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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My brother had a melanoma removed from his thigh 9 years ago and had a recurance a couple months ago. He saw a surgeon who removed the tumor and three lymph nodes in the groin, two of which tested positive and one neg. The oncologist said next would be interferon and then radiation. I was concerned that the oncologist wasn't a melanoma specialist and did some research online. I suggested my brother get a second opinion at Moffitt in Tampa because they had melanoma specialists. He saw them Monday and they diagnosed staged it 3c and disagreed with the previously suggested treatment. They want to remove all the lymph nodes from the right groin. I'm not that up on where the best melanoma centers are and think the folks at Moffitt sound pretty sharp. Anybody here know much about them?

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My husband has had om mets to liver since dec., 2010.  He's had resection, ablation, yervoy and gm-csf trial, y-90.  Last scan after y-90 showed bone mets and increased size of liver mets and new liver mets.  How long does yervoy have effect on tumors?  How long does it take for y-90 to show results? is 2 1/2 months too soon?  Worried what to do next.. Husband still feels good. We have appt. at vanderbilt next week to discuss temozolomide vs. AZD-6244 and @ the end of month @ moffitt to talk about anti-pd-1.  Anyone with experience in these drugs that could give us some pointers would be appreciated.  Really feeling a little lost at present.  Margaret

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My husband has had om mets to liver since dec., 2010.  He's had resection, ablation, yervoy and gm-csf trial, y-90.  Last scan after y-90 showed bone mets and increased size of liver mets and new liver mets.  How long does yervoy have effect on tumors?  How long does it take for y-90 to show results? is 2 1/2 months too soon?  Worried what to do next.. Husband still feels good. We have appt. at vanderbilt next week to discuss temozolomide vs. AZD-6244 and @ the end of month @ moffitt to talk about anti-pd-1.  Anyone with experience in these drugs that could give us some pointers would be appreciated.  Really feeling a little lost at present.  Margaret

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margaretrogers57's picture
Replies 1
Last reply 6/19/2012 - 12:54pm
Replies by: paperdetective

Dear  Friends,

 

My husband has had ipi and gm-csf in trial.  Showed progression although small in some mm sized tumors.  We went to y-90 next.  2 1/2 months after rt. and a month after left lobe treated, tumors were significantly bigger.  Also some bone mets appeared. Talking about Temoolomide or azd6244 trial @ vanderbilt or pd-1 drug @ moffitt.  Anyone out there that has done these?  Thanks, margaret

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k1ahmed's picture
Replies 7
Last reply 5/22/2012 - 2:59pm
Replies by: k1ahmed, lak, edamaser

Hello.  Was wondering if anyone here with OM , stage IV has been prescribed Yervoy and actually was able to go through all 4 treatments?

Thanks

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My name is Margaret Rogers.  My husband was diagnosed with om in Jan. '06.  He was plaqued in Mar. 06.  The plaque surgery ruined his retina and as a result he had his eye enucleated in fall of '06.  He was scanned every 6 months with ct of ab. and lungs.  Mets showed up in Dec. '10 almost 5 yrs after om.  We went to Emory in Atlanta and saw an oncologist and Dr. Kevin Kim, an interventional radiologist.  Dr. Kim recommended ablating the largest tumor (1.8 cm.) by the time he ablated it(just a month later) it had grown to over 4 cm.  That ablation was successful and Dr. Kim recommended resection.  My husband, Butch, had resection in April'11.  Scans showed very small tumors by June.  We opted for a multisite trial that had a leg in our hometown of Chattanooga, TN.  My husband had 4 doses X 10mg. of yervoy and( gm-csf self injected shots) on days 1-14 of each cycle.  He was able to have 1 maintanence dose of 10mg of yervoy and gm-csf shots after regular cycle.  He had very little side effects--a little fatique on the first couple of days after infusion of yervoy and whelps and an itchy rash after gm-csf.  He was scanned again in Dec. '11.  This scan showed a few new mets in liver and growth of the largest tumor from 5mm to 11mm in 6 months.  Much slower growth than before.  We then movedback to Dr. Kim & on to y-90 in Jan.'12 for rt. lobe and mar.'12 for left.  We were scanned again April 23 about a month after left lobe. Liver mets were still in turmoil as we had read, heard, and researched.  3 small mets showed up on spine behind liver.  We are anxious to know what to do for that.  Chattanooga says chemo(which we're opposed to because it's usually so lethal and not very effective), trial, or nothing but wait and see. (really don't want to do any of these.)  Put the question to ocumel and responses were zometa?, external beam radiation, cyberknife, or wait and see.  Has anyone had cyberknife or zometa?  Is there anything more out there to target spine?  Have been in contact with Dr. Jeffrey Weber @ Moffitt about pd-1, but not since spine mets appeared.  Any ideas about how to treat spine mets?  My husband is 66yrs. old and very healthy and active even through all the treatments.  He feels great and you wouldn't know he had these issues.  Would like to find something to treat spine mets b/4  they get big and do cause pain.  Please respond.  Will be @ Philly conference in June, God willing and the creek doesn't rise.  Thanks for your imput, Margaret Rogers

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My name is Margaret Rogers.  My husband was diagnosed with om in Jan. '06.  He was plaqued in Mar. 06.  The plaque surgery ruined his retina and as a result he had his eye enucleated in fall of '06.  He was scanned every 6 months with ct of ab. and lungs.  Mets showed up in Dec. '10 almost 5 yrs after om.  We went to Emory in Atlanta and saw an oncologist and Dr. Kevin Kim, an interventional radiologist.  Dr. Kim recommended ablating the largest tumor (1.8 cm.) by the time he ablated it(just a month later) it had grown to over 4 cm.  That ablation was successful and Dr. Kim recommended resection.  My husband, Butch, had resection in April'11.  Scans showed very small tumors by June.  We opted for a multisite trial that had a leg in our hometown of Chattanooga, TN.  My husband had 4 doses X 10mg. of yervoy and( gm-csf self injected shots) on days 1-14 of each cycle.  He was able to have 1 maintanence dose of 10mg of yervoy and gm-csf shots after regular cycle.  He had very little side effects--a little fatique on the first couple of days after infusion of yervoy and whelps and an itchy rash after gm-csf.  He was scanned again in Dec. '11.  This scan showed a few new mets in liver and growth of the largest tumor from 5mm to 11mm in 6 months.  Much slower growth than before.  We then movedback to Dr. Kim & on to y-90 in Jan.'12 for rt. lobe and mar.'12 for left.  We were scanned again April 23 about a month after left lobe. Liver mets were still in turmoil as we had read, heard, and researched.  3 small mets showed up on spine behind liver.  We are anxious to know what to do for that.  Chattanooga says chemo(which we're opposed to because it's usually so lethal and not very effective), trial, or nothing but wait and see. (really don't want to do any of these.)  Put the question to ocumel and responses were zometa?, external beam radiation, cyberknife, or wait and see.  Has anyone had cyberknife or zometa?  Is there anything more out there to target spine?  Have been in contact with Dr. Jeffrey Weber @ Moffitt about pd-1, but not since spine mets appeared.  Any ideas about how to treat spine mets?  My husband is 66yrs. old and very healthy and active even through all the treatments.  He feels great and you wouldn't know he had these issues.  Would like to find something to treat spine mets b/4  they get big and do cause pain.  Please respond.  Will be @ Philly conference in June, God willing and the creek doesn't rise.  Thanks for your imput, Margaret Rogers

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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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