Just diagnosed with Chronic NK Cell Leukemia. Please help my daughter

Posted by puser @puser, Feb 9 4:47pm

Hello – My daughter was just diagnosed with Crhonic NK Cell Leukemia. She was a healthy athlete so the news came as a shock for our family. I have been doing google searches on the decease and found that it is a very rare disorder and found more in Asian populate which we she is. Is this the right forum to get guidance on NK Cell Leukemia. Is NK Cell considered a sub type of CLL. She lives in NC and is currently seeing a specialist and is being treated with an immune suppressant similar to what's used to treat rheumatoid She is currently in a hospital with a flu with an extremely low white blood cells count. Does May clinic have specialist for NK Cell Leukemia ? Who can I reach out to for advice on getting the most effective treatment for her. Please help.

Liked by swift

Hi @puser and welcome to Connect. That must be so frightening to gut-wrenching to see this diagnosis come to your daughter.

@pokeyspride2002, @survivorjan, @robbhiller, @bflattenor, and @81ue, have all talked about different forms of leukemia and may be able to share their experiences with what treatments they received.

I also wanted to share that if you would like to make an appointment at Mayo Clinic, please call one of our appointment offices. You can also request an appointment online. The contact information for Minnesota, Arizona and Florida can be found here: http://mayocl.in/1mtmR63
The representatives would be able to assist you in seeing if Mayo had a specialist for this form of leukemia.

Back to you @puser, how is your daughter feeling? How are her flu symptoms? On another note, how are you holding up?

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Hi Ethan, thank you for your reply and for all the information. I will check it out. My daughter is still in the hospital getting blood, iv and being monitored. I am so worried of the serious infection. Hopefully she will be able to bounce back soon.

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Hello @puser, I'd like to add my welcome to Ethan's. From what I was able to find, NK-cell leukemia is treated closer to T cell large granular lymphocytic leukemia. It looks as though there are a few different types NK-cell leukemia's, chronic and aggressive, and chronic has the more favorable prognosis. It seems as though they can also be referred to as NK-cell lymphoma's as well. There are many subtypes in blood cancers. @puser, have you learned more details about your daughter's NK-cell cancer? Is the immune suppressant step one or the main course of current treatment?

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@JustinMcClanahan

Hello @puser, I'd like to add my welcome to Ethan's. From what I was able to find, NK-cell leukemia is treated closer to T cell large granular lymphocytic leukemia. It looks as though there are a few different types NK-cell leukemia's, chronic and aggressive, and chronic has the more favorable prognosis. It seems as though they can also be referred to as NK-cell lymphoma's as well. There are many subtypes in blood cancers. @puser, have you learned more details about your daughter's NK-cell cancer? Is the immune suppressant step one or the main course of current treatment?

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Hi Justin – thanks for replying. I did some reading on it on the web but didnt understand the medical details of it. Thanks for clarifying that it is related to T-cell leukemia than CLL. I missed that. I think current treatment is the 1st step treatment. it s hard to tell as when it was first found out in the blood test when she went to ED for high fever, shr was referred to a specialist in a big hospital. she only got to see him once. the next to emergency visits resulting in a couple if night stays in the hospital from the flu, she only see some one from his team.

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I would also like to add that my misunderstanding that NK-cell leukemia is related to CLL was what led me to post on this forum. Is there another forum that is more related to NK-cell type (i.e T-cell LGL) ?
Since the decease is pretty rare, I am looking for a referral to an oncologist or a practice specializing in NK-cell leukemia. Does anyone have any information on that ? Thanks

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@puser

I would also like to add that my misunderstanding that NK-cell leukemia is related to CLL was what led me to post on this forum. Is there another forum that is more related to NK-cell type (i.e T-cell LGL) ?
Since the decease is pretty rare, I am looking for a referral to an oncologist or a practice specializing in NK-cell leukemia. Does anyone have any information on that ? Thanks

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@puser, if you are looking for a specialist, you could explore the appointment process with Mayo Clinic, http://mayocl.in/1mtmR63. Appointments are not guaranteed as it depends on availability and whether or not Mayo Clinic providers think they can provide additional treatment to what your daughter is already receiving. You could ask your daughter's provider for a referral as well. @puser, does your daughter have additional appointments scheduled, or are you in the searching process?

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@JustinMcClanahan

@puser, if you are looking for a specialist, you could explore the appointment process with Mayo Clinic, http://mayocl.in/1mtmR63. Appointments are not guaranteed as it depends on availability and whether or not Mayo Clinic providers think they can provide additional treatment to what your daughter is already receiving. You could ask your daughter's provider for a referral as well. @puser, does your daughter have additional appointments scheduled, or are you in the searching process?

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I am in the search process so havent set up an appointment yet. Thanks.

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@puser, here is some additional information that may help in your search https://academic.oup.com/annonc/article/25/10/2030/2801271.

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