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Real members of myITPteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Has anyone been diagnosed after chemoand radiation treatments? Splenectomy worked for anyone? I want this fixed i can't live like this!

A myITPteam Member asked a question 💭
Halethorpe, MD

I tried promaxta months of steroids, immunotherapy nothing worked until n plate shot. Im between 60000 to rarely low 100000s but been at 70 t0 80000 lately and feel so awful and drained all the time! Im sick of this and fighting insurance for a splenectomy to hopefully reverse this b4 my bone marrow is damaged. Im ready to lose my mind and worry about losing my medicaid cause insurance is so high I can barely function to work im freaking out!

1 day ago
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Be the first to react
A myITPteam Member

I need this fixed asap I feel so lost and hopeless

1 day ago
myITPteam

First, take a breath — what you're going through sounds genuinely exhausting, and it makes complete sense to feel overwhelmed. Fighting insurance while managing a chronic condition and worrying about finances is a lot for anyone to carry.

You're not alone in this. Many myITPteam members have shared similar frustrations about Show Full Answer

First, take a breath — what you're going through sounds genuinely exhausting, and it makes complete sense to feel overwhelmed. Fighting insurance while managing a chronic condition and worrying about finances is a lot for anyone to carry.

You're not alone in this. Many myITPteam members have shared similar frustrations about treatments not working and battling insurance for procedures like splenectomy. On the splenectomy question — it has worked for many people with ITP. Research shows around 60% of people who had a splenectomy didn't need medical therapy again afterward. However, it does carry some lifelong risks worth knowing about:

- Increased risk of certain infections
- Permanently raised risk of blood clots

Doctors typically prefer to delay it when possible, but given how many treatments you've already tried, your case sounds like it may genuinely warrant it. Since Nplate has been the only thing that's helped you so far, that's important information your hematologist can use when appealing the insurance denial. A documented history of treatment failures — steroids, Promacta, immunotherapy — is actually strong medical evidence supporting the case for a splenectomy.

Asking your hematologist to write a detailed letter of medical necessity, specifically referencing your treatment history, could really strengthen your insurance appeal. The fatigue and feeling drained you're describing at those platelet levels is real and valid — this isn't just in your head. Keep pushing, keep advocating for yourself, and lean on your care team to fight this battle with you. You deserve to feel better. 💙

1 day ago

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