› Forums › Ocular Melanoma Community › New member (sad to say)
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POW.
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- January 20, 2013 at 7:21 pm
Hello
In 2006 I was diagnosed with ocular malanoma in my left eye. Soon there after I had plaque surgery at Jules Stein Eye Institute. I did lose most vision in that eye but was glad to be alive. One year ago in Dec, my yearly CT scan showed 5 small (1.2cm) spots on my abdomine. Six months later in June they showed no growth. This past Dec the CT scan intecated that at least one of the spots had grown (1.7cm) A biopsy was ordered and showed that it was melanoma.
Hello
In 2006 I was diagnosed with ocular malanoma in my left eye. Soon there after I had plaque surgery at Jules Stein Eye Institute. I did lose most vision in that eye but was glad to be alive. One year ago in Dec, my yearly CT scan showed 5 small (1.2cm) spots on my abdomine. Six months later in June they showed no growth. This past Dec the CT scan intecated that at least one of the spots had grown (1.7cm) A biopsy was ordered and showed that it was melanoma.
I have recetly gone to USC Norris Cancer Center and my Doctor there (Dr Wong) has recomended that I start Yervoy infussion as treatment against the melanoma. I have read so many horrific side effects that I am now seeking others that may have gone through this tratment.
My question is simple…what are your feelings about this treatmeant, and what others might you recomend?
Not sure if my condition makes any difference, but here it is anyway.
I am a 59 year old male in good to great health (other than the melanoma) I am 5'9' and weigh 160. I am on a mostly glutten free diet, very little meat
I exercise 4 to 5 times a week….weight lifting and cycling. Never smoked. I havent even been sick in the last 15 years (the flu was the last illness)
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- January 20, 2013 at 7:51 pm
I am so sorry. OM is really a different creature as I am sure you know. Have you read the "cure OM" page on this site? Yervoy seems to effect people differently. If you search these pages you will find the good, bad and ugly of it. Some people seem to do OK on it. My concerns would be that it is an undocumented treatment for OM so there is little known of how well it works. Have you done any research into trials? Since you are in LA you might find trials close by that are open.
Good Luck,
Mary
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- January 20, 2013 at 7:51 pm
I am so sorry. OM is really a different creature as I am sure you know. Have you read the "cure OM" page on this site? Yervoy seems to effect people differently. If you search these pages you will find the good, bad and ugly of it. Some people seem to do OK on it. My concerns would be that it is an undocumented treatment for OM so there is little known of how well it works. Have you done any research into trials? Since you are in LA you might find trials close by that are open.
Good Luck,
Mary
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- January 20, 2013 at 7:51 pm
I am so sorry. OM is really a different creature as I am sure you know. Have you read the "cure OM" page on this site? Yervoy seems to effect people differently. If you search these pages you will find the good, bad and ugly of it. Some people seem to do OK on it. My concerns would be that it is an undocumented treatment for OM so there is little known of how well it works. Have you done any research into trials? Since you are in LA you might find trials close by that are open.
Good Luck,
Mary
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- January 20, 2013 at 8:16 pm
Thanks Mary
The OM has been effectively delbt with by the ortiginal plaque surgery. It is the new incidence in my abdomine that I am concerned about and what the Yervoy infussions are for.
Now maybe I am not as up to date as most here…I will post this on the OM page as well but isnt the melanoma in the abdomine a seperate issue? Sorry if I seem a little lost.
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- January 20, 2013 at 8:50 pm
That would be for the Doc to determine if it has matasisized or if this is a new occurrence. My understanding of OM is limited, all I know is that it tend to matatisized to the Liver but I don't know if that would be exclusive.
Sounds like you need to make a follow up appointment to ask questions now that the shock factor has worn off. Many of us do that. And don't feel bad if you have to tell the Doc to slow down or that you are not done, etc. With Oncologist I have found you have to do this.
Mary
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- January 20, 2013 at 9:01 pm
They say it has matasisized to the abdomine. They did say that they expected it to go to the liver and that its going to just the fatty tissue in my abdomine was very unsual. I am not jumping in and that is for sure. I have calls in to both my doctors that I have more questions.
Thanks again Mary.
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- January 20, 2013 at 9:01 pm
They say it has matasisized to the abdomine. They did say that they expected it to go to the liver and that its going to just the fatty tissue in my abdomine was very unsual. I am not jumping in and that is for sure. I have calls in to both my doctors that I have more questions.
Thanks again Mary.
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- January 20, 2013 at 9:01 pm
They say it has matasisized to the abdomine. They did say that they expected it to go to the liver and that its going to just the fatty tissue in my abdomine was very unsual. I am not jumping in and that is for sure. I have calls in to both my doctors that I have more questions.
Thanks again Mary.
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- January 20, 2013 at 8:50 pm
That would be for the Doc to determine if it has matasisized or if this is a new occurrence. My understanding of OM is limited, all I know is that it tend to matatisized to the Liver but I don't know if that would be exclusive.
Sounds like you need to make a follow up appointment to ask questions now that the shock factor has worn off. Many of us do that. And don't feel bad if you have to tell the Doc to slow down or that you are not done, etc. With Oncologist I have found you have to do this.
Mary
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- January 20, 2013 at 8:50 pm
That would be for the Doc to determine if it has matasisized or if this is a new occurrence. My understanding of OM is limited, all I know is that it tend to matatisized to the Liver but I don't know if that would be exclusive.
Sounds like you need to make a follow up appointment to ask questions now that the shock factor has worn off. Many of us do that. And don't feel bad if you have to tell the Doc to slow down or that you are not done, etc. With Oncologist I have found you have to do this.
Mary
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- January 20, 2013 at 8:16 pm
Thanks Mary
The OM has been effectively delbt with by the ortiginal plaque surgery. It is the new incidence in my abdomine that I am concerned about and what the Yervoy infussions are for.
Now maybe I am not as up to date as most here…I will post this on the OM page as well but isnt the melanoma in the abdomine a seperate issue? Sorry if I seem a little lost.
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- January 20, 2013 at 8:16 pm
Thanks Mary
The OM has been effectively delbt with by the ortiginal plaque surgery. It is the new incidence in my abdomine that I am concerned about and what the Yervoy infussions are for.
Now maybe I am not as up to date as most here…I will post this on the OM page as well but isnt the melanoma in the abdomine a seperate issue? Sorry if I seem a little lost.
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- January 20, 2013 at 9:04 pm
Hey Jinx,
Without speaking the particulars of OM, I will say that I was on Yervoy for a little over a year (16 infusions), iit worked very well for a long time, and I had no side effects other than slightly graying hair and wildly itchy legs. As you know, the drug affects different peope differently, but for me it was a piece of cake. Also, at the time I started taking it (three years ago), I was really sick with tumors everywhere and all sorts of symptoms. I began feeling amazingly better within a few days of my first infusion.
Best of luck!
Josh
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- January 20, 2013 at 9:04 pm
Hey Jinx,
Without speaking the particulars of OM, I will say that I was on Yervoy for a little over a year (16 infusions), iit worked very well for a long time, and I had no side effects other than slightly graying hair and wildly itchy legs. As you know, the drug affects different peope differently, but for me it was a piece of cake. Also, at the time I started taking it (three years ago), I was really sick with tumors everywhere and all sorts of symptoms. I began feeling amazingly better within a few days of my first infusion.
Best of luck!
Josh
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- January 20, 2013 at 9:04 pm
Hey Jinx,
Without speaking the particulars of OM, I will say that I was on Yervoy for a little over a year (16 infusions), iit worked very well for a long time, and I had no side effects other than slightly graying hair and wildly itchy legs. As you know, the drug affects different peope differently, but for me it was a piece of cake. Also, at the time I started taking it (three years ago), I was really sick with tumors everywhere and all sorts of symptoms. I began feeling amazingly better within a few days of my first infusion.
Best of luck!
Josh
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- January 20, 2013 at 10:01 pm
Hello,
My husband started Yervoy in March of 2011 before Yervoy was approved by the FDA. He is on the 10mg/kg and also daily injections for 2 weeks on and 1 week off of GM-CSF. He took the initial 12 weeks of infusions every 3 weeks and since has been on the maintenance phase which is an infusion every 12 weeks. The whole time he has been doing the injections. He has had a really itchy back, is on low dose prednisone because his body quit producing its own, so he takes 7.5 mg a day. His eyebrows have turned white and his pigmentation in his face is gone down to about the collar bone. You can read more on his profile if you would like. He was 59 when he started on the yervoy and other than the melanoma was always healthy. His lesions were in his lungs, liver an unresectable lesion pressing on the C1-C2 cervical spine and some sub q's in this region also.
He believes he has helped himself by keeping a watch on his Vitamin D3 and recommends everyone be tested with the hydroxy-25 test. He tries to keep his above 60 and also his melanoma didn't start because of sun as he worked mostly midnights and afternoons for much of his 40 years inside of a plant and then sleeping when the sun was out.
One thing to be aware of a few months ago when he went for his 12 week scans they found blood clots in both lungs and spent 11 days in the hospital. He was told by the oncologist that the cancer puts you at a higher risk of getting blood clots. He didn't even have any side effects that would make us question if he had them. It was quite a shock to us.
He is now NED and has been for a few months now.
Judy (loving wife of Gene Stage IV and now NED)
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- January 20, 2013 at 10:01 pm
Hello,
My husband started Yervoy in March of 2011 before Yervoy was approved by the FDA. He is on the 10mg/kg and also daily injections for 2 weeks on and 1 week off of GM-CSF. He took the initial 12 weeks of infusions every 3 weeks and since has been on the maintenance phase which is an infusion every 12 weeks. The whole time he has been doing the injections. He has had a really itchy back, is on low dose prednisone because his body quit producing its own, so he takes 7.5 mg a day. His eyebrows have turned white and his pigmentation in his face is gone down to about the collar bone. You can read more on his profile if you would like. He was 59 when he started on the yervoy and other than the melanoma was always healthy. His lesions were in his lungs, liver an unresectable lesion pressing on the C1-C2 cervical spine and some sub q's in this region also.
He believes he has helped himself by keeping a watch on his Vitamin D3 and recommends everyone be tested with the hydroxy-25 test. He tries to keep his above 60 and also his melanoma didn't start because of sun as he worked mostly midnights and afternoons for much of his 40 years inside of a plant and then sleeping when the sun was out.
One thing to be aware of a few months ago when he went for his 12 week scans they found blood clots in both lungs and spent 11 days in the hospital. He was told by the oncologist that the cancer puts you at a higher risk of getting blood clots. He didn't even have any side effects that would make us question if he had them. It was quite a shock to us.
He is now NED and has been for a few months now.
Judy (loving wife of Gene Stage IV and now NED)
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- January 20, 2013 at 10:01 pm
Hello,
My husband started Yervoy in March of 2011 before Yervoy was approved by the FDA. He is on the 10mg/kg and also daily injections for 2 weeks on and 1 week off of GM-CSF. He took the initial 12 weeks of infusions every 3 weeks and since has been on the maintenance phase which is an infusion every 12 weeks. The whole time he has been doing the injections. He has had a really itchy back, is on low dose prednisone because his body quit producing its own, so he takes 7.5 mg a day. His eyebrows have turned white and his pigmentation in his face is gone down to about the collar bone. You can read more on his profile if you would like. He was 59 when he started on the yervoy and other than the melanoma was always healthy. His lesions were in his lungs, liver an unresectable lesion pressing on the C1-C2 cervical spine and some sub q's in this region also.
He believes he has helped himself by keeping a watch on his Vitamin D3 and recommends everyone be tested with the hydroxy-25 test. He tries to keep his above 60 and also his melanoma didn't start because of sun as he worked mostly midnights and afternoons for much of his 40 years inside of a plant and then sleeping when the sun was out.
One thing to be aware of a few months ago when he went for his 12 week scans they found blood clots in both lungs and spent 11 days in the hospital. He was told by the oncologist that the cancer puts you at a higher risk of getting blood clots. He didn't even have any side effects that would make us question if he had them. It was quite a shock to us.
He is now NED and has been for a few months now.
Judy (loving wife of Gene Stage IV and now NED)
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- January 20, 2013 at 11:19 pm
I'm sorry to say that I don't know much about ocular melanoma. However, if I were you, I think I would approach it the same way I would approach cutaneous melanoma. First, I would try to get a consult with an ocular melanoma specialist, especially one who is involved with OM clinical trials. I'm sure the "Cure OM" forum people can give you recommendations in your area. Next I would get my biopsy tissue tested for all known melanoma-related mutations: BRAF, c-KIT, nRas, and anything else I could think of. Then, I would look into clinical trials, especially those that aim to enhance the immune system (like anti-PD-1 and anti-PD-L1). Yervory is the first FDA approved immuno-stimulatory melanoma treatment. Immuno-modulators take longer to have an effect than do chemo treatments, but they tend to last longer. Yervoy is better than what we used to have (IL-2 or cisplaitin) but anti-PD-1 seems to work better on cutaneous melanomas with fewer side effects. I don't know what effect it has on ocular melanoma. I suspect it would work on ocular.
In other words, with your diagnosis, I would: 1) consult with an ocular melanoma specialist, 2) have my tissue genotyped; 3) investigate OM clinical trials and opt for one aimed at stimulating the immune response, and 4) take Yervoy if the OM specialist thinks that is your best option for now.
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- January 20, 2013 at 11:19 pm
I'm sorry to say that I don't know much about ocular melanoma. However, if I were you, I think I would approach it the same way I would approach cutaneous melanoma. First, I would try to get a consult with an ocular melanoma specialist, especially one who is involved with OM clinical trials. I'm sure the "Cure OM" forum people can give you recommendations in your area. Next I would get my biopsy tissue tested for all known melanoma-related mutations: BRAF, c-KIT, nRas, and anything else I could think of. Then, I would look into clinical trials, especially those that aim to enhance the immune system (like anti-PD-1 and anti-PD-L1). Yervory is the first FDA approved immuno-stimulatory melanoma treatment. Immuno-modulators take longer to have an effect than do chemo treatments, but they tend to last longer. Yervoy is better than what we used to have (IL-2 or cisplaitin) but anti-PD-1 seems to work better on cutaneous melanomas with fewer side effects. I don't know what effect it has on ocular melanoma. I suspect it would work on ocular.
In other words, with your diagnosis, I would: 1) consult with an ocular melanoma specialist, 2) have my tissue genotyped; 3) investigate OM clinical trials and opt for one aimed at stimulating the immune response, and 4) take Yervoy if the OM specialist thinks that is your best option for now.
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- January 20, 2013 at 11:19 pm
I'm sorry to say that I don't know much about ocular melanoma. However, if I were you, I think I would approach it the same way I would approach cutaneous melanoma. First, I would try to get a consult with an ocular melanoma specialist, especially one who is involved with OM clinical trials. I'm sure the "Cure OM" forum people can give you recommendations in your area. Next I would get my biopsy tissue tested for all known melanoma-related mutations: BRAF, c-KIT, nRas, and anything else I could think of. Then, I would look into clinical trials, especially those that aim to enhance the immune system (like anti-PD-1 and anti-PD-L1). Yervory is the first FDA approved immuno-stimulatory melanoma treatment. Immuno-modulators take longer to have an effect than do chemo treatments, but they tend to last longer. Yervoy is better than what we used to have (IL-2 or cisplaitin) but anti-PD-1 seems to work better on cutaneous melanomas with fewer side effects. I don't know what effect it has on ocular melanoma. I suspect it would work on ocular.
In other words, with your diagnosis, I would: 1) consult with an ocular melanoma specialist, 2) have my tissue genotyped; 3) investigate OM clinical trials and opt for one aimed at stimulating the immune response, and 4) take Yervoy if the OM specialist thinks that is your best option for now.
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Tagged: ocular melanoma
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