Comments for My Ocular Melanoma: Rob's Story http://myocularmelanoma.com My story of dealing with life while living with this very rare eye cancer. Wed, 16 May 2012 01:08:12 +0000 hourly 1 http://wordpress.org/?v=3.3.2 Comment on Ron North releasing his own charity single by norfee http://myocularmelanoma.com/2012/01/29/ron-north-releasing-his-own-charity-single/comment-page-1/#comment-137 norfee Wed, 16 May 2012 01:08:12 +0000 http://myocularmelanoma.com/?p=281#comment-137 Hi Rob, I just noticed youd posted a link to my story, thanks very much. Im still waiting to see how the sales have went for the single but ive had some amazing feedback from it. When i was diagnosed it was life changing, as you probably know, thats when i decided to follow a path of something musical, so far its going well :). I play in a band also and we've been gigging localy quite a lot recently and getting a name for ourselves which is good. Im still trying to adjust to the prosthetic, which feels weird and the sunlight is causing havock with my eylids, but im sure ill adjust eventually. Hope your well and thanks again Ron Hi Rob,

I just noticed youd posted a link to my story, thanks very much. Im still waiting to see how the sales have went for the single but ive had some amazing feedback from it.

When i was diagnosed it was life changing, as you probably know, thats when i decided to follow a path of something musical, so far its going well :) . I play in a band also and we’ve been gigging localy quite a lot recently and getting a name for ourselves which is good.

Im still trying to adjust to the prosthetic, which feels weird and the sunlight is causing havock with my eylids, but im sure ill adjust eventually.

Hope your well and thanks again

Ron

]]> Comment on First Post by Robert Lee http://myocularmelanoma.com/first-post/comment-page-1/#comment-134 Robert Lee Sat, 28 Jan 2012 23:35:58 +0000 http://myocularmelanoma.com/?page_id=178#comment-134 Hello Darci, Yes, you have my permission to reproduce my story from this website within the method you have described. I hope many more people will not have to live through this because of an increased awareness. Feel free to email me directly at any time. Hello Darci,
Yes, you have my permission to reproduce my story from this website within the method you have described. I hope many more people will not have to live through this because of an increased awareness. Feel free to email me directly at any time.

]]> Comment on First Post by Darci@IES http://myocularmelanoma.com/first-post/comment-page-1/#comment-133 Darci@IES Fri, 27 Jan 2012 19:33:40 +0000 http://myocularmelanoma.com/?page_id=178#comment-133 Hello Rob, My name is Darci and I work for Inland Eye Specialists. We are an Ophthalmology and Optometry practice is Southern California. I have put together a team this year for the Relay For Life Cancer walk. In having a team at this event I will need to pick a cancer and have information on that cancer posted in our booth. Being an Ophthalmology practice I have chosen to do Ocular Melanoma. As I have read in your stories and in other research, this is a very unseen cancer and I would love to help people learn more about it. My reason for writing is in hopes to get your permission to use your story in my booth at the event. I am very happy to see how far and well you have come. Your eye looks great! We now have a doctor here at our practice that makes and fits for prosthetic eyes. Hope all is well and I am so excited that you will be celebrating more Birthdays! Hello Rob,

My name is Darci and I work for Inland Eye Specialists. We are an Ophthalmology and Optometry practice is Southern California. I have put together a team this year for the Relay For Life Cancer walk. In having a team at this event I will need to pick a cancer and have information on that cancer posted in our booth. Being an Ophthalmology practice I have chosen to do Ocular Melanoma. As I have read in your stories and in other research, this is a very unseen cancer and I would love to help people learn more about it. My reason for writing is in hopes to get your permission to use your story in my booth at the event. I am very happy to see how far and well you have come. Your eye looks great! We now have a doctor here at our practice that makes and fits for prosthetic eyes. Hope all is well and I am so excited that you will be celebrating more Birthdays!

]]> Comment on First Post by Robert Lee http://myocularmelanoma.com/first-post/comment-page-1/#comment-131 Robert Lee Mon, 09 Jan 2012 06:27:47 +0000 http://myocularmelanoma.com/?page_id=178#comment-131 Thank you very much for the info. I have just arrived in vancouver for two days of having my prosthetic made and fitted. I will add the concerns you shared to the growing list. You and your mother are in my prayers. Cheers! Thank you very much for the info. I have just arrived in vancouver for two days of having my prosthetic made and fitted.
I will add the concerns you shared to the growing list. You and your mother are in my prayers.
Cheers!

]]> Comment on First Post by Kpower http://myocularmelanoma.com/first-post/comment-page-1/#comment-130 Kpower Sun, 11 Dec 2011 07:09:15 +0000 http://myocularmelanoma.com/?page_id=178#comment-130 Hi Rob, I wish you the best of luck. My mom was diagnosed with OM three years ago and also had to have her eye removed due to the size of the tumor. Two years later the cancer returned throughout her body, there were no symptoms until she was at stage IV with multiple tumors. I'm assuming you both had the same doctor at the Vancouver Eye Cancer Centre. Her doctor was very confident there had been no leakage and that all the cancer had been removed. She did not want to put my mom through scans as follow up due to radiation and said she would see her every six months and judge how she seemed. Being melanoma does not present symptoms until it is too late I urge you to get follow up scans, insist on them. It is not worth the risk. We are now one year since the cancer returned and my mom has gone through one round of Ipilimumab which may or may not have run its course so we are looking at two hopeful other new treatments. One may include a new trial for ocular melanoma patients by Dr. Smiley out of Edmonton (best in Canada for melanoma patients). I also recommend checking out the Save Your Skin Foundation, they have been very helpful in information and resources. Best of luck to you :) Hi Rob,
I wish you the best of luck. My mom was diagnosed with OM three years ago and also had to have her eye removed due to the size of the tumor. Two years later the cancer returned throughout her body, there were no symptoms until she was at stage IV with multiple tumors. I’m assuming you both had the same doctor at the Vancouver Eye Cancer Centre. Her doctor was very confident there had been no leakage and that all the cancer had been removed. She did not want to put my mom through scans as follow up due to radiation and said she would see her every six months and judge how she seemed. Being melanoma does not present symptoms until it is too late I urge you to get follow up scans, insist on them. It is not worth the risk. We are now one year since the cancer returned and my mom has gone through one round of Ipilimumab which may or may not have run its course so we are looking at two hopeful other new treatments. One may include a new trial for ocular melanoma patients by Dr. Smiley out of Edmonton (best in Canada for melanoma patients). I also recommend checking out the Save Your Skin Foundation, they have been very helpful in information and resources. Best of luck to you :)

]]> Comment on I Am Home by Robert Lee http://myocularmelanoma.com/2011/08/13/i-am-home/comment-page-1/#comment-128 Robert Lee Mon, 19 Sep 2011 23:39:25 +0000 http://myocularmelanoma.com/?p=161#comment-128 My oncologist also told me my headaches were unrelated from mu ocular melanoma but since the enucleation the headaches have gone. For my pain I was taking Tramacet, it worked for a long while, then I was moved to a combination of Gabapentin and Nortriptyline which did help. But I am headache free since the operation. There still remains a lot of mystery about the eye. I wish you well. Keep in touch. My oncologist also told me my headaches were unrelated from mu ocular melanoma but since the enucleation the headaches have gone. For my pain I was taking Tramacet, it worked for a long while, then I was moved to a combination of Gabapentin and Nortriptyline which did help.
But I am headache free since the operation. There still remains a lot of mystery about the eye.
I wish you well. Keep in touch.

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