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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On Sunday, August 12th, lace up your sneakers and join the Melanoma Foundation of New England at the starting line for the 2012 New Balance Falmouth Road Race. You can help spread awareness and educate others in the fight against melanoma.

Runners have been raising funds and awareness for the Melanoma Foundation of New England since 2004. Running for Cover, the Foundation's running team, has been running Falmouth for the past four years. We aim to raise more than $15,000 this year! Runner will be required to raise a minimum of $1,000 to help us reach our goal.

If you, or someone you know, is interested in joining Running for Cover, please visit our website, apply online, or email jshea@mfne.org.

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When you have been recently diagnosed with ocular melanoma, I believe there is nothing more inspirational to help one deal with it than Steve Job's (Apple's new deceased CEO) 2005 Stanford commencement speech, just after he was diagnosed with pancreatic cancer.

The video is heer http://www.youtube.com/watch?v=UF8uR6Z6KLc

The text is here http://facingcancertogether.witf.org/end-of-life/steve-jobs-inspirationa...

And if you want more inspiring details on Steve Jobs, I recommend the approved biography by Walter Isaacson.

 

Peter L in NH

diagnosed jan 2012, biopsied class 1b cells feb 2012,  proton beamed feb 2012, currently no mets, central vision on tumor eye virtually gone, vision in other (lazy) eye also part compromised

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ThatHomeschoolDad's picture
Replies 2
Last reply 6/23/2012 - 8:25am
Replies by: eyecancerny, RobC

What a great conference in Philly.  Now I'm all revved up!  Anyway...

For those of us who chatted afterward, and for anyone else who'd like the info, here some links I mentioned regarding talking to kids about cancer:

YouTube BBC animated series on the body -- Search for "Once upon a time in the body" or go to the member page of the one user who seems to have uploaded nearly the whole series -- www.youtube.com/user/isgota

 It is, as they say, absolutely brilliant.  Also free.

Brainpop.com -- Search on "cancer" and you'll get two or three good animated vids for kids.  You may have to sign up for the free trial to access it.  I’d post the vids, but they are embedded Flash.

I thought there might be one link for Gilda’s Club, but each chapter seems to have its own site, so you’ll have to Google based on your location.  The Wellness Community, which at least in NJ has merged with Gilda’s, does have a single national site, from which you can find local chapters:  www.cancersupportcommunity.org

We go to the parent / kids group Wellness runs in NJ, and it’s super.

The other resource to ask for at your local cancer center or hospital is a Child Life Specialist.   If she’s a Certified Play Therapist, all the better.  If not, try anyway.  If your hospital doesn't have one, look elsewhere.

Seriously, do it.

Monday would be good.

I'm still poking around for more.  Will post under this topic as acquired.

--Tom

Keep Rowing!

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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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margaretrogers57's picture
Replies 1
Last reply 6/19/2012 - 10:04am
Replies by: ThatHomeschoolDad

Looking for trials of anti-pd-1.  Does anyone know of any that accept ocular primary and previous yervoy?  Tried Moffitt, but looking for something closer to TN.  All help is welcome.  Thanks, Margaret

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Looking for trials of anti-pd-1.  Does anyone know of any that accept ocular primary and previous yervoy?  Tried Moffitt, but looking for something closer to TN.  All help is welcome.  Thanks, Margaret

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ALM's picture
Replies 2
Last reply 6/17/2012 - 8:50pm
Replies by: tommonoli, ALM

Hi Everyone

From what I have read my melanoma is fairly rare. Acral Lentiginous Melanoma. Is there anyone out there who has the same disease and can offer me any info? I am stage 4. The primary liesion was on the middle toe which was amputated. A year later another liesion appeared on the ankle which was surgically excluded. I would like to know if ALM is any more dangerous or aggressive than other types of melanoma or are all melanoma basically the same?

Thanks for any help.

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Hi Friends, 

I am just posting this here because I am tryign to do whatever I can to spread the work. Amanda was a CrossFit competitor who lost her life in 2010 to Melanoma. CrossFit honored her by naming a workout after her, a workout that is actually quite difficult. 

I have started a memorial fundraiser in her name called The Amanda Miller Memorial Wod, www.amandawod.com, and I am simply trying to raise awareness. 

there is also a facebook page, www.facebook.com/amandawod, so if you know ANYONE who does crossfit, please pass this information along to them, encourage them to register, and participate. We are trying to raise $20,000 (I know, not a lot but every bit helps) to donate to Memorial Sloan Kettering Cancer Center in Amanda's name, specifically for melanoma research. 

Thank you 

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Heather's picture
Replies 6
Last reply 5/27/2012 - 2:10pm
Replies by: edamaser, tommonoli, Heather, lak

Hello, my name is Heather and I was diagnosed with ocular melanoma in 1995 at the age of 22. I have been very fortunate and have had no metastasis thus far. On my last CT of the chest two 3mm pulmonary nodules were found.  Upon re-evaluation of my scans the one was present on the previous years scan and showed no change....a good thing. I go next month for a follow up CT .  I am hopeful that this will turn out to be nothing, but as you all know it is scary. Until recently, I thought I was safe from metastasis since it had been so long(naive I guess).  After this most recent CT's results, I began to research and came across some people with very long gaps between initial diagnosis and metastasis. Just wondering if this is common? Thanks! Heather

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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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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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