Mark Edward Johnston

Santa Rosa Beach, FL; markedjohnston@gmail.com

1967 / Class of '99 / Type: IgA / Tandem transplants + chemo / Updated: 10/09

(As of 2005:) I am a 38-year-old husband and father of a 9 year old son. My life is full and here is my story.

About one month into a sinus infection, I finally decided to go to the doctor. He gave me a Z-Pak, but also did some blood work and noticed that my Hemocrit levels were low and I was somewhat anemic. He said that in all probability it was as a result of such a bad infection, but referred me to a Hematologist anyway. I went and this first hem-onc was horrible, just felt glands, did not do any more blood work, deemed me healthy and sent me on my way. I thought nothing more about it for a couple of weeks when my original Dr. called to say he had not gotten a report from the hem-onc, so he referred me to another one that he had more confidence in and urged to me to go to see her (Dr. Lisa Larson). She was much more thorough, but not much more concerned.

I had symptoms that could not be easily explained away. I was working 60 hours a week, had a 2 year old son, and had gained 25 lbs in the past couple of years, so the fatigue and back pain had real world causes... certainly not a deadly disease. Dr. Larson told me to follow up in a week to see if the hemocrit numbers had come back up. Well, they did not, so that day she did a bone marrow biopsy (out of the sternum). It was not until the next day that the dx was confirmed through the pathologist. Multiple Myeloma. IgA 3949, M-spike 4.2, focal lesions on sacrum, and spine. Within a week I was being seen by Bart Barlogie and a team of physicians in Little Rock, AR.

I was randomly selected to go into the Total Therapy II protocol. This was a protocol of 3 rounds of chemo, stem cell collection, chemo, auto transplant, chemo, 2nd auto transplant, then one year of follow up chemo. All of this time taking Thalidomide at various doses. The reason for the varying doses was the fact that, at 400 mg every day, I did develop a clot (DVT) in my right calf. Lovenox and a lower dose of 200 mg was the answer to that. The chemos that I took are the ones that are pretty standard fare in today's mm world. VAD, DCEP, Melphalan. During maintenance I was given Interferon A, and Thalidomide at 50 mg every day. Interferon was 3 times a week at 3 mil.

I achieved complete remission after my 2nd transplant, and for 2 years stayed in a near complete remission with only an M-spike showing in my 24 hour urine collection. My IgA stayed between 410 and 594 for this time. Over the past 5 years we have seen a gradual increase in all of these numbers. Currently my IgA is about 985 and my M is 0.8, this is not the greatest news, but honestly I feel fine. Currently am pulsing Dex and taking Thalidomide. I have kept this rising of numbers a secret from my family as the stress that it puts on them, is just magnified when it is returned to me. I have a trip scheduled to Little Rock this August and hopefully will receive a little better news.

It is hard when you have been living with a disease like this for over 7 years. You do not want to talk about it every day, but you sure think about it every day. I have done some amazing things since I have been sick, started my own business, built my own house, won awards for accomplishments in business, gone to Argentina to hunt doves, fished more than any one person should be allowed, made new friends, strengthened all the relationships that I hold dear. Forgave myself and others. Basically took the silver lining of this horrible disease and embraced it.

Why I got this disease, I have but a few guesses. I think that to get MM you have a genetic predisposition to it, and some environmental factors contribute to the progression. I was raised in a suburb of Birmingham, AL. This was not the cleanest city in the world, and I like to play in every creek that I could find as a child, some I am sure were polluted. The first real job I had was working as an insurance repair contractor in my wife's family's business, in this I was exposed daily to burnt residential, industrial and commercial buildings, only sometimes using a respirator... not good either.

The lessons that you learn going down a road with cancer, are truly gifts. What I learned is that what I deemed once as unbearable for a human being to stand alone is, so use any resource available to you to get through. It could be faith, family, friends, doctors, nurses, strangers... or all of them, but embrace and glean all that you can to help yourself. If you do this you will find that you are a mirror and can become someone elses hero or inspiration and this is when your true purpose is revealed, and it all clicks... and allows healing to come to you. I could add 2 dozen funny stories... next time I will tell you about going to a hair clinic with a buddy of mine after a round of chemo to request a full refund... maybe one of the funniest days of my life. Thanks for listening.

May, 2008: It has been a while since I have updated my story. The last couple of years have certainly presented their own challenges, both on and off the “cancer field”. After 15 years of marriage my wife and I are going through a divorce, an amiable one, but a divorce nonetheless. We have decided to share custody of our son, and hope that we can keep his life as normal as possible. That is the big news at home.

As far as the MM goes, it decided to come back and tick me off again, so I decided I was going to kick its ass again. My last trip to Little Rock my IgA had gone to 1130, M Protein to 1.2, and BMB showed 19% plasma cells. After 9.5 years MM has found a way around what I was doing – dex and thalidomide. My Dr. decided to put me on Revlmid and Dex, which I had been wanting to do for a couple of years. After just 8 days on the new treatment the IgA has gone down to 920 the protein has gone down to 8%. I do not notice any new side-effects yet, and hopefully there will be none.

October, 2009: I have been doing GREAT! I went to Little Rock in June of this year and it was the best check up I have had in over 7 years. My numbers had not gone in the right direction for several years, so I have to ask, "what is different?" The only answer that I can come up with is that I have a new girl friend, and my sex life has increased about 200 fold. I know we are not supposed to make recommendations for treatment on here, but I highly recommend this course of action. If it does not work then what have you lost? Keep the faith, email me if you have any questions.