choroidal melanoma of the eye

maxcat40
maxcat40 Member Posts: 7
edited March 2014 in Head and Neck Cancer #1
Hi, I was diagnosed approximately 1 month ago with a large tumor in my right eye. I went in thinking I needed glasses because of computer strain.

I left a message under emotional support, but noone is replying. There isn't a chat section just for eyes.

The cancer I have tends to metastisize to the liver, but it is different than liver cancer. Average lifespan is anywhere from 5 to 14 mos.

My prognosis is good at this point. I go for radiation treatment on Monday and really needed to talk to someone.

I'm still on the emotional rollercoaster. I have young children and I'm 42. I really wanted to see them graduate and start their lives.
I live in a small town and have tried to find emotional support through a group, but to no avail.

After radiation I go for a 6 week check-up, then a 3 mos. for a year and then 6 mos. thereafter.

I'm a basket case waiting for liver test, chest x-ray, cat scan and mri. I need to push through this, I know. I also know a positive attitude helps. Most days I can deal with it. Some days are just harder than others.

Any words of wisdom or coping methods?

Thanks, Sherri

Comments

  • msnorberg
    msnorberg Member Posts: 10
    #2
    Hi Sherri,
    It sounds like you are the right frame of mind. My only suggestion for coping is to be honest with yourself and with people around you about your feelings; good or bad. You can post messages at thing board any time. I know people have wanted to have a chat. The problem with that is getting people logged on at the same time to enter the chat room. I think the way to do it is to pick a day and time including time zone adjustment far enough in the future for people to know about it, but not so far that people don't remember. My hope for you is that the radiation is successful and you will work through this.
    Mark
  • jerrikehoe
    jerrikehoe Member Posts: 27
    #3
    HI Sherri
    I read you notes and although I donot have your type of cancer I do have or I should say had a very rare type of nasalpharynical cancer and there are few survivors with the type I have suffered with.
    I started my battle when I was only 29 years old and had just delivered my third baby, needless to say the terror I went through when i finally got my diagnosis, and like you I asked God to let me live long enough to see my children raised who were an enfant and 2 little girls 4 and 5.
    Without going into a lot of detail Sherri I would like to tell you in July I graduated from a Computer Specialist Course and I am now back studying Accounting oh and about my little children well I have two other little children to add to that list that I want to live long enough to see grow up and they are my two grandchildren Olivia and Camron and sherri I am now 55 years old.
    I hope my story gives you some enourgnment to keep on hanging in there.
    God Bless
    Jerri
  • maxcat40
    maxcat40 Member Posts: 7
    #4
    jerrikehoe said:

    HI Sherri
    I read you notes and although I donot have your type of cancer I do have or I should say had a very rare type of nasalpharynical cancer and there are few survivors with the type I have suffered with.
    I started my battle when I was only 29 years old and had just delivered my third baby, needless to say the terror I went through when i finally got my diagnosis, and like you I asked God to let me live long enough to see my children raised who were an enfant and 2 little girls 4 and 5.
    Without going into a lot of detail Sherri I would like to tell you in July I graduated from a Computer Specialist Course and I am now back studying Accounting oh and about my little children well I have two other little children to add to that list that I want to live long enough to see grow up and they are my two grandchildren Olivia and Camron and sherri I am now 55 years old.
    I hope my story gives you some enourgnment to keep on hanging in there.
    God Bless
    Jerri

    Dear Jerri:

    You truly are an inspiration.

    The ugly green monster can be beaten, can't it?

    I'm hanging in there and just got a great job, I wasn't even looking as I was taking some time off for R and R and got a call. I'm a Graphic Designer and someone I sent a resume to said they should look at mine.

    I was hired last Friday. I told them about my upcoming appts and they are willing to work with me. A little miracle maybe. I'm excited!
    I just hope nothing comes up in my test results, but I'm moving forward and hoping for the best!

    God Bless and many hugs from me :)Sherri
  • one eye willy
    one eye willy Member Posts: 1
    #5
    Sherrie,
    How are you today?
    Sherrie,
    How are you today? I was diagnosed last july with the same thing as you. it is a rare type of cancer and hard to find people to talk to. the funny, or scary, thing is that my neighbor has the same thing. 1% of people get this and there are two of us within 3 houses! I found out i had a tumor in my eye last summer by just going to make an eye appt. never had an exam before, but my eyes were feeling/acting funny. tunnel vision, white flashes ... i went to make the appt and the dr just happened to have an appt right then, so i went. before i knew it, she sent me to a local hospital to see a specialist. She knew but didnt want to tell me cuz i had my daughter with me. she told me to go with someone and drop the kids off somewhere. she told me i had a torn retina, which i think i did have. i dropped off the kids and went with my husband to the hospital. not even 5 minutes in the office, we found out that i had a very large tumor in my left eye. before i knew it, we were in philly at the wills eye institute, about 10 days later going through a good 6 hours of intensive testing. they told me the best option was to have my eye removed, or go through the process with the radiation seed treatment, but cuz it was so big, i decided to just get it removed. i felt confident about my decision, it was hard to convince my family. i think they thought i made a rash decision. my thinking was like yours, i have 2 young kids and HAD to be there for them and if thats what it was going to take, thats what i was going to do! exactly a month later, i had my surgery, out patient surgery! i still chuckle about that, it was a drive through, okay, take my eye and i will be on my way! we drove back home to CT the same day. i was so happy to be home and be in my own bed! the recovery was not long at all. i look at it as a bump in the road and now i have a few more querks but its okay cuz im here for my kids and can still be a wife! Don't get me wrong, i still have bad days, its still hard to comprehend what happened. i think i didnt give myself time to cope cuz i thought and did go on for my kids! I was a wreck the first time back for testing! everything came back fine. i have to go back this august, not looking forward to it. my brother gave me a book called The Lost Eye, it sounds harsh, but it really helped me get through the phases of recovery and what to expect in the future. you might want to look at it. i hope my story helps and would love to help you with anyhting i can. I'm 38 with two young kids and have to keep moving on and if i can help anyone on the way, i would love to:)i hope to hear back from you!
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #6
    Sherri, I'm so sorry to hear
    Sherri, I'm so sorry to hear your story. I want to welcome you to CSN and let you know that you will find support here and hopefully some answers as well. I've not seen another post on this type but you never know.
    My prayers will be with you and the others who posted here in reply to you. I hope you all will please take care and let us know how you are doing.
    God Bless and Heal you all,
    debbie
  • Scambuster
    Scambuster Member Posts: 973
    #7
    MCP ?
    Hi Sherri,

    Sorry to hear you are going through this. I am 8 mths out from treatment for SCC of the Tonsil and have consulted Naturopaths as well as Doctors throughout my treatment and recovery (Surgery/Rads/Erbitux).

    Among other things, I was put on MCP (Modified Citrus Pectin) as it is known to be effective in preventing Metastasis in some Cancers and especially Melanoma. It comes in a powder form. I mix a heaped teaspoon in my Shake and pour onto my cereal everyday so it is easy to take like that or in juice.

    There are many websites with information, so you might want to check it out. I got mine from an Alternative Health Clinic but I am sure you can find it at a good Supplements outlet.

    You should also look at your nutrition and getting your immune system working properly as that will increase your chances of a good recovery from this beast. Hit it with everything.

    Feel free to PM me anytime for any further help.

    Wishing you well.
    Scambuster (in China).
  • dottie27
    dottie27 Member Posts: 4
    #8
    one eye willy said:

    Sherrie,
    How are you today?
    Sherrie,
    How are you today? I was diagnosed last july with the same thing as you. it is a rare type of cancer and hard to find people to talk to. the funny, or scary, thing is that my neighbor has the same thing. 1% of people get this and there are two of us within 3 houses! I found out i had a tumor in my eye last summer by just going to make an eye appt. never had an exam before, but my eyes were feeling/acting funny. tunnel vision, white flashes ... i went to make the appt and the dr just happened to have an appt right then, so i went. before i knew it, she sent me to a local hospital to see a specialist. She knew but didnt want to tell me cuz i had my daughter with me. she told me to go with someone and drop the kids off somewhere. she told me i had a torn retina, which i think i did have. i dropped off the kids and went with my husband to the hospital. not even 5 minutes in the office, we found out that i had a very large tumor in my left eye. before i knew it, we were in philly at the wills eye institute, about 10 days later going through a good 6 hours of intensive testing. they told me the best option was to have my eye removed, or go through the process with the radiation seed treatment, but cuz it was so big, i decided to just get it removed. i felt confident about my decision, it was hard to convince my family. i think they thought i made a rash decision. my thinking was like yours, i have 2 young kids and HAD to be there for them and if thats what it was going to take, thats what i was going to do! exactly a month later, i had my surgery, out patient surgery! i still chuckle about that, it was a drive through, okay, take my eye and i will be on my way! we drove back home to CT the same day. i was so happy to be home and be in my own bed! the recovery was not long at all. i look at it as a bump in the road and now i have a few more querks but its okay cuz im here for my kids and can still be a wife! Don't get me wrong, i still have bad days, its still hard to comprehend what happened. i think i didnt give myself time to cope cuz i thought and did go on for my kids! I was a wreck the first time back for testing! everything came back fine. i have to go back this august, not looking forward to it. my brother gave me a book called The Lost Eye, it sounds harsh, but it really helped me get through the phases of recovery and what to expect in the future. you might want to look at it. i hope my story helps and would love to help you with anyhting i can. I'm 38 with two young kids and have to keep moving on and if i can help anyone on the way, i would love to:)i hope to hear back from you!

    Words of encouragement.....
    It really is encouraging to read through stories of others with the same diagnosis. It gives us a place to ask questions about treatment and recovery (though we know every one will handle and heal differently). Thank you for sharing your stories!

    My grandmother, also named Dorothy (I have made this account for her), is 84 yrs old and just diagnosed with Choroidal melanoma of the right eye. She is overall very healthy. You wouldn't think she was over 65! She does have macular degeneration in the left eye as well thus leaving her with poor vision bilaterally. We are still in the testing phase to ensure it hasn't spread to other areas. Her first appt at MD Anderson was this past Wednesday. She was given the options of removal of the eye or radiation with the plaque. She believes radiation is the answer; however, she is very concerned about the discomfort she will encounter during the procedure. Being in healthcare myself, I do believe we can control the pain with medications but she is unsure if she will be able to handle it. My research revealed that while uncomfortable and there will be some pain, many do well with just ibuprofen on schedule during the time the plaque is in place. Can you give some additional information regarding your experience that we can share with her? She knows that leaving it will cause more issues but is very anxious about treatment.

    Thank you for your time and consideration! God Bless!

    Dorothy
  • brutz
    brutz Member Posts: 7
    #9
    Scambuster said:

    MCP ?
    Hi Sherri,

    Sorry to hear you are going through this. I am 8 mths out from treatment for SCC of the Tonsil and have consulted Naturopaths as well as Doctors throughout my treatment and recovery (Surgery/Rads/Erbitux).

    Among other things, I was put on MCP (Modified Citrus Pectin) as it is known to be effective in preventing Metastasis in some Cancers and especially Melanoma. It comes in a powder form. I mix a heaped teaspoon in my Shake and pour onto my cereal everyday so it is easy to take like that or in juice.

    There are many websites with information, so you might want to check it out. I got mine from an Alternative Health Clinic but I am sure you can find it at a good Supplements outlet.

    You should also look at your nutrition and getting your immune system working properly as that will increase your chances of a good recovery from this beast. Hit it with everything.

    Feel free to PM me anytime for any further help.

    Wishing you well.
    Scambuster (in China).

    CM and veterans
    Looking for fellow veterans who have been diagnosed. In the year 2010 alone over 2000 veterans were identified - statistically the number should only be 150. Any veterans out there? email me please
    brutz@pasco.k12.fl.us

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