are the stories of patients
With treatment, these courageous people have gained two years or more of good quality life with their families.
Ocular melanoma with no metastases:
In a few days it will be 9 years since liver mets were detected, and I joined the Stage IV club. I have been blessed to feel pretty good, sometimes very good, during this time, and I am still doing well, leading my life, enjoying much, in-between searching for and undergoing treatments.
The treatments I have had, many, many of them, usually stop or slow the progression of the cancer for a while, then the cancer marches on, and so do I to find yet another treatment. I now have mets in: liver, lungs, pancreas, peritoneum, abdominal wall, and chest wall. My current treatment is ipi; I've just had the first infusion. So we'll see.
I feel pretty great, only a little fatigue. But it doesn't stop me from much, am going to a Thanksgiving Day dinner in a little while. I have a lot to be thankful for.
I wish all of you a wonderful Thanksgiving Day, and I send you hope and courage.
Date: Thu, 10 Feb 2011 20:39:29 -0500
I haven't posted in a long while; I needed, and still need, a break from the
The scans (MRI of brain, CT of neck, chest, and abdomen & Pelvis) showed NO
Date: April 2010
Date: Sun, 10 Jun 2007
I have mets in my liver, and all over my peritoneum (the "sac" that holds all the organs in your abdomen. They were discovered by accident when a surgeon attempted to RFA the remaining liver mets. They have not shown up on any scan until recently, they were too small then, but are growing.
These mets seem not to be attached to any other organs, just near them (colon, ovary, etc.). That's why I'm on a systemic treatment (Sutent) rather than one targeting the liver.
I feel really great, at last CT scan my mets are stable, possibly shrinking a bit, no new ones.
Esther may be reached through the Ocu-Mel list.
Date: Sun, 10 Jun 2007
I find it so upsetting that people other than the person who has the disease make judgements about whether that person "should" treat or not treat based on the person's age.
I am 71. I am fighting with every resource I have to stay alive. I have been doing this now for 4 1/2 years, sonce my OM first appeared in my liver, and I'm not done yet. I have had four different courses of treatment, I'm on my fourth now, feel healthy, doing well.
Throughout all this time I have been, and am, enjoying life immensely. I am active, I have friends and family whom I enjoy, I have children and grandchildren who give my life much meaning. In fact, I recently celebrated the birth of my 6th grandchild.
I have encountered those docs who have the attitude described: "There is no cure for this, treatment will only make you feel sick, just enjoy the time you have left." These docs have denied me treatment. Of course, I find other docs.
What infuriates me is that this decision is not theirs to make, it is mine. If I want to fight, they should help me, and my family and friends should not condemn me for it because I am "old."
If a person chooses to not get treatment, that too is their decision, not the docs, not friends and family. My only caveat is that such a decision should be informed by all the contingencies. Some of which are: not all treatments make you feel sick, there is no cure but life can be meaningfully extended, you can be active and enjoy life whileunder treatment, etc.
Sorry to rant, but this issue touches close to home.
Date: Mon, 6 Feb 2006
OK, the feedback of all my scans and laparoscopy is in. That's the comprehsive part, how exact they are is another story. On the whole it's great news, so I'm not complaining.
Sept. 18, 2004
My story is a long one, as befits my current age of 68. Let me say at the outset that I have yet to experience a single symptom, other than compromised vision in one eye.
In 1980, when I was 45 years old, I was diagnosed with choroidal melanoma. My only symptom was a twinkling in my visual field which I had seen for 2 years prior to diagnosis. (I had gone to three ophthalmologists asking about the twinkling, only to be told they didn't see anything, and I shouldn't worry about it. The fourth took his time, looked around corners, and found the melanoma.)
Don't give up pursuing the origin of a symptom.
The recommended treatment at that time was enucleation or removal of the eye. The diagnosing ophthalmologist told me this and asked if it would be alright to schedule it next Thursday. I was overwhelmed, and asked to wait a bit. At this time in my life, I had been married for 19 years, and had three lovely children, a girl, 17, a girl 16, and a boy 12. I was a clinical psychologist who had a satisfying career as both a private practitioner and as Director of the Psychology Department at a children's hospital. Like most of us I had everything to live for. And like most people given a first time diagnosis of cancer, I thought I would die within the year. I was wrong, of course.
With the encouragement of my husband and with his enormous help, we went to first the local university library, then to the vast resources of the Ohio State University Medical School. We got a basic anatomy book of the eye to help us understand the terms of the journal articles I was to read. I read every abstract in the English language of journal articles on uveal melanoma for the previous five years and then the relevant articles themselves. I quickly discovered that enucleation did not have a good track record with regard to subsequent metastasis and longevity. Newer treatments were proton beam, radiation plaque, and photocoagulation (laser). None of these had a long enough track record to make an informed decision. I chose photocoagulation because it seemed the least invasive.
I found a retinologist and researcher at Ohio State University Medical Center, Dr. Fred Davidorf, who is experienced and knowledgeable in OM, and who sat with us til late at night answering every single question. When we still had questions, Dr. Davidorf arranged a consultation with another researcher at a different institution whom he thought might disagree with him. I decided to be treated by Dr. Davidorf, have been seeing him every six months for 24 years, and feel as though we are good friends who have gone through life together.
a doctor who will answer all your questions,
So, in 1980 I had six laser treatments. The tumor shrank. I was followed by Dr. Davidorf at first with examination every three months and with ultra sounds and fluorescein angiography every 6 months. In addition I was followed by a medical oncologist with examinations every six months and with annual CT scans, blood work, chest X-rays, and mammograms. Nothing showed up for 8 years.
Then in 1988 the
ocular tumor started to re-grow. Again, enucleation was recommended.
Again, my husband and I did research. The newer data suggested that
other treatments had about the same survival rate as enucleation. I
chose radiation plaque, and went to Wills Eye Hospital in Philadelphia
to have it done by Dr. Jerry Shields.
The tumor gradually shrank, though in two years I lost usable vision
in that eye. I continued to be followed every three months, then every
six months, by Dr. Davidorf, with regular ultra-sounds, photos, and,
when questionable results appeared, a computer enhanced MRI of the eye.
The tumor gradually shrank, though in two years I lost usable vision in that eye. I continued to be followed every three months, then every six months, by Dr. Davidorf, with regular ultra-sounds, photos, and, when questionable results appeared, a computer enhanced MRI of the eye. All negative.
One needs to keep up frequent regular scans of your eye and your body forever!
I also continued to have annual CT scans of my abdomen and pelvis, mammograms, blood work, and chest X-rays. About 23 years after the initial diagnosis of ocular melanoma, two lesions were noted by CT scan in my liver. Liver function tests were normal. The oncologist suggested watching, and implied they might be something other than mets. Over the course of a year I had four CT scans of the abdomen & pelvis, each of which was reported as lesions unchanged and stable. A PET scan showed negative results (I've had a total now of three PET scans: each was totally negative despite positive biopsies). The oncologist was stymied. He reasoned that if it's not growing, it's not cancer, and he didn't want to subject me to an invasive procedure such as a liver biopsy if it were not necessary. Not knowing how dangerous the situation was, trusting his judgment, and wanting to believe him, I agreed.
Don't accept wait and watch strategies without investigating implications.
In 2003 I noticed
a spot on my knee, which turned out to be cutaneous melanoma. It was not
deep and was excised. The cutaneous melanoma (diagnosed as a primary unrelated
to the OM) was not considered a threat to my life. More CT scans were
done, and the surgeon urged me to have a liver biopsy. This I did and
it confirmed liver metastasis. Though pathologists could not tell if the
metastases were from the eye cancer or from the skin cancer, most doctors
I consulted thought they must be from the eye cancer I had 23 (and maybe
even 26) years prior.
Ocular Melanoma can recur or metastasize many years
So, these mets were my fourth go-round with cancer. It seems to get
easier each time, though it is always very hard. I got the reports of
every CT and MRI I had had and made a chart of the estimated size of
the liver lesions which had been described as stable and unchanged.
I discovered that each time the radiologist had compared the current
scan to the previous scan, and only to that one. When the most recent
was compared to the most remote, it became clear that the lesions were
growing, however slowly.
Ocular Melanoma can recur or metastasize many years after treatment.
So, these mets were my fourth go-round with cancer. It seems to get easier each time, though it is always very hard. I got the reports of every CT and MRI I had had and made a chart of the estimated size of the liver lesions which had been described as stable and unchanged. I discovered that each time the radiologist had compared the current scan to the previous scan, and only to that one. When the most recent was compared to the most remote, it became clear that the lesions were growing, however slowly.
Get copies of all your reports, look at them carefully and ask questions.
I did some more
research, helped by family and friends, (these days the Internet facilitates
a great deal), and found the Ocu-Mel listserv, from which I still receive
wonderful support, information, and advice. The listserv led me to Dr.
Takami Sato, of Thomas Jefferson University Hospital in Philadelphia,
and I was in his immuno-embolization study for several months. I had
a total of seven immuno-embolization treatments. The treatments were
very successful--at this writing my liver lesions are not discernible
on CT scans.
After the seventh treatment, Dr. Sato's plan was to have a laparoscopic
procedure done to look around, do an ultra sound of the liver, take
a biopsy of whatever is there, and burn what is left of the lesions
with radio frequency ablation (RFA). The laparoscopy was done but they
found several 1 mm-sized dark spots in my peritoneum (belly) which,
on biopsy, were determined to be melanoma. The surgeon and the radiologist
decided not to proceed with either the RFA or the ultrasound.
After the seventh treatment, Dr. Sato's plan was to have a laparoscopic procedure done to look around, do an ultra sound of the liver, take a biopsy of whatever is there, and burn what is left of the lesions with radio frequency ablation (RFA). The laparoscopy was done but they found several 1 mm-sized dark spots in my peritoneum (belly) which, on biopsy, were determined to be melanoma. The surgeon and the radiologist decided not to proceed with either the RFA or the ultrasound.
Since there is no standard treatment for OM mets to the peritoneum, Dr. Sato put together a plan derived from treatment for gynecological cancers, such as those of the ovary and fallopian tube. It involves the insertion of a temporary port into my belly so that a high dose of chemo, taxol (paclitaxol), can be infused weekly for 16 weeks. I've found an experienced gynecological oncologist at the Cleveland Clinic who has inserted the port, and I will begin the chemo there next week.
Several times during this odyssey, when stymied by which course of action to take, I simply called a doctor whose name I had seen on pertinent research, and asked for his advice. I had no prior relationship to these people, found their phone numbers on the website of their institution, and got right through. Each one was helpful, kind and courteous.
Do not hesitate to call any expert you think might be helpful.
I have been married for 43 years now. I have seen my three children grow into happy, successful, good, and lovely human beings, and I'm now watching my three wonderful grandchildren grow happily. I am grateful to have had so many years of good health after the initial ocular melanoma, and to still be symptom free. I've been fortunate to find compassionate, learned, and adventurous physicians. I've been lucky to have the generous and strong support of husband, children, extended family, friends, and, of course, the Ocu-Mel listserv fellow travelers. As long as I have the energy, I will continue to fight this disease.
First, this web site saved my husband’s life. Thank you to the site creator! You have honored your father greatly by your example, and what you have done for others.
Here is the story of another patient with ocular melanoma that metastized to his liver in April 2008, was told “not much hope,” and was expected to go home and die.
Fortunately, I am too stubborn to accept this answer. There are clinical trials going on that are working! This web site provides pointers to them. The one that we investigated further is the clinical trial headed by Dr. Sato of the Thomas Jefferson University Hospital .
My husband has just had his first update after two treatments for his liver cancer. The cancer is stabilized, the existing tumors appear dead, no new tumors since treatment started. I will defer to the reader to investigate the details behind Dr. Sato’s approach, but I will tell you this – it works! Additionally, Dr. Sato and his team are so respectful of the patient, so kind, so compassionate. Dr. Sato will give you straight answers, and will also point you in the right direction if his trials are not in YOUR best interest.
We are only 1 hour away from New York City ’s famous cancer institution, and my husband has been a patient there for his ocular cancer for four years now. We chose Thomas Jefferson U. in Philadelphia to treat his liver cancer.
Don’t give up! There are options for you. Wishing you success in your recovery, and a long, healthy life.
Rose W. may be contacted at: email@example.com
Footnote from the Editor: The key is to get treatment early before tumors become extensive. John's oncologist did not recommend a CT scan of the liver, but they read this site and requested it. That is how they discovered the mets, though he had not yet developed symptoms.
Hi, I have been reading my story and realized there is a gap that should be filled in with some good information on the Sir Spheres treatment I had done.
Date: Sept. 16, 2004
My name is Ellen Buchanan and I was diagnosed with ocular melanoma in 1984. At the time, I had no idea how serious my cancer was and was given the choice of enucleation, which my doctor told me in itself could cause the cancer to spread, and the iodine 125 plaque. I decided to go with the plaque and hope for the best. I went back for check ups religiously for 10 years and stopped when my doctor retired. My eye healed well and I had no problems with my vision. I was very lucky.
I remained disease free until January of 1999 when after having severe shoulder pain and some abdominal pain, I went to the doctor thinking I was having a gall bladder attack. After an ultra sound, the doctors found a large, grapefruit sized tumor in my liver. I was shocked to say the least but no one connected the tumor as being melanoma. But the subsequent biopsy proved otherwise. After the tumor was biopsies, I ended up in the hospital with internal bleeding. While there, a melanoma specialist saw me and advised that I have surgery to remove the tumor and then have my eye removed also. Telling me that if I didn't that the cancer cells would just continue spreading to the liver.
It was a little more than I could deal with at the time so I told him that I needed to think about it. I was living alone. My daughter married with two young children and my son in the Air Force. I took this opportunity to turn to God and other methods of self healing. I made drastic changes in my diet and read every book I could on mind/body medicine and cancer and diet, meditation, etc. It was actually one of the most peaceful times in my life. I actually felt I that I could heal myself. My two sisters and mother thought I was nuts. Needless to say they were very unsupportive. I did have the support of my son and of course my three dogs who were always at my side. It was when I was reading a book by Carolyn Myss that she mentioned when faced with cancer, that you should never rule out conventional medicine. Especially when surgery is an option. So, I decided to get a second opinion and was glad I did. She agreed with me that if I was having no problems with my eye that there was no need to have it removed and scheduled me for several tests to rule out metastasis elsewhere.
Fortunately, everything came back negative. It wasn't until I went to see the surgeon, that I was made to realize the fact that I could die from this disease. He gave me my prognosis and told me that they could open me up and find my organs covered with tiny sandpaper sized lesions in which case the would close me back up and that would be that. For the first time I went home and cried. I had no computer so I went to the bookstore and tried desperately to find anything on ocular melanoma. No luck there. Then, after talking to a good friend, I was able to pull myself together and refused to accept that I may only have a 20% chance to live 5 years. I found a book, which I think is a book everyone should read before surgery called, How to Prepare for Surgery and Heal Faster, by Peggy Huddleston. I made myself a tape that was played during my surgery and gave my anesthesiologist a list of affirmations to say while I was under. I had the entire right lobe of my liver removed and was given no blood transfusions. I went home from the hospital a day early and my recovery was quick.
My oncologist in the mean time, found a clinical trial at Thomas Jefferson University Hospital that involved making a vaccine from my own tumor cells. I qualified for the trial and flew back and forth every month from June until September. This was my first introduction to my hero, Dr. Sato. What a wonderful, caring man. My arm was a mass of oozing blisters and very sore but the only other side effect was tiredness. That October I ended up in the hospital with a small bowel obstruction from adhesions from my liver surgery. I ended up having major surgery and three depressing weeks in the hospital with a tube down my nose into my stomach and no food or water. I developed an infection in my abdomen and they had to remove several stitches to let it close and heal on its own. My abdomen looks like a peace sign without the circle and my navel is way off center. LOL. I become pretty depressed after this and felt that I did not want to die like this. Wasting away in a hospital bed.
So, when I had my next scans in January of 2000, a mass showed up in my abdominal area and they wanted to do another biopsy. But I was through with it all. No more tests, doctors, needles, IV's hospitals. That was it for me. I decided I wanted to enjoy what time I had left so I decided to quit my job of 16 years, which I hated anyway, and live off the money from my 401k. Well, I loved not working and I was glad to be free of doctors and tests. I started taking riding lessons, I started taking art classes and drawing again. I bred one of my boxers and she had three adorable puppies and weeks turned into months and months into years. Then I started to run out of money. And my cobra ran out in the fall of 2001. I had to start looking for a job.
I need to go back a little and mention that after my liver surgery in March of 1999. I went out and bought a computer and after doing some research, I found Lil. Her situation was very similar to mine and she encouraged me to join the ocu-mel list. We stayed in touch for the next few years and I met several people on the list that I became friends with. It was Lil and Scott that told me about GM-CSF. At the time, Dr. Sato was the only doctor doing this procedure and thanks to him, my onc. started doing the procedure here in Atlanta at Emory University. I had four embolizations and then a break. I have continued to have them off and on now and as it turns out, they now think that my brain tumor was what they call a benign pituitary adenoma and since my lung lesions have not changed in three years, they feel that it is not melanoma but probably a benign disease or even scar tissue. So, that means that my cancer is still confined to my liver.
In February of this year, they did an embolization with GM-CSF on one tumor (I had three at the time) and then at the end of the month they did RFA which they feel was very successful and think the tumor is pretty much dead. This month I had an embolization on the two other tumors which are still very small and will have scans again in November. I am feeling good and still doing my artwork and enjoying my dogs. In the mean time, I lost my older sister to a two year battle with lung cancer. She had always been a heavy smoker and could never stop. I also lost two of my dogs last winter which took quite a toll on me. So I guess what I am trying to say is that although I believe that stress lowers the immune system, we can't always lead a stress free life. We just need to deal with it the best way we can. I still meditate on a regular basis and work on anger issues. It's a constant battle but I feel it is so important not to hold onto anger. I plan on being around for a long time and am very proud of the fact that I past my 5 year mark since liver metastasis in January. I don't know what my future will hold. I only know that I am thankful for every day that I am still here and pain free and feeling good. I am still struggling financially but am going to make it. I hope my story gives you some inspiration. I have lost a lot of good friends to this disease and they all fought so valiantly. For some reason, I am still here. And I know I have lots of guardian angels on the other side watching over me. And their names and stories are all here.
Love to all,
Update from Ellen
I just wanted to give you an update on me since is has been a little while. I am still doing well and have not had any treatment since August of last year. I recently had a PET scan and my liver mets are still small and stable and have not had any new lesions anywhere else. My onocologist seems satisfied with no treatment and I agree. I am feeling good and enjoying life. I feel truely blessed.
Update from Ellen
I am doing fine and am still having a slight response from sir-tex treatment I had last November. I am feeling good and still only dealing with liver mets. Dr. Sato has told me that he believes that I am one of the longest survivors of this disease with mets. I am now well into my 7th year and going strong. I haven't had time to catch up on some of the posts but I hope that everyone is doing well.
My best to all,
Ellen died in May 2008, over nine years after the diagnosis of her mets to the liver. In her courage and love of life, she was an inspiration to us all.
In November of 2007, on a routine brain MRI, they found a 2-3 cm metastatic brain tumor. Up until that point, Dan has had Brain MRI's every 6 moths, all being negative for any metastases. After many discussions with all physicians and with the brain surgeon, they felt that Gamma Knife was the way to go. Gamma Knife is a high dose of localized radiation to one area, which allows to get the maximum amount of radiation to the tumor only, while not killing the other healthy cells. A one time "quick fix".
Due to the brain tumor, Dan was "kicked" us off the drug, Sutent, and on to another game plan. Dan started on a systemic chemo regimen of carboplatin, taxol, and nexavar with Dr. Sato's guidance. This was done every three weeks, three times and then he was rescanned after 12 weeks. The chemo was an absolute nightmare and completely turned Dan into a different person. He had no appetite, mouth sores, stomach pain, bone pain, and when he would eat, he said he felt even worse afterwards. We tried everyone's suggestions for nutrition, mouth sores, etc. and it helped a little, but doesn't "solve" the symptom. He was 20 lbs lighter, bald, pale, sad, grumpy, and just not "My Dan". It was an unbearable time in both of our lives and hope to not have to relive it again. It hurt so bad to come home to a completely dark house with Dan not moving off the couch and not wanting to communicate at all. We kept telling ourselves, that it was going to be worth it, but in the end, this chemo regimen didn't work.
Dan's liver tumors have almost doubled in size since before he started chemo. Tumors that originally measured 2-3 cm prior to chemo, are now 6-7 cm. It has killed me to watch the chemo "kill" him every day. For obvious reasons, it has made us both miserable and was draining the happiness from Dan. Those months were the most challenging ever: with nausea, vomiting, pain, trying to get him to eat ANYTHING, keep him positive, keeping myself sane, and just try to live somewhat of a normal life. I helped him go thru all that, watched him suffer, for not much of anything. Deep in my heart, I knew that the systemic chemo that he was on, was a long shot and I admit that I didn't have much faith in it, but I thought if Dr. Sato (who is brilliant with OM research) recommended this as our next line of therapy, then we would follow his lead.
We then began the insurance process in hopes of being approved for Sir-Spheres to the liver. While that was getting approved, Dan gave us all a huge scare. One morning, Dan woke up sick, vomiting, and dry heaving again with a severe headache. And it was him who actually wanted to go to ER this time, so I knew he had to be hurting pretty bad. After pain and nausea meds, a CT scan of his head, the physician felt that the tumor and the surrounding edema was bigger and that the best thing to do was to perform a craniotomy and remove it. The physician also said, "Wow, you look pretty good for having such a large tumor!" So, Dan had 2 units of blood, and 4 bags of platelets to get his blood counts back up in order for him to even be able to tolerate the surgery safely.
The day before surgery, the brain surgeon met with us and Dan's parents and told us that Gamma Knife works on about 90% of Melanoma patients and that Dan happened to be one of the "unlucky" patients in the 10%. He said that the tumor (which is now 4 cm)should have been moving the other way: shrinking and not growing. He also said that the likely hood of the cancer coming back to the brain even after the removal of this tumor, is almost a definite "Yes". BUT, if we choose to do entire Brain Radiation after surgery, it would be very unlikely for more tumors to grow in the brain. So, we were all anxious to get the surgery over with.
His surgery went well, but lasted longer than usual. From the first cut to the closing of Dan's brain, it took 4 hours and 15 minutes for just the surgery itself. We had a crowd of family/friends in the waiting room and we were all nervous, waiting and waiting. The brain surgeon said, that the tumor was "hard to get to" but that he was able to get the entire tumor and blood clot that surrounded it. The next morning, we were up, walking laps around the hospital and he was doing so good that the doctor said Dan could be released that night. How often is it, some one goes home the day after brain surgery and back to work one week later?
We are now, 2 weeks out of brain surgery and Dan is doing remarkably well. He has had some nausea, vomiting, stomach and bone pain, but he says it has all been tolerable and controlled with medication. We leave tomorrow to Philly so Dan can be admitted to the hospital for the mapping and testing procedure for the Sir-Spheres to the liver. He will then have 5-7 days of localized radiation to the brain tumor site and then in 3 weeks, the first treatment of Sir-spheres to the liver. He is an amazing strong man and we will continue this journey and fight.
Date: Oct. 19, 2007
In Sept. 2004, my 26 year-old husband, Daniel, began to notice a "blur of vision" in his right eye that went on for about 3 weeks. A week later, we were told he had Ocular Melanoma, and the tumor was too large to be treated other than by enucleation. Daniel had an ultrasound of the liver, CT of chest, abdomen, pelvis, as well as a PET scan which all came back negative. The cancer had not spread, and we were so relieved. After the surgery, we were told "We got it all!"
In Oct. 2005, after a year of follow-up "clean" scans, we were hit by a truck when the doctor said, "The cancer has come back and is in your liver.” We didn't know that because Dan's eye tumor (the largest removed at The Cleveland Clinic) was so large that he was high risk for metastases. Still we thought, no big deal, Dan is young, healthy, vibrant and we will do whatever treatment to "fix it."
Little did we know, there IS no approved treatment and that many physicians hadn't even heard of Ocular Melanoma let alone know what to do with it. Our oncologist at the time suggested a systemic chemo of Decarbazine that I later learned has a less than 5% chance of even helping. Rather than accept the news, and sit back and watch the love of my life die, I did the research on my own. We ended up traveling to Philadelphia to see Dr. Takami Sato, one of the few OM specialists in the WORLD. Dr. Sato's team is amazing!
Since Dec. 2005, Dan has had 10 immuno-embolizations and 6 chemo-embolizations that have kept his liver mets stable. I strongly believe that it was the immuno-embolizations that kept him stable for so long (1 year), but he was also one of the "lucky" ones who got the drug. You either get the drug or a placebo. Either way, you are still cutting off the oxygen supply to the liver mets and can do chemo-embolizations after this, if immuno doesn't work. We did one year of immuno-embolizations to the liver and then 2 tumors grew so we were "kicked off" the clinical trial, and switched to chemo-embolization. Then one year from the liver diagnosis the melanoma had metastasized to his lungs and spine with 3 new tumors. He endured 6 weeks of radiation to the spine, and we were once again looking for other treatment options. Dan's body was starting to show too much toxicity from all the chemo to the liver and from the radiation to the spine. Dan was also on Nexavar to hopefully help fight the cancer systemically, which did not work for him as he continued to have disease progression in the liver and bone.
Dr. Sato was now more concerned with the cancer being throughout Dan's body and not just in the liver, so we had to do something systemic. Dan began yet another one of Dr. Sato's clinical trials which involved an oral pill called Sutent. He has had problems with his white count being too low, so he has been on and off it.
Our most recent news and scans were heartbreaking: the cancer is worse in his spine with more tumors, plus a few tiny ones in his pancreas, and the lung metastases that were being "watched", are larger. Dan has started another round of radiation to his spine per Sato's recommendations and after that will probably do some type of systemic chemo, but we haven't decided on that yet with Dr. Sato. He is to continue the Sutent until after radiation at least. We are getting low on options, but are not giving up!
Dan also currently does an IV bone strengthener, Zometa, once a month. For the past 2 1/2 years we have been traveling monthly out of state for Dan to be a "guinea pig" in any clinical trial that would help him. The disease has spread like wildfire.
This cancer is rare and the statistics are scary. Look for an OCULAR Melanoma specialist, NOT just a Melanoma doctor. Or at least have a Melanoma doctor who knows the difference and is willing to consult with other docs. This is so very important. Go with you gut on your choice of treatments and research, research, research. Traveling across the country is costly and inconvenient, but Dr. Sato is on the cutting edge for this crummy disease.
Definitely look at clinical trials specifically for ocular metastatic melanoma not just skin melanoma. They are two different beasts and not many docs recognize that. Insist on scans, such as CT/MRI at least yearly, or every six months. Pet scans are notorious for false readings. Dan has had 2 PETS, both being negative although it is pretty evident that he has several metastatic lesions. You may also want to request a CT/MRI of chest abdomen and pelvis, brain MRI, and a bone scan. Melanoma loves to lurk to these areas as well. Dan only had liver mets for one year, every other area in the body was clean and then it showed up in the spine and lungs one year later, another year later in pancreas, more in spine, and down into both femurs
Through all of this, my amazing husband has not complained one bit when a new chemo or drug is thrown at him to try. Today, Dan leads a very active life and has not stopped working, playing, or his social life! He still works full time, plays golf, and enjoys watching his beloved Ohio State Buckeyes. I love him dearly and am very blessed that he chose me to be his wife. We will keep fighting and will not give up.
Rebecca A. Indorf can be reached through the Ocu-Mel list.
Dan died in June of 2008, four years after diagnosis of his mets to the liver. He and his beautiful wife Rebecca have been inspirational in their fight against this cancer.
[Peter died in March of 2004, having survived with good quality of life for two years after mets were diagnosed. His brilliance and courage will long be remembered by all who knew him.]
My name is Peter Markens, and I have ocular melanoma that has metastasized to my liver. When this first happened, I was given a death sentence (and a short one at that), and this is my story saying that it ain't necessarily so. I am presently 53 years old, and in September 2000, I was diagnosed with a choroidal melanoma that literally showed up overnight. Within 5 days, my left eye was enucleated by the Drs. Shields at Wills Eye Hospital in Philadelphia. I would recommend them without hesitation. My recovery from the surgery was relatively easy, and I was back to work in a week. Okay, that was probably pushing it, but it did me no harm.
I fully led my life thereafter, not worrying about the cancer, but regularly seeing a local oncologist. Other than being careful about who I might smash into on my left side, things were fine. My golf game actually improved. Well, sort of. After a bout of pneumonia in the Spring of 2002, my oncologist wanted me to get a cat scan of my chest, and that turned out to be pure luck. The CT picked up a small piece of my liver that looked suspicious, and a follow-up MRI showed 25+ lesions (tumors) ranging from 2 mms to 2 cms. My local oncologist (a very nice and caring doctor) told me that the cancer was automatically Stage 4 (the worst) and gave me 6 to 12 months to live. By the way, at this point, let me agree with the point made elsewhere on this Site. Blood tests are not enough. If you have ocular melanoma, INSIST on regular scans of your lungs and abdomen.
After catching my breath, crying with my wife, and being totally disoriented, we started to get educated. We found only a very few options, and we decided to settle on a clinical trial known as immunoembolization offered in Philadelphia by Dr. Takami Sato -- a truly great doctor, not only for his skill, but for his compassion, his not forgetting that we are real people as opposed to a number in his study, and for always being available for questions and consultation. His staff is equally impressive.
Every four weeks, I go into the hospital and have a catheter run from an artery in my groin up to my liver where a substance known as gm-csf is introduced to the liver. Simplistically, what happens is that the gm-csf teaches my blood cells to recognize the cancer cells and go get 'em. Apparently, they don't know enough to do this on their own. Also introduced into the liver is a gel-like substance that encapsulates the tumors and attempts to "suffocate" them by cutting off the supply of oxygen and blood that they feed on. Everyone reacts somewhat differently, but the side effects are not too bad. There is an overnight stay in the hospital, and a day or two later, I am pretty good to get on with my life.
As of this writing (March 2, 2003), I have had eight treatments and number nine is scheduled for four days from now. My cancer is stable, and stable is a very good thing. It has not spread beyond my liver, and the cancer in the liver has not progressed at all. There are many of us who are doing very well under this treatment and a variety of other treatments. Of course, not everyone responds the same way, but there is certainly real hope now that didn't exist even a few short years ago.
In August of last year, I quit my job, because I didn't want to spend the rest of my shortened life working. I traveled to Alaska and the Caribbean, I spent a lot of time reading, praying, meditating, working (I should say playing) at a cancer hospital for kids, doing various healing exercises, joined a drumming group, golfing and generally had a pretty terrific time. Most importantly, I spent time with friends and family including my now 15 month old granddaughter who is a true joy. I believe that all of the above was important to my continuing to be well. But as I kept living and doing well, it came to me that if I was going to live for a while, that I might as well start acting like it, so in January, I went back to work, which I have found to be energizing and, dare I say it, kind of fun.
My wife and I have a big vacation planned for June that we look forward to. We live our lives every day to the best of our ability and have real hope for the future, something that we had none of just a few short months ago. The Ocu-Mel list referred to on this Site has been a huge help and inspiration to us. So if you or a loved one ail from this crummy disease, come join the club that no one wants to be a member of as we warrior on together.
Best to all. Peter
Update August 30, 2003: Peter has just completed his 14th immunoembolization with Dr. Sato. Now the GM-CSF is in combination with Interleukin-2. He and his wife are heading off for more travels in between the next scheduled treatments.
[Lil died on May 13, 2004, having been an inspiration to all who knew her. With treatment, she lived life to the fullest for three years after mets were diagnosed.]
I am Lil and I was diagnosed with ocular melanoma in 1985 at age 27. At the time I was 4 months out from the birth of our 2nd child and also had a 2 year old at home, so no time to be sick! The enucleation was performed at Wills Eye Hospital in Philadelphia and I merrily went on with life, having at first every 6 months scans of my liver, but after 7 or 8 years of "all clear" we stopped doing these.
Then in March of 2001 I discovered a tiny cyst like bump on one breast and the biopsy was positive for melanoma. Further scans revealed 8 lesions to both lobes of the liver as well as a large mass associated with one ovary, something in my hilar (chest cavity) and abdominal cavity. We were overwhelmed with the news and unlikelihood of being able to treat all if any of it.
However, after much research, info gathering and prayer, my husband and I decided to go with a phase one clinical trial that was open to patients with multiple mets, including those outside the liver that was being conducted specifically for ocular mel patients at Thomas Jefferson Hosp. in Philly.
I began a series of monthly hepatic embolizations with GM-CSF, also commonly called "leukine." While the liver mets appeared stable after 8 weeks (2 treatments) the ovarian one was growing rapidly, so we decided to have it surgically addressed, and having that done seemed to tip the scales in favor of my immune system. We started to see shrinkage in the liver mets as well as several sub cutaneous bumps. Also the pathology of tissue removed indicated a systemic immune response in the form of tumor infiltrating T-lymphocytes. In other words, it looked like my body was producing cells that were targeting and attacking the cancer cells!
By September the liver mets were gone, however I had developed a 10 mm. lesion in my brain! This, I should add, was only detected because I requested a brain MRI, typically not done unless a person is experiencing symptoms. Lucky for me we caught it early enough that it was treatable with Gamma Knife, also known as steriotactic surgery (focused gamma radiation). In December, I developed a 2nd brain met, which we caught even sooner because I was now being followed closely with regular scans. This too was successfully treated with the Gamma Knife.
Having gone a couple of months with no sort of systemic treatments whatsoever-the liver mets were gone so no reason to target the liver--I opted for a self injecting "cocktail" of 3 different immune stimulating drugs: the GM-CSF, Interleukin-2 and Interferon-alpha. I began doing this in Dec. 2001 and am still at it 15 months later. We have had to readjust schedules and dosages and recently have cut out the interferon due to low neutrophil counts. Recurrence-wise I have had 2 pea-sized subcutaneous bumps show up this past Dec, both removed via minor surgery.
I would add that my quality of life has been excellent. I am a distance runner and continue with my activities and outdoor pursuits-at a somewhat more leisurely pace. I still workout, hike, climb, horseback ride, you name it. We try to stay current on new research developments and stay one step ahead for when the next crisis arises and always, always keep up with follow-up scans.
UPDATE FROM LIL:
Mon, 18 Aug 2003 17:27:13 -0600
Since then, I have competed in the race a half dozen times, but never before was it so meaningful as last weekend, because after "going metastatic" in 2001, I never thought I would run it again. And this time I had tremendous purpose because I was running to support melanoma research.
were friends and family all over the mountain that would appear unexpectedly
and give me a little adrenalin boost just when I needed it. I ran well
through the first 7 miles and the10,500 ft mark. From then on I ran
out of steam and it was mostly walking the remaining 6 miles to the
summit topping over 14,000 ft. But I still got in 12 min ahead of my
I think my immune system is still on a high from all of this! Meanwhile I am still awaiting PET scan results from last week. They ran me through for a 2nd scan which usually doesn't bode well, but right now I am thinking "mind over Matter." I FEEL good, therefore it won't be anything I can't handle.
With that I send thoughts of strength and hope to all of you. I say there is life after cancer! Keep living!
FROM SCOTT TRIMBOLI
13 May 2004 18:11:53 -0600
Many of you know that ocular melanoma has been part of Lil's life since July 1985. After an enucleation in August of that year, she spent the next 16 years without evidence of disease. In that time, she ran numerous marathons (including a victory at Abingdon, England in 1987), ultra-marathons (100-miles), and other distants events. Lil also enjoyed hiking, snowshoeing, cross country skiing, and riding her horse. Of course her crowning achievement was, and always will be, our three wonderful children: Wendy (cadet at the USAF Academy), Jill (midshipman at the US Naval Academy) and Brendan, a high school student in Colorado Springs. Lil's disease returned in Apr 2001 to her liver and other areas.
We credit the kind, compassionate care of Dr. Takami Sato at Thomas Jefferson University Hospital in Philadelphia for giving her three wonderful years beyond anyone's expectations. Unfortunately, her fight raged into a full-scale battle starting in March 2003. At that time, mets had returned to her liver, pancreas, abdominal lymph nodes, sacral spine and brain. Lil endured a tremendous ordeal as the disease affected her body and as she slowly began to accept her life was nearing its end. She entered hospice care on 30 Apr and with their loving help, we were able to keep her comfortable and manage her pain. Lil and I are some of the original members of the OCU-MEL list, having joined at its establishment in July 2001. She spoke often of how her life was enriched beyond measure through meeting the most inspiring and courageous people on this list. These were her personal heros and they made facing her final journey so much easier for her. It is a great comfort to me personally that today Lil walks together with Margaret Walker, Toby Dachs, Tali Twerskey, Eric Dunham, Jane Zint; our very special friends, Mark Sheldon, Siobahn McDonald, Bobbi Lehrhoff and Peter Markens, and all those I haven't named whom we admired so much...
[Mark died on December 9, 2003, after a valiant fight which gave him two added years of good quality life. He was an extraordinary man, and his story here should be helpful.]
My name is Mark Sheldon. I was originally diagnosed with ocular melanoma in 1988. I was 28 at the time, was in graduate school, and had gone for a simple contact lens exam. The ophthalmologist spotted a suspicious nevus and sent me immediately to a retinologist who followed it for a year. After determining it was growing, I was sent to Dr. Devron Char in San Francisco who treated me with the radioactive plaque therapy. That turned out to be Round One.
I continued to have regular follow up eye exams which showed the original tumor basically shriveling up. My eyesight was significantly diminished due to the radiation and I eventually had to have two cataract surgeries also due to the radiation. But I took it all in stride. In fact, in all those years, I NEVER understood how serious the whole situation potentially was. How could I? I was just a kid out of college just starting on an exciting career path in radio. This was just a localized problem which I had taken care of and put behind me. I certainly never dreamt that such a small growth in the eye could threaten my very life!
Round Two: Eleven years after that surgery, new tumors appeared in the same eye in a different location. It came on very quickly and was doing so much damage that we had to quickly arrange to have the eye enucleated on March 1, 2000. But again, I thought I had paid the price and that now with the offending eye gone, I was finally free of the diminished eyesight and constant eye check ups. I was adjusting to monocular vision quite quickly and was moving on with my normal life again. No one had warned of what might potentially happen.
Round Three began after I visited an oncologist for an unrelated problem. I explained my history and he suggested a series of scans. The first came back clean. But a CT scan in December 2001 showed suspicious lesions in the right lobe of my liver. It took THREE biopsies over the next month to confirm that indeed this was the same ocular melanoma now spread to the liver. I sat in the oncologist's office barely understanding when he said, "there is very little that we can offer you," he said. It just didn't sink in. But being the type of person who doesn't just roll over and play dead, I pushed him for some alternatives. After some research, we came up with two options: Dr. Sato's liver embolization protocol in Philadelphia and Dr. Alexander's liver perfusion surgery at NIH.
Because Dr. Sato said he had just closed the first phase of his study and wouldn't begin the 2nd for a few months and because my oncologist felt the NIH procedure had a better track record, I decided to go with that very invasive procedure. It was an 8 hour surgery which amounted to a liver bypass, clamping off the liver to blood flow while they flooded it with high doses of melphalan. My recovery time was the better part of a month. I had several follow up trips to Bethesda until August 2002 scans showed the disease had continued to progress and so I was released from their study. The procedure had not worked.
So back to Dr. Sato. But again because I had now had the other surgery I was no longer eligible for his study. But I wanted to try the embolization procedure anyway. He was willing but the insurance company wasn't. In fact, when I pushed they dropped me from their coverage completely. A blatantly illegal move on their part but which left me with no insurance and few other medical options. So I refinanced the house and arranged to have Dr. Sato perform the first embolization procedure anyway in Philadelphia. A month later, I arranged to have the same procedure done in my hometown of Denver
In December, some very dear and dedicated friends mounted a huge fundraising concert on my behalf raising enough money to cover the cost of both of those procedures and help me put my financial house back together. It was one of the one of greatest and most humbling experiences of my life.
The next set of scans, however, showed the disease in the liver to be stable but continuing to spread into other areas and my oncologist said we needed a more systemic approach. Two small lesions appeared in the left lobe of my brain and so I had Gamma Knife done in January 2003. I then underwent two rounds of high dose Interleuken-2 treatments requiring two weeklong hospital stays each. The most recent scans show that we were able to knock out the brain mets, but those in the liver and now in the larger abdominal cavity continue to spread. So we haven't found the right treatment yet, but I continue to be hopeful.
In the meantime, I have also been accepted into a study at Hoag Cancer Center in Newport Beach, CA where they are attempted to grow a dendritic vaccine for me from samples of my tumor cells. That will take a while to accomplish but it seemed like a wise backup plan.
And so things go.
I have been thinking about how I've changed or been changed by this experience or challenge. More than anything, cancer has forced me to focus on the things that matter, not to put things off, not to waste time and energy but to "make it count." And that affects everything from "what would I enjoy eating for dinner" to "where do I want to work" and "what city do I want to live in." From the smallest to the largest choices and everything in between. "Should I redecorate now or later?" "Is it time to get back to Minnesota to see friends?" "Should I go back to California to visit family?" It has helped me get my house in order-professionally, financially, personally.
Since the original diagnosis all these years ago, I've had a heightened awareness of these things. It's why I have made the personal and professional choices I have over the years. "If this ever comes back," I thought, "I don't want to have spent my time in places I don't enjoy, doing things I'd rather not be doing." To live an "eyes wide open" existence allows me to avoid the "if only I had..." trap so many seem to fall into. Now with the recurrence I am getting to a point where I have very few worries in that regard. Fewer unresolved issues, fewer unsettled matters, fewer regrets. Most of us put off doing this "tidying up" process until we have to and then they weigh heavily upon us if/when the crisis does come...which it inevitably does for all of us at some point. So I'm grateful that in the midst of the medical crisis and what is turning out to be the fight for my life, I at least can say I haven't squandered the time I've been given. For the most part, of course.
Now, I don't believe I'm dying tomorrow, but by having this heightened awareness of my own mortality, I am trying to live a more productive life now. And though I certainly would not choose cancer as a preferred life path, the way I am trying to respond to its realities is proving to be pretty positive. Having already labeled the photo albums, organized the journals, and done the will (literally and figuratively), I feel relative peace. And that's a pretty great way...to live!
died in January of 2004. Treatment provided over a year and a half of
good quality life for her. As you can tell from her story, she was a
very special person. We hope this may be of help to others.]
Finally, the "fog" from my brain cleared, and I thought I should call Dr. Shields. Who better to get a recommendation from? I feel that call bought me the time I now have. I was referred to Dr. Takami Sato at Jefferson University Hospital in Philadelphia. He agreed to see me and my tests. To shortened this long story, I am now one of his grateful patients. Not only does he have the technical skill, but he is a compassionate person. His entire staff is the same. He works with an extremely competent group of Interventional Radiologists and technicians. I had 8 immunoembolizations to the liver. My liver mets are now stable, and we are attacking some subcutaneous "bumps" in my abdomen and chest. At home, my husband gives me subcutaneous injections of 3 different immune system meds. During this entire time, I have been able to attend ball games, dance recitals, and go on many family vacations. My quality of life couldn't be better, under the circumstances. My youngest child has mild cerebral palsy and developmental delays and has no idea that Mom is "sick." I am able to help with homework and attend school affairs.
In early December, tests, hospitalizations, and the season gave me the blues. Unfortunately, I have 2 friends fighting breast cancer, and we would talk about our fight. It was supportive, but I longed to discuss "my" cancer with someone. Being a spiritual person, I asked the Universe for some help. In the middle of one sleepless night, I found the OCU-MEL listserv. My family will tell you what a blessing it has been. The change in my mood was apparent to everyone. I not only have these new online friends, but have met some of them. It is my goal to meet, in person, as many as possible. My other goal is to help as many others as I can.
Thank you for reading my story and thanks to the webmaster for putting up this valuable website.
my name is Melissa. I am 48. I was tentatively diagnosed with choroidal
melanoma in my right eye on December 12, 2002, which was confirmed a
Update on Melissa Sept. 2006: she's still going strong with no mets.
Last updated: February 11, 2011