Never Too Far From The Beach

"South Florida's changed so much," says Howard Ornstein, who relocated to the Sunshine State with his family in the 1950's. "Time was you could see straight to the water, but with all of the over building and high rise construction, Miami Beach is invisible unless you're on the front row."

The early days of South Florida bring back halcyon memories for Howard and his wife Roselyn. "Parkland is just like a little town, even though it's on the outskirts of Fort Lauderdale. Growing up our kids did everything, tennis, karate, horseback riding, the local football team…everyone knew everyone else."

When his children were younger the family went to Hawaii for a couple of weeks. The kids wanted to see actual big wave surfing and the kids were hooked on boogie boarding. The paradise of South Florida was enjoyed by their relatives from up north would come down and stay for a couple of weeks. "Those were wonderful days," Howard says.

When Howard took over the family automotive business in the 1970's, community bonds were different, and stronger. "We had the most wonderful customers," he says. "One of my customers drove a truck and one day he showed up and said he had a case for me from Maine."

"'What's in it?' I asked him.

"'Maple syrup,' he said." The Ornsteins had plenty of maple syrup for a while, in addition to mango jam, homemade bread, fresh produce, and big boxes filled with locally grown vegetables and fruit. Florida changed so much since the 1970's.

Changing times

"Those were the 1970's, and things were different. You knew people more closely and things were just more connected," Roselyn says, remarking on the fact that Howard's business was a local institution.

The good memories of going to the beach, swimming in the ocean whose waters were so clear you could see all the way to the bottom, nearby bays and inlets teeming with fish; all these and a thousand other memories recall the early days of their life in Florida.

Says Howard: "Now you have to go to the Bahamas if you want that kind of clear water; same for the fishing. Here it's just all fished out. My son has a boat and goes fishing regularly and they haven't caught anything in months. There's still some fishing over in the islands on down off the Keys, but here it's terrible."

The hurricanes over the years have caused so much damage as the climate has worsened that many of the older residents have packed up and left, especially as land prices in recent years made nearby homes in North Carolina and Georgia much more affordably attractive.

Howard and Roselyn met in Gardena, California in 1969. Both of their families were originally from New Jersey, although Howard's family moved to Florida and Roselyn's to California, where she was born. And although their families never knew each other back in Jersey, by an odd coincidence both Howard and Roselyn's sister were delivered by the same doctor. Howard fondly recalls how he and Roselyn used to go out to the pier at Redondo Beach and have dinner when they began dating.

Medical problems and ruling out options

Howard began having pain on the left side of his chest and the area near his left kidney in December, 2007. He underwent evaluation for kidney stones and when none was found, he had a chest x-ray and CT scan. Howard met with the chief of staff at Florida Medical Center in Lauderdale Lakes. The tests revealed a dense mass around the third and fourth ribs with some thickening of the left pleura, a small pleural effusion on the left, and a thickening of the pleura near the diaphragm.

A thoracentesis was performed in January, 2008 and the pleural fluid showed epithelial mesothelioma. Howard was evaluated for potential treatment with pulmonary function testing. When it was suggested that he might be a candidate for surgery, he was referred to the H. Lee Moffitt Cancer Center and Research Institute at the University of South Florida in Tampa.

On March 6, 2008, Howard saw thoracic surgeon Dr. Lary Robinson for a second opinion. Dr. Robinson ordered a new CT scan, which revealed obvious chest wall invasion and pleural thickening at the very base of the diaphragm, which extended down to the abdomen. Howard had no pleural fluid and his lungs were fully expanded. Dr. Robinson concluded that Howard was not a surgical candidate due to the tumor's invasion of the abdomen.

Says Roselyn: "You can't take the first advice they give you. Our first doctors recommended an EPP but we learned that they hadn't done very many. That's when we went to Moffitt and found out he wasn't even a candidate."

Howard adds: "I asked the first surgeon how long he'd been doing the EPP. He had very little experience - seven EPP's, admitting he wouldn't be able to get the cancer out. We met with Lary Robinson and he looked at it and said I wasn't even a candidate. It was too far advanced and it wasn't practical and it wouldn't benefit me at all. You've got to be tough, and you've got to ask the tough questions, being prepared to move on if you're not comfortable with the answers you get."

Current treatment

Howard has just finished a second series of chemotherapeutic treatments. He is scheduled for another CT scan on October 14, 2008 and will then decide what he wants to do because he doesn't want to go back on chemo. He was on Alimta/Carboplatin, which he was told is a little easier on the kidneys than Cisplatin and a little less toxic. It seemed to put the cancer into remission, but the oncologist says that the tumor will come back with a vengeance at some point. It could be six months or it could be a year, but the doctor acknowledges there's no way of knowing. Those few months he was on chemotherapy, "It was terrible. I was nauseous all the time and it felt like I had pneumonia, no energy at all. But that's over with now."

After the last CT scan things looked good and the improvement led the oncologist to take Howard off the chemo. The doctor also saw Howard's quality of life, which had plummeted, and he thought it was advisable to go off the chemo, but monitor the tumor regularly with CT scans. The next scan will be at Moffitt in Tampa; "They have excellent technology and first rate radiologists," says Howard.

Says Roselyn, "The local oncologist, Dr. David Kahn worked very closely with Dr. Simon from Moffitt and has been very helpful and caring throughout this ordeal."

After a while, Howard notes, the chemo loses its effectiveness, and so he's now considering alternative modalities. He has spoken to some meso patients who have been at the ITL clinic in the Bahamas and has heard some positive responses. "It's all anecdotal," he remarks, as "there are no peer reviewed studies or documentation, but it's out of the country and it's expensive to do clinical studies and case histories. A few of the patients have said they're doing very well. It's a life long program where they utilize your immune system to fight the cancer rather than using conventional chemotherapy. They also use immune enhancing materials that you self inject daily that are supposed to keep the cancer at bay. It's not a cure, it's a way to check the spread. I'm a skeptic, but I want to go down there and check it out."

Although Howard's treating pulmonologist feels like it's not a legitimate therapy, Howard and Roselyn are nonetheless willing to try. They have exhausted the available remedies available from conventional therapies. "We checked with M.D. Anderson, Sloan-Kettering, and no one has a good solution to the problem. Some of the Bahamas patients have had good results, so even though it's anecdotal, at this stage of the disease we have to explore every option."

We wish Howard and Roselyn the best and will follow them through out their travels.

*** POSTED OCTOBER 2, 2008 ***

An Update -- 01/27/2009

Recently, Howard and his lovely wife Roselyn visited the ITL Cancer Clinic, located in Freeport, Bahamas. At ITL they offer treatments using state of the art immune therapies to train the patient's own immune system to recognize and destroy tumor tissue.

These alternative cancer treatments are similar to those offered experimentally at some of the world’s leading cancer treatment centers. The major difference is that at ITL no patient receives a placebo. You can find more information about ITL Cancer Clinic at www.immunemedicine.com

For four days the Ornstein’s took in all they could at the clinic and they were also able to spend time talking and visiting with some of the existing patients. They wanted to know all the the "ins and outs" before making their important decision. Howard says he researched this place quite a bit and asked a lot of “hard” questions while he was there. "You must have be very diligent to follow through with this process”.

Howard has a CT scan scheduled for the beginning of February after that he will make a decision to either go back to ITL and start the treatment or not

An Update -- 05/05/2009
Howard and Roselyn have decided not to go back to the ITL clinic in the Bahamas, but instead they have decided to set up an appointment with Dr. Robert Taub in New York City. Howard hopes to see Dr. Taub sometime this summer to discuss new drugs and therapies that may be helpful to all mesothelioma patients.

Howard has been free of this chemotherapy treatments for several months and is, "feeling good" considering what he has been through the past two years. Howard says, "I am taking this challenge one day at a time".

Howard is always looking into the future to see what possibilities are available to him. He really enjoys reading the MARF website as well as Mesothel.com to get up to date information about mesothelioma and its treatments.

He says, "it is important for us to stay on top of the new discoveries in medicine connected to mesothelioma”.

Right now he is looking forward to a sunny summer with his family and friends.

He and Roselyn are awaiting the arrival of their second grandchild very soon. Their four year old grandchild has been spending a lot of quality time with them preparing for a new brother or sister.

An Update -- 10/6/09

Howard would have made a great detective. He and Roselyn have left no stone unturned in their effort to fight the good fight against Mesothelioma.

• Chemotherapy did a good job for awhile, but the Ornsteins were always on the look out for new treatments.
• Earlier in the year they visited the ITL clinic in the Bahamas.
• They visited with Dr. Taub over the summer.
• Howard took supplements made from asian mushrooms that he says, "help slow the progression of the disease". Howard also stated, "you have to be in the right frame of mind".
• He is in that frame of mind and has a pretty accomplice to help him enjoy it.

Howard is feeling great and enjoying the fall in Florida with his wife and family. The newest member of the family is little Jena, 3 months old and she has already stolen the hearts of grandma and grandpa Ornstein. Their 4-year old grandchild is "smart as whip", reports Roselyn. Surronded by family that loves him, Howard is living life to the fullest.

An Update -- 5/11/10

The biggest struggle Howard has these days is keeping the ducks out of his pool and the squirrels off his patio. His mesothelioma is relatively stable. His last CT scan showed a small movement in the cancer, however his doctor told him it was "nothing serious."

Howard will meet with his local oncologist next week to discuss in detail the latest CT scan. Howard's appetite remians the same - he cleans his plate. He also tries to exercise daily in addition to some meditation and prayer. He has a bit less energy that say a year ago, but reveals "you get used to it."

Howard has been in touch with Paul Douglas and is amazed at his longevity since his diagnosis.

We will keep our fingers crossed and keep hoping that Howard's biggest worry is skimming the duck feather from his pool.

An Update -- 10/18/10

Two years and still going strong! As we mentioned in May, a CT scan showed a mild progression of the mesothelioma. After consulting with his oncologist, Howard went back on chemotherapy. He has completed two cycles of Alimta with Carboplatin.

"I feel good, just a bit tired sometimes. My appetite is still good and Roselyn makes sure I clean my plate.

After his third chemotherapy treatment, Howard will undergo a CT scan and be evaluated for any further treatments.

Way to go Howard! Keep up the good work.