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Ocular Melanoma

Hi, I'm Shelly W.

Any Other Patients Diagnosed with Ocular Melanoma?

  • Post #1
  • Sun Dec 22, 2019
Hi, I'm Shelly W.

I was diagnosed with a Ocular Melanoma earlier this year and had enucleation surgery in July. I would love to connect with anyone else who has been diagnosed with this cancer.

  • Post #2
  • Sun Dec 22, 2019
Hi, I'm Barbara D

Diagnosed with Ocular melanoma in 2017. Castle test results were class 2 prame negative. Have had 1 biopsy, last march and another scheduled on 1/2.

  • Post #3
  • Sat Dec 28, 2019
Hi, I'm P-30 Princess

I was diagnosed with choroidal ocular melanoma 09/2013 and had brachytherapy (radiation) in Iowa City 10/2013. The tumor has been classified as inactive (dead)for several years. Still get liver ultrasounds & labs every 6 months. Also followed by dermatologist, gynecologist, & Iowa City specialist yearly and have annual mammograms. See local Retinal specialist every 4 weeks for injections to combat radiation retinopathy.

  • Post #4
  • Sun Dec 29, 2019
Hi, I'm Transform

I was diagnosed with a choroid always ocular melanoma in 8/2018. I had brachytherapy (radiation) with Dr Aaberg in Grand Rapids in 11/2018. Castle test results (biopsy) showed it to be class II, prime negative. Follow up shows the melanoma to have shrunk and no damage in the eye. I have had MRI of the liver and CT scan of the lungs twice. No sign of cancer activity. I will continue the MRI and CT scans every 6 months.

  • Post #5
  • Sun Jan 5, 2020
Hi, I'm Shelly W.

Thanks everyone. I’m also Class Two, Prame negative. Dr. Chandana is my medical Oncologist and is doing MRIs and ct scans every 4 months. So far so good. Dr. Aaberg is my ocular oncologist—because of the enucleation, i only need to see him once per year.

  • Post #6
  • Mon Jan 13, 2020
Hi, I'm Robert R P.

I was diagnosed with choroidal ocular melanoma 05/2016 and had brachytherapy with Dr. Wilson in Memphis. The melanoma has shrunk and I have had only a small change in contact strength. I now have CT scans and chest x-rays every six months. What I have been told is unrelated is a diagnosis of prostate cancer for which I had proton radiation. To date that too has been clear.

  • Post #7
  • Sat Jan 18, 2020
Hi, I'm Sandra M.

I had ocular melanoma about 10 years ago. I had the proton beam at UCDavis near Sacramento. It killed the cancer but did leave scar tissue on my center vision. I was cancer free until late in 2017 when the cancer came back in my breast, liver, and lungs. I was started on immunotherapy with Keytruda to start, then changed to the high dosage of Opdivo and Protonix. They seemed to get it under control and I was changed to the “maintenance” dosage of just Opdivo. The problem I had with that was it was totally draining my strength. I lost over 40 lbs. my balance was terrible, I was so weak that I could not step up onto a curb without something to hold on to, but it did get the cancer under control. I was taken off the treatment in Apr. of 2019 and have gained a lot of my strength and balance back. The cancer has been mostly kept at bay. I did get a spot on my upper arm that was taken care of with radiation at the 1st of the year. I now have a few spots left that are just sitting there doing nothing and my Oncologist is monitoring it every 3 months with PET scans.

  • Post #8
  • Sun Jan 19, 2020
Hi, I'm Barbara D

update: Diagnosed in January 2017. Castle test presented class 2 Prame negative. Metastasis to liver December 2019. Had radioembolization 3 weeks ago and still recovering.

  • Post #9
  • Thu Apr 2, 2020
Hi, I'm Tim

I am of the opinion that the above comments belong to someone else. Please advise me that the above has been corrected. Apr 4, 2020
Tim C. Chafin

  • Post #10
  • Sat Apr 4, 2020

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