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 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! 

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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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Although many new molecular and genetic discoveries have been made in the ocular melanoma field in the past few years, much more research is needed to more fully understand how some of these discoveries will impact effective treatments for patients.  In the a recent review article: http://www.hindawi.com/journals/pri/2011/159421/, some of the molecular differences between ocular and cutaneous melanoma are outlined.  Although this article is largely up-to-date and accurate, it doesn't mention the GNA11 mutation in ocular melanoma.  As many of you will know, the general numbers are that about 50% of ocular melanoma has a mutation in GNAQ and another 30% has a mutation in GNA11.  From early research, it looks like the molecular signaling is similar between these two mutations, but research is ongoing to learn how to effectively target these mutations, and, if targeting these is enough to halt disease-- current thinking is that the GNAQ and GNA11 mutations are part of the solution, but likely not the complete solution (for example, researchers are now looking into the role of the newly identified mutation in BAP1 and how this may interact to cause metastasis).  As you can see from this article, research in ocular melanoma is behind research in cutaneous melanoma and some of the ongoing areas of ocular melanoma specific research are mentioned in the Conclusion section of this article.

Please feel free to post thoughts, questions, or experiences with some of these treatments (i.e. many ocular melanoma patients have had experiences with MEK-inhibitors and new trials are opening for IGF1-R inhibitors and other targeted therapies as well).... please feel free to ask questions and share your experiences....

Warmly,

Sara - CURE OM

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Replies by: Sara - CURE OM

Dear All-- we are very excited to announce our 1st annual Eyes on a Cure: Patient and Caregiver Symposium: 

CURE OM's 1stAnnual Eyes on a Cure: Patient & Caregiver Symposium

One month after hosting the first CURE OM scientific meeting (for physicians and researchers), CURE OM is excited to announce that we will be bringing the latest news from the ocular melanoma scientific community directly to patients and their loved ones in the inaugural Eyes on a Cure: Patient and Caregiver Symposium on June 16th and 17th, 2012.  Eyes on a Cure will bring patients, caregivers and researchers from around the world together to offer educational sessions, support groups led by oncology social workers, sessions on complementary therapies, as well as informal time for networking. 

This first patient and caregiver symposium will be held in Philadelphia at the Kimmel Cancer Center of Thomas Jefferson University.  Confirmed speakers include: Carol Shields, Takami Sato, David Eschelman, Carin Gonsalves, William Harbour, and James Pingpank.  Please check back often as new information is posted and registration opens. 

We look forward to seeing you in June!  Please do not hesitate to contact us with any questions or concerns.

Warm Regards,

Sara- Director, CURE OM

& and CURE OM team

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About 6 years ago, eye cancer patients living in and around NYC starting meeting annually for a luncheon each spring.  The group has grown over the years and it has become a bi-annual event (spring & fall).  Our next get together is scheduled for Saturday November 19th at 3pm at the Blue Belle Cafe in NYC.  If you are interested in attending, please let me know.  You may e-mail me at eyecancerny@gmail.com.  Hope to "see" you there.

Peace,

Anne Marie devil

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Shelby - MRF's picture
Replies 4
Last reply 12/2/2011 - 10:27pm

Welcome, everyone, to the newly launched CURE OM online forum!  This forum is for anyone affected by ocular melanoma.  It is our hope that you use this resource to create friendships, ask questions, get advice, share your triumphs, laugh, whine, complain...and probably lots of other things I'm forgetting.  You will build friendships here that will be unlike any other.  You will hear stories that will inspire you.  You will hear stories that will break your heart.  But, most of all, you will have a support group to lean on 24 hours a day -- a group of people who have gone though, or are going through, the same experiences as you. 

On behalf of the Melanoma Research Foundation, we look forward to experiencing this journey with you and welcome you to this community.  If you need to contact me, I can be reached at smoneer@melanoma.org, 202-347-9675, or you can email cureom@melanoma.org and someone directly involved in the CURE OM initiative will contact you.

Sincerely,

Shelby Moneer, MRF Health Educator

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