› Forums › General Melanoma Community › Scan results
- This topic has 18 replies, 5 voices, and was last updated 11 years, 1 month ago by
randallgford.
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- February 27, 2013 at 6:24 pm
We had our second onc visit and resuls of Pet show numerous lesions on lungs, liver, and
abdomen. Brain Mri looks clear but will repeat in 8 weeks. He wants to start Yervoy immediately.
wont get braf mutation for 3 weeks but doesnt want to wait. He talked about some chemo
drugs we could add later.
Planned to go to Moffit for a consultation tomorrow but they just called and said they are not on
our insurance and recommended we go to another facility. We have Sylvester here in Miami,
We had our second onc visit and resuls of Pet show numerous lesions on lungs, liver, and
abdomen. Brain Mri looks clear but will repeat in 8 weeks. He wants to start Yervoy immediately.
wont get braf mutation for 3 weeks but doesnt want to wait. He talked about some chemo
drugs we could add later.
Planned to go to Moffit for a consultation tomorrow but they just called and said they are not on
our insurance and recommended we go to another facility. We have Sylvester here in Miami,
or Mt Sinai Dr Lutzky who is listed as a melanoma specialist so we are debating going there
instead for a second opinion. I still kind of want to go to Moffit and just pay the $1500 consult fee.
But we couldnt get treatment there, so hubby is leaning against going. So stressful.
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- February 27, 2013 at 7:43 pm
Oh, honestly! I get SO disgusted with our dysfunctional profit-driven healthcare "system"! One insurance company covers an important consult and another doesn't. Why do we Americans put up with this bs?!
Anyway… the main reason to go to Moffitt as opposed to any other melanoma specialty center is because Moffitt offers so many clinical trials. The newest and most promising (not necessarily best) melanoma treatments are in clinical trials. Clinical trials themselves are free, but there can be sigificant travel and lodging expenses and sometimes some medical test expenses before entering the trial. So this is a significant consideration. In your position, I would probably go with ipi (Yervoy) as the best available option. It may be just the perfect thing for your husband. If the ipi doesn't work, then you can go to Moffitt to discuss clinical trials.
HOWEVER— I still have reservations about the treatment center you are going to. First, the oncologist said that he would choose Zelboraf as a first line treatment if your husband is BRAF positive. I already posted about my discomfort with that approach. Now he is making treatment decisions based on a PET scan. PET scans are usually only used for a "quick and dirty" look at possible tumors. They lack resolution and give many false positives. The more usual (and I would say required) test would be CT scans with and without contrast. How will the doctor know exactly how many and how large the tumors are now versus how many and large they are after ipi if he uses a "quick and dirty" imaging method.
So even if your husband decides to go with the ipi (which may be exactly the right thing to do), I hope you take the time to assure yourself that you are REALLY going to a top-notch melanoma specialty center that has a lot of experience with ipi. And I would insist on contrast CT scans before starting the ipi. Not only is CT the better imaging method, but Moffitt will need to review the CT scans (and the brain MRI) if you do decide to consult with them at a later date. I doubt that they will accept PET scans.
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- February 27, 2013 at 7:43 pm
Oh, honestly! I get SO disgusted with our dysfunctional profit-driven healthcare "system"! One insurance company covers an important consult and another doesn't. Why do we Americans put up with this bs?!
Anyway… the main reason to go to Moffitt as opposed to any other melanoma specialty center is because Moffitt offers so many clinical trials. The newest and most promising (not necessarily best) melanoma treatments are in clinical trials. Clinical trials themselves are free, but there can be sigificant travel and lodging expenses and sometimes some medical test expenses before entering the trial. So this is a significant consideration. In your position, I would probably go with ipi (Yervoy) as the best available option. It may be just the perfect thing for your husband. If the ipi doesn't work, then you can go to Moffitt to discuss clinical trials.
HOWEVER— I still have reservations about the treatment center you are going to. First, the oncologist said that he would choose Zelboraf as a first line treatment if your husband is BRAF positive. I already posted about my discomfort with that approach. Now he is making treatment decisions based on a PET scan. PET scans are usually only used for a "quick and dirty" look at possible tumors. They lack resolution and give many false positives. The more usual (and I would say required) test would be CT scans with and without contrast. How will the doctor know exactly how many and how large the tumors are now versus how many and large they are after ipi if he uses a "quick and dirty" imaging method.
So even if your husband decides to go with the ipi (which may be exactly the right thing to do), I hope you take the time to assure yourself that you are REALLY going to a top-notch melanoma specialty center that has a lot of experience with ipi. And I would insist on contrast CT scans before starting the ipi. Not only is CT the better imaging method, but Moffitt will need to review the CT scans (and the brain MRI) if you do decide to consult with them at a later date. I doubt that they will accept PET scans.
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- March 2, 2013 at 6:34 pm
Thanks for your informative reply. We decided to go ahead to Moffit on Thursday and took our scans. We discussed our oncologists treatment plans and talked about clinical trials. Dr. Kucharak (sp?) was the doctor, she was not too keen on us
thinking of a clinical trial. She said my husband had "a fair amount" of cancer in him and should start treatment immediately her preference tho was to wait for BRAF (another 2 weeks according to center) and do zelboraf right away. I asked why not Yervoy – i asked if it would hurt to do 1 treatment and switch to Zelb if BRaf positive. She just said you are doing treatment for nothing then?? Curiously she had no issue with the Pet scan, I read this when I got back so I will inquire about the body CT. She thinks Yervoy and Z are where we should start and approach clinical trial down the line. She referred us to a social worker type who may help appeal to our ins co if needed. I dont know if it was because we didnt have insurance (I dont think so, they seemed genuine to me).
Our oncologist works closely with Dr. Lutzky at Mt Sinai, and Dr. Feun at Sylvester so I feel he will do the right thing considering clinical trials in the future. Or I supose we could appeal and try to get help if a Moffit trial becomes an issue. She was going to call our onc and discuss Randall's case. But my husband is determined to start the Yervoy immediately and when we walked out of Moffit, he got on his cell and called our onc and told them he wanted to start treatment asap, which they said could be Tuesday. I HATE THIS.
I have some peace that Moffit agreed with Yervoy or Zelb, Im still glad I went.
Anyway thanks everyone for your advice and I will keep you posted.
Vicki
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- March 2, 2013 at 6:34 pm
Thanks for your informative reply. We decided to go ahead to Moffit on Thursday and took our scans. We discussed our oncologists treatment plans and talked about clinical trials. Dr. Kucharak (sp?) was the doctor, she was not too keen on us
thinking of a clinical trial. She said my husband had "a fair amount" of cancer in him and should start treatment immediately her preference tho was to wait for BRAF (another 2 weeks according to center) and do zelboraf right away. I asked why not Yervoy – i asked if it would hurt to do 1 treatment and switch to Zelb if BRaf positive. She just said you are doing treatment for nothing then?? Curiously she had no issue with the Pet scan, I read this when I got back so I will inquire about the body CT. She thinks Yervoy and Z are where we should start and approach clinical trial down the line. She referred us to a social worker type who may help appeal to our ins co if needed. I dont know if it was because we didnt have insurance (I dont think so, they seemed genuine to me).
Our oncologist works closely with Dr. Lutzky at Mt Sinai, and Dr. Feun at Sylvester so I feel he will do the right thing considering clinical trials in the future. Or I supose we could appeal and try to get help if a Moffit trial becomes an issue. She was going to call our onc and discuss Randall's case. But my husband is determined to start the Yervoy immediately and when we walked out of Moffit, he got on his cell and called our onc and told them he wanted to start treatment asap, which they said could be Tuesday. I HATE THIS.
I have some peace that Moffit agreed with Yervoy or Zelb, Im still glad I went.
Anyway thanks everyone for your advice and I will keep you posted.
Vicki
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- March 2, 2013 at 6:34 pm
Thanks for your informative reply. We decided to go ahead to Moffit on Thursday and took our scans. We discussed our oncologists treatment plans and talked about clinical trials. Dr. Kucharak (sp?) was the doctor, she was not too keen on us
thinking of a clinical trial. She said my husband had "a fair amount" of cancer in him and should start treatment immediately her preference tho was to wait for BRAF (another 2 weeks according to center) and do zelboraf right away. I asked why not Yervoy – i asked if it would hurt to do 1 treatment and switch to Zelb if BRaf positive. She just said you are doing treatment for nothing then?? Curiously she had no issue with the Pet scan, I read this when I got back so I will inquire about the body CT. She thinks Yervoy and Z are where we should start and approach clinical trial down the line. She referred us to a social worker type who may help appeal to our ins co if needed. I dont know if it was because we didnt have insurance (I dont think so, they seemed genuine to me).
Our oncologist works closely with Dr. Lutzky at Mt Sinai, and Dr. Feun at Sylvester so I feel he will do the right thing considering clinical trials in the future. Or I supose we could appeal and try to get help if a Moffit trial becomes an issue. She was going to call our onc and discuss Randall's case. But my husband is determined to start the Yervoy immediately and when we walked out of Moffit, he got on his cell and called our onc and told them he wanted to start treatment asap, which they said could be Tuesday. I HATE THIS.
I have some peace that Moffit agreed with Yervoy or Zelb, Im still glad I went.
Anyway thanks everyone for your advice and I will keep you posted.
Vicki
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- March 3, 2013 at 1:04 am
I have no doubt that Moffit would "accept" the PET scans, just that they would want the CT's for addition work as, POW mentioined. If your husbands tumor load is not at a critical point then many Oncologists would rather start with Yervoy since it can take from weeks to months to start showing if it is working. Zelboraft, if working would start immediately, but is more apt to stop working sooner than the Yervoy, if it is working.
The Clinical I would look the hardest at is the PD-1. You might also check out the requirements for entry into these trials. There just isn't enough locations with openings for it.
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- March 3, 2013 at 1:04 am
I have no doubt that Moffit would "accept" the PET scans, just that they would want the CT's for addition work as, POW mentioined. If your husbands tumor load is not at a critical point then many Oncologists would rather start with Yervoy since it can take from weeks to months to start showing if it is working. Zelboraft, if working would start immediately, but is more apt to stop working sooner than the Yervoy, if it is working.
The Clinical I would look the hardest at is the PD-1. You might also check out the requirements for entry into these trials. There just isn't enough locations with openings for it.
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- March 4, 2013 at 9:55 am
Thanks I will.
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- March 4, 2013 at 9:55 am
Thanks I will.
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- March 4, 2013 at 9:55 am
Thanks I will.
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- March 3, 2013 at 1:04 am
I have no doubt that Moffit would "accept" the PET scans, just that they would want the CT's for addition work as, POW mentioined. If your husbands tumor load is not at a critical point then many Oncologists would rather start with Yervoy since it can take from weeks to months to start showing if it is working. Zelboraft, if working would start immediately, but is more apt to stop working sooner than the Yervoy, if it is working.
The Clinical I would look the hardest at is the PD-1. You might also check out the requirements for entry into these trials. There just isn't enough locations with openings for it.
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- February 27, 2013 at 7:43 pm
Oh, honestly! I get SO disgusted with our dysfunctional profit-driven healthcare "system"! One insurance company covers an important consult and another doesn't. Why do we Americans put up with this bs?!
Anyway… the main reason to go to Moffitt as opposed to any other melanoma specialty center is because Moffitt offers so many clinical trials. The newest and most promising (not necessarily best) melanoma treatments are in clinical trials. Clinical trials themselves are free, but there can be sigificant travel and lodging expenses and sometimes some medical test expenses before entering the trial. So this is a significant consideration. In your position, I would probably go with ipi (Yervoy) as the best available option. It may be just the perfect thing for your husband. If the ipi doesn't work, then you can go to Moffitt to discuss clinical trials.
HOWEVER— I still have reservations about the treatment center you are going to. First, the oncologist said that he would choose Zelboraf as a first line treatment if your husband is BRAF positive. I already posted about my discomfort with that approach. Now he is making treatment decisions based on a PET scan. PET scans are usually only used for a "quick and dirty" look at possible tumors. They lack resolution and give many false positives. The more usual (and I would say required) test would be CT scans with and without contrast. How will the doctor know exactly how many and how large the tumors are now versus how many and large they are after ipi if he uses a "quick and dirty" imaging method.
So even if your husband decides to go with the ipi (which may be exactly the right thing to do), I hope you take the time to assure yourself that you are REALLY going to a top-notch melanoma specialty center that has a lot of experience with ipi. And I would insist on contrast CT scans before starting the ipi. Not only is CT the better imaging method, but Moffitt will need to review the CT scans (and the brain MRI) if you do decide to consult with them at a later date. I doubt that they will accept PET scans.
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- February 28, 2013 at 1:24 am
Hi Vicki,
My Mom was a patient of Dr. Lutzky her whole fight. He is a wonderful wonderful person. However, like I said earlier I wish we went to Moffitt earlier on in our fight. Mt. Sinai can't offer you the trials that Moffitt can. I just feel like I hit so many brick walls asking and asking about other clinical trial. Spending that $1,500 will be the best spent money!!!!!!
I do want to tell you a girl Kelly on the boards her brother is a patient of Dr. Lutzky and did IL2 and I believe Yervoy first before turning to IL2. and is doing well.
Wishing you the best………
Wendy
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- February 28, 2013 at 1:24 am
Hi Vicki,
My Mom was a patient of Dr. Lutzky her whole fight. He is a wonderful wonderful person. However, like I said earlier I wish we went to Moffitt earlier on in our fight. Mt. Sinai can't offer you the trials that Moffitt can. I just feel like I hit so many brick walls asking and asking about other clinical trial. Spending that $1,500 will be the best spent money!!!!!!
I do want to tell you a girl Kelly on the boards her brother is a patient of Dr. Lutzky and did IL2 and I believe Yervoy first before turning to IL2. and is doing well.
Wishing you the best………
Wendy
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- February 28, 2013 at 1:24 am
Hi Vicki,
My Mom was a patient of Dr. Lutzky her whole fight. He is a wonderful wonderful person. However, like I said earlier I wish we went to Moffitt earlier on in our fight. Mt. Sinai can't offer you the trials that Moffitt can. I just feel like I hit so many brick walls asking and asking about other clinical trial. Spending that $1,500 will be the best spent money!!!!!!
I do want to tell you a girl Kelly on the boards her brother is a patient of Dr. Lutzky and did IL2 and I believe Yervoy first before turning to IL2. and is doing well.
Wishing you the best………
Wendy
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- February 28, 2013 at 4:24 pm
I'm so sorry you're having to go through this, and especially that your insurance won't cover Moffit! It was a different situation, but when my stepdad had a brain tumor, he was treated at a "normal" hospital, but got a 2nd opinion at Mayo Clinic, and he had to pay out of pocket, but it was totally worth it for peace of mind.
One thing I wanted to point out though is, clinical trials aren't always free. I'm in one now, and ipi is free, but if I'd gotten interferon, my insurance would have to pay for it, and they also have to pay for the administration of the drug, and, like POW said, all the tests that go along with the trial. They may all be different, but that's how mine works, basically nothing is free except the drug they are trying to prove works better than the standard of care.
Also, my insurance company originally said they wouldn't pay for participation in a clinical trial, but Mayo took care of that for me, so Moffit may be able to get your insurance company to pay for you to go there, it would be worth a shot at least. I think insurance companies just automatically say NO to everything!
Best of luck to you and your husband!
Melissa
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- February 28, 2013 at 4:24 pm
I'm so sorry you're having to go through this, and especially that your insurance won't cover Moffit! It was a different situation, but when my stepdad had a brain tumor, he was treated at a "normal" hospital, but got a 2nd opinion at Mayo Clinic, and he had to pay out of pocket, but it was totally worth it for peace of mind.
One thing I wanted to point out though is, clinical trials aren't always free. I'm in one now, and ipi is free, but if I'd gotten interferon, my insurance would have to pay for it, and they also have to pay for the administration of the drug, and, like POW said, all the tests that go along with the trial. They may all be different, but that's how mine works, basically nothing is free except the drug they are trying to prove works better than the standard of care.
Also, my insurance company originally said they wouldn't pay for participation in a clinical trial, but Mayo took care of that for me, so Moffit may be able to get your insurance company to pay for you to go there, it would be worth a shot at least. I think insurance companies just automatically say NO to everything!
Best of luck to you and your husband!
Melissa
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- February 28, 2013 at 4:24 pm
I'm so sorry you're having to go through this, and especially that your insurance won't cover Moffit! It was a different situation, but when my stepdad had a brain tumor, he was treated at a "normal" hospital, but got a 2nd opinion at Mayo Clinic, and he had to pay out of pocket, but it was totally worth it for peace of mind.
One thing I wanted to point out though is, clinical trials aren't always free. I'm in one now, and ipi is free, but if I'd gotten interferon, my insurance would have to pay for it, and they also have to pay for the administration of the drug, and, like POW said, all the tests that go along with the trial. They may all be different, but that's how mine works, basically nothing is free except the drug they are trying to prove works better than the standard of care.
Also, my insurance company originally said they wouldn't pay for participation in a clinical trial, but Mayo took care of that for me, so Moffit may be able to get your insurance company to pay for you to go there, it would be worth a shot at least. I think insurance companies just automatically say NO to everything!
Best of luck to you and your husband!
Melissa
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