Ryan's Alternative Treatment Fund
Donation protected
As many of you already know, Ryan Barger (my husband) has a rare bone marrow/blood cancer called Primary Myelofibrosis. MF is one of a handful of Myeloproliferative Neoplasms which affect the bone marrow in different ways. In his case, his bone marrow creates way too many platelets and is slowly being replaced by scar tissue, a process called fibrosis. This is a chronic and progressive cancer. Eventually his bone marrow will be unable to produce enough blood cells. This is a cancer that is mainly found in older folks---his diagnosis at the age of 34 was devastating and has given us a lot of uncertainty for the future.
There is no conventional treatment or cure for him at this time. My hope is that this fundraiser may allow him to seek alternative treatment that can improve his quality of life.
His diagnosis in 2011 explained why he has felt unwell since he was in his twenties. He deals with chronic aches and pains, fatigue, itchy skin, inflammation, chest pains, shortness of breath, and other symptoms on a daily basis. Some days, he wakes up feeling like he was hit by a bus during the night.
Because his bone marrow overproduces platelets, many of the platelets are malformed and don't work correctly--he's at a higher risk for both bleeding and blood clots. In March, he was diagnosed with a blood clot in his calf. He was placed on an anticoagulant injection and after he broke his ankle, a blood clot filter was placed in his vein prior to surgery. The anticoagulant was discontinued after he developed a hematoma in a muscle in his lower back, but once the filter is removed, they will probably prescribe another anticoagulant.
There are very few options to treat Myelofibrosis. A low-dose chemotherapy pill called hydroxyurea is used to kill off blood cells (among other types of cells). He has taken this before, but it leaves him with other symptoms and his specialist in NYC did not continue the med. There are two other drugs sometimes used to reduce platelet counts, but they come with their own handful of risks and side effects, leaving Ryan with just a daily 81mg aspirin each day. He can't take NSAIDs to relieve aches and pains due to the bleeding risk.
The only MF approved drug is called Jakafi (ruxolitinib), which is not a cure. It can help alleviate quality of life symptoms but doesn't prevent or slow the progression of Myelofibrosis. It tends to work for only a certain amount of time so specialists won't prescribe it to Ryan.
There is only one potential cure for MF: stem cell transplant. He is not a candidate for this because he's still considered "low risk" and the benefits would not outweigh the dangers of the intense chemo and transplant.
This leaves Ryan with no real course of treatment, aside from "watch and wait" until something goes wrong. There have been no suggestions on how to improve his symptoms.
Our only solution now is to think outside the box of the regular medical line of thinking.
I am setting up this fund in the hopes that Ryan can see an integrative oncologist who may be able to offer alternative treatments, such as medical marijuana, high dose Vitamin C IV treatments, herbal or dietary guidance, etc. The problem is that most don't take insurance---some of it may be able to be covered via claims once we reach a deductible, but certainly not all of it will be covered.
We would be deeply grateful for any support. We just want Ryan to get some relief from the pain and to be able to live and feel like a normal person again.
Thanks everyone for your consideration and thoughts,
Kara
There is no conventional treatment or cure for him at this time. My hope is that this fundraiser may allow him to seek alternative treatment that can improve his quality of life.
His diagnosis in 2011 explained why he has felt unwell since he was in his twenties. He deals with chronic aches and pains, fatigue, itchy skin, inflammation, chest pains, shortness of breath, and other symptoms on a daily basis. Some days, he wakes up feeling like he was hit by a bus during the night.
Because his bone marrow overproduces platelets, many of the platelets are malformed and don't work correctly--he's at a higher risk for both bleeding and blood clots. In March, he was diagnosed with a blood clot in his calf. He was placed on an anticoagulant injection and after he broke his ankle, a blood clot filter was placed in his vein prior to surgery. The anticoagulant was discontinued after he developed a hematoma in a muscle in his lower back, but once the filter is removed, they will probably prescribe another anticoagulant.
There are very few options to treat Myelofibrosis. A low-dose chemotherapy pill called hydroxyurea is used to kill off blood cells (among other types of cells). He has taken this before, but it leaves him with other symptoms and his specialist in NYC did not continue the med. There are two other drugs sometimes used to reduce platelet counts, but they come with their own handful of risks and side effects, leaving Ryan with just a daily 81mg aspirin each day. He can't take NSAIDs to relieve aches and pains due to the bleeding risk.
The only MF approved drug is called Jakafi (ruxolitinib), which is not a cure. It can help alleviate quality of life symptoms but doesn't prevent or slow the progression of Myelofibrosis. It tends to work for only a certain amount of time so specialists won't prescribe it to Ryan.
There is only one potential cure for MF: stem cell transplant. He is not a candidate for this because he's still considered "low risk" and the benefits would not outweigh the dangers of the intense chemo and transplant.
This leaves Ryan with no real course of treatment, aside from "watch and wait" until something goes wrong. There have been no suggestions on how to improve his symptoms.
Our only solution now is to think outside the box of the regular medical line of thinking.
I am setting up this fund in the hopes that Ryan can see an integrative oncologist who may be able to offer alternative treatments, such as medical marijuana, high dose Vitamin C IV treatments, herbal or dietary guidance, etc. The problem is that most don't take insurance---some of it may be able to be covered via claims once we reach a deductible, but certainly not all of it will be covered.
We would be deeply grateful for any support. We just want Ryan to get some relief from the pain and to be able to live and feel like a normal person again.
Thanks everyone for your consideration and thoughts,
Kara
Organizer
Kara Barger
Organizer
Albany, NY