CURE OM Forum


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I was wondering if anyone has gotten this diagnosis? I was diagnosed at stage IV in 2006 and am NED still at 5 and a half years! I know this is probably one of the rarest types of eye melanoma and I know only just a few that have been diagnosed with this. I would love to correspond to anyone that would like to about this subject. There is hope!

~Suzanne 

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There's an interesting article by Jerome Groopman in the April 23 issue of The New Yorker magazine, about T-cell research and cancer. There's an abstract of it here. It discusses some of the research that lead to the approval of CTLA-4 (Yervoy).

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With the trend of increasingly abundant free online university courses, the
university of Pennsylvania now offers a basic course of 4-5 weeks on
Pharmacology starting in June. See https://www.coursera.org/

It may help understand how drugs work in principle and how therapies get
developed and what the future opportunities and current limitations are.

I'm also following this online university course myself to become a better
talking partner for my doctors.

 

Peter L in NH

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Hi all,

I am attending the symposium and am wondering who else is attending. I am looking forward to meeting other Ocular Mel warriors! I am hoping to go to Friday's Meet and Greet, but my plane is arriving at 5. Hoping to go and maybe we can have some dinner together!

Fondly,

Suzanne

Every day I wake up is a gift!

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SuzannefromCA's picture
Replies 6
Last reply 5/6/2012 - 10:05pm

Hi all,

I am attending the symposium and am wondering who else is attending. I am looking forward to meeting other Ocular Mel warriors! I am hoping to go to Friday's Meet and Greet, but my plane is arriving at 5. Hoping to go and maybe we can have some dinner together!

Fondly,

Suzanne

Every day I wake up is a gift!

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Nan in Nebraska's picture
Replies 1
Last reply 4/6/2012 - 3:15am
Replies by: Sara - CURE OM

Hello All,

Well, I had my first re-induction infusion of Yervoy yesterday. I will have 4 cyberknife treatments to the lesion between my stomach and spleen. My oncologist did speak with a colleague of Dr. Wolchok's and his recommendation was to do cyberknife between the first and second infusion. So praying and keeping my fingers crossed for the "abscopal effect".

I'm looking forward to the symposium in June. If everything goes as scheduled, my last infusion will be June 6th. :)

Nan

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abrown's picture
Replies 7
Last reply 4/15/2012 - 4:27pm
Replies by: abrown, Sara - CURE OM, Anonymous, edamaser

Hello,

I wondered if anyone as experinced multiple family members with OM?  My son was born with and Iris nevus in 2007 and was seen by and Ophthamologist a couple of weeks later.  The doctor told us at the time they were common and we would keep a close watch on it because they have the potential to turn malignant. 

At that time my sister had a spot in her eye that I thought she should get checked out because it had started to get visibly larger, and because of what my sons doctor had told me she should be watched also.  She has been monitored every year since then and more often recently when it appeared to have grown last year.  She has been seen by a couple of oc. oncologists.

Last July I started seeing a flashing light in my right eye and went to see a local Oph.  He believed that it was a hemangioma and sent me on to a retina specialist.  The retina specialist believed it to be choroidal melanoma and sent me on to a ocular oncologist.  The oc. oncologist has been monitoring my lesion since then, and it wasn't until my appointment last week that it showed growth with sub-retinal fluid also.  I will be getting my lesion treated with plaque therapy.

I wondered if there were any other families with similar situations.  My oc. oncologist recommended that my son be watched closely also, so he had his first documented pictures yesterday by a local oph.  If anyone has been in a similar situation I would really appreciate any information you can give about this seemingly familial link.

Thanks so much,

Ashley

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edamaser's picture
Replies 8
Last reply 5/22/2012 - 11:10pm

Hi Everyone,

About two weeks ago I felt like a switch had been turned on--I felt so very good.  I still feel good.  I haven't felt this good in years, mostly, I thought because of side effects of the many, many treatments I have had.  But now I suddenly have more energy, do without naps, my brain seems to be functioning better, my appetite has returned and is even more ferocious than before, etc.  .

If you remember, my calcium several weeks ago went way up, and I ended up in the hospital.  I was feeling pretty bad.  Even after I got out of the hospital they could not seem to get the calcium down, and I was feeling worse and worse.  I had Zometa, but two weeks after that calcium was still up.  Then the "switch" went off, and I felt great.  A couple of days ago I had labs again, and the calcium is now normal.  Maybe it was a delayed reaction to Zometa.

One doc said that he thought my feeling good has everything to do with the calcium coming down.  I don't know the cause for sure, but I'm thrilled about the "new" me.

They have no idea what caused the rise in calcium in the first place, but a special blood test was done to see if it was caused by the cancer metastases.  I found out that it is not coming from the cancer!  Hooray, but no one knows what caused the rise in calcium, or if it will return.

Just thought I'd share about this calcium business--I don't think I've heard about anyone else who had calcium problems.

Esther

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RuthG's picture
Replies 10
Last reply 4/6/2012 - 12:44pm

Hello -

My partner has just been diagnosed with uveal melanoma. He's scheduled to have an eye removed day after tomorrow. He might join this forum after he's had the surgery, but right now he's got other things on his mind.

I'm very glad to find this group. He's been able to talk with a couple of people who have lost an eye, or lost vision in an eye, as adults. But we've never heard of OM before, and we don't know anyone who is experiencing the same thing.

We're very lucky that we live not far from Philadelphia, and he was tested and diagnosed at Wills Eye Institute. The surgery will be done there as well. That's one of the things thats helping both of us right now -- knowing that Wills is an excellent place to be if you have this particular problem.

We've already signed up for the symposium in Philadelphia in June. I hope we'll get to meet some of you there.

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Nan in Nebraska's picture
Replies 4
Last reply 4/27/2012 - 4:41pm

Dear Esther,

I've been thinking about you and wondered how your brain MRI went? Hope your news was good.

Warmly,

Na

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Nan in Nebraska's picture
Replies 8
Last reply 5/24/2012 - 11:14pm

Sara and Lesley, both of you being physicians, I'd like your opinions.

The results of my scans are not what I wanted to hear, but not surprising. The nodular mass between stomach and spleen is 5.2 x 3.6, up from 4.3 x 2.9 in Jan. and 3.4 x 2.3 in Oct., 2011. Several mesenteric/lymph nodes have also increased. Slight enlarged nodule in right lung base. (these have not really scared me as I've had numerous areas and they do seem to remain approx. the same) Ironically, radiologist feels some improvement in the liver as he only identified two locations, but MRI of abdomen in Jan. stated 5 lesions from Nebraska radiologist and 6 lesions from Dr. Sato?? I have sent my info. to Dr. Nutting for review. As I stated before, my main focus is the large lesion by the stomach. I asked the doctor that called yesterday (my doctor on vacation) about the possibility of doing Ipi re-induction, as that had been approved when I was on the compassionate trial, then doing cyberknife to the lesion after the Ipi (hopefully to get the same effect as the patient of Dr. Wolchoks) and his response was "how do you feel" -  "you know you could die from doing the Ipi". I told him I'd had very little if any side effects the first time and he said that it could be different the next time. I felt he was a bit negative! Do you have to wait to feel bad before you do something? I'm frustrated/confused.... I do feel fine. Do I just sit and let things GROW??

I did ask them to re-read my PET scan that was done in Jan. as the only mention was mild uptake in my one shoulder and I've been having some rotator cuff issues. Stated- PET images were "clear of any metabolically significant activity".

Something else I wanted to mention was that my LDH on my last labs was 95, which is below normal. Any thoughts on that?

I'm abit down, not knowing what the next step should be. I see my doctor on Monday, the 19th. She is very good and does listen, but is not a melanoma specialist.

Anxiously awaiting your thoughts.

Nan

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Please join us for a free teleconference on April 12, 2012 from 8-9pm EST. The topic is "When Mom or Dad has Melanoma" and will be hosted by Dr. Fran Lewis from the University of Washington. Don't forget to register!

http://www.melanoma.org/get-involved/when-mom-or-dad-has-melanoma-educational-teleconference 

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TomJ6299's picture
Replies 5
Last reply 3/21/2012 - 12:14pm

I went to an Ocularist in New Orleans who I wont name on 3/8/12, I'm not thrilled with the eye. At 8 weeks from enucleation I was ready for my prosthesis, he put me off a month because of Mardi Gras. During that month, I still had my conformer in from the enucleation, I could literally feel my socket area shrinking and sinking in. The prosthetic eye is in, upper lid hangs a bit, the prostheses looks quite a bit smaller than the other eye, it also looks like the whole eye area is lower than the other. The eye has been full of crud or whatever u call it each morning. Im so unhappy, no one told me that putting off the fitting for a month would cause the socket to shrink and sink. Friends and family just say it looks like a lazy eye, and not bad at all. I go back in 2 weeks for adjustment. I looked at pictures of people with prosthetic eyes, most perfectly match the other eye, I believe I got the bottom of the barrel as far as Ocularists go

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Dear All,

I want to let you know about a every exciting upcoming event...

Join us on May 6 in Los Angeles for Miles for Melanoma on the Universal Studios backlot-- a 5k run/walk.  This will convene at Universal Studios Hollywood to help raise critical awareness and funding needed for new treatment breakthroughs.  Along the route, participants will see iconic movie sights, including the Bates Motel, sets from Jaws and Back to The Future, and the village of Whoville!

We want to form a specific CURE OM team to participate in this event to raise awareness about OM and also to raise much needed funding specific to ocular melanoma.... if you are interested in being a part of the CURE OM team, please post here or email cureom@melanoma.org

We look forward to seeing you in LA and working together to raise awareness and funds to find a cure for ocular melanoma.

Warm Regards,

Sara - CURE OM

http://www.melanoma.org/get-involved/miles-melanoma-universal-studios

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edamaser's picture
Replies 10
Last reply 11/28/2012 - 5:33pm

I would like to share with you something that has come up for me as a consequence of metastatic cancer that I never heard of before, and since I've been at this for 9 years, it is a bit surprising. I would like to inform you all with metastatic cancer that this might happen to you as well.

 The condition is hypercalcemia--too much calcium in the blood. In my case, I ended up in the hospital for 3 days while they figured out the situation and what to do about it. They think it is caused by the melanoma itself, which releases some substance that encourages calcium to be leached out of my bones. For anybody this is pretty serious, but for an old lady like me, it's scary. I will end up getting zometa, which only will slow down the leaching. Nothing can replace the calcium already leached out. Be sure to note that I do not have any bone mets, if my hypercalcemia is caused by cancer, it is all soft tissue cancer.

 The possible symptoms are wide-ranging: for e.g., confusion, memory loss, constipation, abdominal pain, kidney stones, etc. etc. The condition of hypercalcemia is discovered by a simple blood test.

Has anyone encountered hypercalcemia before?

Esther

 

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