The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Gene_S

View Profile

Base

Name

Gene_S

Bio

I being a male did not seek medical treatment quickly. I had a mole on the back of my scalp that had turned black. It started growing outward around Aug. 2007.

Jan. 2008 – One day it started protruding and then seeping. Finally I scheduled an appointment with a dermatologist. He removed it and originally thought it might be a cyst or at worst Basal Cell Carcinoma. Pathology reports came back two weeks later that it was Melanoma and was 10.5 mm deep. I was then referred to a physician in Cleveland University Hospital, Dr. Rod Rezaee, who removed a wide excision and did a SNB all areas were deemed clear and covered the area with a skin graft on Feb. 14, 2008.

November of 2008 – A lesion was found and it was also removed and was a little lower on the scalp than the first. This area was stitched close. All signs of mel were removed and was deemed clear.

August 2009 – two lesions, one on each side of the previous surgery were diagnosed and they were removed with a wide excision again deemed all cancer removed and skin graft in Sept 2009.

April 2010 – another lesion was found near the clavical bone on the same side as the others. It was removed along with the nerve that goes into the shoulder as it has lymph nodes wrapped around it. Now I have limited range of motion of the arm and the neck. Was also deemed all clear.

October 2010 – Thinking I was going to get a good report in October when I went back to the surgeon after my scans were done again, I found out that I have another lesion under the last skin graft area and this one is against the spine so it is inoperable. Plus I had mets in my lungs and liver.

December 2010 – I tried for the clinical trial for Oncovex and was refused because the size of the lesion in my liver.

March 2011 – I started with the Ipi Clinical Trial with the GM-CSF. I am receiving the 10 mg/kg dosage. After 12 weeks I received my scans and the good news my disease was overall 39% regression as of May 2011.

May 2011 am now in the maintenance phase of the clinical trial with the GM-CSF still getting my self injections every 3 weeks of that I take 2 weeks of injections and then 1 week off as before with the Ipi infusion 12 weeks after the last one. August 2011 scans at the end of 24 weeks since I started and an overall regression of 56% so I get scans in 6 weeks.

Oct. 2011 scans show over 60% regression with the one that was inoperable totally gone (the one near the cervical spine). Rescan in 6 weeks just after the next infusion of Ipi. The eyebrows, beard and mustache areas are almost totally white. The Dr. says the loss of skin pigmentation means the Ipi is working.

Nov. 2011 scans show over 63% regression. Still on the maintenance phase and will receive Ipi again on Dec. 23.

My last scans April 27, 2012 were great. I only have 1 lesion left in the liver and it is nearly not measurable.

July 2012 after scans am NED.

Oct. 2012 after scans unchanged but it did show blood clots in both lungs and spent 11 days in the hospital. Was sent home with Warfarin (Coumadin the blood thinner). I was told my oncologist that many people that have cancer or had cancer have a greater chance of getting blood clots. I am thankful that mine showed on the scans as otherwise I would have not known I had blood clots as I had no symptoms and it could have been fatal. I was transported to the hospital in an ambulance and they wouldn’t even let my wife drive me as it was that serious.

I became NED in Oct. 2013.

Next Ipi Infusion Dec. 14, 2012. Still in the maintenance phase.

I went off of the maintenance phase on Dec. 2013.

I started my journey with the clinical trial March 3, 2011 and on March 3, 2015 I went in for my 5 year since starting the clinical trial and still remain NED.

July 2017: I became NED in July 2012 and I just passed my 5 years of cancer free.

July 2018 and it is my 6th Anniversary for NED.
July 2019 7th Anniversary for NED

I am

the patient

Initial Diagnosis Month

January

Initial Diagnosis Year

2008

Stage at Diagnosis

Stage 2

Current Stage

Stage 4

Badges

Clinical Trial Participant
Ocular Melanoma
Caregiver
NED
Cutaneous
Mucosal
Pediatric