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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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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edamaser's picture
Replies 3
Last reply 5/22/2012 - 3:15pm

Hi Everyone,

I had scans yesterday--mixed results.  From the neck down my numerous, multiple, and widespread lesions are stable or shrinking by tiny amounts (there is one new one in the neck).  Overall, Dr. Weber feels this is an indication that ipi is working, and wants to do nothing unless there is progression, in which case he thinks another ipi induction would be in order.  I agree, except that I would love to have a re-induction of ipi right now and not wait for progression.  But it's not my call.

The bad news is that the 4mm lesion in my brain, noted 3 months ago is now 6mm.  Also there is a 1mm spot in the brain which is non-enhancing (therefore not clear whether it is melanoma or not); this is new.  Tomorrow I will have a fancy MRI, a Novalis, which makes 1mm cuts of images rather then the usual 5mm.  So, stereotactic radiation is in order, at least for the 6mm one, and maybe both.  I have no symptoms whatsoever from any of the lesions, brain or otherwise.

I will follow up on stereotactic radiation at Moffitt asap.

Bad news, but no complaints.  It has been 9 1/2 years since my first liver lesions.  Life has been good to me during that time.  Life is still good, though I must say that these ups and downs are wearing...

I wish the best for all of you,

Esther

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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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texaninlouisiana's picture
Replies 1
Last reply 5/17/2012 - 10:06pm
Replies by: texaninlouisiana

Good Evening - new poster (unfortunately) wanting to get some hopefully 1st or 2nd hand experience with desmoplastic melanoma.

My father was diagnosed last Friday, had the WLE and SLNB on Wednesday and everything is going along smoothly -- including the lymph nodes visibly not looking any different. We will get the official path report back next week so needless to say, we are praying it's not a combined form of DM, instead of pure.

The tumor was 2.7mm thickness, 2cm WLE was done, and SLNB with visibly clear sentinal node removed.

My question is for anyone who has had experience with this sub-type. I already know quite a bit about it by hours of research and findings but I just haven't found any credible personal info on any forums -- both here and melanomaintl.org -- it's really frustrating. My father has really good docs treating him, including one of the best oncologists around but I get a feeling that this type is not something they have dealt with before which is unsettling; not to mention my father trusts them completely. We have resources in the Houston area, meaning MD Anderson is somewhere we could go but he is so worried about the convenience factor (family is in Northeast Texas) of traveling, etc -- it's very frustrating.

Anyways, back on point...I'm reaching out to this larger forum to see if anybody has had experience with this. The only things I've read on here are other questions from folks wondering the same thing as me.

Thank You All in advance.

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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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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 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 5
Last reply 4/26/2012 - 10:01pm

Hi All,

Has anyone heard of Cixutumumab (IMC-A12)? Is anyone on this trial? I have just heard of it and am wanting more info.

Thanks,

Nan

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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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