Posted by: Barbara | January 31, 2008

Johns Hopkins

Today we went to Johns Hopkins Hospital in Baltimore, Maryland to see Dr. Carol Ann Huff who works in conjunction with Dr. Matsui doing stem cell transplants as well as Multiple Myeloma research. The team was highly recommended and are experts in the field of Multiple Myeloma research. We are at the point of decision as to whether to go into the transplant mode or continue with front-line medications. Mario has a more aggressive form of Multiple Myeloma as determined by chromosome changes and a high protein level. His IGA Kappa level was 6,000 while hospitalized and has decreased to 1,700. This level (1,700) has remained the same for 2 months. Therefore, Dr. Dushkin (oncologist) wanted us to see some experts in the field to determine where we go from here.

Dr. Huffwas very professional as well as very personable. She initially asked many questions about Mario’s general health, family history as well as tolerance to the prescribed meds (side effects, etc.) She presented to us the pros and cons of a stem cell transplant. Studies show that the survival rate for both (stem cell transplant and meds) was 98% after 2 years. Studies have also shown that the chromosomes 1P and 1Q as well as chromosome 13 do NOT benefit from transplant. There is at least a 6 month recovery period after transplant as well as risks along the way to recovery. Dr. Huff’s opinion was that Mario would NOT benefit from a traditional stem cell transplant. Instead, her suggestion was to stay on Revlimid and Dex for another 2 months to determine if the IGA protein count will decrease. If the count goes up, she would add Velcade to the meds. There will be additional side effects, but most patients tolerate them well. If the meds stop working after time, there is still the opportunity to do a transplant (auto or sibling). According to Dr. Huff, the number of transplants being done is decreasing and there is more reliance on front-line meds to attain the same results.

We are also going to the University of Maryland Hospital in 2 weeks to get another opinion from Dr. Badros who is a proponent of stem cell transplants. Then, it is left up to us to make the final decision. Any comments or suggestions would be appreciated. We will try to keep up with the blog in a timely manner and we thank ALL of you for your continued support. Keep the prayers coming…………….


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