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.

Questions about what to post? Visit our forum posting policies for guidelines.

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margaretrogers57's picture
Replies 2
Last reply 2/27/2013 - 7:50pm

Has anyone heard of Ly2875358 for metastic uveal melanoma?   It is a Lily drug affecting the c-mets.  It specifically mentions uveal in one arm..Margaret

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margaretrogers57's picture
Replies 1
Last reply 3/1/2013 - 9:45am
Replies by: ThatHomeschoolDad

Has anyone heard of Ly2875358 for metastic uveal melanoma?   It is a Lily drug affecting the c-mets.  It specifically mentions uveal in one arm..Margaret

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Replies by: lak

We're at md anderson and I think they're going to try to treat my husband's metastic ocular melanoma with revlimid and sorafenib.  Has anyone heard of these or have taken them for metastic om?  Please help.  Margaret

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We're at md anderson and I think they're going to try to treat my husband's metastic ocular melanoma with revlimid and sorafenib.  Has anyone heard of these or have taken them for metastic om?  Please help.  Margaret

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Jinx's picture
Replies 9
Last reply 7/29/2013 - 4:45am

I had my first Yervoy infusion on Friday (2/1) and actually had a side effect not from the Yervoy but from the Benadryl they gave me pryer to the infussion. Belive it or not I have never taken Benadryl in any form. Aside from this cancer, I really have never been one to get sick. The last time I was sick was about 15 years ago when there was a bad flu hitting.
Anyway...I started feeling very strange and felt like I was going to pass out, but not really dizzy. It was like a hyper anxioty about something about to happen, alone with a feeling I was going to pass out. My blood pressure dropped from 120/72 to 88/65. They opended the iv and flushed my vein. It fianlly went away after about ten minutes. 
Anyone else here have this happen? If so, did they use something other than Benadryl before the next infusion/

The only side effect I had from the Yervoy (if it really was one) was a few back to back adrenalin head rushes later that night. I was a little bit slow to get going the next day, but have felt fine since.

Jerry

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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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sunnybunch's picture
Replies 8
Last reply 8/17/2013 - 1:44pm
Replies by: lak, NameMax, Anonymous, Chookapa

My brother has been offered a clinical trial for AEB071 at Dana Farber.  Has anyone with metatastic ocular melanoma tried this drug on a different clinical trial?  If so what were the side effects and was it successful?

Thanks, Anne

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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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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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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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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

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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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