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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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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lak's picture
Replies 19
Last reply 7/3/2012 - 11:28am

Hi,

I am in the UK, I was diagnosed with OM 5 years ago and became stage IV with liver metastasis in May 2009. I am 53 now and never thought I would see 2012. I have had a hard time  in the National Health Service getting a proactive approach to my disease. In the beginning it was very lonely. Things are changing and now most clinicians admit to patients that the disease can spread outside the eye.  I am now looked after by excellent doctors who are prepared to answer my questions and inform me about my disease. I have been extremely lucky , my small choroidal melanoma was close to the fovea but Proton beam has enabled me to have better than 6/6(20/20) vision. I have had avastin vitrectomy and cataract ops too. My liver was looked after by a top MRI specialist who found my metastases very early. These were treated first with liver resections x2 then ipilimumab recurrences 6 months later SIRT sorted all but 2 of 18 metastasis throughout the liver. Microwave ablation sorted the last 2. The latter treatment was the hardest and completed in Dec I am only just getting fit again. My 5k time is embarrassingly slow but then many UK 53 year old females can not do 5k at all! I have added swimming and cycling too to my fitness regime to try and rest my joints a bit. My latest scans are all clear of disease. I have plans to run a 10k and maybe a half marathon- but also a SCUBA trip to the Maldives. I have only had  surgery.ipilimumab and radiation for treatments no actual chemotherapy .I am writing this post because I think it is so important that we all unite and share information both between patients and doctors but also across the table.

I accessed treatments because I was informed. In 2007 if you had a poor diagnosis it generally was not thought wise for a patient like me to be informed. I was empowered to get myself informed by an American Charity (Lance Armstrong Foundation) and I owe them the time I have gained. I then met other patients through the internet and Sara and learned through others experiences and "Google" . Many US doctors have seen my scans at various times and advised me. Several times I have been on the verge of traveling to the US for treatment only to be able to access treatment in the UK. For some reason it is easier to find out "who does what" in the US than it is in the UK. I profusely thank all the US doctors who have responded to my emails over the last 5 years it gave me so much support and ideas.  I hope by supporting CureOm and sharing across the pond that situation will change.

Reading Tom's post brought back so many memories of that first year post diagnosis- I really don't think I slept more than 15 minutes at a time for a whole year. For people with a new diagnosis I really want to tell them that even if the worst happens its not all bad. For those of you who have developed metastatic disease like me - yes its not always easy. For those carers who have lost their loved one - I am so sorry- but I thank you so much for continuing to be here and fighting for a cure for us. To the doctors who treat us I m sorry we are sometimes angry and you guys get in the firing line, I m sorry we don't often do well - it must be a hard disease to watch as a clinician over a career.

To all of those involved patents, carers and doctors sharing information and experiences from around the world has contributed to my disease free status- I am sure if team working across specialties and doctor patient relationships can be built on across the globe then a cure will be found for this disease.

Carpe diem

Lesley

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Next week, Melanoma.org will be undergoing maintenance to improve site functionality. To make the process smoother, we want to alert you that the forums will be unavailable between the hours of 2 and 5 a.m. (EST) on Tuesday, February 7, and that any posts made between 5 a.m. and noon that day may not be captured in the transition. Thanks for your understanding! 

Shelby - MRF

 

Why are the boards down?

The boards are suspended so no changes are made to the site during the update - this helps the update process happen much faster.

Will I be able to post again after the boards come up in the morning?

Ideally, we'd like you to wait to post for a few hours after the boards go live, say, waiting until 8 or 9am EST.  That said, you should be able to post again as soon as the boards are live again at 5 am EST.  However, please be advised that if you do post that early, your post may not be captured fully.

The boards look exactly the same as they did before. What really changed?

You’re right -  the boards are the same. What changed is how responsive the site will be. We upgraded our server so that the site will be faster and there will be fewer hang-ups when you click on links, especially on the weekends when traffic is high. 

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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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Molly- CURE OM's picture
Replies 4
Last reply 12/29/2011 - 1:03pm

Hey everybody!  I was in on the teleconference, but didn't get a chance to ask my question, mostly because I was trying to figure out the best way to ask it.  I really enjoyed listening to Dr. Harbour and Dr. Flarety. 

Here's my question.  My mother in law passed away from metastatic OM in March of this year.  There is a strong family history of cancer in her family.  Her father died of bone cancer, her brother died from either brain or lung cancer, but was also in Viet Nam.  Now that gene mutations have been identified, would it make sense for her siblings and her children to be tested for the same mutations?  Is there even a test out there that is known in the general physican community for them to request? 

I was also so irritaited during the phone conference because there was talk of doing biopsy's of the OM tumors upon diagnosing.  I asked my mother in laws doctor about doing a biopsy and was told "oh no, we don't do that for fear of the cancer breaking out and spreading to other places."  Just goes to prove even more about the lack of education on this disease. 

Thank you,

Molly Stoffa

The battle was lost, but the war must go on until a cure is found.

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TomJ6299's picture
Replies 18
Last reply 3/11/2012 - 3:36am

Hi ! My name is Tom fontenot , I was diagnosed with Choroidal Melanoma Friday, the last 2 days have been like a nightmare. Im 49 and never have been sick, my vision is screwed up, didnt sleep Friday night but rested well last night, Today I seem to have some peace, guess im getting used to it already, any feedback will be greatly appreciated

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Sara - CURE OM's picture
Replies 6
Last reply 1/3/2012 - 10:10am

Dear All--

Thank you for joining the first CURE OM Community Teleconference.  We threw out a lot of information and only had about 15 minutes for Q&A so please feel free to use this space to ask any additional or lingering questions.... we are here to help answer your questions, and, if it is something we don't know, we can try to find the answer for you.

Also, in case you were unable to join the call in person, we will have the recording up on our website (www.cureom.org) soon.  Feel free to ask questions after listening as well...

Warm Regards,

Sara - CURE OM

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Shelby - MRF's picture
Replies 2
Last reply 12/20/2011 - 1:39pm

Please join us for the CURE OM Community Teleconference on Saturday, December 17th, 2011 at 12pm EST.  The call will be led by Dr. Tim Turnham, Dr. Sara Selig, Dr. William Harbour, and Dr. Keith Flaherty.  For additional information, the agenda and registraion, please use this link:

http://www.melanoma.org/get-involved/cure-om-community-teleconference 

If you have any questions, please don't hesitate to contact me at education@melanoma.org or 202-347-9675!

Shelby - MRF

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Nan in Nebraska's picture
Replies 4
Last reply 12/17/2011 - 11:44am

I'm not sure this getting to the right forum as I see at the top "Create Off-Topic Forum Topic" even thought I'm under the Ocular Melanoma Forum. Hopefully this gets to the right place. Anyway-

I am so bummed! I've been watching AND waiting for the anti-pd-1 trials to open and see that they exclude uveal melanoma. I've had some success with Ipi/Yervoy, being stable since April after finishing the Ipi trial the end of Dec., 2010. I have what look to be highly necrotic lesions in my liver, but still am showing a 3 cm mass near my stomach and a few spots in my abdomin. I was so hoping to find a anti--pd-1 trial. I saw on the Melanoma International website that a highly respected doc said it was 3 time better than Yervoy with fewer side effects. What can be done to get the drug companies to accept us. Would it help to call them or have our docs plead our case? HOPEFULLY they will drop the exclusion. I'vebeen fighting this disease since 2001 and have done GM-CSF, abraxane, avastin, carboplatin, temodar, gleevec, MEK, Ipi/Yervoy. There just does not seem to be much else out there. Any thoughts or recommendations???

Nan in Nebraska

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als's picture
Replies 1
Last reply 11/28/2011 - 11:58pm
Replies by: als

Interesting article and link to it about preventing mets.....
 
Chemopreventive effects of dietary phytochemicals against cancer invasion and metastasis: Phenolic acids, monophenol, polyphenol, and their derivatives

http://www.cancertreatmentreviews.com/article/S0305-7372(11)00041-7/abstract?elsca1=etoc&elsca2=email&elsca3=0305-7372_201202_38_1&elsca4=oncology

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