Thank you for sharing. I too belong to that club. I was diagnosed January, 2017. I live in Louisiana and I had to go to Memphis, Tennessee for my treatment. January will be 5 years since diagnosis and March will be 5 years since treatment. All of my follow up tests have been negative for metastasis.
Hey there Cathy im glad you haven't tested positive for metastasis!! If you don't mine me asking, how large was your tumor when they first discovered it?
Thank you for sharing your ocular melanoma story. I needed to hear your experience as my husband was diagnosed with the same cancer, with Surgery at the Casey Eye Foundation OHSU Oregon this month.
So sorry to hear that your husband was recently diagnosed with OM, but I'm glad that I could share my story and hopefully put you at ease a little bit. Good luck to him with the surgery! I'll be praying for a positive outcome for you guys
Hey Justin thinks you one in a million, he loves you more than life itself. Wish you both a long and happy future together ,many more adventures to come.
Thank you, thank you ❤️. I'm currently beeing diagnosed. I'm 35 with 2 year old Child. I was shocked when I first hear this from the doctor. Thank you for hope. I have my first consultation treatment on Tuesday.
Thanks for sharing. I'm going under the knife and breakyplaque therapy on 5/13 here in DC Area. Very scared and could find noting from patients till your posts. Yes, peer review from doctors is informative, but a testimonial from a survivor is far better and reassuring. Thank you!
Sooo glad you are Blessed to be close to Duke!! It’s a little over an hour drive for us!! I take my dad every three months for his prostate cancer hormone shot!! So worth the drive! We love it there!! Also I am in love with the fearrington villagers Pittsboro!! You and Justin have to go visit there if you have never been!!!!! We go there every time we go to Duke!! Keep us posted with how you are doing!! 🙏🏻❤️
Thankyou for sharing this story. I am 24 (so young like yourself) and have also just been diagnosed but with early stages. they are coming up with a treatment plan soon. these videos are super helpful. I wish you all the best with all that comes in the future!
I am so glad that this has been helpful for you, but also so sorry to hear that you have been diagnosed. My heart goes out to you as I know that this is such a scary time. Hang in there and you will get through it one step at a time ❤️. Good luck with your treatment and just know that although this is a long road there is light at the end of the tunnel!
Hi, Thanks for sharing your story! Glad you got in when you id. I was also having eye problems with my left eye and did the same by going to a retinal specialist then ocular oncologist. Had the brachytherapy and biopsy. What size was your tumor? Did you get the biopsy for gene expression? Wish you all the best. Feel free to contact me if you need support.
Hey, thanks for reaching out! Mine was 16x5x3 millimeters. I did get a biopsy and it came back as class 2 so I'll be getting scans every 3 months for 5 years.
You're very welcome. I wish you all the best with your treatment. Not sure what it is with those left eyes 😉. Please don't hesitate to reach out if you have any questions!
I am doing well thanks for asking! Just going in for check ups and CT scans every 3 months. Unfortunately, I don't have time to make videos anymore. Covid stopped our travels and I am now back in school and working full time. Such is life!
Hi i am kinda scared cause i might have this cancer and im only 13 so i wanted to know cause i didn’t hear u say it but can u see out of the eye you had surgery on. And im so glad u are doin so much better.
He would have gone to the doctor eventually, when the retina detaches more and your sight is gone. My best friend just went through that. She had been seeing random flashes, then her sight got blurry, then it faded almost completely. They just removed her eye 2 days ago. So glad you didn't wait.
@@AdventureInTandem Thank you. Her recovery has been physically good, but painfull, so far. She has been my best friend since we were 6 years old. We are 43 now.
Hi! I meant MRI every 3 months.. LOL. I think I am going to stretch it to every 4 mos. All that radiation isn't good for you either. I know I wish those that have gone through this and succeeded after 5 yrs would come out with their stories. I have some cook books for plant based eating, doesn't look all that good. Do you have any recommendations? Yes, this muscle cutting is taking me longer to recover with my vision. Double vison messes with your head some. Are you still having to see the ocular oncologist after a year? If so, how often. I am thankful that you helped me in this journey, as you are experiencing it. You have been very uplifting for me. Thank you!
I know, the radiation concerns me too. I have an appointment again in a couple weeks and I'm going to ask my oncologist if we could do only do MRIs every 3 months and stretch the CT scans to every 6 months since there's no radiation from an MRI and the liver is the main organ they're watching out for anyway, which is what the MRI is of. I am still seeing the ocular oncologist. I see him every 3-4 months at the same time as I get my scans. As for plant based eating, I haven't gone full vegan yet, with the holidays I just felt like it was a bad time to do it, but I've been a vegan before 6 o'clock. I eat oatmeal for breakfast, salad for lunch, and then have been eating either a little bit of meat or dairy with dinner but not both. I think in general Asian food is a lot tastier to eat as a vegan than western food just because their sauces are so flavorful. After living in China for 4 years I cook a lot of Chinese food and in stir fries you can easily substitute tofu or mushrooms for the meat. Curries are also a delicious vegan option, both Thai and Indian. I'm so glad that sharing my story has helped you on your own journey. It's the whole reason I decided to share it!
Hi, Glad you are doing well with everything. You are right there is nothing on the internet about the other 50% that are cancer free after 5 yrs! I am on the same page as you with all of this. Mentally it can be challenging at times, but overall I know that I will make it through all of this! I am also doing the juices, plant base, exercise & stress management. They did have to clip my muscle and reattach, which has given me some double vision, but it's slowly getting better. I had some leakage into my retinal that still has some distortion, but they say it may go away over time as the lesion shrinks. Are you having to get a CT or MR every 3 weeks, and lung x-ray every 6 mos? I am reading a good book called "Chris Beat Cancer". It's a good read from a man that beat stage 3c colorectal cancer and is cancer free 17 yrs later! He has a great deal of statistics, information, his journey and positive words. Much hope to have and hoping to help others. Wishing you the very best as well!
I read that same book! Lots of good info in there. I get a chest CT and MRI abdomen every 3-4 months. Luckily they didn't have to cut my muscle so I've had no issues with vision from the surgery. It's very strange to me that nobody talks about what happens after 5 years. It was nice to know that the longer you go without metastasis the less your chance of metastasis is. I was scared that my risk would just keep going up over the years but thankfully that is not the case. I'm just about 1 year down now so 4 more to go!
Hi ZFM, I know it’s been a year but I’ve recently (5 days ago) had the radiation plaque surgery. They cut one muscle as well then reattached and I’m a little cross eyed in the affected eye. I know it’s early in my recovery but i don’t know if you’ve experienced the same? If you have, does it get better? Or is the cross eye thing permanent? How are you doing right now?
I've lost about 50% of my vision in my left eye, which, according to my doctor, is quite amazing. He said most people lose a lot more of their vision and have many more side effects than I do so I consider myself lucky. Also, the remaining vision I do have is still 20/20 which is awesome!
Thank you for sharing this. I was recently diagnosed with OM and it is definitely a scary thing. Watching this helped a bit. We are still in shell shock here and waiting for the referral for more in-depth testing for metastasis etc.
I was just diagnosed with this and I’m terrified. Thank you for sharing your story
How are you now?
Thank you for sharing. I too belong to that club. I was diagnosed January, 2017. I live in Louisiana and I had to go to Memphis, Tennessee for my treatment. January will be 5 years since diagnosis and March will be 5 years since treatment. All of my follow up tests have been negative for metastasis.
Hey there Cathy im glad you haven't tested positive for metastasis!! If you don't mine me asking, how large was your tumor when they first discovered it?
I was treated in 2015 and am fine; you have the right attitude
How large was your tumor when they found it?
Thank you for sharing your ocular melanoma story. I needed to hear your experience as my husband was diagnosed with the same cancer, with Surgery at the Casey Eye Foundation OHSU Oregon this month.
So sorry to hear that your husband was recently diagnosed with OM, but I'm glad that I could share my story and hopefully put you at ease a little bit. Good luck to him with the surgery! I'll be praying for a positive outcome for you guys
@cindypate8835 I was recently diagnosed with this also, and at the same center in Portland.
Hey Justin thinks you one in a million, he loves you more than life itself.
Wish you both a long and happy future together ,many more adventures to come.
Thank you! We really appreciate the well wishes ❤️. And I know he does, but now I have proof! 😂.
Thank you, thank you ❤️. I'm currently beeing diagnosed. I'm 35 with 2 year old Child. I was shocked when I first hear this from the doctor. Thank you for hope. I have my first consultation treatment on Tuesday.
Good luck with everything ❤️
Thanks for sharing. I'm going under the knife and breakyplaque therapy on 5/13 here in DC Area. Very scared and could find noting from patients till your posts. Yes, peer review from doctors is informative, but a testimonial from a survivor is far better and reassuring. Thank you!
You are so welcome. Good luck with your surgery!
Happy to see that everything went well. We wish you a great recovery.
Sooo glad you are Blessed to be close to Duke!! It’s a little over an hour drive for us!! I take my dad every three months for his prostate cancer hormone shot!! So worth the drive! We love it there!! Also I am in love with the fearrington villagers Pittsboro!! You and Justin have to go visit there if you have never been!!!!! We go there every time we go to Duke!! Keep us posted with how you are doing!! 🙏🏻❤️
A very positive mindset story, thanks for sharing!
I hope you get better fast
Bless u
Thankyou for sharing this story.
I am 24 (so young like yourself) and have also just been diagnosed but with early stages.
they are coming up with a treatment plan soon.
these videos are super helpful.
I wish you all the best with all that comes in the future!
I am so glad that this has been helpful for you, but also so sorry to hear that you have been diagnosed. My heart goes out to you as I know that this is such a scary time. Hang in there and you will get through it one step at a time ❤️. Good luck with your treatment and just know that although this is a long road there is light at the end of the tunnel!
What size was your tumor when they found it?
Hi, Thanks for sharing your story! Glad you got in when you id. I was also having eye problems with my left eye and did the same by going to a retinal specialist then ocular oncologist. Had the brachytherapy and biopsy. What size was your tumor? Did you get the biopsy for gene expression? Wish you all the best. Feel free to contact me if you need support.
Hey, thanks for reaching out! Mine was 16x5x3 millimeters. I did get a biopsy and it came back as class 2 so I'll be getting scans every 3 months for 5 years.
Thank you for sharing with your experience. I've been diagnosed with ocular melanoma in my left eye.
You're very welcome. I wish you all the best with your treatment. Not sure what it is with those left eyes 😉. Please don't hesitate to reach out if you have any questions!
Hi how are you feeling and doing now? Please do more videos blogging on your trips and life. You have an awesome personality. God bless you!
I am doing well thanks for asking! Just going in for check ups and CT scans every 3 months. Unfortunately, I don't have time to make videos anymore. Covid stopped our travels and I am now back in school and working full time. Such is life!
Hi i am kinda scared cause i might have this cancer and im only 13 so i wanted to know cause i didn’t hear u say it but can u see out of the eye you had surgery on. And im so glad u are doin so much better.
Yes, I can still see out of that eye. I have about 50% of the field of vision I used to have.
@@AdventureInTandem thank you
How are you mate
He would have gone to the doctor eventually, when the retina detaches more and your sight is gone. My best friend just went through that. She had been seeing random flashes, then her sight got blurry, then it faded almost completely. They just removed her eye 2 days ago. So glad you didn't wait.
Oh wow! That's really scary 🥺. I have your friend in my thoughts. I hope she recovers well ❤️.
@@AdventureInTandem Thank you. Her recovery has been physically good, but painfull, so far. She has been my best friend since we were 6 years old. We are 43 now.
I was diagnosed April 1st
Hi! I meant MRI every 3 months.. LOL. I think I am going to stretch it to every 4 mos. All that radiation isn't good for you either. I know I wish those that have gone through this and succeeded after 5 yrs would come out with their stories. I have some cook books for plant based eating, doesn't look all that good. Do you have any recommendations? Yes, this muscle cutting is taking me longer to recover with my vision. Double vison messes with your head some. Are you still having to see the ocular oncologist after a year? If so, how often. I am thankful that you helped me in this journey, as you are experiencing it. You have been very uplifting for me. Thank you!
I know, the radiation concerns me too. I have an appointment again in a couple weeks and I'm going to ask my oncologist if we could do only do MRIs every 3 months and stretch the CT scans to every 6 months since there's no radiation from an MRI and the liver is the main organ they're watching out for anyway, which is what the MRI is of. I am still seeing the ocular oncologist. I see him every 3-4 months at the same time as I get my scans. As for plant based eating, I haven't gone full vegan yet, with the holidays I just felt like it was a bad time to do it, but I've been a vegan before 6 o'clock. I eat oatmeal for breakfast, salad for lunch, and then have been eating either a little bit of meat or dairy with dinner but not both. I think in general Asian food is a lot tastier to eat as a vegan than western food just because their sauces are so flavorful. After living in China for 4 years I cook a lot of Chinese food and in stir fries you can easily substitute tofu or mushrooms for the meat. Curries are also a delicious vegan option, both Thai and Indian. I'm so glad that sharing my story has helped you on your own journey. It's the whole reason I decided to share it!
Did the brachytherapy treatment hurt? I think I will be undergoing this soon.
How are you doing
@@icemanbigupdahenrywrightandtlo so far the mole has not grown. I will follow-up next year to have it measured again.
Hi, Glad you are doing well with everything. You are right there is nothing on the internet about the other 50% that are cancer free after 5 yrs! I am on the same page as you with all of this. Mentally it can be challenging at times, but overall I know that I will make it through all of this! I am also doing the juices, plant base, exercise & stress management. They did have to clip my muscle and reattach, which has given me some double vision, but it's slowly getting better. I had some leakage into my retinal that still has some distortion, but they say it may go away over time as the lesion shrinks. Are you having to get a CT or MR every 3 weeks, and lung x-ray every 6 mos? I am reading a good book called "Chris Beat Cancer". It's a good read from a man that beat stage 3c colorectal cancer and is cancer free 17 yrs later! He has a great deal of statistics, information, his journey and positive words. Much hope to have and hoping to help others.
Wishing you the very best as well!
I read that same book! Lots of good info in there. I get a chest CT and MRI abdomen every 3-4 months. Luckily they didn't have to cut my muscle so I've had no issues with vision from the surgery. It's very strange to me that nobody talks about what happens after 5 years. It was nice to know that the longer you go without metastasis the less your chance of metastasis is. I was scared that my risk would just keep going up over the years but thankfully that is not the case. I'm just about 1 year down now so 4 more to go!
Hi ZFM, I know it’s been a year but I’ve recently (5 days ago) had the radiation plaque surgery. They cut one muscle as well then reattached and I’m a little cross eyed in the affected eye. I know it’s early in my recovery but i don’t know if you’ve experienced the same?
If you have, does it get better? Or is the cross eye thing permanent? How are you doing right now?
How is your vision these days after the surgery?
I've lost about 50% of my vision in my left eye, which, according to my doctor, is quite amazing. He said most people lose a lot more of their vision and have many more side effects than I do so I consider myself lucky. Also, the remaining vision I do have is still 20/20 which is awesome!
@@AdventureInTandem you are amazing and very very inspiring.
@@rosemarypark6093 awe, thank you so much! ❤️
I sent you a message on FB please respond when you have a moment
Thank you for sharing this. I was recently diagnosed with OM and it is definitely a scary thing. Watching this helped a bit. We are still in shell shock here and waiting for the referral for more in-depth testing for metastasis etc.
I hope everything goes well for you! I know what a scary time this is ❤️