› Forums › General Melanoma Community › Cost of Consultation at MD Anderson?
- This topic has 39 replies, 9 voices, and was last updated 11 years, 4 months ago by
Lgrodner.
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- January 1, 2013 at 6:41 pm
Can anyone tell me what their experience is regarding the cost of a consultation appointment at MD Anderson? My husbands insurance will not normally cover any services outside of Kansas. I worked with his insurance and they granted a "Benefit Exception" for one appointment so he can consult a melanoma specialist at MD Anderson for a second opinion. I was told by the agent that was attempting to set up the appointment that one consultation appointment cost $40,000! With his insurance we would have to pay $4,000. Any info anyone can give me is appr
Can anyone tell me what their experience is regarding the cost of a consultation appointment at MD Anderson? My husbands insurance will not normally cover any services outside of Kansas. I worked with his insurance and they granted a "Benefit Exception" for one appointment so he can consult a melanoma specialist at MD Anderson for a second opinion. I was told by the agent that was attempting to set up the appointment that one consultation appointment cost $40,000! With his insurance we would have to pay $4,000. Any info anyone can give me is appreciated.
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- January 1, 2013 at 8:21 pm
I was also quoted $40,000 for a consult at MD Anderson. The acutal consult would not likely cost that whole amount (depending on time, tests, analysis of existing scans, slides, etc.) but Anderson asks for the $40K as an up-front deposit. I ended up going for a second opinion consult at the Seattle Cancer Care Alliance (associated with the University of Washington), who asked for a $1600 deposit up front. The oncologist I spoke with, Dr. Tykodi, is a superb doctor and personable man, knows much about melanoma and current treatments/therapy and the clinic itself seems to provide excellent all around cancer care and treatment. MD Anderson is no doubt good, but so are many other, lesser expensive places. The real challenge is finding a melanoma specialist you trust and feel you can work with. Best of luck.
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- January 2, 2013 at 3:16 am
Thank you for your reply. There are only 2 melanoma specialist listed in Kansas. Both close to us. One is currently my husband's oncologist and we just aren't sure he is aggressive enough. It looks like we are going to try to get an appointment with the other one before we push for the MDA appointment.
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- January 2, 2013 at 3:16 am
Thank you for your reply. There are only 2 melanoma specialist listed in Kansas. Both close to us. One is currently my husband's oncologist and we just aren't sure he is aggressive enough. It looks like we are going to try to get an appointment with the other one before we push for the MDA appointment.
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- January 2, 2013 at 3:16 am
Thank you for your reply. There are only 2 melanoma specialist listed in Kansas. Both close to us. One is currently my husband's oncologist and we just aren't sure he is aggressive enough. It looks like we are going to try to get an appointment with the other one before we push for the MDA appointment.
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- January 1, 2013 at 8:21 pm
I was also quoted $40,000 for a consult at MD Anderson. The acutal consult would not likely cost that whole amount (depending on time, tests, analysis of existing scans, slides, etc.) but Anderson asks for the $40K as an up-front deposit. I ended up going for a second opinion consult at the Seattle Cancer Care Alliance (associated with the University of Washington), who asked for a $1600 deposit up front. The oncologist I spoke with, Dr. Tykodi, is a superb doctor and personable man, knows much about melanoma and current treatments/therapy and the clinic itself seems to provide excellent all around cancer care and treatment. MD Anderson is no doubt good, but so are many other, lesser expensive places. The real challenge is finding a melanoma specialist you trust and feel you can work with. Best of luck.
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- January 1, 2013 at 8:21 pm
I was also quoted $40,000 for a consult at MD Anderson. The acutal consult would not likely cost that whole amount (depending on time, tests, analysis of existing scans, slides, etc.) but Anderson asks for the $40K as an up-front deposit. I ended up going for a second opinion consult at the Seattle Cancer Care Alliance (associated with the University of Washington), who asked for a $1600 deposit up front. The oncologist I spoke with, Dr. Tykodi, is a superb doctor and personable man, knows much about melanoma and current treatments/therapy and the clinic itself seems to provide excellent all around cancer care and treatment. MD Anderson is no doubt good, but so are many other, lesser expensive places. The real challenge is finding a melanoma specialist you trust and feel you can work with. Best of luck.
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- January 1, 2013 at 11:42 pm
In 2011, the total $$$$ reimbursed to MDA by my insurance (plus whatever I did as co-pays) was less than $1000 for a second opinion consultation, including both the oncologist consultation and a suite of blood tests. There was no imaging needed as those were forwarded from my home institution. I went to MDA for the second opinion becauase at the same time I was asking about a particular clinical trial specific to MDA.
My insurance co. didn't pay any more to MDA than they would have paid to my home facility for the same types of services.
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- January 1, 2013 at 11:42 pm
In 2011, the total $$$$ reimbursed to MDA by my insurance (plus whatever I did as co-pays) was less than $1000 for a second opinion consultation, including both the oncologist consultation and a suite of blood tests. There was no imaging needed as those were forwarded from my home institution. I went to MDA for the second opinion becauase at the same time I was asking about a particular clinical trial specific to MDA.
My insurance co. didn't pay any more to MDA than they would have paid to my home facility for the same types of services.
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- January 1, 2013 at 11:42 pm
In 2011, the total $$$$ reimbursed to MDA by my insurance (plus whatever I did as co-pays) was less than $1000 for a second opinion consultation, including both the oncologist consultation and a suite of blood tests. There was no imaging needed as those were forwarded from my home institution. I went to MDA for the second opinion becauase at the same time I was asking about a particular clinical trial specific to MDA.
My insurance co. didn't pay any more to MDA than they would have paid to my home facility for the same types of services.
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- January 2, 2013 at 1:19 am
40K is the high end amount. Here is why:
1) If they have poor scans from your current providers, they will want their own.
2) If they have poor path reports from your current providers, they will wan their own.
3) If they have poor surgical reports from your current providers; they will have another look.
4) If they have poor lab records from your current providers, they will want their own.
So, if your scans are clearly readable and accurate, won't need to re-do. If surgical reports are clear and concise, that will stand. Finally if all the labs and current treatment plan are clear, with documentary backup……………..all that makes a second opinion not only easier, but faster and cheaper because more is understood of your current status by MDA going in
PET, Spiral CT and MRI administration and interpretation alone at MDA can be 18-20K.
Yes, it can be expensive when coupled with transportation and lodging.
Keep an important thing in mind though, MDA is SUPER willing, capable and desirous to work in an outreach manner.
That is to say they are more than willing to partner with local providers that are closer to you and coordinate patient care.
So yes, the 40 K is the high end, but it may or may not be that at all depending on these variables.
A word to the wise. Top flight facilities like MDA see thousands of people every year so the patient is well advised to have it together. That means to have a solid and concise command of the current patient status (with supporting documentation in hand), have a clear expectation of what you want to gain and take away with this second opinion. THIS IS VERY IMPORTANT.
Prepare to have an interactive conversation; that is what they want and that is what the patient needs. This cannot be over emphasized. Know what you want out of the consultation and be prepared to stand your ground, to ask and to answer until you understand.
More than you asked for, but hope it helps.
Cheers,
Charlie S
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- January 2, 2013 at 1:19 am
40K is the high end amount. Here is why:
1) If they have poor scans from your current providers, they will want their own.
2) If they have poor path reports from your current providers, they will wan their own.
3) If they have poor surgical reports from your current providers; they will have another look.
4) If they have poor lab records from your current providers, they will want their own.
So, if your scans are clearly readable and accurate, won't need to re-do. If surgical reports are clear and concise, that will stand. Finally if all the labs and current treatment plan are clear, with documentary backup……………..all that makes a second opinion not only easier, but faster and cheaper because more is understood of your current status by MDA going in
PET, Spiral CT and MRI administration and interpretation alone at MDA can be 18-20K.
Yes, it can be expensive when coupled with transportation and lodging.
Keep an important thing in mind though, MDA is SUPER willing, capable and desirous to work in an outreach manner.
That is to say they are more than willing to partner with local providers that are closer to you and coordinate patient care.
So yes, the 40 K is the high end, but it may or may not be that at all depending on these variables.
A word to the wise. Top flight facilities like MDA see thousands of people every year so the patient is well advised to have it together. That means to have a solid and concise command of the current patient status (with supporting documentation in hand), have a clear expectation of what you want to gain and take away with this second opinion. THIS IS VERY IMPORTANT.
Prepare to have an interactive conversation; that is what they want and that is what the patient needs. This cannot be over emphasized. Know what you want out of the consultation and be prepared to stand your ground, to ask and to answer until you understand.
More than you asked for, but hope it helps.
Cheers,
Charlie S
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- January 2, 2013 at 3:11 am
Thank you for your reply. Yes it was more than I asked for but very informative. At Stage IIIC my husband really does not have a treatment plan with his current oncologist other than surgery when feasible. His current oncologist is a very nice man. Maybe too nice in my opinion. He likes to sugar coat everything. I am too analytical for that and want straight answers and want them fast (don't we all). Since my husband was dignosed in April 2010, I have been the aggressive information seeker. Until recently he was happy with what little information he received. He has started asking more questions, but mostly it is still up to me to advocate for him.
I can see where the cost could quickly reach $40,000 with all the scenarios you mentioned. All his insurance has agreed to pay for (outside of Kansas) is a visit with a melanoma specialist at MD Anderson. Nothing else. We communicated this to them and were surprised that the cost would still be so high. He is currently NED, so we feel we have some time to get all the reports and scans together.
Here's to a more productive new year (as I tip my glass of ice tea).
Lola
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- January 2, 2013 at 3:11 am
Thank you for your reply. Yes it was more than I asked for but very informative. At Stage IIIC my husband really does not have a treatment plan with his current oncologist other than surgery when feasible. His current oncologist is a very nice man. Maybe too nice in my opinion. He likes to sugar coat everything. I am too analytical for that and want straight answers and want them fast (don't we all). Since my husband was dignosed in April 2010, I have been the aggressive information seeker. Until recently he was happy with what little information he received. He has started asking more questions, but mostly it is still up to me to advocate for him.
I can see where the cost could quickly reach $40,000 with all the scenarios you mentioned. All his insurance has agreed to pay for (outside of Kansas) is a visit with a melanoma specialist at MD Anderson. Nothing else. We communicated this to them and were surprised that the cost would still be so high. He is currently NED, so we feel we have some time to get all the reports and scans together.
Here's to a more productive new year (as I tip my glass of ice tea).
Lola
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- January 2, 2013 at 3:16 pm
I too have no treatment plan at this time. I was diagnosed in December 2010 of the Stage IV melanoma. Since then I've have had cyber knife radiation to the head in March 2011; then IPI Yervoy in May to July 2011 of which I only could take three of the four treatments before I developed the bad side effect of colitis; then August 2012 I had radiation to the head.
I do not feel bad and the IPI did work for me but now there are threesubcutaneous nodules that have more than doubled in size since my previous scan back in June 2012 and I also the melanoma in my lower back L4, L2 that have increased.
My doctor tells me the only treatment I am eligible for is conventional treatment of Paclitaxel/Carboplatin (chemotherapy) which I am of the understanding you get really sick from, lose your hair, etc. and it doesn't have a favorable percentage of success. He tells me he wouldn't mind if I waited longer to treat since I do not feel that bad yet.
I too am like you I don't know if my doctor is being aggressive enough either. He is very nice but I feel he could look into more options for me.
He tells me I am not eligible for the new PD1 because of the bad side effect I had with Yervoy. I also am not BRAF positive so that limits me to my options as well.
I keep researching but do not come up with other options either. It seems all of the progress they have made with melanoma is for those that have the BRAF mutation.
Just wondering if anyone else is not treating and just kind of waiting and seeing. It drives you crazy to think this disease is in your body spreading at its leisure without doing some kind of treatment to prevent it from spreading.
By the way I am treating at Moffitt Cancer Center here in FL.
Karen in FL
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- January 2, 2013 at 3:16 pm
I too have no treatment plan at this time. I was diagnosed in December 2010 of the Stage IV melanoma. Since then I've have had cyber knife radiation to the head in March 2011; then IPI Yervoy in May to July 2011 of which I only could take three of the four treatments before I developed the bad side effect of colitis; then August 2012 I had radiation to the head.
I do not feel bad and the IPI did work for me but now there are threesubcutaneous nodules that have more than doubled in size since my previous scan back in June 2012 and I also the melanoma in my lower back L4, L2 that have increased.
My doctor tells me the only treatment I am eligible for is conventional treatment of Paclitaxel/Carboplatin (chemotherapy) which I am of the understanding you get really sick from, lose your hair, etc. and it doesn't have a favorable percentage of success. He tells me he wouldn't mind if I waited longer to treat since I do not feel that bad yet.
I too am like you I don't know if my doctor is being aggressive enough either. He is very nice but I feel he could look into more options for me.
He tells me I am not eligible for the new PD1 because of the bad side effect I had with Yervoy. I also am not BRAF positive so that limits me to my options as well.
I keep researching but do not come up with other options either. It seems all of the progress they have made with melanoma is for those that have the BRAF mutation.
Just wondering if anyone else is not treating and just kind of waiting and seeing. It drives you crazy to think this disease is in your body spreading at its leisure without doing some kind of treatment to prevent it from spreading.
By the way I am treating at Moffitt Cancer Center here in FL.
Karen in FL
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- January 2, 2013 at 3:16 pm
I too have no treatment plan at this time. I was diagnosed in December 2010 of the Stage IV melanoma. Since then I've have had cyber knife radiation to the head in March 2011; then IPI Yervoy in May to July 2011 of which I only could take three of the four treatments before I developed the bad side effect of colitis; then August 2012 I had radiation to the head.
I do not feel bad and the IPI did work for me but now there are threesubcutaneous nodules that have more than doubled in size since my previous scan back in June 2012 and I also the melanoma in my lower back L4, L2 that have increased.
My doctor tells me the only treatment I am eligible for is conventional treatment of Paclitaxel/Carboplatin (chemotherapy) which I am of the understanding you get really sick from, lose your hair, etc. and it doesn't have a favorable percentage of success. He tells me he wouldn't mind if I waited longer to treat since I do not feel that bad yet.
I too am like you I don't know if my doctor is being aggressive enough either. He is very nice but I feel he could look into more options for me.
He tells me I am not eligible for the new PD1 because of the bad side effect I had with Yervoy. I also am not BRAF positive so that limits me to my options as well.
I keep researching but do not come up with other options either. It seems all of the progress they have made with melanoma is for those that have the BRAF mutation.
Just wondering if anyone else is not treating and just kind of waiting and seeing. It drives you crazy to think this disease is in your body spreading at its leisure without doing some kind of treatment to prevent it from spreading.
By the way I am treating at Moffitt Cancer Center here in FL.
Karen in FL
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- January 2, 2013 at 6:38 pm
Hi Karen, I too am in a similar situation as you, currently waiting and watching at stage IV. I am however about to have the usual set of scans too see if there is much change since the last set in May 2011. My oncologist is recommending the TIL treatment at this time and hopefully SCCA in Seattle will be on board soon with this protocol so I could be treated local if that is the route I choose. It is very nerve racking to sit idle with no plan. However, I remind myself of the disaster that I experienced with IPI, severe colitis from 1 dose and the long time it took to recover from all of that. So I try to remain calm and hopeful that the right treatment will come along soon for me. It's a fine line of waiting and watching or choosing something that may not work out well for you …..or, could be your ticket out of here! Either way, it's all a struggle and managing the stress it causes gets to be a real challenge! I just keep believing that it is all going to work out for me and when I look back I will see how each step of the way was my next clue to the next level of treatment and eventually the end of my melanoma battle!
Best wishes for you and hopefully soon we both find the cures we're seeking!
Swanee
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- January 2, 2013 at 6:38 pm
Hi Karen, I too am in a similar situation as you, currently waiting and watching at stage IV. I am however about to have the usual set of scans too see if there is much change since the last set in May 2011. My oncologist is recommending the TIL treatment at this time and hopefully SCCA in Seattle will be on board soon with this protocol so I could be treated local if that is the route I choose. It is very nerve racking to sit idle with no plan. However, I remind myself of the disaster that I experienced with IPI, severe colitis from 1 dose and the long time it took to recover from all of that. So I try to remain calm and hopeful that the right treatment will come along soon for me. It's a fine line of waiting and watching or choosing something that may not work out well for you …..or, could be your ticket out of here! Either way, it's all a struggle and managing the stress it causes gets to be a real challenge! I just keep believing that it is all going to work out for me and when I look back I will see how each step of the way was my next clue to the next level of treatment and eventually the end of my melanoma battle!
Best wishes for you and hopefully soon we both find the cures we're seeking!
Swanee
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- January 2, 2013 at 8:58 pm
Hi Swanee,
Thanks for your response. I am not sure I know about the TIL treatment. I looked it up on the internet and saw a couple of videos. One video the person had melanoma back in 2009 and was totally cured. Why don't they use TIL for all Stage IV melanoma patients? It seemed that the tumor they removed from the patient had to have a certain criteria before it would work effectively with TIL. But my doctor has not mentioned TIL at all. Do you know if there are any other criteria you have to have to be considered for TIL?
It seems like you should have had more scans than since May 2011. I would be afraid to go that long without a scan. My last scan was in December 2012 and I had not had one since June 2012. I was kind of a wreck waiting six months in between because as you know every trwinge you have you think it is melanoma growing somewhere else in your body.
Also are you BRAF positive? That seems to be the big drawback for me as all of the new treatments have to have the patient be BRAF positive and I am BRAF negative. Also when were you first diagnosed and was IPI the only treatment you have had for the melanoma?
I'm glad you responded because everyone else talks about the treatments they are on and I have been on the wait and see list so I am sorry you share the same story as me but it is somewhat comforting to know there are others that are on the wait and see list as well.
Hopefully, we will have some breakthrough on this disease soon. Also, I do not feel that bad yet are you also feeling somewhat healthy for now?
Sorry for the many questions but it is nice to have someone in the same situation.
Thanks,
Karen in FL
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- January 2, 2013 at 8:58 pm
Hi Swanee,
Thanks for your response. I am not sure I know about the TIL treatment. I looked it up on the internet and saw a couple of videos. One video the person had melanoma back in 2009 and was totally cured. Why don't they use TIL for all Stage IV melanoma patients? It seemed that the tumor they removed from the patient had to have a certain criteria before it would work effectively with TIL. But my doctor has not mentioned TIL at all. Do you know if there are any other criteria you have to have to be considered for TIL?
It seems like you should have had more scans than since May 2011. I would be afraid to go that long without a scan. My last scan was in December 2012 and I had not had one since June 2012. I was kind of a wreck waiting six months in between because as you know every trwinge you have you think it is melanoma growing somewhere else in your body.
Also are you BRAF positive? That seems to be the big drawback for me as all of the new treatments have to have the patient be BRAF positive and I am BRAF negative. Also when were you first diagnosed and was IPI the only treatment you have had for the melanoma?
I'm glad you responded because everyone else talks about the treatments they are on and I have been on the wait and see list so I am sorry you share the same story as me but it is somewhat comforting to know there are others that are on the wait and see list as well.
Hopefully, we will have some breakthrough on this disease soon. Also, I do not feel that bad yet are you also feeling somewhat healthy for now?
Sorry for the many questions but it is nice to have someone in the same situation.
Thanks,
Karen in FL
-
- January 2, 2013 at 8:58 pm
Hi Swanee,
Thanks for your response. I am not sure I know about the TIL treatment. I looked it up on the internet and saw a couple of videos. One video the person had melanoma back in 2009 and was totally cured. Why don't they use TIL for all Stage IV melanoma patients? It seemed that the tumor they removed from the patient had to have a certain criteria before it would work effectively with TIL. But my doctor has not mentioned TIL at all. Do you know if there are any other criteria you have to have to be considered for TIL?
It seems like you should have had more scans than since May 2011. I would be afraid to go that long without a scan. My last scan was in December 2012 and I had not had one since June 2012. I was kind of a wreck waiting six months in between because as you know every trwinge you have you think it is melanoma growing somewhere else in your body.
Also are you BRAF positive? That seems to be the big drawback for me as all of the new treatments have to have the patient be BRAF positive and I am BRAF negative. Also when were you first diagnosed and was IPI the only treatment you have had for the melanoma?
I'm glad you responded because everyone else talks about the treatments they are on and I have been on the wait and see list so I am sorry you share the same story as me but it is somewhat comforting to know there are others that are on the wait and see list as well.
Hopefully, we will have some breakthrough on this disease soon. Also, I do not feel that bad yet are you also feeling somewhat healthy for now?
Sorry for the many questions but it is nice to have someone in the same situation.
Thanks,
Karen in FL
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- January 2, 2013 at 10:58 pm
There is a patient story by someone who had the TIL treatment at NIH. You might want to read it.
http://www.melanoma.org/community/patient-stories/bob-heffernan
In that story he gives a link to the clinical trial info. It turns out to be a phase 2 trial that has been completed. The dates are on there. But presumably there will be a phase 3, if phase 2 had some success. The exclusion details are at the link.
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- January 2, 2013 at 10:58 pm
There is a patient story by someone who had the TIL treatment at NIH. You might want to read it.
http://www.melanoma.org/community/patient-stories/bob-heffernan
In that story he gives a link to the clinical trial info. It turns out to be a phase 2 trial that has been completed. The dates are on there. But presumably there will be a phase 3, if phase 2 had some success. The exclusion details are at the link.
-
- January 2, 2013 at 10:58 pm
There is a patient story by someone who had the TIL treatment at NIH. You might want to read it.
http://www.melanoma.org/community/patient-stories/bob-heffernan
In that story he gives a link to the clinical trial info. It turns out to be a phase 2 trial that has been completed. The dates are on there. But presumably there will be a phase 3, if phase 2 had some success. The exclusion details are at the link.
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- January 2, 2013 at 11:35 pm
Yes, there is definitely criteria you must meet and different studies going on mainly at NCI/NIH or MD Anderson and perhaps a few other places. Do a search on MPIP for TIL therapy and you will find much more information. It is not cost effective treatment and that is probably the main reason it is not being offered as a first line treatment. I believe at NCI, if they accept you, they will pay for all of it, and MD Anderson will work with your insurance company as far as I know. I almost started the ball rolling with NCI but then decided I didn't want to think about it until 2013.
Yes, it is a bit nerve racking to go without scans but I feel pretty good and hopefully would know when I felt it progressing. Right after scans in May 2012 (not 2011, oops!) I had surgery to remove largest tumor and have felt pretty good since although there is more disease in my right axilla but doesn't feel like it's growing aggressively. The scans scare me too as I know they are not good for us either! I was scheduled for scans in November but said the "heck with it," I decided I wanted to enjoy my holidays, trip to Hawaii and if there is any more bad news for me with regard to melanoma….it will just have to wait until 2013!
Honestly, I have felt good since diagnosis and because I live in a heightened state of living, I think it just gives me energy and I don't want to waste a day to melanoma if I can possibly help it. As long as I am in control, I feel I can overcome my fear and live with enthusiasm. Once you are feeling sick and debilitated it becomes a greater challenge to remain so optimistic! It's difficult too, when you are not actively being treated, you feel more vulnerable and fearful and worried about every little muscle ache, it can get the best of you if you let it!
Not sure if you have read my profile but it will tell you a lot about my treatments since being diagnosed. I am not BRAF + and don't have the HLA type most studies require. Currently, my oncologist feels the TIL treatment is my best option at this time.
If you like Karen, you can email me ([email protected]) and I will be glad to continue conversation or answer more questions.
Take care,
Swanee
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- January 4, 2013 at 3:10 pm
HONESTLY, I have never heard of such, but I am just ONE PERSON. We QUICKLY headed to MDA AGAIN after Wayne was found to have METS to liver, lungs, sternum, spine. With our BCBS Ins., we have paid a TOTAL of about $248.00 for the entire year ! We have been going every 28 days since April. Twice in April actually. That is PET SCANS, SEDATED BRAIN MRI'S – the works ! We also have AFLAC which has been a MERCIFUL BLESSING.
I just have never ever heard of any such amount for a second opinion and we've been going there for 22 years for 3 cancers.
HOPE YOU GET THE HELP YOU NEED and can report great results soon !
BLESSINGS,
Nancy (devoted wife of 3X Warrior Wayne)
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- January 4, 2013 at 3:10 pm
HONESTLY, I have never heard of such, but I am just ONE PERSON. We QUICKLY headed to MDA AGAIN after Wayne was found to have METS to liver, lungs, sternum, spine. With our BCBS Ins., we have paid a TOTAL of about $248.00 for the entire year ! We have been going every 28 days since April. Twice in April actually. That is PET SCANS, SEDATED BRAIN MRI'S – the works ! We also have AFLAC which has been a MERCIFUL BLESSING.
I just have never ever heard of any such amount for a second opinion and we've been going there for 22 years for 3 cancers.
HOPE YOU GET THE HELP YOU NEED and can report great results soon !
BLESSINGS,
Nancy (devoted wife of 3X Warrior Wayne)
-
- January 4, 2013 at 3:10 pm
HONESTLY, I have never heard of such, but I am just ONE PERSON. We QUICKLY headed to MDA AGAIN after Wayne was found to have METS to liver, lungs, sternum, spine. With our BCBS Ins., we have paid a TOTAL of about $248.00 for the entire year ! We have been going every 28 days since April. Twice in April actually. That is PET SCANS, SEDATED BRAIN MRI'S – the works ! We also have AFLAC which has been a MERCIFUL BLESSING.
I just have never ever heard of any such amount for a second opinion and we've been going there for 22 years for 3 cancers.
HOPE YOU GET THE HELP YOU NEED and can report great results soon !
BLESSINGS,
Nancy (devoted wife of 3X Warrior Wayne)
-
- January 2, 2013 at 11:35 pm
Yes, there is definitely criteria you must meet and different studies going on mainly at NCI/NIH or MD Anderson and perhaps a few other places. Do a search on MPIP for TIL therapy and you will find much more information. It is not cost effective treatment and that is probably the main reason it is not being offered as a first line treatment. I believe at NCI, if they accept you, they will pay for all of it, and MD Anderson will work with your insurance company as far as I know. I almost started the ball rolling with NCI but then decided I didn't want to think about it until 2013.
Yes, it is a bit nerve racking to go without scans but I feel pretty good and hopefully would know when I felt it progressing. Right after scans in May 2012 (not 2011, oops!) I had surgery to remove largest tumor and have felt pretty good since although there is more disease in my right axilla but doesn't feel like it's growing aggressively. The scans scare me too as I know they are not good for us either! I was scheduled for scans in November but said the "heck with it," I decided I wanted to enjoy my holidays, trip to Hawaii and if there is any more bad news for me with regard to melanoma….it will just have to wait until 2013!
Honestly, I have felt good since diagnosis and because I live in a heightened state of living, I think it just gives me energy and I don't want to waste a day to melanoma if I can possibly help it. As long as I am in control, I feel I can overcome my fear and live with enthusiasm. Once you are feeling sick and debilitated it becomes a greater challenge to remain so optimistic! It's difficult too, when you are not actively being treated, you feel more vulnerable and fearful and worried about every little muscle ache, it can get the best of you if you let it!
Not sure if you have read my profile but it will tell you a lot about my treatments since being diagnosed. I am not BRAF + and don't have the HLA type most studies require. Currently, my oncologist feels the TIL treatment is my best option at this time.
If you like Karen, you can email me ([email protected]) and I will be glad to continue conversation or answer more questions.
Take care,
Swanee
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- January 2, 2013 at 11:35 pm
Yes, there is definitely criteria you must meet and different studies going on mainly at NCI/NIH or MD Anderson and perhaps a few other places. Do a search on MPIP for TIL therapy and you will find much more information. It is not cost effective treatment and that is probably the main reason it is not being offered as a first line treatment. I believe at NCI, if they accept you, they will pay for all of it, and MD Anderson will work with your insurance company as far as I know. I almost started the ball rolling with NCI but then decided I didn't want to think about it until 2013.
Yes, it is a bit nerve racking to go without scans but I feel pretty good and hopefully would know when I felt it progressing. Right after scans in May 2012 (not 2011, oops!) I had surgery to remove largest tumor and have felt pretty good since although there is more disease in my right axilla but doesn't feel like it's growing aggressively. The scans scare me too as I know they are not good for us either! I was scheduled for scans in November but said the "heck with it," I decided I wanted to enjoy my holidays, trip to Hawaii and if there is any more bad news for me with regard to melanoma….it will just have to wait until 2013!
Honestly, I have felt good since diagnosis and because I live in a heightened state of living, I think it just gives me energy and I don't want to waste a day to melanoma if I can possibly help it. As long as I am in control, I feel I can overcome my fear and live with enthusiasm. Once you are feeling sick and debilitated it becomes a greater challenge to remain so optimistic! It's difficult too, when you are not actively being treated, you feel more vulnerable and fearful and worried about every little muscle ache, it can get the best of you if you let it!
Not sure if you have read my profile but it will tell you a lot about my treatments since being diagnosed. I am not BRAF + and don't have the HLA type most studies require. Currently, my oncologist feels the TIL treatment is my best option at this time.
If you like Karen, you can email me ([email protected]) and I will be glad to continue conversation or answer more questions.
Take care,
Swanee
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- January 2, 2013 at 6:38 pm
Hi Karen, I too am in a similar situation as you, currently waiting and watching at stage IV. I am however about to have the usual set of scans too see if there is much change since the last set in May 2011. My oncologist is recommending the TIL treatment at this time and hopefully SCCA in Seattle will be on board soon with this protocol so I could be treated local if that is the route I choose. It is very nerve racking to sit idle with no plan. However, I remind myself of the disaster that I experienced with IPI, severe colitis from 1 dose and the long time it took to recover from all of that. So I try to remain calm and hopeful that the right treatment will come along soon for me. It's a fine line of waiting and watching or choosing something that may not work out well for you …..or, could be your ticket out of here! Either way, it's all a struggle and managing the stress it causes gets to be a real challenge! I just keep believing that it is all going to work out for me and when I look back I will see how each step of the way was my next clue to the next level of treatment and eventually the end of my melanoma battle!
Best wishes for you and hopefully soon we both find the cures we're seeking!
Swanee
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- January 2, 2013 at 3:11 am
Thank you for your reply. Yes it was more than I asked for but very informative. At Stage IIIC my husband really does not have a treatment plan with his current oncologist other than surgery when feasible. His current oncologist is a very nice man. Maybe too nice in my opinion. He likes to sugar coat everything. I am too analytical for that and want straight answers and want them fast (don't we all). Since my husband was dignosed in April 2010, I have been the aggressive information seeker. Until recently he was happy with what little information he received. He has started asking more questions, but mostly it is still up to me to advocate for him.
I can see where the cost could quickly reach $40,000 with all the scenarios you mentioned. All his insurance has agreed to pay for (outside of Kansas) is a visit with a melanoma specialist at MD Anderson. Nothing else. We communicated this to them and were surprised that the cost would still be so high. He is currently NED, so we feel we have some time to get all the reports and scans together.
Here's to a more productive new year (as I tip my glass of ice tea).
Lola
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- January 2, 2013 at 1:19 am
40K is the high end amount. Here is why:
1) If they have poor scans from your current providers, they will want their own.
2) If they have poor path reports from your current providers, they will wan their own.
3) If they have poor surgical reports from your current providers; they will have another look.
4) If they have poor lab records from your current providers, they will want their own.
So, if your scans are clearly readable and accurate, won't need to re-do. If surgical reports are clear and concise, that will stand. Finally if all the labs and current treatment plan are clear, with documentary backup……………..all that makes a second opinion not only easier, but faster and cheaper because more is understood of your current status by MDA going in
PET, Spiral CT and MRI administration and interpretation alone at MDA can be 18-20K.
Yes, it can be expensive when coupled with transportation and lodging.
Keep an important thing in mind though, MDA is SUPER willing, capable and desirous to work in an outreach manner.
That is to say they are more than willing to partner with local providers that are closer to you and coordinate patient care.
So yes, the 40 K is the high end, but it may or may not be that at all depending on these variables.
A word to the wise. Top flight facilities like MDA see thousands of people every year so the patient is well advised to have it together. That means to have a solid and concise command of the current patient status (with supporting documentation in hand), have a clear expectation of what you want to gain and take away with this second opinion. THIS IS VERY IMPORTANT.
Prepare to have an interactive conversation; that is what they want and that is what the patient needs. This cannot be over emphasized. Know what you want out of the consultation and be prepared to stand your ground, to ask and to answer until you understand.
More than you asked for, but hope it helps.
Cheers,
Charlie S
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