Ralph Reinholtz was diagnosed with myelodysplastic syndromes (MDS) in 2014. His condition has been stable since 2014 and his treatment currently involves blood work every two to three months and watching for any changes.
What is your diagnosis and how was it discovered?
"I have MDS, which means my bone marrow does not produce enough platelets, red and white blood cells for my body. I went to my internist for a regular, annual physical at which were run the usual blood tests. The results came back less than normal so the tests were run a second time and the result was the same, low platelet, red and white blood cell counts. I was referred to a hematologist/oncologist who did the blood tests again and did a bone marrow biopsy before diagnosing me with MDS in 2014. During the entire time leading up to the diagnosis I felt no symptoms whatsoever."
How did you become aware of the LRF's Patient Education Programs?
"My wife Adrienne and I read the Chicago Tribune every day and one morning she saw an advertisement that the LRF was going to have a Town Hall Meeting and MDS is one of the topics that is going to be discussed. I said let’s call and sign up and see what it’s all about. So we did. That was the first time I learned about LRF and the first meeting we attended was in January, 2018."
Did you find the Town Hall Meeting helpful?
"I thought the Town Hall Meeting was so very informative. The program gives you the most up to date information on what is going on related to different types of blood cancers and you get to listen to other people with the same types of blood cancers you have and through the same experience you’re going through. Of course you don’t want to wish anything on anyone but it is reassuring to know that you’re not going through MDS alone. You get to hear of different types of treatments that are available and you get different ideas that you can discuss with your own doctor. It gives you hope that there is so many dedicated doctors working on treatments and hopefully a cure someday in the future."
How has information you got at an LRF program helped with visits
to your oncologist?
"I have had many conversations with my own doctor about the course of treatment that is available to me if my MDS gets to a point that I will need to begin treatments. But being at the Town Hall Meeting, I was able to ask the panel of doctors a number of my own questions that they answered and I will be able to share with my oncologist as we progress in treating my disease."
Would you recommend the LRF to others?
"I would highly recommend LRF to anyone who has blood cancer or a blood disorder. It gives you a renewed feeling of hope knowing that you are not the only one out there with your problem. There is so much support and also lets you know of other facilities that are available if you need a second opinion about your disease. I also very much appreciate the doctors who give their time to talk to patients at a forum like that. We look forward to attending the Treatment Options for Blood Cancer Patients Conference on May 19."
Any other comments you’d like to share about your experience with the LRF?
"Everyone I met at LRF was so understanding, so nice, so kind and helpful, you leave with a renewed feeling of hope and understanding that there are so many doctors that are working for you to try to make your quality of life better and to give all of us more time with our families and loved ones."