Medical Background/ History

Hello,

My name is Robert Ian Howard, but please call me Ian. I am a 22 year old male about to turn 23 on November 1st. I have decided to write a blog tracking my daily/ weekly events as a battle a recurrence of stage IV metastatic melanoma that I was originally diagnosed with back in June of 2006.

In June of 2006 I noticed an unusual mole on my right side-burn temple, when I would put my glasses on my head I would notice a lump and upon touching it with my finger I could sometimes get blood on my finger. After talking with my doctor he recommended I see my dermatologist. This is when I went in and did a biopsy to find that indeed I had a stage II malignant melanoma as defined by the Clark level of the tumor. It was from here that I had my first surgery to remove what was left of the mole. Before the mole was removed we ran some nuclear medicine test to determine that the cancer had infected a lymph node in my neck as well. The first surgery therefore removed not only the mole from my temple but also several lymph nodes from my neck. This now put my melanoma to a stage III. In August of 2006 I had a follow-up surgery to remove more lymph nodes from my neck to ensure that all possible cancer had been removed.

In September of 2006 I began an adjuvant therapy know as Interferon Alpha to make sure that the cancer would not come back. Melanoma is the deadliest form of skin cancer and has a very high percentage rate of coming back. By taking the Interferon the doctor said that the risk of the cancer coming back should be postponed by approximately five years. I was on the Interferon for a year in which the first month was an everyday in-house I.V. injection of the drug in a high dose followed up by the next 11 months of an injection to the belly three times a week. Needless to say that after the surgeries and year of Interferon I was feeling fine and there were no more signs of tumors or cancer at all.

Since the end of the Interferon I have seen my doctor four times a year for regular check-ups of blood and lymph nodes, I get a yearly PET Scan in July to check the whole body for any new growth and I see a dermatologist twice a year to inspect for any suspicious moles. Of which I have had several moles removed but none were ever found to be cancerous. Once however was found on my left shoulder that was beginning to become something not so desirable and we not only removed the mole for the biopsy but went back and took an extra two inches out of my shoulder to ensure that nothing of that mole was left over. And at that time I had no worries about it at all, and I'm still not sure if that has anything to do with what I would later find.

So that would bring us to the year 2009 essentially. In the last weekend of January this year my youth group from church and I went down to Luray Caverns in Virginia to have a nice retreat. While we were down there I began to experience a very hard time breathing, I felt like I should be classified as a 65 year old smoker who couldn't catch their breath if they wanted too. I was hesitant to ruin our trip and didn't want to go to the hospital, I'm lucky my stubborn mom and friends dragged me in because this is where they found that I had developed a Pleural effusion on my left lung. With my history of cancer the doctors at Winchester hospital quickly ruled out pneumonia and thought that indeed this could be caused by the Melanoma. So I was given a ride on an ambulance to Johns Hopkins hospital where my oncologist is and on Super Bowl Sunday I had some fluid tapped out of my lung so that I could breathe a bit better. And that Wednesday I had a Pleurodesis surgery performed with the addition of TALC. This means that they removed the rest of the fluid from my lung, in total we removed 7.5 liters of fluid from my left lung, and they put a chemical in between my lung and ribs to make sure that the lung would not collapse again in the event that fluid would try and return.

So after I left the hospital our next step was to begin some form of therapy to get rid of the tumor on my left lung. As this has been going on I have done several treatments, too which the cancer has been non-responsive to them all. I have taken two rounds of Interleukin-2 (IL2) which is the first line of defense taken against stage IV melanoma. I was able to get through 9 of the 14 doses on both treatments. The IL2 made me very sick and I had to spend a week in the hospital twice for those treatments. Once I had finished the two recommended rounds of the IL2 we did a CT scan to find that the cancer was still growing and that the Pleural effusion also came back. So now my doctor moved me to a bio-chemotherapy treatment which included five drugs. Again I did two separate weeks of this treatment and the cancer still grew. The size of the tumor on my left lung has now reached ~20 cms in size. The bio-chemo treatment was also a very harsh week but not as bad as the IL2. Through all of these treatments however I always had my friends and family by my bedside and they certainly helped me get through this hard regiment of drugs. The IL2 and chemo drugs made me very nauseous and sick as a dog and it was always nice to be able to get real food from my friends and family instead of eating the horrible hospital cooked food.

In July I began taking Taxol/ Carbaplatin, an outpatient chemo, because the IL2 and bio-chemotherapy treatments weren't working. This was much better because I no longer required having the Hickman catheter installed in my chest. The Hickman is a set of tubes that they install into your chest and they use this to administer the drugs straight into your bloodstream. I had the Hickman installed when I started the IL2 and when I was done the bio-chemo treatment I had them remove it because I could only shower by covering the Hickman up, it can't get wet. I wanted to be able to get in the pool sometime this summer as well. You also have to flush the Hickman everyday to make sure that it doesn't get clogged up so you have to use heparin, major pain in the butt. So now that I was taking the Taxol/ Carbaplatin I was able to stay out of the week long hospital visits and go to the doctor’s office for a few hours to get my treatment instead. It was two weeks in between each treatment and then two weeks after the second treatment I got a CT scan which was the first scan to show that the tumor had finally stopped growing in my lung. We did two more treatments of the Taxol/ Carbaplatin and again another CT scan. This is where we are now, I have had four treatments of the Taxol/ Carbaplatin.

However, I have hit another road block. There has still been no developing growth in the left lung but I have now developed new nodules in the right lung as well as the brain. On August 29th I was taken to the hospital because I was incoherent and I really couldn't do anything but sleep. When they took me to the hospital they did the CT scan on my chest and that's when they found the right lung growth. They also did a brain MRI, which up to this point I'd already had two that were clear since February, and found that I had tumors on the brain. I spent a few days in the hospital and I have recently just finished ten treatments of radiation to the brain. I am now in the four week waiting process of my next brain MRI to determine if the tumors in the brain were affected by the radiation. Until then my doctor does not want to do anymore chemo treatments. I am also taking steroids to help reduce the swelling of the tumors in the brain and prevent the possibility of having a seizure. Therefore I cannot drive for the next month, which means no work because I have to drive 40 miles each way for work a day.

So that is a history of my treatments and the current state that I am in. Very long winded and may be missing some parts, my memory has been slightly effected by the tumors and what was once very common knowledge on the list of drugs and treatments takes a bit more for me to recall now.

I have also seen several doctors through these past seven months, I have been to Dr. Shore in New York City to get any recommendations on treatments, and unfortunately she wasn't running any trials that I fit into. The problem I've been having is that certain characteristics of my blood and the pleural effusion eliminate many clinical trials that I otherwise would be eligible for. I have also see Dr. Tarhini at the University of Pittsburgh, although he too did not have any available trials he was the Dr. that recommended the Taxol/ Carbaplatin which I eventually did use. And I have also seen a Dr. at the University of Pennsylvania, Dr. Fecher. There I was going to do a clinical trial that seemed promising; however I have also developed tachycardia because the pleural effusion has pushed my heart to the right hand side of my body, so I couldn't do her trial. And I have been to the University of Maryland to speak with Dr. Sausville. And I have been to the National Cancer Institute as well to look into clinical trials that they are offering.

This is a comprehensive background of what I have been through up to this day. I have since been enrolled in open-ended hospice as well, this is especially nice because it allows me to have a nurse come out once a week to check on me and allow me to call them in the middle of the night in the event that I am in pain and do not want to go to the emergency room. The tumor in my left lung has caused me pain since the pleural effusion has reoccurred and when my pain medication doesn't work it can often be very frustrating to deal with a long emergency room wait for trivial things. This way I can be treated in a much swifter manner, even from the comfort of my home.

Thank you for reading my history. Now that you know a bit about my medical background I will next post a mini biography about myself. I want the world to know that having a terminal illness does not mean that you have to stop living and give up on your dreams. I have made it so far and I know that I will make it so much further because of my faith, family, and friends. I am not ever going to give up and I love and live my life to the fullest.

Also, if you are going through, have gone through this and have found and treatments, trials that worked for you please do not hesitate to suggest anything. I would appreciate all of the help that I can get. If you would like to talk about anything that you're going through that would be awesome too. I'm a very outgoing individual and I'm always willing to talk.

Have a good day,
Ian