Tom

It went from a small lesion on my chest to full blown Stage IIIB melanoma in one month.

 

In Oct-Nov 2014 I noticed a color change in a mole I had on my collar bone area on my chest.The mole I had all my life and was only about 1/8 inch in diameter. It was changing from brown to having black flecks or streaks in it (not full blown black). In Nov 2014 I went to see my family doctor while I was traveling in Cleveland. He told me to see a Dermatologist. I had a lot going on at that time and was moving in Feb 2015 so I put off the dermatologist until April 2015 (first off I found out how much of a mistake procrastinating was). The Dermatologist MD asked me how I was able to see something so small, but did say it did look suspicious and said I needed a biopsy. In 2 days he called me to tell me I had cancer and wanted me to come see him that same day.  

My tumor was melanoma Clark Level 4 with 0 mitosis. He said he could cut it out, but wanted me to see a oncology surgeon and also ask for a Sentinel Lymph Node Biopsy. I did see the oncologist in 2 days and he recommended the complete resection, but said the SLNB was optional as my tumor was so small. He thought it was less than 6 months old and with 0 mitosis not to really worry about it. After talking with the doctor and knowing I was going to have surgery and be put to sleep I said I wanted the lymph node biopsy. With that in mind he told me the Sentinel Lymph Node could be under my arm or in my neck. Since he did not do neck surgery he sent me to an ENT surgeon for an exam. The ENT DR sent me off to get a neck CT because he felt a lump in my neck. Yes my stomach dropped. The CT scan the next day was negative so we moved on to schedule the surgery and sentinel lymph node removal.  

The day of the surgery (May 2015) I was sent off to radiology to have the radioactive dye tracer injected into my tumor and to map the sentinel lymph node.  Everyone says this radioactive dye hurts like hell and I was even told by the tech injecting it that I may scream or jump out of the bed.  I have to admit it did burn but felt more like 4 bee stings.  I was so happy about that.  My lymph node mapped to my left arm pit so the ENT surgeon was not called in and my Oncologist Surgeon performed the surgery.  I was warned beforehand if the sentinel lymph node was positive I would need a second surgery to complete a full lymph node resection. Surgery went well and I was out of the hospital the next day. I as up and around in 2 days back to my normal life. No pain at all.  

It took 2 weeks to get the pathology report and yes it turned out the sentinel lymph node was positive for melanoma. Yes I was freaking out again because this placed me at a stage IIIA cancer. Now came the next week of diagnostic testing. I was sent for a PET scan the next day. Turns out a tumor was found on my liver. The DR was very concerned and sent me for an MRI of my liver. I told him I was having issues with my speech and thinking process, so he also sent me for a MRI scan of my brain.  My Brain scan was normal, but the radiologist said I had a metastatic tumor on my liver.  This changed everything and my DR said he would no longer need to remove my lymph nodes if the cancer had traveled to my liver. My Oncologist Surgeon did not believe the Radiology report and got a second opinion. The next day I was sent for an ultra sound of my liver. I can see on the face of the Sonar Tech she was concerned. I left the hospital after the ultra sound and 30 mins later the hospital called my cell phone and said I need to come back to the hospital the next day for a large needle liver biopsy. Now I was shaking and about started to cry. I am a single guy at 50 years old and I do not have anyone to lean on. 

I was so frightened the next day. I was told they would do the needle biopsy while I was awake on the CT table. I was concerned this could be a way to spread cancer cells throughout my body. I thought deeply about it over night.  I went in to the hospital the next day. On the table I was shaking like a leaf.  Finally the nurse said I would not really feel much as they would numb the area and give me a "happy cocktail" I was also told that there are no nerves in the liver so I will not feel the needle stuck in me. Well the cocktail was good and the operation went on. I saw a man stick a thick needle in my chest. When I moved on the first time the needle was placed into my liver, the DR asked if I felt that because I moved. I said yes i felt it but it did not hurt. The DR told the nurse to give more drugs. That felt good and I had a second stab at it. The biopsy was finished and I had 3-4 hours to recover and went home. The next day my DR called me to tell me the tumor was benign and that I would continue on with my left radical axilla dissection the next day. I was at the hospital everyday for the next 10 days.

The next day (June 2015) I went into the hospital again for my lymph node surgery. All the nurses were asking why I was here every day. Even the nice girl that takes my money before surgery could not ask me for my credit card again and said we will settle up later.  The lymph node removal was a lot more painful than I would have guessed.  I had this JP drain tube placed into me.  I stayed in the hospital over night and was sent home.  I basically stayed on the sofa for a week while I drained out. I could not lift my arm for 2 weeks. After 2 weeks I got the pathology report and all the other lymph nodes were clean.  I was give a final cancer stage of IIIB and sent off to a Medical Oncologist to determine my treatment.

The Medical Oncologist informed me that chemo treatment does not work on melanoma, radiation did not work on melanoma, and Interferon may only increase my life by 2 months after one year of treatment and that I would be sick in bed with the worst flu. Unfortunately the chemo and Interferon is the only FDA approved treatment for a stage III.  The DR said at the moment I was NED (no evidence of disease) and that I should consider surveillance with PET and CT scans every 4 months. Then he told me that at a stage III I had a 50/50 chance to have the cancer return. He could not tell me if the cancer would return in a 1 year or 20 years.  It is a crap shoot.  I asked about Yervoy, Opdivo, and/or Keytruda.  He told me the FDA will not allow treatment with those drugs unless you are stage IV with a life expedience of less than a year. All along I was doing research for clinical studies. I had one in mind (NCT02388906) that offered either Yervoy or Opdivo in a blind study for patients that where stage IIIB and had a full lymph node dissection. That was me in a nut shell, but I only had 12 weeks to enter the study from the last surgery. The clock was ticking. The study was in Orlando, Tampa, and Jacksonville FL, all with in driving distance. I was happy I did not have to travel to MD Anderson in Houston.  The Dr agreed with me that I met the criteria for the study and placed me in touch with UF Health in Orlando FL.

I entered the clinical study in Aug 2015. Sept 1 & 2 I had a full blood and labs completed, full body CT scan and bench mark EKG.  The CT scan showed no sign of any tumors.  My new Oncologist does not believe I have any tumors in my liver.  On Sept. 9 I will have my first infusion.  I will need to be at the hospital every week for 52 weeks and then have 3 years of post trial surveillance. I am doing this to hopefully save my life and and prove that these new immune therapy drugs are safe for stage III patients so the FDA will permit treatment for those that have a chance to kick this melanoma.  I will be getting high dosage Yervoy or Opdivo for a full year of treatment. This not only means a high dosage but also a double treatment (2 series in a year).  For those that do not know, Yeyvoy cost $120,000 for one series and Opdivo cost $150,000 for one series. I will be given about $250,000 in drugs for free, but I do have to pay for all my treatment that would be considered standard for my cancer stage.  I do have insurance, but expect to pay about $10,000-$15,000 a year out of my pocket for the clinical trial.  Like I said, I am doing it for me as well as others.

I am happy to answer any questions you may have of me and I plan to update my post as I continue through my treatment over the next year and 3 years after that.

Wish me luck,

Tom

Fri, 2015-09-04

Comments

Daniel - (9/22/2015 - 11:25pm)

Hi Tom, I wish you luck at this instance and want to express my gratitude for your attitude in helping others with questions about this.

I´m a father of a 29 year old son who has a stage IIIB/C Melanoma and we are trying to enter this same trial. I can´t find anywhere whether this is a blind test between Nivolumab and Ipilimumab or between Nivo and placebo and Ipi and placebo. I hope the question is clear enough for you to answer. And again, thank you very much and do have good luck!

geriakt - (10/10/2015 - 9:37pm)

Yes the trial is confusing the way it is written or even if there is an end point.  To be clear it is a double blind test of either Opdivo or Yervoy.  You are given one or the other for the full cycle of 50 weeks.  Basically you get and infusion of Opdivo every other week (26 treatments) and Yervoy every 3rd week (4 treatments) then follow up of one per month every 2 months. So week one you get an infusion of both the Opdivo and Yervoy only one of the infusions is a placebo. 

Unfortunately the trial has closed as BMS got all 800 study patients very fast. I was one of the last to get accepted into the trial. 

Tom

Debbrock - (9/23/2015 - 7:53am)

I start my yervoy treatments today , I'm very nervous. Good luck to you .

debbie

geriakt - (9/25/2015 - 8:31am)

 

Debbie, how did you get on Her boy as a 3b? My only choice was a clinical trial. I am on week 3 and so far my only side effects are itchy skin.

 

 

 

 

 

 

 

 

 

 

 

Hi tom. Just reading through forums on melanoma ..it was either that or break down in tears. I am awaiting biopsy results on a very small 2.4mm diameter mole o didn't know I had on my back that doc picked up on. When I felt it..i could not believe it was bleeding ... didn't even know it was there. Docs referral says suspects melanoma and I'm just so scared. Anyway I hope ur treatments are going well. Best wishes sue