id: a56t54

Help me live with the disease

Help me live with the disease

Opdateringer2

  • paypal: [email protected]

    swedbank : GABRIELĖ ŠIMKŪNAITĖ LT497300010134495591


    [01/12/2024] Update: I am currently off lenalidomide as it has stopped working and the disease has progressed. I am taking the drug everolimus. These drugs are not reimbursed for my diagnosis in Lithuania, so I have to pay €396/month. It was possible to slow down the sudden progression, now the disease is advanced, but stable. Blood values ​​often drop, I do blood tests every week, platelets are needed every 2-3 weeks, erythrocytes every month. I hope the disease will go away someday. Thanks to everyone who contributed.🩵

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Beskrivelse

Hello 🌸 I am from Šiauliai, Lithuania. As of 2018 I have been diagnosed with Hodgkin's lymphoma (nodular sclerosis variant). I've received endless courses of 

chemotherapy (abvd, dhap, gvd, ice),

radiotherapy, 

two bone marrow transplants, 

target therapy (brentuximab), 

monoclonal antibody therapy (nivolumab), 

but even these did not bring a lasting result. I also had to fight graft-versus-host disease, which had affected my skin, lungs, liver, stomach and duodenum. The high number of chemotherapies led to hip joint dysfunction and two hip replacements. I've been fighting this battle for 6 years. At the moment, the disease continues to progress. Platelet and erythrocyte transfusions are often necessary. I'm too weak to work or study. I would be grateful for any support that will help me to travel to Vilnius for treatment, to buy the necessary medicines, in other words to "survive" when I can't work and have nothing to fall back on... At the moment, my disease continues to progress, deauville score 5, medicine doesn't help. I am currently receiving palliative treatment with immunotherapy and chemotherapy. Thank you all for your help on this difficult journey🩷

✨✨✨ 

[30/07/2024] Update: In the spring I had two courses of bendamustine and took lenalidomide. At the moment my blood counts are not recovering, platelets and haemoglobin are dropping. The disease continues to progress. Treatment has been stopped. Symptomatic treatment continues. 

✨✨✨

[30/07/2024] Update: In the spring I had two courses of bendamustine and took lenalidomide. At the moment my blood counts are not recovering, platelets and haemoglobin are dropping. The disease continues to progress. Treatment has been stopped. Symptomatic treatment continues.❤️‍🩹

[10/08/2024] Update: I am currently taking lenalidomide capsules, which cost €170 per month. I also take betaglucans from biocentras.lt. I need 3 boxes per month to feel the result (2040€). I will try to stretch more time in this world.💕

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