› Forums › General Melanoma Community › My MD Anderson experience so far
- This topic has 66 replies, 18 voices, and was last updated 8 years, 7 months ago by
Bubbles.
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- September 17, 2015 at 3:33 pm
I'm kind of upset. Maybe it's the fevers and tumor pains from not having pd1 in so long. I dunno. I wanted to share my md Anderson experience and see maybe this is normal for them and I'm just silly for expecting more. I dunno.
On the 4th I finally made it to md Anderson. I was excited to finally be in the number one cancer place. Kind of neat how their sign marks through cancer.
Went to the melanoma waiting area. Was only a couple patients there. Did the typical fill out forms and wait 20 minutes or so.
Got called back and did the typical registration. Then went back down and way over and did the typical blood draw.
Then back up to the melanoma waiting area. Got called back for the typical vitals and small room. The first nurse was the typical optional trials for tumor and blood bank research.
Second nurse came in and asked some questions about my history.
The doc's head nurse comes in and asks questions and does a physical exam. She says if my kidney tumors are a different cancer they cannot treat me. She also said she will not bother having the trial nurse see me. So when she leaves I'm in tears wondering why I came here. She also gave me a card with the only number to call is the melanoma number which I already had.
Then the doc comes in. The first thing he says is he wants to do multiple biopsies and genetic testing to try and figure out why the medicines haven't worked for me. He also said pd1 and things only work when the person already has the cells in them that can beat the cancer. He also talked about what I think is some type of til and some other things. He wants scans right away. The biopsies right away. And to start the keytruda il10 trial asap. So I'm thinking finally I'm impressed and everything is going to be great.
So the trial nurse talked to me and said due to the holiday she couldn't get the trial started on the 10th but she will shoot for the 17th. She gave me a card how to call her. Also the doc came back and said he would like me to do the optional biopsy part of the trial so he can do more testing and studying of my tumors so I did that.
On the 5th they did a ct and head MRI. Except they didn't do the MRI contrast since that almost killed me at NIH.
The 6th to 8th I was too sick with fevers and feeling awful so couldn't go home. Called the trial nurse on 8th and she said there was lots to get done to make the 17th happen.
On 9th the business financial lady called saying it would be 7 to 10 business days for approval and they just submitted it. She said nothing could happen until then. I start to say not even the doc's biopsies but she didn't let me finish and said nothing can happen. So I'm in tears again.
On 10th I left a message with trial nurse we are going home. I could not get rest in the hotel and only got 2 hours sleep plus the fevers so my parents were getting worried. Trial nurse says she'll keep trying for the 17th. Suddenly someone calls about the biopsy so scheduled that for 21st.
Back home with fevers and feeling crummy. Plus lots of pain from tumors since I'm overdue for my pd1. On 14th trial nurse ok getting my xgeva at home but if I get pd1 might push start date. So opt not to get pd1. Only thing holding up trial is financials so she gives me their number and wants me to call her if I hear it is approved. I call them and still not approved. She also said she would push the start date to the 24th.
On 16th I call financials a couple times and it gets approved. I leave message with trial nurse financials are approved. She calls back and says the treatment area is overbooked on the 24th. They have 58 patients that day. Also for some reason they aren't letting her schedule it for the 25th although they aren't overbooked that day. I say something to the affect that's odd. This is md Anderson. The number one cancer place in America. She didn't know quite what to say.
Soooo. That's my experience with md Anderson so far. I really hope things get better. If not I'm not going to make it much longer like this. Too many tumors and pain and fevers and keep losing weight. I'm sorry I sound depressed. I know others are going through more than me.
Artie
- Replies
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- September 17, 2015 at 4:28 pm
Artie,
You are a blessing to those around you and on this forum. You have every right to be upset and depressed, and there isn't one person on this forum that would think otherwise. Keep doing what you're doing. Hound them every day if you have to. You traveled a faw way to get to them in not the best condition, they should be more sensitive and forthcoming with information. I will be praying you get in the trial ASAP.
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- September 17, 2015 at 4:28 pm
Artie,
You are a blessing to those around you and on this forum. You have every right to be upset and depressed, and there isn't one person on this forum that would think otherwise. Keep doing what you're doing. Hound them every day if you have to. You traveled a faw way to get to them in not the best condition, they should be more sensitive and forthcoming with information. I will be praying you get in the trial ASAP.
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- September 17, 2015 at 4:28 pm
Artie,
You are a blessing to those around you and on this forum. You have every right to be upset and depressed, and there isn't one person on this forum that would think otherwise. Keep doing what you're doing. Hound them every day if you have to. You traveled a faw way to get to them in not the best condition, they should be more sensitive and forthcoming with information. I will be praying you get in the trial ASAP.
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- September 17, 2015 at 5:39 pm
Artie – sorry to hear about your experience. I know your situation is serious…so this is my attempt at making you smile 🙂
There is no doubt that the medical industry is NOT designed around the actual patient (though they still appear to need us for some reason). That is why in the next version of civilization we should try redesigning the health care system from the patient perspective.
First of all let's get rid of the waiting room – why are there so many of them and why so big? Let's put the doctors there and have somebody go get them when we are ready. (at least the chairs are getting more comfortable)
Second of all, why does it take an insurance company 7-10 days approval? Come on, let's crowdsource approvals and let folks on a forum like this vote yes or no? (and yes I know my Interferon treatments would never be approved by this forum:)
Third, let's change the prioritization of getting clinical results. Most of these tests (not all) have results that are ready very quickly…sometimes in minutes. Yet it can take days/weeks of torture waiting to know that everything is fine.
And finally, billing and insurance…how come we still have a system that bills out $1,000 and insurance pays $100. Is it really my doctor/hospital or is the insurance company that is completely clueless on what is a fair payment?
I am sure others will be able to add to this list.
All the best Artie…
Michel
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- September 17, 2015 at 5:39 pm
Artie – sorry to hear about your experience. I know your situation is serious…so this is my attempt at making you smile 🙂
There is no doubt that the medical industry is NOT designed around the actual patient (though they still appear to need us for some reason). That is why in the next version of civilization we should try redesigning the health care system from the patient perspective.
First of all let's get rid of the waiting room – why are there so many of them and why so big? Let's put the doctors there and have somebody go get them when we are ready. (at least the chairs are getting more comfortable)
Second of all, why does it take an insurance company 7-10 days approval? Come on, let's crowdsource approvals and let folks on a forum like this vote yes or no? (and yes I know my Interferon treatments would never be approved by this forum:)
Third, let's change the prioritization of getting clinical results. Most of these tests (not all) have results that are ready very quickly…sometimes in minutes. Yet it can take days/weeks of torture waiting to know that everything is fine.
And finally, billing and insurance…how come we still have a system that bills out $1,000 and insurance pays $100. Is it really my doctor/hospital or is the insurance company that is completely clueless on what is a fair payment?
I am sure others will be able to add to this list.
All the best Artie…
Michel
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- September 17, 2015 at 5:39 pm
Artie – sorry to hear about your experience. I know your situation is serious…so this is my attempt at making you smile 🙂
There is no doubt that the medical industry is NOT designed around the actual patient (though they still appear to need us for some reason). That is why in the next version of civilization we should try redesigning the health care system from the patient perspective.
First of all let's get rid of the waiting room – why are there so many of them and why so big? Let's put the doctors there and have somebody go get them when we are ready. (at least the chairs are getting more comfortable)
Second of all, why does it take an insurance company 7-10 days approval? Come on, let's crowdsource approvals and let folks on a forum like this vote yes or no? (and yes I know my Interferon treatments would never be approved by this forum:)
Third, let's change the prioritization of getting clinical results. Most of these tests (not all) have results that are ready very quickly…sometimes in minutes. Yet it can take days/weeks of torture waiting to know that everything is fine.
And finally, billing and insurance…how come we still have a system that bills out $1,000 and insurance pays $100. Is it really my doctor/hospital or is the insurance company that is completely clueless on what is a fair payment?
I am sure others will be able to add to this list.
All the best Artie…
Michel
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- September 17, 2015 at 5:48 pm
Hey Artie,
So sorry for your experience. We were actually just up at the Melanoma and Skin Center on Tuesday. As much as I like MD Anderson (mostly for their research expertise) we have noticed logistical issues which you seem to be facing. We found that when we had these issues (such as billing mistakes, imaging schedules, scheduling successive appointments etc) it was best to contact our patient advocate and/or the social work department. They can act on your behalf so you don't have to deal with all this logistical stuff ON TOP OF having to beat melanoma. Let them do that work for you if possible. Having been involved in dialysis research, outcomes were actually better when a patient had a social worker working on their behalf. The social work department can intervene on your behalf and maybe take some of this burden off of you and family.
Here is the information:
I am here in Houston if you need anything at all. I was a medical librarian as well as patient librarian before working in academia, so will gladly help in any way.
Prayers and hugs,
Jackie
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- September 17, 2015 at 5:48 pm
Hey Artie,
So sorry for your experience. We were actually just up at the Melanoma and Skin Center on Tuesday. As much as I like MD Anderson (mostly for their research expertise) we have noticed logistical issues which you seem to be facing. We found that when we had these issues (such as billing mistakes, imaging schedules, scheduling successive appointments etc) it was best to contact our patient advocate and/or the social work department. They can act on your behalf so you don't have to deal with all this logistical stuff ON TOP OF having to beat melanoma. Let them do that work for you if possible. Having been involved in dialysis research, outcomes were actually better when a patient had a social worker working on their behalf. The social work department can intervene on your behalf and maybe take some of this burden off of you and family.
Here is the information:
I am here in Houston if you need anything at all. I was a medical librarian as well as patient librarian before working in academia, so will gladly help in any way.
Prayers and hugs,
Jackie
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- September 17, 2015 at 5:48 pm
Hey Artie,
So sorry for your experience. We were actually just up at the Melanoma and Skin Center on Tuesday. As much as I like MD Anderson (mostly for their research expertise) we have noticed logistical issues which you seem to be facing. We found that when we had these issues (such as billing mistakes, imaging schedules, scheduling successive appointments etc) it was best to contact our patient advocate and/or the social work department. They can act on your behalf so you don't have to deal with all this logistical stuff ON TOP OF having to beat melanoma. Let them do that work for you if possible. Having been involved in dialysis research, outcomes were actually better when a patient had a social worker working on their behalf. The social work department can intervene on your behalf and maybe take some of this burden off of you and family.
Here is the information:
I am here in Houston if you need anything at all. I was a medical librarian as well as patient librarian before working in academia, so will gladly help in any way.
Prayers and hugs,
Jackie
-
- September 17, 2015 at 6:11 pm
Artie, my wife works in healthcare. She tells me that these days, patients have to act as their own advocates, because nobody else will. She has been an RN for over 30 years, and she thinks it's sad that that is the state of things these days, but that is what everyone has to do.
So make some noise. If things aren't how you think they should be, ask why they aren't different. I've found myself, in health care and other things, that squeaky wheel really does get the grease. Hound them until they give in to what you need/want, if that's what it takes.
All my best to you.
-Bill
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- September 17, 2015 at 6:11 pm
Artie, my wife works in healthcare. She tells me that these days, patients have to act as their own advocates, because nobody else will. She has been an RN for over 30 years, and she thinks it's sad that that is the state of things these days, but that is what everyone has to do.
So make some noise. If things aren't how you think they should be, ask why they aren't different. I've found myself, in health care and other things, that squeaky wheel really does get the grease. Hound them until they give in to what you need/want, if that's what it takes.
All my best to you.
-Bill
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- September 17, 2015 at 6:11 pm
Artie, my wife works in healthcare. She tells me that these days, patients have to act as their own advocates, because nobody else will. She has been an RN for over 30 years, and she thinks it's sad that that is the state of things these days, but that is what everyone has to do.
So make some noise. If things aren't how you think they should be, ask why they aren't different. I've found myself, in health care and other things, that squeaky wheel really does get the grease. Hound them until they give in to what you need/want, if that's what it takes.
All my best to you.
-Bill
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- September 17, 2015 at 6:32 pm
Oh, Artie! I am so sorry that you are feeling so bad and got such an up and down run around at MD Anderson! That sucks great big hairy green wizard balls! I believe in MD Anderson as far as expertise and treatment options. It is a sad part of institutionalized medicine that the bigger the practice/hospital…that so often the less personal and caring they become with bigger ridiculous policies to match their expertise! Do hang in there. I know it must all be just miserable. I do think that with your tumors showing differing BRAF status at different times, the biopsies could be very helpful…albeit a huge pain in the a$$ and elsewhere! Jackie's links and advice sould like good ideas to me. I hope you can find some help there. OR…..I figure we can round up a pretty impressive Artie posse and kick some MD bootie if need be!!
Rest up. Hang in there. I still think this can be a good thing for you. Love, c
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- September 17, 2015 at 6:32 pm
Oh, Artie! I am so sorry that you are feeling so bad and got such an up and down run around at MD Anderson! That sucks great big hairy green wizard balls! I believe in MD Anderson as far as expertise and treatment options. It is a sad part of institutionalized medicine that the bigger the practice/hospital…that so often the less personal and caring they become with bigger ridiculous policies to match their expertise! Do hang in there. I know it must all be just miserable. I do think that with your tumors showing differing BRAF status at different times, the biopsies could be very helpful…albeit a huge pain in the a$$ and elsewhere! Jackie's links and advice sould like good ideas to me. I hope you can find some help there. OR…..I figure we can round up a pretty impressive Artie posse and kick some MD bootie if need be!!
Rest up. Hang in there. I still think this can be a good thing for you. Love, c
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- September 17, 2015 at 6:32 pm
Oh, Artie! I am so sorry that you are feeling so bad and got such an up and down run around at MD Anderson! That sucks great big hairy green wizard balls! I believe in MD Anderson as far as expertise and treatment options. It is a sad part of institutionalized medicine that the bigger the practice/hospital…that so often the less personal and caring they become with bigger ridiculous policies to match their expertise! Do hang in there. I know it must all be just miserable. I do think that with your tumors showing differing BRAF status at different times, the biopsies could be very helpful…albeit a huge pain in the a$$ and elsewhere! Jackie's links and advice sould like good ideas to me. I hope you can find some help there. OR…..I figure we can round up a pretty impressive Artie posse and kick some MD bootie if need be!!
Rest up. Hang in there. I still think this can be a good thing for you. Love, c
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- September 18, 2015 at 2:46 pm
I'M JOINING THE ARTIE POSSE!!!!
Feeling miserable and then you get this runaround. I agree that you might want to send your post to the Patient Advocate at MD Anderson…even though you shouldn't have to go through this. We go to these big name places because we're sick, we feel miserable, and we want help without a zillion headaches to go along with it. I hope that things fall into place quickly and that after you get the hang of the MD Anderson world, things improve. I pray that they find answers for you and I really believe they will!
You've helped so many people, Artie, and we are here for you!!!!!!!
Terrie
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- September 18, 2015 at 2:46 pm
I'M JOINING THE ARTIE POSSE!!!!
Feeling miserable and then you get this runaround. I agree that you might want to send your post to the Patient Advocate at MD Anderson…even though you shouldn't have to go through this. We go to these big name places because we're sick, we feel miserable, and we want help without a zillion headaches to go along with it. I hope that things fall into place quickly and that after you get the hang of the MD Anderson world, things improve. I pray that they find answers for you and I really believe they will!
You've helped so many people, Artie, and we are here for you!!!!!!!
Terrie
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- September 18, 2015 at 2:46 pm
I'M JOINING THE ARTIE POSSE!!!!
Feeling miserable and then you get this runaround. I agree that you might want to send your post to the Patient Advocate at MD Anderson…even though you shouldn't have to go through this. We go to these big name places because we're sick, we feel miserable, and we want help without a zillion headaches to go along with it. I hope that things fall into place quickly and that after you get the hang of the MD Anderson world, things improve. I pray that they find answers for you and I really believe they will!
You've helped so many people, Artie, and we are here for you!!!!!!!
Terrie
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- September 17, 2015 at 9:32 pm
Artie, I have missed you for a while here on the forum and have wondered how things are going for you. I am sorry for what you just wrote and really hope your luck will turn. -
- September 17, 2015 at 9:32 pm
Artie, I have missed you for a while here on the forum and have wondered how things are going for you. I am sorry for what you just wrote and really hope your luck will turn. -
- September 17, 2015 at 9:32 pm
Artie, I have missed you for a while here on the forum and have wondered how things are going for you. I am sorry for what you just wrote and really hope your luck will turn. -
- September 17, 2015 at 9:41 pm
Hey Artie,
Yes, hang in there. Most of what I think has already been posted above. You've come a long way, and hopefully once through the bureaucratic maze, the treatment, which is what counts, will give you the results you hope for. You have many of us rooting for you and keeping you in our prayers.
Aloha, Gary
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- September 17, 2015 at 9:41 pm
Hey Artie,
Yes, hang in there. Most of what I think has already been posted above. You've come a long way, and hopefully once through the bureaucratic maze, the treatment, which is what counts, will give you the results you hope for. You have many of us rooting for you and keeping you in our prayers.
Aloha, Gary
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- September 17, 2015 at 9:41 pm
Hey Artie,
Yes, hang in there. Most of what I think has already been posted above. You've come a long way, and hopefully once through the bureaucratic maze, the treatment, which is what counts, will give you the results you hope for. You have many of us rooting for you and keeping you in our prayers.
Aloha, Gary
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- September 18, 2015 at 1:09 am
Artie! They are treating you just horribly! Unfortunately, that sort of treatment seems to be the norm these days. I really felt like I was just a diseae or a science experiment to these people, not a person. I have never felt less human than when in a doctor's office or hospital. This played a part in my decision to try healthy approaches to healing before moving on to conventional treatment. I just hate every aspect of being a patient. I hope the medical community will wake up soon and learn how to treat people better. And I hope they treat you like the amazing person you are, Artie. Best of luck and health to you!
Maggie
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- September 18, 2015 at 1:09 am
Artie! They are treating you just horribly! Unfortunately, that sort of treatment seems to be the norm these days. I really felt like I was just a diseae or a science experiment to these people, not a person. I have never felt less human than when in a doctor's office or hospital. This played a part in my decision to try healthy approaches to healing before moving on to conventional treatment. I just hate every aspect of being a patient. I hope the medical community will wake up soon and learn how to treat people better. And I hope they treat you like the amazing person you are, Artie. Best of luck and health to you!
Maggie
-
- September 18, 2015 at 1:09 am
Artie! They are treating you just horribly! Unfortunately, that sort of treatment seems to be the norm these days. I really felt like I was just a diseae or a science experiment to these people, not a person. I have never felt less human than when in a doctor's office or hospital. This played a part in my decision to try healthy approaches to healing before moving on to conventional treatment. I just hate every aspect of being a patient. I hope the medical community will wake up soon and learn how to treat people better. And I hope they treat you like the amazing person you are, Artie. Best of luck and health to you!
Maggie
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- September 18, 2015 at 6:03 am
It sounds like the opposite of having a 'case manager'. Instead you're bouncing around like being in a pinball machine, with no one seeing all the parts of your case. Your health probably doesn't make it any easier to try to ride herd over all these individuals. I've been visibly angry and expressed it, being slowed down by few staff for much smaller issues than what you've run into. It's sad, dissapointing, anger-inspring in a health context, to find out that if you don't be your own case manager pushing on every lever, to staff who don't get the serious attention that each handoff deserves, leaves you feeling like you are now.
Maybe with neurosurgery they treat people better, maybe they get that someone with brain issues needs some assistance and attention for all the different parts to happen.
-
- September 18, 2015 at 6:03 am
It sounds like the opposite of having a 'case manager'. Instead you're bouncing around like being in a pinball machine, with no one seeing all the parts of your case. Your health probably doesn't make it any easier to try to ride herd over all these individuals. I've been visibly angry and expressed it, being slowed down by few staff for much smaller issues than what you've run into. It's sad, dissapointing, anger-inspring in a health context, to find out that if you don't be your own case manager pushing on every lever, to staff who don't get the serious attention that each handoff deserves, leaves you feeling like you are now.
Maybe with neurosurgery they treat people better, maybe they get that someone with brain issues needs some assistance and attention for all the different parts to happen.
-
- September 18, 2015 at 6:03 am
It sounds like the opposite of having a 'case manager'. Instead you're bouncing around like being in a pinball machine, with no one seeing all the parts of your case. Your health probably doesn't make it any easier to try to ride herd over all these individuals. I've been visibly angry and expressed it, being slowed down by few staff for much smaller issues than what you've run into. It's sad, dissapointing, anger-inspring in a health context, to find out that if you don't be your own case manager pushing on every lever, to staff who don't get the serious attention that each handoff deserves, leaves you feeling like you are now.
Maybe with neurosurgery they treat people better, maybe they get that someone with brain issues needs some assistance and attention for all the different parts to happen.
-
- September 19, 2015 at 11:19 pm
That’s a great suggestion to print this out. I would take it to the Director of Clinical Research at MD Anderson. We actually had to do this recently with a situation that came up at Texas oncology in Dallas. We saw excellent results from letting the director know what was going on. Best of luck to you!! -
- September 19, 2015 at 11:19 pm
That’s a great suggestion to print this out. I would take it to the Director of Clinical Research at MD Anderson. We actually had to do this recently with a situation that came up at Texas oncology in Dallas. We saw excellent results from letting the director know what was going on. Best of luck to you!! -
- September 19, 2015 at 11:19 pm
That’s a great suggestion to print this out. I would take it to the Director of Clinical Research at MD Anderson. We actually had to do this recently with a situation that came up at Texas oncology in Dallas. We saw excellent results from letting the director know what was going on. Best of luck to you!!
-
- September 18, 2015 at 9:44 pm
Artie, I just returned home from MD Anderson. I spent the week there following an initially-planned 2-day visit (due to additional testing and medical appts scheduled on the spot). I had a good experience and learned about options that simply aren't available elsewhere. That said, I empathize with your experience. The doctors are great, but they obviously have to rely on the (large) staff to do much of the blocking and tackling. Like any large institution, it is not so much the institution, but rather the indviduals. It sounds like you've had the misfortune of dealing with challenging individuals while also being/feeling sick. I know how difficult it is to focus, advocate, etc. with fevers or pain. I hope that you have an easier time going forward. For folks reading this post and looking for options beyond FDA-approved treatments (i.e., clinical trials), MD Anderson is a very impressive place.
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- September 18, 2015 at 9:44 pm
Artie, I just returned home from MD Anderson. I spent the week there following an initially-planned 2-day visit (due to additional testing and medical appts scheduled on the spot). I had a good experience and learned about options that simply aren't available elsewhere. That said, I empathize with your experience. The doctors are great, but they obviously have to rely on the (large) staff to do much of the blocking and tackling. Like any large institution, it is not so much the institution, but rather the indviduals. It sounds like you've had the misfortune of dealing with challenging individuals while also being/feeling sick. I know how difficult it is to focus, advocate, etc. with fevers or pain. I hope that you have an easier time going forward. For folks reading this post and looking for options beyond FDA-approved treatments (i.e., clinical trials), MD Anderson is a very impressive place.
-
- September 18, 2015 at 9:44 pm
Artie, I just returned home from MD Anderson. I spent the week there following an initially-planned 2-day visit (due to additional testing and medical appts scheduled on the spot). I had a good experience and learned about options that simply aren't available elsewhere. That said, I empathize with your experience. The doctors are great, but they obviously have to rely on the (large) staff to do much of the blocking and tackling. Like any large institution, it is not so much the institution, but rather the indviduals. It sounds like you've had the misfortune of dealing with challenging individuals while also being/feeling sick. I know how difficult it is to focus, advocate, etc. with fevers or pain. I hope that you have an easier time going forward. For folks reading this post and looking for options beyond FDA-approved treatments (i.e., clinical trials), MD Anderson is a very impressive place.
-
- September 19, 2015 at 2:47 am
I'm sorry things have been so much more difficult than they should have been Artie. You don't have to apologize on here for venting. We all understand and you are entitled to vent. Don't hesitate to get "emotional" with these paper pushers you are dealing with. Sometimes I think all they see is a case number and forget that there's a human being with a life on the line. Make them see the human aspect of your case. I like the idea of getting the MDA social workers and patient advocates involved as well. I'll be praying that you are getting treatment next week. Hang in there.
Brian
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- September 19, 2015 at 2:47 am
I'm sorry things have been so much more difficult than they should have been Artie. You don't have to apologize on here for venting. We all understand and you are entitled to vent. Don't hesitate to get "emotional" with these paper pushers you are dealing with. Sometimes I think all they see is a case number and forget that there's a human being with a life on the line. Make them see the human aspect of your case. I like the idea of getting the MDA social workers and patient advocates involved as well. I'll be praying that you are getting treatment next week. Hang in there.
Brian
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- September 19, 2015 at 2:47 am
I'm sorry things have been so much more difficult than they should have been Artie. You don't have to apologize on here for venting. We all understand and you are entitled to vent. Don't hesitate to get "emotional" with these paper pushers you are dealing with. Sometimes I think all they see is a case number and forget that there's a human being with a life on the line. Make them see the human aspect of your case. I like the idea of getting the MDA social workers and patient advocates involved as well. I'll be praying that you are getting treatment next week. Hang in there.
Brian
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- September 19, 2015 at 2:55 pm
Artie, in case you haven't looked at these, the phone#s for patient advocacy are posted online. The patient advocacy might possibly have weekend hours, unless it's just an answering machine.
Patient Advocate: http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anderson/patient-and-family-support/patient-advocacy.html
Hours: Weekdays 8:00 a.m.-5:00 p.m.
Phone: 713-792-7776 (after hours and weekends, call 713-792-7090)
They say, "At registration, every patient is assigned a patient advocate who serves as a liaison between the patient and MD Anderson. Patient advocates provide an opportunity in a confidential setting to voice a complaint, concern or problem, or to seek a resolution."
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- September 19, 2015 at 2:55 pm
Artie, in case you haven't looked at these, the phone#s for patient advocacy are posted online. The patient advocacy might possibly have weekend hours, unless it's just an answering machine.
Patient Advocate: http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anderson/patient-and-family-support/patient-advocacy.html
Hours: Weekdays 8:00 a.m.-5:00 p.m.
Phone: 713-792-7776 (after hours and weekends, call 713-792-7090)
They say, "At registration, every patient is assigned a patient advocate who serves as a liaison between the patient and MD Anderson. Patient advocates provide an opportunity in a confidential setting to voice a complaint, concern or problem, or to seek a resolution."
-
- September 19, 2015 at 2:55 pm
Artie, in case you haven't looked at these, the phone#s for patient advocacy are posted online. The patient advocacy might possibly have weekend hours, unless it's just an answering machine.
Patient Advocate: http://www.mdanderson.org/patient-and-cancer-information/guide-to-md-anderson/patient-and-family-support/patient-advocacy.html
Hours: Weekdays 8:00 a.m.-5:00 p.m.
Phone: 713-792-7776 (after hours and weekends, call 713-792-7090)
They say, "At registration, every patient is assigned a patient advocate who serves as a liaison between the patient and MD Anderson. Patient advocates provide an opportunity in a confidential setting to voice a complaint, concern or problem, or to seek a resolution."
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- September 22, 2015 at 12:49 pm
Thank you so much everyone. It is so good to know you folks care and get what we go through.
Im back at mda this week. Today they are going to biopsy my kidney and shoulder. For the kidney they are only going to see if it's melanoma or a different cancer. For the shoulder they will do the mutation testing. Not sure why they are concentrating on the shoulder because it is mostly necrotic and hasn't grown since it was radiated. But that's their plan even in the trial to study it.
Anyway they have booked a treatment slot for Friday. So if the kidney biopsy comes back melanoma they will do the keytruda il10 trial. If it's a different cancer they said they can't treat me. Not sure if by they they mean the melanoma group or mda. We shall see.
It took several phone calls last week to the melanoma team and that's the situation. It seems like the uncertainty of the kidney tumor is a big hang up. My saint Louis doc has treated melanoma for over 25 years. He said he would be very surprised if I had a second primary of a different cancer. So we shall see.
Thank you everyone.
Artie
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- September 22, 2015 at 12:49 pm
Thank you so much everyone. It is so good to know you folks care and get what we go through.
Im back at mda this week. Today they are going to biopsy my kidney and shoulder. For the kidney they are only going to see if it's melanoma or a different cancer. For the shoulder they will do the mutation testing. Not sure why they are concentrating on the shoulder because it is mostly necrotic and hasn't grown since it was radiated. But that's their plan even in the trial to study it.
Anyway they have booked a treatment slot for Friday. So if the kidney biopsy comes back melanoma they will do the keytruda il10 trial. If it's a different cancer they said they can't treat me. Not sure if by they they mean the melanoma group or mda. We shall see.
It took several phone calls last week to the melanoma team and that's the situation. It seems like the uncertainty of the kidney tumor is a big hang up. My saint Louis doc has treated melanoma for over 25 years. He said he would be very surprised if I had a second primary of a different cancer. So we shall see.
Thank you everyone.
Artie
-
- September 22, 2015 at 12:49 pm
Thank you so much everyone. It is so good to know you folks care and get what we go through.
Im back at mda this week. Today they are going to biopsy my kidney and shoulder. For the kidney they are only going to see if it's melanoma or a different cancer. For the shoulder they will do the mutation testing. Not sure why they are concentrating on the shoulder because it is mostly necrotic and hasn't grown since it was radiated. But that's their plan even in the trial to study it.
Anyway they have booked a treatment slot for Friday. So if the kidney biopsy comes back melanoma they will do the keytruda il10 trial. If it's a different cancer they said they can't treat me. Not sure if by they they mean the melanoma group or mda. We shall see.
It took several phone calls last week to the melanoma team and that's the situation. It seems like the uncertainty of the kidney tumor is a big hang up. My saint Louis doc has treated melanoma for over 25 years. He said he would be very surprised if I had a second primary of a different cancer. So we shall see.
Thank you everyone.
Artie
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