› Forums › General Melanoma Community › Can anyone tell me about their first visit to MD Anderson? Scans Etc.
- This topic has 15 replies, 4 voices, and was last updated 11 years ago by
lrkg1234.
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- May 1, 2013 at 1:53 am
Hi All,
Scott has an appointment on Friday the 10th at MD Anderson.
He has not had a scan since his IPI or WBR. I am wondering how this is going to work. It seems more logical to have the scan and then the appointment, but I have been told this is how it's always set up.
Hi All,
Scott has an appointment on Friday the 10th at MD Anderson.
He has not had a scan since his IPI or WBR. I am wondering how this is going to work. It seems more logical to have the scan and then the appointment, but I have been told this is how it's always set up.
If the brain scan is bad, won't that throw everything out the window? He's already had IPI and is taking Temodar. If those didn't work then it seems like SRS or Cyberknife is the only option and then he would most likely be treated for that at home. Am I wrong in thinking that or is there more information that I don't know about?
He was told that he will be treated as an outpatient for 2-3 days, so we may have further appointments on Monday and Tuesday.
If anyone remembers the details of their first visit please let me know. I'm anxious about the whole thing and patience is not one of my virtues.
Thanks, Lisa
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- May 1, 2013 at 2:34 am
Lisa,I was treated there and this seems reasonable to me. Can’t remember my first appt sequence exactly. They like their own scans so I bet you’ll have bloodwork, meet with the Dr to review everything, then he could order scans, etc for Monday if he wants or if its appropriate and come back to see Dr Tues to discuss next steps. Who are you seeing?
I highly recommend The Rotary House since it is connected. Also, MDAs social workers can help find accomodations, etc.
Amy
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- May 1, 2013 at 2:34 am
Lisa,I was treated there and this seems reasonable to me. Can’t remember my first appt sequence exactly. They like their own scans so I bet you’ll have bloodwork, meet with the Dr to review everything, then he could order scans, etc for Monday if he wants or if its appropriate and come back to see Dr Tues to discuss next steps. Who are you seeing?
I highly recommend The Rotary House since it is connected. Also, MDAs social workers can help find accomodations, etc.
Amy
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- May 1, 2013 at 2:34 am
Lisa,I was treated there and this seems reasonable to me. Can’t remember my first appt sequence exactly. They like their own scans so I bet you’ll have bloodwork, meet with the Dr to review everything, then he could order scans, etc for Monday if he wants or if its appropriate and come back to see Dr Tues to discuss next steps. Who are you seeing?
I highly recommend The Rotary House since it is connected. Also, MDAs social workers can help find accomodations, etc.
Amy
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- May 1, 2013 at 11:46 am
Hi Lisa, Our first visit to MDA was in August of 2012. We were scheduled to see DR.Patrick Hwu. Who are you seeing?
MDA is very large but there are a lot of people available to ask for directions etc… We usually stay at the Marriott nearby and take the shuttle to our appointments. The Rotary House is also very nice and very conveient since it is connected by a skybridge to the main building. Our first a ppointment went smoothly, after a fairly long waitng period. Dr. Hwu reviewed all of Peck's most current scans, went over history etc…and then a plan was made. We were not expecting to stay for a procedure but quickly learned that Peck was going to have surgery two days later to remove some lymph nodes for evaluation for the TILS trial. We were able to change our plane reservations, hotel easily. The travel office at MDA is very helpful in arranging travel plans and getting the MDA rate at hotels. We have since been to MDA 6 times. Most of the times scans and bloodwork are involved as well as an appointment with the Dr . Overall our experience has been positive. We have learned that we do have to be flexible. In March we left there thinking the TILS treatment was a go. Once we got home, we learned the plan had changed. We are currently in a waiting period to find out what treatment is next. At times the lack of communication from the melanoma clinic can be frustrating, we do have to stay pretty proactive in this area. I would say that that is my best advice to you….stay active in the communication process with doctor, nurses, etc….
We even have a taxi driver we have become friendly with that picks us up from the airport each time etc…He even gave us a Christmas present! It is nice to see a friendly face each time we arrive and depart Houston. I would be happy to share his info with you. I hope this helps, best of luck to you…Melissa
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- May 1, 2013 at 11:46 am
Hi Lisa, Our first visit to MDA was in August of 2012. We were scheduled to see DR.Patrick Hwu. Who are you seeing?
MDA is very large but there are a lot of people available to ask for directions etc… We usually stay at the Marriott nearby and take the shuttle to our appointments. The Rotary House is also very nice and very conveient since it is connected by a skybridge to the main building. Our first a ppointment went smoothly, after a fairly long waitng period. Dr. Hwu reviewed all of Peck's most current scans, went over history etc…and then a plan was made. We were not expecting to stay for a procedure but quickly learned that Peck was going to have surgery two days later to remove some lymph nodes for evaluation for the TILS trial. We were able to change our plane reservations, hotel easily. The travel office at MDA is very helpful in arranging travel plans and getting the MDA rate at hotels. We have since been to MDA 6 times. Most of the times scans and bloodwork are involved as well as an appointment with the Dr . Overall our experience has been positive. We have learned that we do have to be flexible. In March we left there thinking the TILS treatment was a go. Once we got home, we learned the plan had changed. We are currently in a waiting period to find out what treatment is next. At times the lack of communication from the melanoma clinic can be frustrating, we do have to stay pretty proactive in this area. I would say that that is my best advice to you….stay active in the communication process with doctor, nurses, etc….
We even have a taxi driver we have become friendly with that picks us up from the airport each time etc…He even gave us a Christmas present! It is nice to see a friendly face each time we arrive and depart Houston. I would be happy to share his info with you. I hope this helps, best of luck to you…Melissa
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- May 1, 2013 at 11:46 am
Hi Lisa, Our first visit to MDA was in August of 2012. We were scheduled to see DR.Patrick Hwu. Who are you seeing?
MDA is very large but there are a lot of people available to ask for directions etc… We usually stay at the Marriott nearby and take the shuttle to our appointments. The Rotary House is also very nice and very conveient since it is connected by a skybridge to the main building. Our first a ppointment went smoothly, after a fairly long waitng period. Dr. Hwu reviewed all of Peck's most current scans, went over history etc…and then a plan was made. We were not expecting to stay for a procedure but quickly learned that Peck was going to have surgery two days later to remove some lymph nodes for evaluation for the TILS trial. We were able to change our plane reservations, hotel easily. The travel office at MDA is very helpful in arranging travel plans and getting the MDA rate at hotels. We have since been to MDA 6 times. Most of the times scans and bloodwork are involved as well as an appointment with the Dr . Overall our experience has been positive. We have learned that we do have to be flexible. In March we left there thinking the TILS treatment was a go. Once we got home, we learned the plan had changed. We are currently in a waiting period to find out what treatment is next. At times the lack of communication from the melanoma clinic can be frustrating, we do have to stay pretty proactive in this area. I would say that that is my best advice to you….stay active in the communication process with doctor, nurses, etc….
We even have a taxi driver we have become friendly with that picks us up from the airport each time etc…He even gave us a Christmas present! It is nice to see a friendly face each time we arrive and depart Houston. I would be happy to share his info with you. I hope this helps, best of luck to you…Melissa
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- May 6, 2013 at 12:43 am
What one wants with a second opinion is a fresh look at the past combined with a fresh look forward.
MD Anderson does just that. Their patient intake is an independent evaluation. Expect the usual blood work and patient history………………then it will immediately alter course from what one is accustomed to.
Your Doc will then sit down with you and discuss where you have been, where you are and then lay out a plan of where to go……and make no mistake about this………they will also evaluate how determined and informed you are…..it will be subtle, but they do……….so be on your game, be conversational, succinct and to the point of what you have experienced, what you did not like, what you did like, options you have considered and be able to explain exactly what you expect from this second opinion.
After that, it moves quickly, in-house tests and scans will be ordered.
Depending on the findings, expect things to happen fast.
Real fast.
I can recall arriving on a Monday, a few intake tests, doctor visit, scans ordered that went late into the night with a 9 a.m.Tuesday Doc appointment for results and treatment plan, followed by a 2P.M afternoon SRS consult and a 7p.m. SRS proceedure.
All this within about a 34 hour time span..
No reason to be stressed, but I cannot over-emphasize that the more organized the patient and caregiver are , the better the result.
These people are at the top of their game in a worldwide way; bone up on communication skills, and be prepared to make fast and informed medical decisions……………that is what they do; you will be expected to respond in kind.
It is a good place, a REALLY good place.
Cheers,
Charlie S
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- May 8, 2013 at 3:02 am
Charlie,
Thanks for the tips.
Very surprising, yet good that you had things done so quickly when you were there. It's pretty amazing that you had SRS within 34 hours of your first visit. I would have never expected that they did tests etc. later into the night either. I was surprised that we have an appointment with no recent scans and that they have not scheduled the scans yet. Glad to hear that they move quickly.
We have been doing our homework to be ready for the appointment. We sort of took a break on researching when he was going through the Yervoy treatment and now it's time to change the plan again.
Thank God we got the appointment when we did. He has had 3 new bumps pop up under the skin and one is about the size of a quarter and about 2 inches to the right of his lower spine. We need to know what's going on instead of watch and wait. It can't seem good to have a tumor growing so close to the spine. I wonder if they might try to remove it now in case it proves to be painful later? So many worries.
I figure the treatment options might be: A) Imatinib B) Bio Chemo C) TIL? Don't know how long something like that takes.
He has lost weight, experiences nausea, and is VERY tired and in bed most of the time. I have a feeling that the scans are going to show further growth, hopefully not out of control growth. It will be the first scan after the Yervoy, about 4 weeks since the last treatment. He took the last temodar a couple of weeks ago.
We were also going to ask if they would advise waiting on getting into an Anti PD-1 trial somewhere else since they don't have any spots open right now.
Do you think I am on track with the possible treatment choices or do you know of anything else? We want to be informed so that we can ask relevant questions and be ready to make speedy decisions if necessary.
Thanks for the good advice.
Lisa
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- May 8, 2013 at 3:02 am
Charlie,
Thanks for the tips.
Very surprising, yet good that you had things done so quickly when you were there. It's pretty amazing that you had SRS within 34 hours of your first visit. I would have never expected that they did tests etc. later into the night either. I was surprised that we have an appointment with no recent scans and that they have not scheduled the scans yet. Glad to hear that they move quickly.
We have been doing our homework to be ready for the appointment. We sort of took a break on researching when he was going through the Yervoy treatment and now it's time to change the plan again.
Thank God we got the appointment when we did. He has had 3 new bumps pop up under the skin and one is about the size of a quarter and about 2 inches to the right of his lower spine. We need to know what's going on instead of watch and wait. It can't seem good to have a tumor growing so close to the spine. I wonder if they might try to remove it now in case it proves to be painful later? So many worries.
I figure the treatment options might be: A) Imatinib B) Bio Chemo C) TIL? Don't know how long something like that takes.
He has lost weight, experiences nausea, and is VERY tired and in bed most of the time. I have a feeling that the scans are going to show further growth, hopefully not out of control growth. It will be the first scan after the Yervoy, about 4 weeks since the last treatment. He took the last temodar a couple of weeks ago.
We were also going to ask if they would advise waiting on getting into an Anti PD-1 trial somewhere else since they don't have any spots open right now.
Do you think I am on track with the possible treatment choices or do you know of anything else? We want to be informed so that we can ask relevant questions and be ready to make speedy decisions if necessary.
Thanks for the good advice.
Lisa
-
- May 8, 2013 at 3:02 am
Charlie,
Thanks for the tips.
Very surprising, yet good that you had things done so quickly when you were there. It's pretty amazing that you had SRS within 34 hours of your first visit. I would have never expected that they did tests etc. later into the night either. I was surprised that we have an appointment with no recent scans and that they have not scheduled the scans yet. Glad to hear that they move quickly.
We have been doing our homework to be ready for the appointment. We sort of took a break on researching when he was going through the Yervoy treatment and now it's time to change the plan again.
Thank God we got the appointment when we did. He has had 3 new bumps pop up under the skin and one is about the size of a quarter and about 2 inches to the right of his lower spine. We need to know what's going on instead of watch and wait. It can't seem good to have a tumor growing so close to the spine. I wonder if they might try to remove it now in case it proves to be painful later? So many worries.
I figure the treatment options might be: A) Imatinib B) Bio Chemo C) TIL? Don't know how long something like that takes.
He has lost weight, experiences nausea, and is VERY tired and in bed most of the time. I have a feeling that the scans are going to show further growth, hopefully not out of control growth. It will be the first scan after the Yervoy, about 4 weeks since the last treatment. He took the last temodar a couple of weeks ago.
We were also going to ask if they would advise waiting on getting into an Anti PD-1 trial somewhere else since they don't have any spots open right now.
Do you think I am on track with the possible treatment choices or do you know of anything else? We want to be informed so that we can ask relevant questions and be ready to make speedy decisions if necessary.
Thanks for the good advice.
Lisa
-
- May 6, 2013 at 12:43 am
What one wants with a second opinion is a fresh look at the past combined with a fresh look forward.
MD Anderson does just that. Their patient intake is an independent evaluation. Expect the usual blood work and patient history………………then it will immediately alter course from what one is accustomed to.
Your Doc will then sit down with you and discuss where you have been, where you are and then lay out a plan of where to go……and make no mistake about this………they will also evaluate how determined and informed you are…..it will be subtle, but they do……….so be on your game, be conversational, succinct and to the point of what you have experienced, what you did not like, what you did like, options you have considered and be able to explain exactly what you expect from this second opinion.
After that, it moves quickly, in-house tests and scans will be ordered.
Depending on the findings, expect things to happen fast.
Real fast.
I can recall arriving on a Monday, a few intake tests, doctor visit, scans ordered that went late into the night with a 9 a.m.Tuesday Doc appointment for results and treatment plan, followed by a 2P.M afternoon SRS consult and a 7p.m. SRS proceedure.
All this within about a 34 hour time span..
No reason to be stressed, but I cannot over-emphasize that the more organized the patient and caregiver are , the better the result.
These people are at the top of their game in a worldwide way; bone up on communication skills, and be prepared to make fast and informed medical decisions……………that is what they do; you will be expected to respond in kind.
It is a good place, a REALLY good place.
Cheers,
Charlie S
-
- May 6, 2013 at 12:43 am
What one wants with a second opinion is a fresh look at the past combined with a fresh look forward.
MD Anderson does just that. Their patient intake is an independent evaluation. Expect the usual blood work and patient history………………then it will immediately alter course from what one is accustomed to.
Your Doc will then sit down with you and discuss where you have been, where you are and then lay out a plan of where to go……and make no mistake about this………they will also evaluate how determined and informed you are…..it will be subtle, but they do……….so be on your game, be conversational, succinct and to the point of what you have experienced, what you did not like, what you did like, options you have considered and be able to explain exactly what you expect from this second opinion.
After that, it moves quickly, in-house tests and scans will be ordered.
Depending on the findings, expect things to happen fast.
Real fast.
I can recall arriving on a Monday, a few intake tests, doctor visit, scans ordered that went late into the night with a 9 a.m.Tuesday Doc appointment for results and treatment plan, followed by a 2P.M afternoon SRS consult and a 7p.m. SRS proceedure.
All this within about a 34 hour time span..
No reason to be stressed, but I cannot over-emphasize that the more organized the patient and caregiver are , the better the result.
These people are at the top of their game in a worldwide way; bone up on communication skills, and be prepared to make fast and informed medical decisions……………that is what they do; you will be expected to respond in kind.
It is a good place, a REALLY good place.
Cheers,
Charlie S
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