to emails through the app (even if it's often their nurse who who responds). I haven't had to pester or harass them through the app's 'email my doctor' function. Maybe your doc deserves a load of frustration or anger being dropped on them through the app. If the doctor cares or has time to care, they should try to block and tackle for you, rather than be upset or offended.I hope you get some relief soon, either from your local docs or, somehow MDA. I did get a second opinion at MDA once — it did seem a bit impersonal and it also ended up feeling like a ripoff in that they could have told me in 2 minutes (or maybe even 1) over the phone that I very clearly wouldn't qualify for the TIL trial I was asking about, something a trial coordinator at a smaller cancer center could have (and often has!) told me over the phone.
Are they actually too big for their doctors to follow up on their patients' treatment and make sure they are actually on track to get treated? And to break knees in the different offices to make that happen if things get stalled? <opinion> Even though the business office and the like are "separate" from the doctor, they're not separate if the result is you not getting care. Especially if the doctor knowingly makes a a treatment choice that puts you at particular or extraordinary mercy or risk of those offices. In my opinion the doctor should either know better or follow up to make sure things happen.
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- October 2, 2015 at 3:28 pm
Artie, I bet you are the only one having this kind of experience there. I'm so sorry to hear this is continuing. I hope all your efforts will pay off soon.
My two treatment centers both use the "MyChart" app. My docs have been responsive to emails through the app (even if it's often their nurse who who responds). I haven't had to pester or harass them through the app's 'email my doctor' function. Maybe your doc deserves a load of frustration or anger being dropped on them through the app. If the doctor cares or has time to care, they should try to block and tackle for you, rather than be upset or offended.I hope you get some relief soon, either from your local docs or, somehow MDA. I did get a second opinion at MDA once — it did seem a bit impersonal and it also ended up feeling like a ripoff in that they could have told me in 2 minutes (or maybe even 1) over the phone that I very clearly wouldn't qualify for the TIL trial I was asking about, something a trial coordinator at a smaller cancer center could have (and often has!) told me over the phone.
Are they actually too big for their doctors to follow up on their patients' treatment and make sure they are actually on track to get treated? And to break knees in the different offices to make that happen if things get stalled? <opinion> Even though the business office and the like are "separate" from the doctor, they're not separate if the result is you not getting care. Especially if the doctor knowingly makes a a treatment choice that puts you at particular or extraordinary mercy or risk of those offices. In my opinion the doctor should either know better or follow up to make sure things happen.
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- October 2, 2015 at 3:38 pm
Good clarity on your update there Kyle.
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- October 2, 2015 at 3:38 pm
Good clarity on your update there Kyle.
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- October 2, 2015 at 3:38 pm
Good clarity on your update there Kyle.
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- October 2, 2015 at 4:02 pm
Thanks Kyle,
The mda app email option when I try to send an email message actually has me going to a different doctor. So I haven't sent anything yet. I actually would be surprised if the doc was aware of any issue with my treatment. Now his head nurse probably does because I think that's who the nurse said she talked to about doing only pd1 while waiting for full approval of the combo.
Artie
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- October 2, 2015 at 4:02 pm
Thanks Kyle,
The mda app email option when I try to send an email message actually has me going to a different doctor. So I haven't sent anything yet. I actually would be surprised if the doc was aware of any issue with my treatment. Now his head nurse probably does because I think that's who the nurse said she talked to about doing only pd1 while waiting for full approval of the combo.
Artie
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- October 2, 2015 at 4:02 pm
Thanks Kyle,
The mda app email option when I try to send an email message actually has me going to a different doctor. So I haven't sent anything yet. I actually would be surprised if the doc was aware of any issue with my treatment. Now his head nurse probably does because I think that's who the nurse said she talked to about doing only pd1 while waiting for full approval of the combo.
Artie
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- October 4, 2015 at 11:22 am
My experience is get past the nurse Artie. When I called and advised the nurse of multiple concerns she said there was nothing that needed to be done until our next appointment. I called several times. When we finally got in for appointment the doctor's chin almost dropped to the ground when he saw my husband. He said he had no clue what had been going on. Bypass the nurse and go directly to the doctor and do not wait. Sometimes medical etiquette must go out the window. My two cents worth. Stay strong Artie.
PS. I love nurses.
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- October 4, 2015 at 11:22 am
My experience is get past the nurse Artie. When I called and advised the nurse of multiple concerns she said there was nothing that needed to be done until our next appointment. I called several times. When we finally got in for appointment the doctor's chin almost dropped to the ground when he saw my husband. He said he had no clue what had been going on. Bypass the nurse and go directly to the doctor and do not wait. Sometimes medical etiquette must go out the window. My two cents worth. Stay strong Artie.
PS. I love nurses.
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- October 4, 2015 at 11:22 am
My experience is get past the nurse Artie. When I called and advised the nurse of multiple concerns she said there was nothing that needed to be done until our next appointment. I called several times. When we finally got in for appointment the doctor's chin almost dropped to the ground when he saw my husband. He said he had no clue what had been going on. Bypass the nurse and go directly to the doctor and do not wait. Sometimes medical etiquette must go out the window. My two cents worth. Stay strong Artie.
PS. I love nurses.
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- October 2, 2015 at 6:36 pm
Artie, I'm sorry to hear about your experience. I've had a number of peer-to-peer review situations at Penn (for treatments and scans) and they've all been resolved within 24 hours. I don't think it is because my insurance co is so wonderful, but rather the doctors and nurse practitioners aggressively following-up. Others have given you good suggestions. If you choose to stay with MDA, I would definitely contact Diab directly.
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- October 2, 2015 at 6:36 pm
Artie, I'm sorry to hear about your experience. I've had a number of peer-to-peer review situations at Penn (for treatments and scans) and they've all been resolved within 24 hours. I don't think it is because my insurance co is so wonderful, but rather the doctors and nurse practitioners aggressively following-up. Others have given you good suggestions. If you choose to stay with MDA, I would definitely contact Diab directly.
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- October 2, 2015 at 6:36 pm
Artie, I'm sorry to hear about your experience. I've had a number of peer-to-peer review situations at Penn (for treatments and scans) and they've all been resolved within 24 hours. I don't think it is because my insurance co is so wonderful, but rather the doctors and nurse practitioners aggressively following-up. Others have given you good suggestions. If you choose to stay with MDA, I would definitely contact Diab directly.
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- October 2, 2015 at 6:38 pm
Artie have you thought about the Angeles Clinic that Dr. Omid Hamid is part of. I follow him on twitter and he seems to be very impressive and knowledgeable and they seem to be doing a lot of trials at his clinic. The second person I might try to contact would be Dr. Jedd Wolchok of Memorial sloan-Kettering cancer center New York. I know you must be super frustrated at this point, wishing I could be of more help!!!! Hang in there!!! Ed
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- October 2, 2015 at 6:38 pm
Artie have you thought about the Angeles Clinic that Dr. Omid Hamid is part of. I follow him on twitter and he seems to be very impressive and knowledgeable and they seem to be doing a lot of trials at his clinic. The second person I might try to contact would be Dr. Jedd Wolchok of Memorial sloan-Kettering cancer center New York. I know you must be super frustrated at this point, wishing I could be of more help!!!! Hang in there!!! Ed
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- October 2, 2015 at 11:24 pm
Hi Artie,
I totally agree with Ed! Dr. Hamid is my husband's specialist and he is amazing. He has saved my husband's life several times with his guidance and quick response time. He has also been spot on with my husband's treatment (surgery, timeline, immunotherapy, etc.). He is an incredibly smart man and really cares about his patients.
So sorry you are having such a negative and frustrating experience. I really hope they are resolved quickly and you get the treatment you need asap!
Best,
Katie
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- October 2, 2015 at 11:24 pm
Hi Artie,
I totally agree with Ed! Dr. Hamid is my husband's specialist and he is amazing. He has saved my husband's life several times with his guidance and quick response time. He has also been spot on with my husband's treatment (surgery, timeline, immunotherapy, etc.). He is an incredibly smart man and really cares about his patients.
So sorry you are having such a negative and frustrating experience. I really hope they are resolved quickly and you get the treatment you need asap!
Best,
Katie
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- October 2, 2015 at 11:24 pm
Hi Artie,
I totally agree with Ed! Dr. Hamid is my husband's specialist and he is amazing. He has saved my husband's life several times with his guidance and quick response time. He has also been spot on with my husband's treatment (surgery, timeline, immunotherapy, etc.). He is an incredibly smart man and really cares about his patients.
So sorry you are having such a negative and frustrating experience. I really hope they are resolved quickly and you get the treatment you need asap!
Best,
Katie
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- October 2, 2015 at 6:38 pm
Artie have you thought about the Angeles Clinic that Dr. Omid Hamid is part of. I follow him on twitter and he seems to be very impressive and knowledgeable and they seem to be doing a lot of trials at his clinic. The second person I might try to contact would be Dr. Jedd Wolchok of Memorial sloan-Kettering cancer center New York. I know you must be super frustrated at this point, wishing I could be of more help!!!! Hang in there!!! Ed
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- October 2, 2015 at 7:15 pm
Oh, Artie! All I can say is that I am so sorry. You clearly are not getting the care you should. That is such a shame and you have fought so hard and long for it. Like the others, I agree it seems as though it is time to seek care elsewhere…either locally or further afield. I have heard of good melanoma care at Huntsman. Weber should be able to see patients soon at NYU and they also have Dr. Pavlick who is great. Not to mention all the other melanoma big dogs in the New York area. Then too, should you head to California there is certainly Dr. Hamid or Ribas out that way. I am just so sorry. You do not deserve any of this. Hang in there. You are tougher than any super spy or knight, whether of round table or Jedi persuasion, ever could be. Love, c
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- October 2, 2015 at 7:15 pm
Oh, Artie! All I can say is that I am so sorry. You clearly are not getting the care you should. That is such a shame and you have fought so hard and long for it. Like the others, I agree it seems as though it is time to seek care elsewhere…either locally or further afield. I have heard of good melanoma care at Huntsman. Weber should be able to see patients soon at NYU and they also have Dr. Pavlick who is great. Not to mention all the other melanoma big dogs in the New York area. Then too, should you head to California there is certainly Dr. Hamid or Ribas out that way. I am just so sorry. You do not deserve any of this. Hang in there. You are tougher than any super spy or knight, whether of round table or Jedi persuasion, ever could be. Love, c
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- October 2, 2015 at 7:15 pm
Oh, Artie! All I can say is that I am so sorry. You clearly are not getting the care you should. That is such a shame and you have fought so hard and long for it. Like the others, I agree it seems as though it is time to seek care elsewhere…either locally or further afield. I have heard of good melanoma care at Huntsman. Weber should be able to see patients soon at NYU and they also have Dr. Pavlick who is great. Not to mention all the other melanoma big dogs in the New York area. Then too, should you head to California there is certainly Dr. Hamid or Ribas out that way. I am just so sorry. You do not deserve any of this. Hang in there. You are tougher than any super spy or knight, whether of round table or Jedi persuasion, ever could be. Love, c
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- October 2, 2015 at 7:16 pm
Artie – I am sorry that I don't have any practical suggestions for you. It feels at times that these medical institutions were designed to belittle us and make us feel small and unimportant. You are highly important to so many people. I wish there were a way to convey that to MDA. I hope things turn around for you really soon, Artie. Hang in there!
Love,
Maggie
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- October 2, 2015 at 7:16 pm
Artie – I am sorry that I don't have any practical suggestions for you. It feels at times that these medical institutions were designed to belittle us and make us feel small and unimportant. You are highly important to so many people. I wish there were a way to convey that to MDA. I hope things turn around for you really soon, Artie. Hang in there!
Love,
Maggie
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- October 2, 2015 at 7:16 pm
Artie – I am sorry that I don't have any practical suggestions for you. It feels at times that these medical institutions were designed to belittle us and make us feel small and unimportant. You are highly important to so many people. I wish there were a way to convey that to MDA. I hope things turn around for you really soon, Artie. Hang in there!
Love,
Maggie
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- October 2, 2015 at 7:16 pm
Hi Artie,
I'm just so sorry to hear what a horrible experience you have had, can't begin to imagine the frustration on your part. It's hard to even tell if it's a function/factor of this particular dr.s group or the organization as a whole. I wish I had more to offer in way of suggestions, but sounds like you've been up against a brick wall or a gatekeeper.
My thoughts are with you.
Jackie
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- October 2, 2015 at 7:16 pm
Hi Artie,
I'm just so sorry to hear what a horrible experience you have had, can't begin to imagine the frustration on your part. It's hard to even tell if it's a function/factor of this particular dr.s group or the organization as a whole. I wish I had more to offer in way of suggestions, but sounds like you've been up against a brick wall or a gatekeeper.
My thoughts are with you.
Jackie
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- October 2, 2015 at 7:16 pm
Hi Artie,
I'm just so sorry to hear what a horrible experience you have had, can't begin to imagine the frustration on your part. It's hard to even tell if it's a function/factor of this particular dr.s group or the organization as a whole. I wish I had more to offer in way of suggestions, but sounds like you've been up against a brick wall or a gatekeeper.
My thoughts are with you.
Jackie
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- October 2, 2015 at 7:44 pm
Artie,
Maybe New York City is too far for you, but by any chance if it possible, get an opinion from MSKCC.
I do know what to say to cheer you up. You are a fighter and way far better than most of us. I hope you have good rest and lighter heart.
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- October 3, 2015 at 3:50 am
Dear Artie I know from previous experience at MDA how dysfunctional they can be. Size does matter. I hope that you can resolve the issues with them but I agree with seeking alternate resources. I did send this message to them and I am hoping others with help by sending other messages to them as well . If you want I will call 60 minute, the Today show and contact Buzzfeed. Here is the message I sent:
How can you pompous jerks deny efficient and essential care to my friend with melanoma who has come to your clinic desparetly seeking your help? He has received no care for 4 weeks while in your care as you scratch your butts. It is unconscionable. But, now it is also widely know via the patient forum on MRF. I know you don't care but the beginning of the end of your hegemony is with this patient and the many others who will come forward with stories of your ineptitude and malfeasance. The question is why shouldn't this case be examined on Buzz Feed, 60 minutes and the Today show? Looks like the Moon Shot is a Pot Shot for the money of those who know no better. The M D Anderson Cancer Center crosses out the patient not the cancer.
Keep at It. May the Force Be With You. So are we. Brent
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- October 3, 2015 at 3:50 am
Dear Artie I know from previous experience at MDA how dysfunctional they can be. Size does matter. I hope that you can resolve the issues with them but I agree with seeking alternate resources. I did send this message to them and I am hoping others with help by sending other messages to them as well . If you want I will call 60 minute, the Today show and contact Buzzfeed. Here is the message I sent:
How can you pompous jerks deny efficient and essential care to my friend with melanoma who has come to your clinic desparetly seeking your help? He has received no care for 4 weeks while in your care as you scratch your butts. It is unconscionable. But, now it is also widely know via the patient forum on MRF. I know you don't care but the beginning of the end of your hegemony is with this patient and the many others who will come forward with stories of your ineptitude and malfeasance. The question is why shouldn't this case be examined on Buzz Feed, 60 minutes and the Today show? Looks like the Moon Shot is a Pot Shot for the money of those who know no better. The M D Anderson Cancer Center crosses out the patient not the cancer.
Keep at It. May the Force Be With You. So are we. Brent
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- October 8, 2015 at 8:14 am
Wow Brent. Thanks for the caring. I think even if I was healthy I'm just not the type of person that can stomach that much attention and drama. Certainly not in my condition now. At least my local doc is pretty good. Got my opdivo pd1 last Monday and 2 weeks to get my strength back he said then we'll decide what treatment to proceed. He also said some of his other patients he sent there have had the same experience. So that means others must have had a good experience. So I dunno if shedding light on it would hurt or help our cause of curing melanoma. That's too big a torch for me to carry. I gotta focus on getting better. Thanks for caring though.
Artie
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- October 8, 2015 at 8:14 am
Wow Brent. Thanks for the caring. I think even if I was healthy I'm just not the type of person that can stomach that much attention and drama. Certainly not in my condition now. At least my local doc is pretty good. Got my opdivo pd1 last Monday and 2 weeks to get my strength back he said then we'll decide what treatment to proceed. He also said some of his other patients he sent there have had the same experience. So that means others must have had a good experience. So I dunno if shedding light on it would hurt or help our cause of curing melanoma. That's too big a torch for me to carry. I gotta focus on getting better. Thanks for caring though.
Artie
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- October 8, 2015 at 4:53 pm
I know you have to save your energy for the main struggle.Just wanted them to fee a little wrath.hang in there!
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- October 8, 2015 at 4:53 pm
I know you have to save your energy for the main struggle.Just wanted them to fee a little wrath.hang in there!
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- October 8, 2015 at 4:53 pm
I know you have to save your energy for the main struggle.Just wanted them to fee a little wrath.hang in there!
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- October 8, 2015 at 8:14 am
Wow Brent. Thanks for the caring. I think even if I was healthy I'm just not the type of person that can stomach that much attention and drama. Certainly not in my condition now. At least my local doc is pretty good. Got my opdivo pd1 last Monday and 2 weeks to get my strength back he said then we'll decide what treatment to proceed. He also said some of his other patients he sent there have had the same experience. So that means others must have had a good experience. So I dunno if shedding light on it would hurt or help our cause of curing melanoma. That's too big a torch for me to carry. I gotta focus on getting better. Thanks for caring though.
Artie
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- October 3, 2015 at 3:50 am
Dear Artie I know from previous experience at MDA how dysfunctional they can be. Size does matter. I hope that you can resolve the issues with them but I agree with seeking alternate resources. I did send this message to them and I am hoping others with help by sending other messages to them as well . If you want I will call 60 minute, the Today show and contact Buzzfeed. Here is the message I sent:
How can you pompous jerks deny efficient and essential care to my friend with melanoma who has come to your clinic desparetly seeking your help? He has received no care for 4 weeks while in your care as you scratch your butts. It is unconscionable. But, now it is also widely know via the patient forum on MRF. I know you don't care but the beginning of the end of your hegemony is with this patient and the many others who will come forward with stories of your ineptitude and malfeasance. The question is why shouldn't this case be examined on Buzz Feed, 60 minutes and the Today show? Looks like the Moon Shot is a Pot Shot for the money of those who know no better. The M D Anderson Cancer Center crosses out the patient not the cancer.
Keep at It. May the Force Be With You. So are we. Brent
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- October 3, 2015 at 7:10 pm
Artie, my heart goes out to you! I can't believe what you have and continue to go through! I am praying MDA gets their act together, and that somehow you get the treatment that is right for you!!! You are always in my thoughts and prayers!
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- October 3, 2015 at 7:10 pm
Artie, my heart goes out to you! I can't believe what you have and continue to go through! I am praying MDA gets their act together, and that somehow you get the treatment that is right for you!!! You are always in my thoughts and prayers!
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- October 3, 2015 at 7:10 pm
Artie, my heart goes out to you! I can't believe what you have and continue to go through! I am praying MDA gets their act together, and that somehow you get the treatment that is right for you!!! You are always in my thoughts and prayers!
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- October 3, 2015 at 10:01 pm
Thank you everyone for the support and advice.
I found the real reason they wouldn't let me in the trial. It was in the trial nurse report. Not what the doc said but I agree. Apparently I have a spine issue again. Reading my spine MRI there is a defect with the vetebroplasty I had done at mayo last summer. Not sure but I assume that is why there is cord displacement there. So I've got a message in to my mayo doc and I'll see my local doc Monday. So I should learn what if anything can be done. That kind of issue excludes me from any trial and in my opinion rightly so. That's why I had it done in the first place to make sure I didn't have an issue but apparently there is an issue.
Now if mda would have given me a dose of my regular pd1 I could have stayed and learned what their neurosurgeon thought. I do think the doc was trying to do me good but it wouldn't surprise me if he was totally unaware of my treatment situation. I suspect his head nurse knew because that's who the nurse I talked to said told her I couldn't have just the pd1 to get me by until the 10 to 15 business days the combo gets approved.
Now that I'm aware I have a spine issue again I don't believe I will fly until it gets fixed. So I have no plans to go back to mda anytime soon although I believe the neurosurgeon might have been able to help me. Fortunately we can drive to mayo.
Artie
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- October 3, 2015 at 10:01 pm
Thank you everyone for the support and advice.
I found the real reason they wouldn't let me in the trial. It was in the trial nurse report. Not what the doc said but I agree. Apparently I have a spine issue again. Reading my spine MRI there is a defect with the vetebroplasty I had done at mayo last summer. Not sure but I assume that is why there is cord displacement there. So I've got a message in to my mayo doc and I'll see my local doc Monday. So I should learn what if anything can be done. That kind of issue excludes me from any trial and in my opinion rightly so. That's why I had it done in the first place to make sure I didn't have an issue but apparently there is an issue.
Now if mda would have given me a dose of my regular pd1 I could have stayed and learned what their neurosurgeon thought. I do think the doc was trying to do me good but it wouldn't surprise me if he was totally unaware of my treatment situation. I suspect his head nurse knew because that's who the nurse I talked to said told her I couldn't have just the pd1 to get me by until the 10 to 15 business days the combo gets approved.
Now that I'm aware I have a spine issue again I don't believe I will fly until it gets fixed. So I have no plans to go back to mda anytime soon although I believe the neurosurgeon might have been able to help me. Fortunately we can drive to mayo.
Artie
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- October 3, 2015 at 10:01 pm
Thank you everyone for the support and advice.
I found the real reason they wouldn't let me in the trial. It was in the trial nurse report. Not what the doc said but I agree. Apparently I have a spine issue again. Reading my spine MRI there is a defect with the vetebroplasty I had done at mayo last summer. Not sure but I assume that is why there is cord displacement there. So I've got a message in to my mayo doc and I'll see my local doc Monday. So I should learn what if anything can be done. That kind of issue excludes me from any trial and in my opinion rightly so. That's why I had it done in the first place to make sure I didn't have an issue but apparently there is an issue.
Now if mda would have given me a dose of my regular pd1 I could have stayed and learned what their neurosurgeon thought. I do think the doc was trying to do me good but it wouldn't surprise me if he was totally unaware of my treatment situation. I suspect his head nurse knew because that's who the nurse I talked to said told her I couldn't have just the pd1 to get me by until the 10 to 15 business days the combo gets approved.
Now that I'm aware I have a spine issue again I don't believe I will fly until it gets fixed. So I have no plans to go back to mda anytime soon although I believe the neurosurgeon might have been able to help me. Fortunately we can drive to mayo.
Artie
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- October 3, 2015 at 11:51 pm
Artie,
Just want you to know that I am holding you in the light and hoping that very soon you get some good answers, advice, and the perfect treatment. I will say that if there is any possibility your doc can connect with Jedd Wolchok at Sloan, that would be great. He is just incredibly kind and involved, and of course, a world-renowned melanoma expert. Even though I only actually traveled to NYC to see him three or four times in the last 5 years, his office is immediately responsive to questions. Dr. Wolchok himself once called with my biopsy results (seriously almost fainted when I heard his voice on the phone!). It is very comforting to know that my oncologist here in Delaware and Dr. Wolchok discuss and concur on my treatment. I wish that for you!
Lear
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- October 3, 2015 at 11:51 pm
Artie,
Just want you to know that I am holding you in the light and hoping that very soon you get some good answers, advice, and the perfect treatment. I will say that if there is any possibility your doc can connect with Jedd Wolchok at Sloan, that would be great. He is just incredibly kind and involved, and of course, a world-renowned melanoma expert. Even though I only actually traveled to NYC to see him three or four times in the last 5 years, his office is immediately responsive to questions. Dr. Wolchok himself once called with my biopsy results (seriously almost fainted when I heard his voice on the phone!). It is very comforting to know that my oncologist here in Delaware and Dr. Wolchok discuss and concur on my treatment. I wish that for you!
Lear
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- October 3, 2015 at 11:51 pm
Artie,
Just want you to know that I am holding you in the light and hoping that very soon you get some good answers, advice, and the perfect treatment. I will say that if there is any possibility your doc can connect with Jedd Wolchok at Sloan, that would be great. He is just incredibly kind and involved, and of course, a world-renowned melanoma expert. Even though I only actually traveled to NYC to see him three or four times in the last 5 years, his office is immediately responsive to questions. Dr. Wolchok himself once called with my biopsy results (seriously almost fainted when I heard his voice on the phone!). It is very comforting to know that my oncologist here in Delaware and Dr. Wolchok discuss and concur on my treatment. I wish that for you!
Lear
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- October 4, 2015 at 3:41 pm
Hi Artie,
i know MDA is reputed to be one of the great centers in the US. However, it's hard to fathom the lack of compassion you're receiving. For what it's worth, I have been hugely pleased by the treatment, response to inquiries and overall compassionate care I have received at Memorial Sloan Kettering. I am under the care of Dr. Wolchock and his team. They are truly terrific and thorough and give me the comfort of a great team United to give me the best chance of a full recovery. If your frustration with MDA doesn't change, I would highly recommend MSKCC.
All the best,
Stan
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- October 4, 2015 at 3:41 pm
Hi Artie,
i know MDA is reputed to be one of the great centers in the US. However, it's hard to fathom the lack of compassion you're receiving. For what it's worth, I have been hugely pleased by the treatment, response to inquiries and overall compassionate care I have received at Memorial Sloan Kettering. I am under the care of Dr. Wolchock and his team. They are truly terrific and thorough and give me the comfort of a great team United to give me the best chance of a full recovery. If your frustration with MDA doesn't change, I would highly recommend MSKCC.
All the best,
Stan
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- October 4, 2015 at 3:41 pm
Hi Artie,
i know MDA is reputed to be one of the great centers in the US. However, it's hard to fathom the lack of compassion you're receiving. For what it's worth, I have been hugely pleased by the treatment, response to inquiries and overall compassionate care I have received at Memorial Sloan Kettering. I am under the care of Dr. Wolchock and his team. They are truly terrific and thorough and give me the comfort of a great team United to give me the best chance of a full recovery. If your frustration with MDA doesn't change, I would highly recommend MSKCC.
All the best,
Stan
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- October 4, 2015 at 5:05 pm
Man, I hate this for you Artie. I had a great experience at MDA this time last year for 8 separate trips, TIL harvest, bladder tumor resection, and biochemo before finally landing on Keytruda.
It's too bad it has to be this way- but there is most definitely a knowledge needed on how to navigate "the system". We saw it at MDA with (as you note) the business office and approvals. I was fortunate. I have a background in medical device sales management and worked with surgeons and hospital administrators daily and was comfortable dealing with the business side. My dad joined me throughout and he's a retired lawyer who questions everything. We left nothing to chance and triple followed up with everyone and were certain to form relationships with everyone, most importantly my doc and his team. The peer to peer follow-up is real with the insurance docs and our docs. Insurance routinely denies treatment and scans until the docs get involved then you see the bills and EOBs get adjusted. I know we all are doing this regularly and sometimes the system fails us. I just want to pass on this reality to others reading this that are new to the journey. You have to take control and be the CEO of your ship and stay on top of things because this type of stuff happens. I know you are doing this, Artie, again I say this for anyone just starting to go thru it.
My dad and I even joke about starting our own cancer patient consulting business to help people navigate this unfortunate side of the journey we all have to deal with, especially in an ever changing healthcare environment.
Best of luck and I'll be thinking about you Artie.
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- October 4, 2015 at 5:05 pm
Man, I hate this for you Artie. I had a great experience at MDA this time last year for 8 separate trips, TIL harvest, bladder tumor resection, and biochemo before finally landing on Keytruda.
It's too bad it has to be this way- but there is most definitely a knowledge needed on how to navigate "the system". We saw it at MDA with (as you note) the business office and approvals. I was fortunate. I have a background in medical device sales management and worked with surgeons and hospital administrators daily and was comfortable dealing with the business side. My dad joined me throughout and he's a retired lawyer who questions everything. We left nothing to chance and triple followed up with everyone and were certain to form relationships with everyone, most importantly my doc and his team. The peer to peer follow-up is real with the insurance docs and our docs. Insurance routinely denies treatment and scans until the docs get involved then you see the bills and EOBs get adjusted. I know we all are doing this regularly and sometimes the system fails us. I just want to pass on this reality to others reading this that are new to the journey. You have to take control and be the CEO of your ship and stay on top of things because this type of stuff happens. I know you are doing this, Artie, again I say this for anyone just starting to go thru it.
My dad and I even joke about starting our own cancer patient consulting business to help people navigate this unfortunate side of the journey we all have to deal with, especially in an ever changing healthcare environment.
Best of luck and I'll be thinking about you Artie.
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- October 4, 2015 at 5:05 pm
Man, I hate this for you Artie. I had a great experience at MDA this time last year for 8 separate trips, TIL harvest, bladder tumor resection, and biochemo before finally landing on Keytruda.
It's too bad it has to be this way- but there is most definitely a knowledge needed on how to navigate "the system". We saw it at MDA with (as you note) the business office and approvals. I was fortunate. I have a background in medical device sales management and worked with surgeons and hospital administrators daily and was comfortable dealing with the business side. My dad joined me throughout and he's a retired lawyer who questions everything. We left nothing to chance and triple followed up with everyone and were certain to form relationships with everyone, most importantly my doc and his team. The peer to peer follow-up is real with the insurance docs and our docs. Insurance routinely denies treatment and scans until the docs get involved then you see the bills and EOBs get adjusted. I know we all are doing this regularly and sometimes the system fails us. I just want to pass on this reality to others reading this that are new to the journey. You have to take control and be the CEO of your ship and stay on top of things because this type of stuff happens. I know you are doing this, Artie, again I say this for anyone just starting to go thru it.
My dad and I even joke about starting our own cancer patient consulting business to help people navigate this unfortunate side of the journey we all have to deal with, especially in an ever changing healthcare environment.
Best of luck and I'll be thinking about you Artie.
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- October 5, 2015 at 1:46 am
Take care Artie, I don't have any briliance to impart – but I am so sorry for your painful frustration. Keep fighting, continue to battle…….you have a long life ahead to still live. Take care, Rita
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- October 5, 2015 at 1:46 am
Take care Artie, I don't have any briliance to impart – but I am so sorry for your painful frustration. Keep fighting, continue to battle…….you have a long life ahead to still live. Take care, Rita
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- October 5, 2015 at 1:46 am
Take care Artie, I don't have any briliance to impart – but I am so sorry for your painful frustration. Keep fighting, continue to battle…….you have a long life ahead to still live. Take care, Rita
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