› Forums › General Melanoma Community › Dazed and confused!
- This topic has 12 replies, 4 voices, and was last updated 9 years, 10 months ago by
degood.
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- June 20, 2014 at 9:17 pm
Just got home from eye specialist. His opinion is totally diffrerent from the melanoma specialist!! We had finally got some answers and ready to start a clinical trial with ipi and a vaccine. Thought things were finally starting to move. We go to the eye specialist and he checks my husbands eye and now decides it is melanoma after a 3 month wait. We tell him the situfation with the melanoma spreading and that he is to start treatment shortly and his answser is he is abouth to throw a wrench in all of that! Really no further explanation other than info on the placque treatment or removal of the eye. the eye doc says it has spread from the eye and not from the original melanoma from his back. The melanoma specialist told us that she feels the eye should wait and we need to start treatment for the rest asap. At this point we don't know what to do who to believe and are totally at a loss. I guess we have to let the doctors fight it out and go from there. All I know is they are wasting time and my husband is getting worse!! Any ideas? Thanks!!
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- June 20, 2014 at 9:54 pm
Just some friendly advice from a stage 4 melanoma patient, " Let the Melanoma specialist be the leader at this point." I have had referrals to an ear, throat and neck surgeon, a neural surgeon, a radiologist and finally a dermatologist. All results go back to my Melanoma doctor and together we discuss the best plan. I am on a Bristol Myer Squibb trial of Ipi or Nivolumab or both drugs together at present. The immunotherapy approach if available of ipi seems like a good direction. Both Merck and Bristol Myer Squibb have PD-1 drugs on trials at present and the early results are super good. Best of luck !!!! Ed Williams
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- June 20, 2014 at 9:54 pm
Just some friendly advice from a stage 4 melanoma patient, " Let the Melanoma specialist be the leader at this point." I have had referrals to an ear, throat and neck surgeon, a neural surgeon, a radiologist and finally a dermatologist. All results go back to my Melanoma doctor and together we discuss the best plan. I am on a Bristol Myer Squibb trial of Ipi or Nivolumab or both drugs together at present. The immunotherapy approach if available of ipi seems like a good direction. Both Merck and Bristol Myer Squibb have PD-1 drugs on trials at present and the early results are super good. Best of luck !!!! Ed Williams
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- June 20, 2014 at 9:54 pm
Just some friendly advice from a stage 4 melanoma patient, " Let the Melanoma specialist be the leader at this point." I have had referrals to an ear, throat and neck surgeon, a neural surgeon, a radiologist and finally a dermatologist. All results go back to my Melanoma doctor and together we discuss the best plan. I am on a Bristol Myer Squibb trial of Ipi or Nivolumab or both drugs together at present. The immunotherapy approach if available of ipi seems like a good direction. Both Merck and Bristol Myer Squibb have PD-1 drugs on trials at present and the early results are super good. Best of luck !!!! Ed Williams
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- June 21, 2014 at 11:52 pm
I don't know who's in charge of your treatment, but as I posted previously you have to figure out what type of melanoma you have, because uveal and cutaneous melanoma have somewhat different characteristics and different treatments. This can probably only be determined through genetic testing.
Since there are multiple sites of metastasis, I don't see the point in treating the eye while leaving the other tumors alone for the time being. A systemic treatment such as Yervoy, or a PD-1 inhibitor, or a combination of the two, is probably a good choice regardless of which type of melanoma you have. Note that PD-1 inhibitors are only available in trials right now.
Since there are skin lesions, you can also look at Imiquimod, which is a topical treatment that can greatly enhance the immune response to tumor cells. I know of one person who had this done and there was a positive response, but of course the doctors were never able to determine whether the Imiquimod made a real difference or not.
Also COX-2 inhibitors can slow the progression of melanoma. Anti-inflammatory eyedrops such as Nepafenac have been shown to slow melanoma growth in the eye. IMO that would be a good thing to take if you don't treat the eye tumor right away. Also systemic anti-inflammatories such as Celebrex also have a lot of evidence supporting their use.
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- June 23, 2014 at 11:21 pm
My mum had Stage IV advanced mestatisis to her liver, lung, spleen, brain and hips. She also had melanoma tumours sitting in front of her optic nerve on both eyes. The Eye Oncologist who specialised in Melanoma as well told us that they work on saving LIFE, EYE, SIGHT in that order.
From the recommendations she got you need to be treating what is threatening your life first. Life without sight is not great but it is still life.
Mum went blind in one eye and had limited vision in the other by the end. Is that quality – I'm not sure.
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- June 23, 2014 at 11:21 pm
My mum had Stage IV advanced mestatisis to her liver, lung, spleen, brain and hips. She also had melanoma tumours sitting in front of her optic nerve on both eyes. The Eye Oncologist who specialised in Melanoma as well told us that they work on saving LIFE, EYE, SIGHT in that order.
From the recommendations she got you need to be treating what is threatening your life first. Life without sight is not great but it is still life.
Mum went blind in one eye and had limited vision in the other by the end. Is that quality – I'm not sure.
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- June 23, 2014 at 11:21 pm
My mum had Stage IV advanced mestatisis to her liver, lung, spleen, brain and hips. She also had melanoma tumours sitting in front of her optic nerve on both eyes. The Eye Oncologist who specialised in Melanoma as well told us that they work on saving LIFE, EYE, SIGHT in that order.
From the recommendations she got you need to be treating what is threatening your life first. Life without sight is not great but it is still life.
Mum went blind in one eye and had limited vision in the other by the end. Is that quality – I'm not sure.
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- June 21, 2014 at 11:52 pm
I don't know who's in charge of your treatment, but as I posted previously you have to figure out what type of melanoma you have, because uveal and cutaneous melanoma have somewhat different characteristics and different treatments. This can probably only be determined through genetic testing.
Since there are multiple sites of metastasis, I don't see the point in treating the eye while leaving the other tumors alone for the time being. A systemic treatment such as Yervoy, or a PD-1 inhibitor, or a combination of the two, is probably a good choice regardless of which type of melanoma you have. Note that PD-1 inhibitors are only available in trials right now.
Since there are skin lesions, you can also look at Imiquimod, which is a topical treatment that can greatly enhance the immune response to tumor cells. I know of one person who had this done and there was a positive response, but of course the doctors were never able to determine whether the Imiquimod made a real difference or not.
Also COX-2 inhibitors can slow the progression of melanoma. Anti-inflammatory eyedrops such as Nepafenac have been shown to slow melanoma growth in the eye. IMO that would be a good thing to take if you don't treat the eye tumor right away. Also systemic anti-inflammatories such as Celebrex also have a lot of evidence supporting their use.
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- June 21, 2014 at 11:52 pm
I don't know who's in charge of your treatment, but as I posted previously you have to figure out what type of melanoma you have, because uveal and cutaneous melanoma have somewhat different characteristics and different treatments. This can probably only be determined through genetic testing.
Since there are multiple sites of metastasis, I don't see the point in treating the eye while leaving the other tumors alone for the time being. A systemic treatment such as Yervoy, or a PD-1 inhibitor, or a combination of the two, is probably a good choice regardless of which type of melanoma you have. Note that PD-1 inhibitors are only available in trials right now.
Since there are skin lesions, you can also look at Imiquimod, which is a topical treatment that can greatly enhance the immune response to tumor cells. I know of one person who had this done and there was a positive response, but of course the doctors were never able to determine whether the Imiquimod made a real difference or not.
Also COX-2 inhibitors can slow the progression of melanoma. Anti-inflammatory eyedrops such as Nepafenac have been shown to slow melanoma growth in the eye. IMO that would be a good thing to take if you don't treat the eye tumor right away. Also systemic anti-inflammatories such as Celebrex also have a lot of evidence supporting their use.
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- June 25, 2014 at 8:45 pm
Still in limbo. The docs have decided to treat the skin melanoma first and watch the eye. The eye dr. still insists it is 2 different kinds of melanoma and has therefore thrown the wrench into any clinical trials! He MAY start Yervoy Monday BUT they are still trying to figure out if medicare will pay and how much we may have to pay, as the VA is his primary and since we are just doing yervoy now the VA can do that. We don't have a sujpplement to medicare because he was covered by the VA and we did not take one out. We would like for the specialist at IU to be his primary care dr. but she says the treatment is quite expensive and doesn't want to bankrupt us. She is having her social worker check on all of this. What a mess, we just want him to get treatment and we will figure out payment.
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- June 25, 2014 at 8:45 pm
Still in limbo. The docs have decided to treat the skin melanoma first and watch the eye. The eye dr. still insists it is 2 different kinds of melanoma and has therefore thrown the wrench into any clinical trials! He MAY start Yervoy Monday BUT they are still trying to figure out if medicare will pay and how much we may have to pay, as the VA is his primary and since we are just doing yervoy now the VA can do that. We don't have a sujpplement to medicare because he was covered by the VA and we did not take one out. We would like for the specialist at IU to be his primary care dr. but she says the treatment is quite expensive and doesn't want to bankrupt us. She is having her social worker check on all of this. What a mess, we just want him to get treatment and we will figure out payment.
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- June 25, 2014 at 8:45 pm
Still in limbo. The docs have decided to treat the skin melanoma first and watch the eye. The eye dr. still insists it is 2 different kinds of melanoma and has therefore thrown the wrench into any clinical trials! He MAY start Yervoy Monday BUT they are still trying to figure out if medicare will pay and how much we may have to pay, as the VA is his primary and since we are just doing yervoy now the VA can do that. We don't have a sujpplement to medicare because he was covered by the VA and we did not take one out. We would like for the specialist at IU to be his primary care dr. but she says the treatment is quite expensive and doesn't want to bankrupt us. She is having her social worker check on all of this. What a mess, we just want him to get treatment and we will figure out payment.
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