Living With…Episode 028 Tom Coccagna Health Update


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.
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Thank you so much for listening!



Living With…Episode 027 Margaret Cahill, Mantle Cell Lymphoma Survivor


Cover of Darkness

Welcome to the show everyone! I hope you are well!
My guest today was diagnosed in December 2012 with Mantle Cell Lymphoma. She underwent chemotherapy, stem cell transplant and subsequent isolation. To cope with her disease and keep in touch with her family and friends, she started the popular blog Under Cover of Darkness-My Journey Through Mantle Cell Lymphoma. She is also the author of the book, Under Cover of Darkness: How I Blogged My Way Through Mantle Cell Lymphoma.
She’s the owner of The Wessex Astrologer, a publisher, distributor and mail order company founded in 1996 in the United Kingdom.
Now to tell us all about her cancer journey, please welcome Margaret Cahill to the show.

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Living With…Episode 026 Debbie Woodbury, Breast Cancer Survivor


Where We Go Now

Welcome to the show everyone! I hope you are all well!
My guest today created the community to keep a supportive community around her always.
Before her breast cancer diagnosis, she says she “survived family dysfunction, being laid off, a cheating boyfriend, miscarriages and infertility”. She says, “It took a cancer diagnosis to get the survivor label”,  but long before she heard the words, YOU HAVE CANCER,  she “was a practiced survivor of life”.
She’s a member of the Oncology Community Advisory Board of the Carol G. Simon Cancer Center at Overlook Medical Center and works with The Connection’s Pathways Women’s Cancer Teaching Project. She is also a volunteer with Cancer Hope Network, offering one-on-one support to cancer patients and family members.
She is a blog contributor to and has contributed to The Huffington Post on mind/body issues and  a monthly contributor at Positively Positive.
She says, one of her greatest joys is meeting other inspired survivors and WWGN members at her workshops and speaking engagements.
She is the author of two books for cancer survivors, You Can Thrive After Treatment and How to Build an Amazing Life After Treatment.
She says, it was surviving cancer that pushed her to “stop thinking about writing and actually sit down to do it”.

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Living With…Episode 025 Davina McNaney, Breast Cancer Survivor


Michigan to New York Run

Welcome to the show everyone! I hope you are all well!
My guest today was a 40-year-old mother of two,  when she was diagnosed with breast cancer in December of 2012. She underwent a double mastectomy and reconstructive surgery shortly after the diagnosis.
Three months prior to her cancer diagnosis, she ran a 40 mile trail race to raise money for a local food bank.
As an avid runner, she decided to raise money and breast cancer awareness by running 470 miles from her current residence in Pinckney, Michigan to Sodus Point, New York, her hometown. The run took two weeks to complete, averaging over 30 miles per day.
She has raised over $20,000 for the Breast Cancer Research Foundation’s research and awareness programs and attributes her survival to early detection and the many advances in breast cancer research.
She says she hopes to inspire others to set goals they believe in, dream big and help others while they are achieving those goals. She also wants to set a positive example for her two daughters and instill in them to never put limits on themselves. And to celebrate her own health by supporting those more severely impacted by breast cancer.

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