CURE OM Forum


Welcome to the CURE OM Forum, a community bulletin board designed to address the needs of the ocular melanoma community – patients and caregivers alike. Here you’ll find answers to questions about OM diagnosis and treatment, and support from people from all stages, levels of treatment and from all over the world.

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TomKeepRockin's picture
Replies 14
Last reply 1/30/2013 - 1:47am

I am about to start with my first treatment of Yervoy ("Ipi")next week at Kimmel Cancer Hospital (Philadelphia) under the guidance of Dr. Sato. I have had one immunoablation (early Sept) to the liver and will have a second one next week as well. Diagnosis is several small lesions (0-5cm) discovered. Last May initial Cancer (Uveal) Melanoma to the eye and had no choice but enucleation - and chromosomal/genetic tests suggested high % of metastization. So, it's been caught relatively early with constant MRI's, bloodwork and other tests. So - just wanted to know other people are reacting to the Yervoy tratments,, any commonalities. As you all can see, by viewing the yervoy website is nothing short of a death sentence... Thank You! Tom 

"Be casual and do random things!"

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Hello everyone!  I hope this message finds all of you feeling well.  I wanted to post to remind everyone of CURE OM's patient meeting, Eyes On A Cure, that is taking place on March 2nd & 3rd at MD Anderson Cancer Center in Houston, TX.  Attatched you will find the draft agenda for the meeting.  This is a free event to everyone, however registration is required.There is a block of rooms reserved at the Houston Marriott at the Texas Medical Center until February 7.  If you register before February 7, you will received the discounted rate.   

This meeting is not only a time to learn about what is going on in the world of OM, but to also network with other patients and caregivers that are going through a similar situation as you are. Tell your friends, tell your family, bring your loved ones. 

Here is the link to to the event page on the CURE OM website where more information, including the draft agenda, can be found at this link:

http://www.melanoma.org/get-involved/2nd-annual-cure-om-eyes-cure-patient-and-caregiver-symposium-houston-tx

The agenda can be found at this link:

www.melanoma.org/sites/default/files/program-documents/2013 CURE OM Patient MTG Agenda.pdf

Don't forget to visit the CURE OM Facebook page at: http://www.facebook.com/cureom

Follow us on Twitter: @MRFCureOM

As always, if you have any questions, please send an email to cureom@melanoma.org

Looking forward to seeing you in Houston! 

The battle was lost, but the war must go on until a cure is found.

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Jinx's picture
Replies 7
Last reply 1/21/2013 - 11:36pm

I posted this in the MPIP page and it was suggested that I also post here.

 

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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Seeing as my aunt was just dx today with Stage IV cutaneous, I have Stage IV ocular, and her father (my grandfather) had prostate and parkinsons when he died, this kinda fits together:

http://www.eurekalert.org/pub_releases/2012-09/jaaj-sea083012.php

Granted, there's that whole corrleation-does-not-imply-causality thing, but interesting nonetheless.

--Tom

Keep Rowing!

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ladyelaine's picture
Replies 18
Last reply 1/4/2013 - 11:34pm

Elaine Welch, Lancaster County, PA. 67 years old.
I had a mole on my left fore arm removed in 1976, tissue was lost, not tested. Within a year a bunch of freckles appeared where the mole was removed. When you're covered with freckles a few more didn't matter.
Over the next 7 years the area turned all colors. In 1984 I had a wide resection about the size of an orange off my forearm with plastic surgery. It was a Clarke Level 4. I had no nodes removed, no treatment, followed up for 3 years, no further issues.
In 2006 after years of heavy cycles I had endometrial cancer (uterus lining) and a hysterectomy. Nodes clear, no further treatments, no further issues.
This November 12, went to optometrist, needed new glasses. She found a tumor in my left eye. She wanted to wait 3 months and recheck. I went to my family doctor and he could easily see the tumor with a naked eye.
So now I will start this new journey on January 2 with an appointment at Penn State Hershey Medical Center.
So now you know what I know!
BTW, my father had his eye removed due to melanoma in 1970 at the age of 63. No further treatment. He died 12 years later from liver mets.
My big goal now is seeing my 50th wedding anniversary July 5, 2013.

Que Sera Sera

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Replies by: margaretrogers57, lak

Just had blood work and 5th infusion of anti-pd-1.  This time the bilirubin had gone up to 1.3 previously .6  and alkaline phospate had gone up from 195 to 225.  Has anyone had this happen and does it mean the drugs aren't working.  HELP  Margaret

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Just had blood work and 5th infusion of anti-pd-1.  This time the bilirubin had gone up to 1.3 previously .6  and alkaline phospate had gone up from 195 to 225.  Has anyone had this happen and does it mean the drugs aren't working.  HELP  Margaret

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Hi there to everyone that may read this.

I am Renae and live in the South Island of New Zealand. I am married to Michael and we have 3 children ranging from 16 to 3.

A month ago Michael was diagnosed with metastatic melanoma. Stage 3.

2 weeks ago he had a level 3 auxillary node dissection. yuck.

When we were given his diagnosis when his histology and ct results were back (the day of my 33rd birthday) we were told quite clearly that there is nothing that can be done for us here in NZ. There are no trials running and the Doc also stated very clearly that radiation and chemo were of no help to us.

The primary has not been found,

The Doc removed 18 nodes and thought as she was doing it that they were all riddled as they were black.

However apparently they are all clear bar the one that we definately knew of, the tumour in it measured 5.5cm. Huge apparently. Looks revolting also!

The specialist found out that we were working out what day to head to Mexico or anywhere really to find some sort of treatment as there was nothing here to cling to and at our next appt (last wednesday) she said that because of the size of the thing we were allowed to try radiation. We have health insurance so atleast there will be no extreme wait or congestion in the process.

I am however having a real issue with this, why do we put ourselves through this when the chance of it doing any good are so small? There is noway (that I am aware of) of the docs being able to tell us if the radiation has achieved anything or not.

Is it worth it while the primary is there somewhere lurking??

I am really wanting to find out from anybody and everybody about any treatments. Conventional or otherwise. We will go anywhere and spend anything to fix Michael.

He is the love of my life and the best father to our children, I am not going to take this lying down. I will get Michael through this and win this fight.

I am aware that alternative is a bit airy fairy but maybe there is something in it?

We have no trials here in NZ available to us, apparently we could try one however when he is in the last months of his life category. Cheers that is verey beneficial NZ.

I hope that everyone has a very merry xmas and a fantastic new years!

We will be up our gully, sitting on our deck having a bbq and drinking a few speights beers. Doing all the things we shouldn't be really, very soon there will be no fun until Michael is all better!

Merry Xmas

Renae x

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Molly- CURE OM's picture
Replies 10
Last reply 12/27/2012 - 2:51am

Hello everybody!  Thank you so much for participating in the recent CURE OM Q & A session with Dr. J. William Harbour from Bascom Palmer Eye Institute and CURE OM Scientific Steering Committee Co-Chair.  I apologize in the delay in getting the answers out to everybody.  The link below will take you to the questions and answers.  Thank you again for participating and for your patience!  

http://www.melanoma.org/sites/default/files/u13882/Dr.%20Harbour%27s%20Q%20and%20A.pdf

Don't forget to "Like" the CURE OM Facebook page!  The link is provided below.

http://www.facebook.com/cureom

 

Molly

The battle was lost, but the war must go on until a cure is found.

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I keep a line int he water over at Ocumel, and thought this was worthy of a repost.  A quick scan of PubMed shows conflicting results regarding early p53 studies, but the the reports are also years apart, which may point to an evolving understanding.  Interesting, anyway.

http://tinyurl.com/p53nytimes

and

http://www.ncbi.nlm.nih.gov/pubmed/16784742

vs.

http://www.ncbi.nlm.nih.gov/pubmed/11374804

 

--Tom

Keep Rowing!

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Hi there to everyone that may read this.

I am Renae and live in the South Island of New Zealand. I am married to Michael and we have 3 children ranging from 16 to 3.

A month ago Michael was diagnosed with metastatic melanoma. Stage 3.

2 weeks ago he had a level 3 auxillary node dissection. yuck.

When we were given his diagnosis when his histology and ct results were back (the day of my 33rd birthday) we were told quite clearly that there is nothing that can be done for us here in NZ. There are no trials running and the Doc also stated very clearly that radiation and chemo were of no help to us.

The primary has not been found,

The Doc removed 18 nodes and thought as she was doing it that they were all riddled as they were black.

However apparently they are all clear bar the one that we definately knew of, the tumour in it measured 5.5cm. Huge apparently. Looks revolting also!

The specialist found out that we were working out what day to head to Mexico or anywhere really to find some sort of treatment as there was nothing here to cling to and at our next appt (last wednesday) she said that because of the size of the thing we were allowed to try radiation. We have health insurance so atleast there will be no extreme wait or congestion in the process.

I am however having a real issue with this, why do we put ourselves through this when the chance of it doing any good are so small? There is noway (that I am aware of) of the docs being able to tell us if the radiation has achieved anything or not.

Is it worth it while the primary is there somewhere lurking??

I am really wanting to find out from anybody and everybody about any treatments. Conventional or otherwise. We will go anywhere and spend anything to fix Michael.

He is the love of my life and the best father to our children, I am not going to take this lying down. I will get Michael through this and win this fight.

I am aware that alternative is a bit airy fairy but maybe there is something in it?

We have no trials here in NZ available to us, apparently we could try one however when he is in the last months of his life category. Cheers that is verey beneficial NZ.

I hope that everyone has a very merry xmas and a fantastic new years!

We will be up our gully, sitting on our deck having a bbq and drinking a few speights beers. Doing all the things we shouldn't be really, very soon there will be no fun until Michael is all better!

Merry Xmas

Renae x

Login or register to post replies.

Hi there to everyone that may read this.

I am Renae and live in the South Island of New Zealand. I am married to Michael and we have 3 children ranging from 16 to 3.

A month ago Michael was diagnosed with metastatic melanoma. Stage 3.

2 weeks ago he had a level 3 auxillary node dissection. yuck.

When we were given his diagnosis when his histology and ct results were back (the day of my 33rd birthday) we were told quite clearly that there is nothing that can be done for us here in NZ. There are no trials running and the Doc also stated very clearly that radiation and chemo were of no help to us.

The primary has not been found,

The Doc removed 18 nodes and thought as she was doing it that they were all riddled as they were black.

However apparently they are all clear bar the one that we definately knew of, the tumour in it measured 5.5cm. Huge apparently. Looks revolting also!

The specialist found out that we were working out what day to head to Mexico or anywhere really to find some sort of treatment as there was nothing here to cling to and at our next appt (last wednesday) she said that because of the size of the thing we were allowed to try radiation. We have health insurance so atleast there will be no extreme wait or congestion in the process.

I am however having a real issue with this, why do we put ourselves through this when the chance of it doing any good are so small? There is noway (that I am aware of) of the docs being able to tell us if the radiation has achieved anything or not.

Is it worth it while the primary is there somewhere lurking??

I am really wanting to find out from anybody and everybody about any treatments. Conventional or otherwise. We will go anywhere and spend anything to fix Michael.

He is the love of my life and the best father to our children, I am not going to take this lying down. I will get Michael through this and win this fight.

I am aware that alternative is a bit airy fairy but maybe there is something in it?

We have no trials here in NZ available to us, apparently we could try one however when he is in the last months of his life category. Cheers that is verey beneficial NZ.

I hope that everyone has a very merry xmas and a fantastic new years!

We will be up our gully, sitting on our deck having a bbq and drinking a few speights beers. Doing all the things we shouldn't be really, very soon there will be no fun until Michael is all better!

Merry Xmas

Renae x

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I just ordered the book Anticancer: A New Way of Life by David Servan-Schreiber after a helpful recommendation on another OM Cancer online discussion forum.  An excerpt mirrored the advice I was given by a woman at the lab that is doing my genetic testing:

"The first thing I learned is that we all carry cancer cells in us, even if only a few. But we also have natural defenses that usually prevent these cells from becoming an aggressive disease. These defenses include our immune system; the bodily functions that control inflammation; and foods that reduce the growth of blood vessels needed by tumors."

I also have a stack of Kris Carr books.  As much as I find her peppy cheerefulness a bit draining, (this is all too new to me to think of anything about Cancer to be 'Sexy' quite honestly).  But skimming one of the books...I am warming to her.  I'd love to focus my energies more and find all this reading and researching is making my cancer diagnosis take up 90% of my life (with the other 10% trying to figure out how in the world we are going to AFFORD all these medical costs.)  Has anyone else read and benefitted from any of these "Crazy, Sexy, Cancer" series?  THANKS!!  Sue from CT

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sunnybunch2's picture
Replies 1
Last reply 12/13/2012 - 5:30pm
Replies by: Molly- CURE OM

Hi,

 

My brother is having his first embolization for metastic ocular melanoma with liver mets next week.  Looking for anyone that has had them and exactly what your side effects were and how long they lasted?.  When were you able to return to work?

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Molly- CURE OM's picture
Replies 8
Last reply 12/13/2012 - 3:08pm

Good morning!  The Q & A with Dr. Harbour is now OPEN!  Please remember that the Q & A session will be hosted from 9:00am EST until 9:00pm EST.  The questions will then be submitted to Dr. Harbour by CURE OM staff.  Please understand that not every question can be answered.  We will do our best to ensure that your questions will be answered.  Check back to the CURE OM forum on Monday to see if your answer has been posted.  

To post a question, post it as a reply to this thread.  If you posted a question the other day, please repost your question on this thread.  If you have any questions, or need assistance, please contact Molly at mstoffa@melanoma.org.  

Happy Posting!

The battle was lost, but the war must go on until a cure is found.

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