Choroidal Melanoma Survivors

GreenArtist

eyeshavit said:

Got diagnosed last month with Choroidal
Hi, not only is this Choroidal Melanoma scary, but finding someone with this in common with isn't easy. I'm recovering from my plaque removal a couple weeks ago very slowly. I don't know what to expect but it seems everyone has their own unique experience. I live alone and have pretty much no family, (one sister) I'm 50 going on 30, so I thought. So nedless to say I'm strugling with depression and fear. I have more questions every single day and getting answers is next to impossible. I traveled to Wills in Philly and I'm still not having any fun yet. Hopefully someone out there is willing to chat with me. I want to do everything in my power to be as healthy as possibe but at the same time would love to just drink myself to sleep. I want to do nothing but I at the same time feel like I need to live life because now it suddenly seems short. For real! So scared.

Two Weeks since diagnosis
Hi eyeshavit & everyone else. I also went to Wills in Philly and had my plaque removal on Monday, so a week ago tomorrow. I am wondering when the double vision will clear as that is making everything so hard. I usually keep a gauze bandage over my eye glass lens so my family does not have to look at my eye - it is so much worse looking than I ever expected. I find myself focusing on "how are we going to pay for all this" more than my actual health. I understand the feeling that you just want to curl into a ball and sleep until someone else figures out how all this is going to work out...probably why I am not even taking a nap...I just keep making excel files of bills and creating files with all our family finances in case my husband has to deal with this without me. I totally understand how you are feeling eyeshavit, I hope you pop back in here and post an update!

brutz

Giuoco06 said:

Thank you so much for sharing
My husband was refered to a retna specialist (from our regular optometrist when he found what looked like a cyst or tear in his Iris) from a regular check up. The retna specialist said it looked like Iris melanoma, but did not fit all of the symptoms. We were then refered to a specialist in Denver (we are originaly from Texas) and we've done so many different tests and cannot get a conclusion. Just a few weeks ago he had surgery to see what it is (since they saw it was a mass) and also to see if it was in the cilary body. We are both 24, and we have not been able to speak to anyone else that might have had anything similar (normally older or something esle). My whole story is here http://csn.cancer.org/node/242575, please keep in touch.

CM and veterans
Looking for a pattern in fellow veterans. In the year 2010, over 2000 veterans were identified with CM. Statistically there should be about 115 identified. Any fellow veterans out there with CM? Please email
brutz@pasco.k12.fl.us

kailuagurl

jeanjewing said:

Choroidal Melanoma
Hi, I also was diagnosed with Choroidal Melanoma in my right eye. My Specialist, Dr. Wilson is 5 hours away at UT Hamilton Eye Clinic in Memphis, TN. I had the plaque radiation,in January 2010, had to stay in Memphis for 7 days. I went back for my 8 week check up, and 3 days earlier, lost my vision. I am trying so hard to learn to pour coffee, not miss my cup, etc. It is a whole new world out there, one that I get depressed about. I try to stay positive with scripture and positive feedback. I can relate with you and would like for you to please be my friend. I live in Montevallo, AL
I am so sorry we had to be in this small rare division of cancer. (6 IN ONE MILLION) I have been in shock for 3 months, as there is NO cancer in my whole family. Why couldn't we have won the lottery instead?
Take care, please contact me, as I need to know I am not alone..God Bless..Jean

Aloha!

Aloha Jean,

I was diagnosed this past Oct 2012 , Quickly went to Wills Eeye Institute in Philly to get the plaque therepy done.  My cancer is in my left eye. size was 14mmx6.4mm. I just want to let you know that you will get used to using only one eye.  I have had severe kerataconis in this eye for many years before my cancer DX. with very limited sight, and I am still working and driving , it just takes a little time to get used to it , but you will get there. I go back for my 4 mo check in Feb. my current site inthat eye is 20/400 so cant get much worse for me sight wise, but my big fear is that it has already spread altho all my tests so far have been negative.  Anyway hang in There it will get better. Take Care and GOD BLESS Vicky

aurawish

Hello

I'm new to site.  I've been looking for almost 4 years for information regarding symptoms etc that occur 3- 4 years after plaque treatment.  I really want to know if others are experiencing recurrent flasshes, yellow ribbons years after plaque therapy and what it all means?!  I ANYONE is having these things again and have some input, please let me know. I've been told I have developed cataracts which I was initially told would occur.  I have not had anything done yet about them.  There is a lot of info about things that one can expect right after treatment but I can't find anything3-4 years hence.  

 

thanks and positive thoughts your way!

aurawish

Scheduler

I had plaque radiation

I had plaque radiation therapy in December 2012 for small melanom that was detected when I went for new glasses.  I'm lucky...my vision is fine at this point and I have no problems from the radiation.

I'm told that I have to have Avastin injections in my eye.  The first one was given during surgery to remove the plaque and I was asleep.  My first injection while awake will be in April.  The thought of having this injection in my eye is scarier than anything I can think of.  It's never out of my mind and I have become obssessed with reading websites on this topic.  Some people say it's very painful, some say it's not.  After my injection, I have an appt with a specialist about an adrenal mass that was found during testing before the eye surgery.  Will I be able to concentrate on my appt with the specialist after I have this injection?

Scheduler

GreenArtist said:

Two Weeks since diagnosis
Hi eyeshavit & everyone else. I also went to Wills in Philly and had my plaque removal on Monday, so a week ago tomorrow. I am wondering when the double vision will clear as that is making everything so hard. I usually keep a gauze bandage over my eye glass lens so my family does not have to look at my eye - it is so much worse looking than I ever expected. I find myself focusing on "how are we going to pay for all this" more than my actual health. I understand the feeling that you just want to curl into a ball and sleep until someone else figures out how all this is going to work out...probably why I am not even taking a nap...I just keep making excel files of bills and creating files with all our family finances in case my husband has to deal with this without me. I totally understand how you are feeling eyeshavit, I hope you pop back in here and post an update!

hi Green Artist,
I also went

hi Green Artist,

I also went to Wills and i had my plaque removed on 12/3....around the same time as you. My vision has cleared but i'm  having much discomfort. I have an ache deep inside my eye almost constantly.My retina doc says my eye looks good and has suggested that i use OTC drops for dry eye. I have to use them almost constantly. Are you having this problem? I also begin the Avastin injections in April and am terrified! Have you had any injections yet?

 

Scheduler

GreenArtist said:

Two Weeks since diagnosis
Hi eyeshavit & everyone else. I also went to Wills in Philly and had my plaque removal on Monday, so a week ago tomorrow. I am wondering when the double vision will clear as that is making everything so hard. I usually keep a gauze bandage over my eye glass lens so my family does not have to look at my eye - it is so much worse looking than I ever expected. I find myself focusing on "how are we going to pay for all this" more than my actual health. I understand the feeling that you just want to curl into a ball and sleep until someone else figures out how all this is going to work out...probably why I am not even taking a nap...I just keep making excel files of bills and creating files with all our family finances in case my husband has to deal with this without me. I totally understand how you are feeling eyeshavit, I hope you pop back in here and post an update!

hi Green Artist,
I also went

hi Green Artist,

I also went to Wills and i had my plaque removed on 12/3....around the same time as you. My vision has cleared but i'm  having much discomfort. I have an ache deep inside my eye almost constantly.My retina doc says my eye looks good and has suggested that i use OTC drops for dry eye. I have to use them almost constantly. Are you having this problem? I also begin the Avastin injections in April and am terrified! Have you had any injections yet?

 

Rosevine

Scheduler said:

I had plaque radiation

I had plaque radiation therapy in December 2012 for small melanom that was detected when I went for new glasses.  I'm lucky...my vision is fine at this point and I have no problems from the radiation.

I'm told that I have to have Avastin injections in my eye.  The first one was given during surgery to remove the plaque and I was asleep.  My first injection while awake will be in April.  The thought of having this injection in my eye is scarier than anything I can think of.  It's never out of my mind and I have become obssessed with reading websites on this topic.  Some people say it's very painful, some say it's not.  After my injection, I have an appt with a specialist about an adrenal mass that was found during testing before the eye surgery.  Will I be able to concentrate on my appt with the specialist after I have this injection?

Choroidal Melanoma

Hi,

I live in Austrlia and was diagnosed with a choroidal melanoma in Jan 2011.  I was put in the hands of a wonderful specialist who was conducting a trial for these little buggars!

It was his aim to recruit 50 candidates between Australia and New Zealand within 10 years and at the time he was 8 years into the trial and I was candidate no. 24 only!  In order to qualify for this trial of PDT (Photodynamic therapy) the melanoma had to be free of any pigment as the light beam didn't penetrate pigment too well.  Luckily I qualified with all the necessary stipulations.  I had three treatments, three months apart with monthly check ups of B scans and Photos each time.  All was doing well and I would say I was in remission.  Then in August 2012, during one of my regular visits, the B scan showed regrowth!  Of  my entire journey with this cancer, I would say this was my lowest moment.  I had become a bit complacent and thought, this is a breeze, I can do this!  To complicate matters even more, the regrowth is full of pigment so the PDT is no longer the choice of treatment but is the best chance I have of keeping what sight I still have.  The plaque treatment would render me blind in that eye as my melanoma is very close to my macular. 

I have given the PDT one last shot, have had two treaments since August, had a check up on the 15th Feb '13 and will see him again on 15th March.  My plan B is the plaque treatment.  I agree with another blogger earlier on, no-one can really understand what a cancer diagnosis does to ones mind until you have to face it yourself.  I have a breast cancer survivor friend that is my rock, she is so positive and supportive, every one needs a Nancy!

Cindylouwoo

How are you doing now?

How are you doing now?

Cindylouwoo

Giuoco06 said:

Thank you so much for sharing
My husband was refered to a retna specialist (from our regular optometrist when he found what looked like a cyst or tear in his Iris) from a regular check up. The retna specialist said it looked like Iris melanoma, but did not fit all of the symptoms. We were then refered to a specialist in Denver (we are originaly from Texas) and we've done so many different tests and cannot get a conclusion. Just a few weeks ago he had surgery to see what it is (since they saw it was a mass) and also to see if it was in the cilary body. We are both 24, and we have not been able to speak to anyone else that might have had anything similar (normally older or something esle). My whole story is here http://csn.cancer.org/node/242575, please keep in touch.

What ended up happening ?

What ended up happening ?

Cindylouwoo

aharlyridr said:

I feel the same
Hi springm, I just celebrated my one year diagnosis date and as of my last check up I am doing just fine. But there isnt a day that goes by that fear doesnt creep into my daily activities. My tumor is 5.2mm (I think) and no sign of spread and my liver tests have been "normal" with a slightly elevated bilirubin. I was married 3 months before my diagnosis and lets just say we are on the verge of divorce. I have not been able to grieve over my loss of vision becuz he complains Im to crabby and must need my depression/anxiety meds increased...which I might add I did to just prove him wrong. My husband is very insensitive and unsupportive. When I was at my last check up he texted me good luck....no phone call!!! But also in his defense, men deal with this serious stuff way differently than we do especially the ones diagnosed. Cancer is a very scary word and also very scary to live with. There will be days where I will cry wondering what the hell I did to deserve this...but whatever the emotion I might have I have to do it alone. Which is so heartbreaking.....I am a member of a team on the Relay for Life. It is put on by the American Cancer Society and I attended my first event last year and the support that is given to the survivors is amazing. I am getting more involved in fundraising and trying to focus on the good in my life and if my marriage fails....it wasnt meant to be. The most important person in this fight is "me" "you" those living with cancer. If you need me or would like to talk more directly to me I can give you my email. Good Luck and Take Care....Always aharlyridr

Howhow are you doing now?

Howhow are you doing now?

Cindylouwoo

Scheduler said:

I had plaque radiation

I had plaque radiation therapy in December 2012 for small melanom that was detected when I went for new glasses.  I'm lucky...my vision is fine at this point and I have no problems from the radiation.

I'm told that I have to have Avastin injections in my eye.  The first one was given during surgery to remove the plaque and I was asleep.  My first injection while awake will be in April.  The thought of having this injection in my eye is scarier than anything I can think of.  It's never out of my mind and I have become obssessed with reading websites on this topic.  Some people say it's very painful, some say it's not.  After my injection, I have an appt with a specialist about an adrenal mass that was found during testing before the eye surgery.  Will I be able to concentrate on my appt with the specialist after I have this injection?

How are you doing?

How are you doing?

Cindylouwoo

Scheduler said:

hi Green Artist,
I also went

hi Green Artist,

I also went to Wills and i had my plaque removed on 12/3....around the same time as you. My vision has cleared but i'm  having much discomfort. I have an ache deep inside my eye almost constantly.My retina doc says my eye looks good and has suggested that i use OTC drops for dry eye. I have to use them almost constantly. Are you having this problem? I also begin the Avastin injections in April and am terrified! Have you had any injections yet?

 

I went to Will's as well. Had

I went to Will's as well. Had the laser and injection. I actually had to have my muscle cut. Even tho it was not a large tumor....although at this point any size is creepy

Cindylouwoo

kailuagurl said:

Aloha!

Aloha Jean,

I was diagnosed this past Oct 2012 , Quickly went to Wills Eeye Institute in Philly to get the plaque therepy done.  My cancer is in my left eye. size was 14mmx6.4mm. I just want to let you know that you will get used to using only one eye.  I have had severe kerataconis in this eye for many years before my cancer DX. with very limited sight, and I am still working and driving , it just takes a little time to get used to it , but you will get there. I go back for my 4 mo check in Feb. my current site inthat eye is 20/400 so cant get much worse for me sight wise, but my big fear is that it has already spread altho all my tests so far have been negative.  Anyway hang in There it will get better. Take Care and GOD BLESS Vicky

When you say 6.4mm do you mean

When you say 6.4mm do you mean the thickness?

Cindylouwoo

aurawish said:

Hello

I'm new to site.  I've been looking for almost 4 years for information regarding symptoms etc that occur 3- 4 years after plaque treatment.  I really want to know if others are experiencing recurrent flasshes, yellow ribbons years after plaque therapy and what it all means?!  I ANYONE is having these things again and have some input, please let me know. I've been told I have developed cataracts which I was initially told would occur.  I have not had anything done yet about them.  There is a lot of info about things that one can expect right after treatment but I can't find anything3-4 years hence.  

 

thanks and positive thoughts your way!

aurawish

Have you seen a doc to make

Have you seen a doc to make sure the flashes are not from recurrence ? God forbid.. Must we must be pro active

Cindylouwoo

springm said:

Hi
I am new to this and just
Hi

I am new to this and just read your post and I have myself in the last year went through something VERY similar. March 2009 I went under brachytherapy for rather LARGE tumor in my right eye. I go back to the Mayo every 6 months for re checks on my eye, chest x rays and ultrasounds so if the cancer spreads they can keep ontop of it. I am only 28 and am dealing with all this crap. My liver teast are high and this last visit my liver tests showed fatty diffuse infiltration...so i have to to my regular doctor to see what is goin on there.

i have little vision in my right eye, so now I am going through avastin injections to treat macular degeneration. Since the redation did it's job, but it also killed some of the good blood vessels, caused cotton walls, and cysts in there as well. But I have been looking for wupport groups and just someone to talk to who has been going through the same thing as me and it it hard.

And like you said at theast we still have our eye. Thank you for listening! I weill do the same anytime if need be.

Please let me know how you

Please let me know how you are doing

Cindylouwoo

newtop said:

6 month survivor
I underwent plaque radiation treatment for a 12mm x6mm tumor in my right eye 6 months ago. Although the tumor is shrinking and all tests show negative for cancer elsewhere in my body there's not a day that I don't think about it. I am thankful for my treatment but everyone thinks I am ok. I am not ok. I pretend things are good (and they are compared to others). I just wish I could be positive ALL the time about this.

How are you doing?

How are you doing now?

Cindylouwoo

incogjsm said:

Support
In addition to this discussion board, there's one that's dedicated to different kinds of eye cancer. It's http://www.eyecancer.com/

I was diagnosed a year ago October. I have been very lucky. All my tests have been good and while my vision is affected, I still have it...much to my doctor's surprise.

But it's still scary. I am lucky enough to have a Gilda's Club in town where I attend a support group, as does my husband. That has really helped. And part of what we've talked about lately is about how a whole new part of recovery starts once treatment has ended. And how hard it can be because sometimes families think it's all ok then...life can go back to normal...and it can't....or at least not to the old normal. And that it takes time to be able to move toward that new normal.

And I'm still scared. Before every test and ecery doctor's appointment. And sometimes just in general. This is a life changing experience.

How are you doing now?

How are you doing now?

brutz

Cindylouwoo said:

What ended up happening ?

What ended up happening ?

CM and Vets and Veteran wives?

We continue to collect the data. We continue to go through the FOIA data and seperate by age/ location/ et. But the data is so very huge.The high rate among veterans is alarming..perhaps the are veteran wives who have also been diagnosed. Something about the area where one has lived and or served that has coused this to be very high among veterans for a very rare cancer..

So anyone out there? We need the data. We need real people..not just numbers. We need the stories. We need to know to prevent. My husband is going to court for his case and request further research. Some of this may be military enviornmental issues.

There has to be a voice to alert folks as to some possible enviornmental conditions..living on base..in state out of country.. what in the world is going on?

Please email me at

brutz@pasco.k12.fl.us

bb53bc

Avastin

I was diagnosed with choroidal melanoma in 2006 at the age of 53.  Had radiation plaque treatment with no problems.  After all this time my eyesight is now poor in the affected eye, so my doctor has been giving me Avastin injections every four to six weeks.  I see no improvement in my vision, but it's not getting worse.  He told me there is a slim chance of having a heart attack or stroke due to the injections.  It hasn't worried me until I lost two friends this week to heart attacks.  Has anyone elso out there had Avastin injections and, if so, how are you doing?