Re-posting my father’s story…from Stage 4 to NED…

Though my father passed away Feb 16, 2012 of merkel cell skin cancer, he remained melanoma free from the end of this story for the remainder of his life…

In honor of his first granddaughters 5th birthday tomorrow, I'm reposting this story in hope that it encourages and inspires you in your fight…

Though my father passed away Feb 16, 2012 of merkel cell skin cancer, he remained melanoma free from the end of this story for the remainder of his life…

In honor of his first granddaughters 5th birthday tomorrow, I'm reposting this story in hope that it encourages and inspires you in your fight…

“White Brows”, my journey through stage 4 melanoma by Warren Galinat (September 18, 2008)

I am 55 years old. My parents are of German and Irish heritage. I was born with very blonde hair and light skin tones. We are a middle class, well-educated, hard working family. My dad graduated with an engineering degree from M.I.T. My grandfather oversaw carpet-manufacturing plants in the south. I’ve got two brothers who live in the northeast. Wayne is a financial business owner, and Brian is the orthopedic surgeon. I’ve lived in south Florida for the last 15 years. I retired near 50 after working almost 25 years as a regional controller for a division of Marriott International. I’m a very proud dad of Jeremy and his younger sister Nicole. Jeremy, now 26, is the corporate finance manager for Wynn Resorts with operations in Las Vegas and Macau, China. Nicole graduated at the top of her class at Stetson University. While giving the commencement speech at graduation, my dad said to me “could you have imagined this?” While choking up slightly I said “absolutely”. She’s an analyst now for Franklin Templeton Investments in Fort Lauderdale, Florida. You may know it as the 22-story glass building that had 821 windows blown out by hurricane Wilma.

I have been a life long surfer. The beach is my favorite spot. When moving to Florida I also became a decent golfer. I had my current house built on the 18th fairway of a golf course. Upon retirement, I surfed each morning and golfed afterwards. Perhaps too much in the sun time for me you might be thinking? Although I had been very healthy for almost fifty years of my life, today I’d agree with that assessment.

My local skin doctor, Tom Connelly, and I became pretty good buddies. He said the money he made cutting and burning non-life threatening skin cancers off me paid his kids way through college. I got smarter at the beach after each doctor visit. I was using more sunscreen, surfing with a cap, and keeping on a t-shirt. No doubt a bit too little and a bit too late!

In June of 2001 things got much more serious as my life with malignant melanoma began. Dr. Connelly performed an excision of a 1.12 mm melanoma in the middle of my back. It wasn’t very big by all standards and the hope was it would not spread. Two years later, September of 2003, I was dealt what we call in poker a “bad beat” hand. I had nothing visible on the skin itself but under it, and a few inches from my first site, I felt the moveable subcutaneous mass. Tom cut the 3.0 cm’s out and sent it to the lab. He called me into the office when getting the results. When it was over he gave me one of those two handed farewell shakes to my right hand. You know what that means. He is a great guy and his skillful work on me is clearly a reason I had a fighting chance for a future. At this point however there was nothing more Tom could do for me.

Upon giving myself a few days to reflect back and do some reading on my future, I told my family and friends. I wasn’t thrilled about doing it either. Nearly everything I read was just dreadful. You feel more sorry for them then you do for yourself.

I should say at this point that upon my retirement from Marriott I made the blunder of declining continuing medical insurance benefits. Believing my excellent health and fitness of the past would remain in the future was a horrible assumption. Fortunately my brother Brian went into high gear after hearing from me. He arranged meetings with some of his doctor buddies, Dr. Conway of Delaware and the highly respected Dr. Michael Mastrangelo of the Jefferson Medical College in Philadelphia. He also arranged for all the scans and lab work that I needed. His most important contribution to my welfare was researching the division of clinical sciences, National Cancer Institute, at the National Institute of Health in Bethesda, Maryland.

On October 29th, 2003 I went to NIH and met Kathy Morton, RN, for a screening appointment for eligibility into one of NIH’s treatment protocols. I would later tell her, when things turned for the worse, I know for a fact that God had chosen her as my angel on earth. She has been there for me every step of the way for nearly five years now. I can’t say enough nice things about her and her professionalism in such a heart-wrenching job. Through the years people have said to me “you know you’re a hero for going through all this for five years because your efforts might save a bunch of others”. I’m no hero; I’m just a survivor. It’s people like Kathy Morton that dedicate themselves to this cause (added to the fact that her son is overseas protecting the future rights of all Americans), who are our real heroes!

The letter from Dr. Steven Rosenberg, M.D., Ph.D. said I met the qualifications. Thank goodness. On November 4, 2003 I signed their paperwork and my journey began.

Step one was the NCI protocol number 6211, “to test the actions of experimental vaccine(s) on the cells in your immune system to determine if it is effective in “turning on” your immune system to fight against your cancer”. The injections under the skin of my thigh came every 3 weeks. The immunizations, along with blood tests, x-rays and scans, took place over one year. You also make friends with the ladies in the Apheresis lab during this time. Here, using the cell-separator machine, some lymphocytes (white blood cells) are removed and tested to see how the peptides are performing. The hope of course is your tumor would not return. Just what the doctor ordered right? Well for me, not exactly.

Fast-forward a couple of years to March 2006. Back in Florida after playing eighteen holes I took a shower and felt something on my back again. Come on, this isn’t fair! It can’t be, can it? I was planning just to go to Dr. Connelly to have him figure out what it was. Probably just a cyst. But I called Kathy Morton and told her about it. She said in an unusually stern voice, “Warren you have to come up here for that”. Geez, I was so hoping I was done with this melanoma cancer.

In the middle of 2006 I was back on the plane heading north. My older brother Wayne lives just off the two major highways to both Baltimore Washington International Airport and NIH. Through all of this he and his wife have made there home mine and gave me transportation to get around. It’s made things so much easier and I sure appreciate them ‘babysitting’ me. Two of Dr. Rosenberg’s surgeons removed my third melanoma inches away from the other two. They also captured and would later grow the tumor killing cells (TIL) that would play a major role in me being here now.

The new scans also revealed a ‘spot’ in my right lung. Horrible news. I’m feeling I’m in deep trouble now. This nasty cancer won’t leave me alone. The scary things I read are now happening to me. It’s hard not to scream out a string of ‘F bombs’ and ‘Why me’s’ but what’s the use? It’s pointless right?

Shortly it is decided that I should be admitted into NIH as an inpatient on 3NW of the sparkling, nearly new Mark Hatfield Clinical Research Center. The huge center atrium with halls of rooms circling it up for several stories reminds you of a first class Marriott Hotel. The service provided by the doctors and nursing staff is second to none. I’m not a spokesman for NIH but I highly suggest you contact them should the need ever arise. Knowing I did not have, and could no longer acquire health insurance with stage four cancer, they have never asked me for a dime. My accumulated bills would surely exceed six figures, a debt I could never payback. To say that I’m very grateful is an understatement!

My first round of Interleukin-2 began flowing into my veins in June of 2006. It’s the opening step preferred by NIH when you get to my stage. I did eight rounds of it in one week, got a week off, and returned for eight more. The going in part is simple. They don’t tell you too much about what happens to some of us afterward. It totally crushed me for days. This man-made HDIL-2 ‘juice’ is the nastiest thing ever put in a bottle, in my opinion. After recovering for another full week at Wayne’s house, I got three weeks in Florida to think about coming back to do it all over again. I did it. The final results came back, no tumor regression at all. Now I am in for a real struggle.

Things are now moving rapidly. Dr. Rosenberg recommends number 06-C-0136. Weird how one seems to remember study numbers. My memory is horrible but I still can’t get this number out of my mind. This is the big one. A ’Phase II Study Using a Myeloablative Lymphocyte Depleting Regimen of Chemotherapy and Intensive Total Body Irradiation followed by Infusion of Tumor Reactive Lymphocytes and Reconstitution with CD34+ Stem Cells in Metastatic Melanoma’. It’s more than a mouthful.

My doctor brother had his own ideas and we schedule a meeting with Kathy Morton and Dr. Rosenberg. You see Brian is a surgeon and all surgeons favor using their skill, the knife, best. While in a room on 3NW, Dr. Rosenberg explains to us that cutting the lung tumor out is possible but would not ‘solve’ the issue in his opinion. He favored the research study as a more complete approach that just might eliminate the tumor as well as ‘possible lingering microscopic melanoma’ previously undetected in my body. Perhaps a full lifetime cure! To do nothing at all gave me a life expectancy median of just five months. Brian was now convinced and I was totally sold on it.

Dr. Rosenberg has devoted most of his adult life to research, science, and helping people with melanoma. His PhD is from Harvard. I believe he has been with NIH for thirty-five years. He is without a doubt the best there is. Following our meeting my brother Brian said to me “you can just see the passion in his eyes to beat this”. His theory behind this clinical trial is that capturing/growing the tumor-fighting cells taken from a melanoma tumor can more effectively fight melanoma when a patient’s immune system is suppressed and thus can’t attack them before they do enough good. Previously he found some success without the intensified full-body radiation but their final results failed to satisfy him.

I was admitted again on October 11, 2006. I had to pass a series of tests and produce enough stem cells to be able to proceed. For five days I got the filgrastim shots twice a day to pump up my white blood cell counts. The Echo, eye and dental consult, and PFT’s (breathing test) all proved to be without any issue. My stem cell count was among the highest achieved. Following a visit to the radiation professionals, and the placement of a Neo-Star catheter in my chest, I was all set to proceed.

My overseeing physician, Dr. Sid Kerkar, gave me one week off before Protocol Number 06-C-0136 would attempt to save my life. I would be the 6th patient in the country to be enrolled in this study.

The two chemotherapy medicines began dripping into my blood stream via the IV chest catheter on October 26th, 2006. The ‘real deal’ starts now. A lot of things go through your mind. First and foremost, your family and friends. Then all kinds of stuff if you let it in. You need ‘brain control’ to keep things calm, and good sleep is a requirement for your mental health. I have been able to take what’s dealt to me in life. A whiner, I’m not. Nor am I a social butterfly. I stick pretty much to myself. I told everyone not to visit me during this. I knew pretty much what was coming and didn’t want them to see me in misery, hair falling out, and hooked up to 4 wires and 6 fluid bags hung off a rolling steel pole. It’s just not my style. I knew they would pity me, go home and have it ruin their day or week. No thanks. I’ll suck it up. In retrospect I had no clue. The entire thing hit me like a Mack truck. I think us skinny guys really get stung the hardest, especially by the new, higher dose full-body radiation that follows.

On the fifth and final day of chemotherapy I was wheeled down to begin the total body irradiation (TBI). In the lead-walled room I received two treatments a day for three days. There is no pain from this. The completed, combined treatments take three days to eliminate my immune system. You have to be careful not to cut yourself and keep your immediate environment extra clean during this time. November 2nd, 2006 I was given my tumor fighting cells (TIL) back. They had now grown in the billions. They arrive in one bottle. It is special moment for everyone involved. It flows for about thirty minutes. There can be side effects and several staff members keep a close eye on you. It went well.

Remember the nasty HDIL-2 I got several months ago? Well here comes 10 more rounds over the next several days. Ugh! The day after you receive the TIL cells, your Stem cells (CD34) begin flowing back through your IV. Though my immune system came back slowly, the dangerous side effects possible from the entire regimen were nonexistent.

That being said, the next two weeks in the hospital room were very tough on me. I came into this weighing 163 pounds. I was down to about 128. I’ll skip the details but you can imagine what you go through. I had another week of scheduled hospital confinement left when I asked if I could recover at Wayne’s house. My thoughts were those of a change in my environment would surely help me to eat better and begin to move around. The doctors gave me an out pass. One more blunder on my part. Without the hydration constantly flowing from my IV line I could not possibility maintain even the 128 pounds. My stomach was so small I just couldn’t eat much. I fell to 119 pounds in five days when I asked my brother to please bring be back to NIH.

Back in the hospital, plugged up to the hydration IV again things got better. The NIH nutritionist gave me personal service, outside the normal cafeteria, with food prepared especially for me. She also hand delivered it to me. She was a major factor in my ability to go home, once again, in just five days. Thank you very much!

Today is Groundhog’s Day, February 2nd, 2008. Five years from my original diagnosis. Borrowed time? Perhaps. Cherished time? No doubt about that. Last year on July 4th I got a new name, ‘Grand Pa’. Jeremy’s daughter Juliet is picture perfect! I owe my life to the wonderful people at the National Cancer Institute at the National Institute of Health. Sure, my skin pigment is gone. My hair and eyebrows are back, completely in white. Another NIH survivor pal refers to our new look as “powered donuts”.

I have been going back for blood tests and scans/mri’s every other month. My first visit back made everybody very happy. The ‘CBS 60 minutes’ crew was filming Dr. Rosenberg and I when he gave me the good news. My lung cancer was gone completely. “Cured” he said. Thank you and thank the Lord. I have been clean ever since. There are some current kidney issues, and lingering nerve damage from the awful shingles that came later on. The prescribed medications appear to be helping in both areas.

I would like to thank everyone that took the time to read this. I hope it helps you in some way. The NIH website is http://www.nih.gov. It has current clinical trial information as well as contacts, addresses, and other pertinent information.

In closing I would like to quote the very courageous Jimmy Valvano from his speech during the 1993 ESPN ESPY Awards. He was pleading to his audience to give money for cancer research saying, “it may not save my life, but it may save your children’s life”. Stricken with tumors everywhere he struggled to stand before a huge crowd and the national television audience. As he focused in on the camera he said……

“Don’t ever give up. Don’t ever give up.” “Cancer can take away all my physical abilities. It can not take away my mind, it can not take away my heart, and it can not take away my soul”.

Anything is still possible in my future. I have a good prospective on reality. One thing is for sure. I will never give up. I hope you never do either.