Tag Archives: Myelodysplastic Syndrome

Living With…Episode 028 Tom Coccagna Health Update

cropped-IMG_77312.jpeg

Health Update

Welcome to the show everyone! I hope you are all well!
Usually, I would be introducing my guest right now, but we had some technical difficulties with Skype and had to reschedule the interview. That interview should be coming up soon, probably in the next few weeks. I thought this would be a good time to give you all an update on my health.
If you’re new to the show, I’ve been fighting myelodysplastic syndrome (MDS), a bone marrow failure disease for several years. There are many manifestations of MDS, the one I have is called refractory anemia with ringed sideroblasts. This is one of the better forms to have, if you have to have MDS. I always found that interesting, when doctors say that after they tell you have cancer. I guess there’s some need to look on the brighter side of things. Well, you have cancer, but its the good kind of cancer.
Unfortunately, the disease has progressed and I have tried several options such as high doses of vitamin B6, which didn’t work, Darbepoetin alfa, which according to Wikepedia is a synthetic form of erythropoietin that stimulates erythropoiesis (the production of red blood cells). Unfortunately, it didn’t work either.
My hematologist decided to give me high doses of chloroquine, an antimalarial drug. That’s right, you take to it prevent malaria & to combat it if you are unlucky to contract the disease. I did respond to the chloroquine for a short time in conjunction with the Darbepoetin alfa. I also, experienced some side effects, including strange dreams (don’t ask), itchy skin (again, don’t ask), bleached out hair (you can ask about the hair, I had many compliments & even more strange looks), and I had to be monitored closely for retinopathy, as long term use can damage the retina. Cardiac toxicity is also possible, but I didn’t seem to have any problems there. I did find it interesting that under the reported side effects, it was indicated that only two individuals required heart transplants and this was considered rare. That’s a bit frightening in my opinion! The good news is, I didn’t catch malaria.
My red & white cells continued to drop, so I was referred to an MDS specialist at Columbia University in New York. This was a bit of commute from Baltimore, but I was really not in a position to argue. And I really liked the doctor at Columbia. She put me on Lenalidomide, which is derived from thalidomide (a drug used for morning sickness that resulted in infants being born with malformed limbs back in the 1950’s). According to Wikepedia and my insurance company, Lenalidomide costs over $160,000 a year! It has also shown some promise in patients with multiple myeloma.
So, I bet you could have guessed that the Lenalidomide didn’t work either. Not only did it not work, it drove my numbers down considerably. My white cells, red cells and platelets took a big hit. I was transfusion dependent at this point, requiring 2-3 units of packed red blood cells every 2-3 weeks. I had to visit the ER a couple of times during that 12 week period. One visit was over $12,000.
When the Lenalidomide didn’t work, my hematologist at Columbia recommended a drug trial they were doing with Sotatercept, a drug originally developed for osteoporosis-related bone loss. Increases in hemoglobin levels led to trials in patients with anemia. So, I was accepted into the trial and I’m in week 12 of the study. Oh, when, the research study review board saw that I was from Maryland, they wanted to know why I was commuting to New York, when the same study was being conducted at Johns Hopkins? Good question! No one told me! Fortunately, I was able to transfer to the Hopkins location and my commute is about 20 minutes instead of 3 1/2 hours. My hematologist seems to think I’m responding to the drug, so I’m keeping my fingers crossed. I’ve only needed one transfusion since starting the trial!
The next couple of weeks are going to be a bit busy. We are moving my youngest daughter to the University of Tampa, where she will play lacrosse for the Spartans and we will be taking some vacation time, as well. So, I will be taking a little time off from the podcast. Future interviews with inspirational people will be coming up in the fall.
If you like what you hear, please tell your friends about the show and if you can, please go to iTunes, subscribe to the show, rate the show, and leave a review. This will help the show and make it more accessible to others.
Thank you so much for listening!

Tom

 

Living With…Episode 022 Benjamin Rubenstein, Ewing’s Sarcoma & Myelodysplasia Survivor

11665428_1028837607127223_786302246726526637_n

The Cancer Slayer

Welcome to the show everyone! I hope you are all well!
My guest today is a speaker and the author of the CancerslayerBlog and two books, TWICE How I Became A Cancer-Slaying Super Man Before I Turned 21, as well as,  Secrets of the Cancer-Slaying Super Man. His work has also been cited by Newsweek and the New York Times.
At the age of 16, he experienced hip pain as a talented tennis player and student living in the suburbs of Washington, DC. Shortly thereafter, he was diagnosed with Ewing’s sarcoma a rare form of cancer, usually found in teenagers and young adults.
“Benjamin believed that he was no Sick Kid but a super-powered hero who had a unique ability to withstand the toxic chemicals of cancer therapy and preserve his healthy cells while zapping the round-celled malignancy that had invaded his body.”
The aggressive treatment he received at the NIH saved his life and he went on to attend the University of Virginia. Unfortunately, a follow-up CBC revealed that his bone marrow was damaged due to all of the treatments he had received. He had myelodysplastic syndrome (MDS), a disease near and dear to my heart.
For the second time he took on cancer’s challenge and won.

Links For This Episode

 

 

Living With…Episode 008 Tara Notrica-Mast Cell Disease Survivor-Many Years of Illness & Misdiagnosis

cropped-April-21-2014-Genzyme-2014-Boston-Marathon-Race-Day-055

 Tara Notrica

Running For Rare Diseases

My guest today has endured a long journey of many years of illness and misdiagnosis.
Years of anaphylactic episodes for which she was treated episodically and sent on her way.
She saw countless specialists including, Allergists/Immunologists, Dermatologists, Rheumatologists, Gastroenterologists, Cardiologists, Endocrinologistics, Pulmonologists, Hematologists, Oncologists, Neurologists, Infectious Disease Specialists, and Clinical Nutritionists.
She was seen at some of the premiere medical institutions in the country and there were countless diagnoses & subsequent treatments. Being diagnosed with Severe Clinical Depression and Chronic Fatigue Syndrome angered her most.
Finally, in March 2011, after countless hours of diligent research, with her husband, she found a doctor who was a Mast Cell Disease expert. On April 1, 2011, she was diagnosed with Mast Cell Disease.
She had a bone marrow biopsy and according to the report, she had the signs /symptoms of myelodysplastic syndrome (MDS).
She continues to search out possible answers & treatment options for her illness & continues to raise awareness levels. She is a patient partner in the “Running for Rare Diseases” program that increases awareness levels of rare diseases and promotes diagnosis for patients.

Links For This Episode