Help Ron Survive Multiple Myeloma
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My partner, Ron Smith, was diagnosed with Multiple Myeloma in 2013. Multiple Myeloma is an incurable, but treatable, blood/bone marrow cancer. It causes bone lesions that eat away at the bone making them very weak and easily breakable. It also affects the ability of the body to create healthy blood cells causing a weakened immune system.
Ron has had many different treatments over the years, including chemo and a stem cell transplant in 2014. His MM relapsed in 2015 and he has gone through every available mainline treatment since then. None have held the disease back for very long, but enabled him to lead a relatively good quality of life.
In February 2018 he was experiencing much pain. A PET scan revealed that the disease was running out of control. He was switched to a new chemo regimen. Another PET scan in May showed us that the new treatment has had no effect and things were much worse. He also started to have a buildup of ammonia from the disease which causes confusion and inability to function. I feared that we were nearing the end of his battle. Ron's oncologist at the VA referred him to a colleague at a multiple myeloma clinic at Mt Sinai Hospital in New York City. It is recommended by anyone who knows Multiple Myeloma to see a specialist but as a VA patient this was not an option previously available to Ron. Dr. Richter at Mt Sinai has given us new hope and a new treatment plan.
Two weeks ago Ron was admitted to the VA to start a new chemo regimen, which includes an "off label" drug. This drug is approved for some leukemia patients but not multiple myeloma. It has, however, been showing great success in multiple myeloma trials. Because a recent bone biopsy showed that the MM has taken over close to 100% of his bone marrow he is going to need a more aggressive treatment to give him hope for a better quality of life and to get healthy enough to qualify for a trial for a new treatment that shows much promise. This treatment involves continuous chemo infusion over several days followed by infusion of his own stem cells which were collected and frozen before his stem cell transplant. This is going to require at least a two week stay at Mt Sinai and much more when he gets into the trial. We are very hopeful that these treatments can give us years together instead of the months we are looking at without the treatments. They also have the potential of GOOD years. Right now he can barely communicate or function.
I have already missed so much work going to appointments and hospital stays and have not been able to work at all over the past 3 weeks. I have been doing a couple of hours a work here and there from home and the hospital, but that is not enough to pay the bills. I'm also going to need to travel back and forth from New York while he is there and afford to stay during his treatment and the upcoming trial. The money I am asking for here will enable me to be with him when he needs me most and still be able to pay the bills and will take so much worry off of us during this trying time. The treatment in NYC is going to happen as soon as the scheduling can be arranged. The trial will happen as soon as he is healthy enough and a slot opens. Please help me to be with him as he needs me now more than ever and I need him.
Ron has had many different treatments over the years, including chemo and a stem cell transplant in 2014. His MM relapsed in 2015 and he has gone through every available mainline treatment since then. None have held the disease back for very long, but enabled him to lead a relatively good quality of life.
In February 2018 he was experiencing much pain. A PET scan revealed that the disease was running out of control. He was switched to a new chemo regimen. Another PET scan in May showed us that the new treatment has had no effect and things were much worse. He also started to have a buildup of ammonia from the disease which causes confusion and inability to function. I feared that we were nearing the end of his battle. Ron's oncologist at the VA referred him to a colleague at a multiple myeloma clinic at Mt Sinai Hospital in New York City. It is recommended by anyone who knows Multiple Myeloma to see a specialist but as a VA patient this was not an option previously available to Ron. Dr. Richter at Mt Sinai has given us new hope and a new treatment plan.
Two weeks ago Ron was admitted to the VA to start a new chemo regimen, which includes an "off label" drug. This drug is approved for some leukemia patients but not multiple myeloma. It has, however, been showing great success in multiple myeloma trials. Because a recent bone biopsy showed that the MM has taken over close to 100% of his bone marrow he is going to need a more aggressive treatment to give him hope for a better quality of life and to get healthy enough to qualify for a trial for a new treatment that shows much promise. This treatment involves continuous chemo infusion over several days followed by infusion of his own stem cells which were collected and frozen before his stem cell transplant. This is going to require at least a two week stay at Mt Sinai and much more when he gets into the trial. We are very hopeful that these treatments can give us years together instead of the months we are looking at without the treatments. They also have the potential of GOOD years. Right now he can barely communicate or function.
I have already missed so much work going to appointments and hospital stays and have not been able to work at all over the past 3 weeks. I have been doing a couple of hours a work here and there from home and the hospital, but that is not enough to pay the bills. I'm also going to need to travel back and forth from New York while he is there and afford to stay during his treatment and the upcoming trial. The money I am asking for here will enable me to be with him when he needs me most and still be able to pay the bills and will take so much worry off of us during this trying time. The treatment in NYC is going to happen as soon as the scheduling can be arranged. The trial will happen as soon as he is healthy enough and a slot opens. Please help me to be with him as he needs me now more than ever and I need him.
Organizer
Debbie Cowell Crowther
Organizer
Ansonia, CT
