Diagnosed with hairy cell Leukemia
05-27-2024, 07:46 AM
#1
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Thread Starter
Joined APC: Jan 2016
Position: I fly planes
Posts: 78
Diagnosed with hairy cell Leukemia
Well, never thought this would happen to me. I'm 40, work out 4-5 times a week, eat mostly healthy, always been in great shape. Couple months ago started having random bloody noses and then started bleeding from my gums. Ended up at the ER and admitted for 2 days, a blood transfusion and multiple tests. Bone marrow biopsy came back positive for hairy cell.
Obviously my first goal is to get better but does anyone know anyone who has had a similar diagnosis and gotten their medical back? I'm a little worried because its a type that never is "cured" but 95% of people go into remission for 10 years or more.
Just started at my dream job at a legacy in December too, sucks!
Obviously my first goal is to get better but does anyone know anyone who has had a similar diagnosis and gotten their medical back? I'm a little worried because its a type that never is "cured" but 95% of people go into remission for 10 years or more.
Just started at my dream job at a legacy in December too, sucks!
05-27-2024, 08:12 AM
#2
Prime Minister/Moderator
Joined APC: Jan 2006
Position: Engines Turn Or People Swim
Posts: 39,992
Sorry to hear 
Your legacy union should have resources, reach out to them asap.
Also aviation medical consultants like AMAS would know the lay of the land (they're the service used by ALPA).
Your legacy union should have resources, reach out to them asap.
Also aviation medical consultants like AMAS would know the lay of the land (they're the service used by ALPA).
05-27-2024, 11:43 AM
#3
Perennial Reserve
Joined APC: Jan 2018
Posts: 12,069
It generally responds to treatment with prolonged remissions and it tends to not be either subtly disabling or quickly disabling so it's got that going for it with the FAA. But it's a rare disease and you probably want to get the best hematology-oncology service you can find to deal with it, not the local one or two oncologist medium size city's office. Places like these:
https://health.usnews.com/best-hospitals/rankings/cancer
https://www.mespoir.com/usa/all/hematology/all/hospitals
With treatment by the best specialists and a good result long term remissions are very likely, and that may pass muster with the FAA with good follow-up. But yeah, AMAS or similar is the way to go once you are in remission and the best oncology and/or hematology services recommendations will have more clout with the FAA medical folks than your local MD. They are worth the extra effort all around.
Best of luck to you.
https://health.usnews.com/best-hospitals/rankings/cancer
https://www.mespoir.com/usa/all/hematology/all/hospitals
With treatment by the best specialists and a good result long term remissions are very likely, and that may pass muster with the FAA with good follow-up. But yeah, AMAS or similar is the way to go once you are in remission and the best oncology and/or hematology services recommendations will have more clout with the FAA medical folks than your local MD. They are worth the extra effort all around.
Best of luck to you.
05-27-2024, 03:44 PM
#4
Disinterested Third Party
Joined APC: Jun 2012
Posts: 6,254
Hairy cell leukemia is a chronic lymphotic leukemia (CLL), and the disposition of the FAA medical certificate comes down to individual diagnosis, which involves stage,
It is cited by the Aviation Medical Examiner's Guide: https://www.faa.gov/ame_guide/app_pr...ech/item45/amd
The disposition table (breakdown chart) which details how your particular stage of cancer may be handled is found at: https://www.faa.gov/ame_guide/media/...ispo_table.pdf
With Stage 0-2 and oncology of less than five years, the aviation medical examiner must defer to the FAA, for special issuance. This will require that you're asymptomatic (no symptoms), and treatment of the disease is by observation-only. It requires progress notes from a board-certified oncologist, within 90 days of submitting paperwork to the FAA and deferral of your FAA medical. It will need to include appropriate laboratory work (CBC, beta-2 microglobulin), flow cytometry, any treatment plan moving forward, and completion of the FAA's status sheet (https://www.faa.gov/ame_guide/media/...us_summary.pdf). As noted above, this is something you should step through via AMAS.
A note about AMAS: their job isn't treatment, but streamlining paperwork. They are not AME's, but have a special status with the FAA as advisors (sort of AME-advisors, if you will), and are all experienced flight surgeons who advise you on the necessary paperwork, collect it from you, and submit it to the FAA on your behalf, with their recommendations. They charge an initial consultation fee by email or phone (they'll be very brief), and then a fee for the case, which will typically be about twelve hundred dollars, paid up front (the specifics for your case will be up to them to detail to you). Some expect AMAS to be the secret sauce to get around the system; they don't do that. They process paperwork and advise, without any sugarcoating. They expedite by collecting the paperwork that you send them, making sure it's complete, and then submit it directly to the Federal Flight Surgeon as one packet. The chief advantage of working through them is that it cuts down on or eliminates numerous delays as the FAA asks for more documentation.
This is a process I wouldn't try to navigate on your own; the additional costs are worth the price of admission to ensure everything is done correctly initially, and going forward.
Yours is a rare condition, considered a chronic one, which may be a good candidate for special issuance and restoration of medical privileges. Before you proceed further, I'd contact AMAS for the initial consultation first, such that you can establish a game plan of exams, paperwork, and expectations, and a general timeline for accomplishing everything.
As with all things, your own health must come first, regardless of the FAA outcome.
It is cited by the Aviation Medical Examiner's Guide: https://www.faa.gov/ame_guide/app_pr...ech/item45/amd
The disposition table (breakdown chart) which details how your particular stage of cancer may be handled is found at: https://www.faa.gov/ame_guide/media/...ispo_table.pdf
With Stage 0-2 and oncology of less than five years, the aviation medical examiner must defer to the FAA, for special issuance. This will require that you're asymptomatic (no symptoms), and treatment of the disease is by observation-only. It requires progress notes from a board-certified oncologist, within 90 days of submitting paperwork to the FAA and deferral of your FAA medical. It will need to include appropriate laboratory work (CBC, beta-2 microglobulin), flow cytometry, any treatment plan moving forward, and completion of the FAA's status sheet (https://www.faa.gov/ame_guide/media/...us_summary.pdf). As noted above, this is something you should step through via AMAS.
A note about AMAS: their job isn't treatment, but streamlining paperwork. They are not AME's, but have a special status with the FAA as advisors (sort of AME-advisors, if you will), and are all experienced flight surgeons who advise you on the necessary paperwork, collect it from you, and submit it to the FAA on your behalf, with their recommendations. They charge an initial consultation fee by email or phone (they'll be very brief), and then a fee for the case, which will typically be about twelve hundred dollars, paid up front (the specifics for your case will be up to them to detail to you). Some expect AMAS to be the secret sauce to get around the system; they don't do that. They process paperwork and advise, without any sugarcoating. They expedite by collecting the paperwork that you send them, making sure it's complete, and then submit it directly to the Federal Flight Surgeon as one packet. The chief advantage of working through them is that it cuts down on or eliminates numerous delays as the FAA asks for more documentation.
This is a process I wouldn't try to navigate on your own; the additional costs are worth the price of admission to ensure everything is done correctly initially, and going forward.
Yours is a rare condition, considered a chronic one, which may be a good candidate for special issuance and restoration of medical privileges. Before you proceed further, I'd contact AMAS for the initial consultation first, such that you can establish a game plan of exams, paperwork, and expectations, and a general timeline for accomplishing everything.
As with all things, your own health must come first, regardless of the FAA outcome.
05-28-2024, 12:12 AM
#5
Gets Weekends Off
Joined APC: Apr 2022
Posts: 1,144
Hairy cell leukemia is a chronic lymphotic leukemia (CLL), and the disposition of the FAA medical certificate comes down to individual diagnosis, which involves stage,
It is cited by the Aviation Medical Examiner's Guide: https://www.faa.gov/ame_guide/app_pr...ech/item45/amd
The disposition table (breakdown chart) which details how your particular stage of cancer may be handled is found at: https://www.faa.gov/ame_guide/media/...ispo_table.pdf
With Stage 0-2 and oncology of less than five years, the aviation medical examiner must defer to the FAA, for special issuance. This will require that you're asymptomatic (no symptoms), and treatment of the disease is by observation-only. It requires progress notes from a board-certified oncologist, within 90 days of submitting paperwork to the FAA and deferral of your FAA medical. It will need to include appropriate laboratory work (CBC, beta-2 microglobulin), flow cytometry, any treatment plan moving forward, and completion of the FAA's status sheet (https://www.faa.gov/ame_guide/media/...us_summary.pdf). As noted above, this is something you should step through via AMAS.
A note about AMAS: their job isn't treatment, but streamlining paperwork. They are not AME's, but have a special status with the FAA as advisors (sort of AME-advisors, if you will), and are all experienced flight surgeons who advise you on the necessary paperwork, collect it from you, and submit it to the FAA on your behalf, with their recommendations. They charge an initial consultation fee by email or phone (they'll be very brief), and then a fee for the case, which will typically be about twelve hundred dollars, paid up front (the specifics for your case will be up to them to detail to you). Some expect AMAS to be the secret sauce to get around the system; they don't do that. They process paperwork and advise, without any sugarcoating. They expedite by collecting the paperwork that you send them, making sure it's complete, and then submit it directly to the Federal Flight Surgeon as one packet. The chief advantage of working through them is that it cuts down on or eliminates numerous delays as the FAA asks for more documentation.
This is a process I wouldn't try to navigate on your own; the additional costs are worth the price of admission to ensure everything is done correctly initially, and going forward.
Yours is a rare condition, considered a chronic one, which may be a good candidate for special issuance and restoration of medical privileges. Before you proceed further, I'd contact AMAS for the initial consultation first, such that you can establish a game plan of exams, paperwork, and expectations, and a general timeline for accomplishing everything.
As with all things, your own health must come first, regardless of the FAA outcome.
It is cited by the Aviation Medical Examiner's Guide: https://www.faa.gov/ame_guide/app_pr...ech/item45/amd
The disposition table (breakdown chart) which details how your particular stage of cancer may be handled is found at: https://www.faa.gov/ame_guide/media/...ispo_table.pdf
With Stage 0-2 and oncology of less than five years, the aviation medical examiner must defer to the FAA, for special issuance. This will require that you're asymptomatic (no symptoms), and treatment of the disease is by observation-only. It requires progress notes from a board-certified oncologist, within 90 days of submitting paperwork to the FAA and deferral of your FAA medical. It will need to include appropriate laboratory work (CBC, beta-2 microglobulin), flow cytometry, any treatment plan moving forward, and completion of the FAA's status sheet (https://www.faa.gov/ame_guide/media/...us_summary.pdf). As noted above, this is something you should step through via AMAS.
A note about AMAS: their job isn't treatment, but streamlining paperwork. They are not AME's, but have a special status with the FAA as advisors (sort of AME-advisors, if you will), and are all experienced flight surgeons who advise you on the necessary paperwork, collect it from you, and submit it to the FAA on your behalf, with their recommendations. They charge an initial consultation fee by email or phone (they'll be very brief), and then a fee for the case, which will typically be about twelve hundred dollars, paid up front (the specifics for your case will be up to them to detail to you). Some expect AMAS to be the secret sauce to get around the system; they don't do that. They process paperwork and advise, without any sugarcoating. They expedite by collecting the paperwork that you send them, making sure it's complete, and then submit it directly to the Federal Flight Surgeon as one packet. The chief advantage of working through them is that it cuts down on or eliminates numerous delays as the FAA asks for more documentation.
This is a process I wouldn't try to navigate on your own; the additional costs are worth the price of admission to ensure everything is done correctly initially, and going forward.
Yours is a rare condition, considered a chronic one, which may be a good candidate for special issuance and restoration of medical privileges. Before you proceed further, I'd contact AMAS for the initial consultation first, such that you can establish a game plan of exams, paperwork, and expectations, and a general timeline for accomplishing everything.
As with all things, your own health must come first, regardless of the FAA outcome.
05-28-2024, 10:34 AM
#6
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Thread Starter
Joined APC: Jan 2016
Position: I fly planes
Posts: 78
Thanks for the very detailed response guys. I reached out to ALPA and I will reach out to AMAS as well. I'm currently trying to get an appointment to get treatment at the James Center at Ohio State as it was listed as one of the top for my type of leukemia, I definitely don't want to mess around with random doctors and a rare cancer. It's been a tough few weeks but I know it could always be worse. Just wanna get this treatment started so I can get back on the road to getting in the cockpit again.
05-29-2024, 05:43 AM
#7
Gets Weekends Off
Joined APC: Mar 2015
Posts: 351
Thanks for the very detailed response guys. I reached out to ALPA and I will reach out to AMAS as well. I'm currently trying to get an appointment to get treatment at the James Center at Ohio State as it was listed as one of the top for my type of leukemia, I definitely don't want to mess around with random doctors and a rare cancer. It's been a tough few weeks but I know it could always be worse. Just wanna get this treatment started so I can get back on the road to getting in the cockpit again.
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