ET CALR

[Neghdar73]

hello there,

I was diagnosed with ET positive CALR mutation on october2023,

On August 2023, suddenly my right eye was totally blind for 30 minutes went to the ER immediately and my CBC showed a high platelets caused clot in my eye, the hospital admitted me and started brain and abdomen CT scan showed accidentally a 3.5cm malignant tumor on my right kidney , within a week I had a Nephrectomy , the whole right kidney removal, my platelets remained high so the NGS test and the bone marrow biopsy result was positive for ET with CALR mutation.

Since my platelets was 800 on October they put me on daily Aspirin and started law does Anagrelide 0.5 twice was doubled to 4 tablets daily and a month later 6 tablets daily , unfortunately my platelets are still rising was now it’s 940 and my hematologist decided to change my medicine to Hydroxyurea 500 mg 2 capsules beside 5 Anagrelide daily ,,interferon is not available at my health provider , and I can’t take risk with Hydroxyurea because of my cancer history .. Anyadvice ?

[hunter5582]

Sorry to hear about the multiple medical issues. It does make things more complicated. I am not sure why one of the interferons would not be available at your health provider. While Besremi only has an indication for PV, Pegasys is recognized as a preferred treatment choice for ET. Suggest that you consult with a MPN Specialist about your case and treatment options. mpnforum.com/list-hem./

[Neghdar73 in reply to hunter5582]

Thank you for your quick reply, any recommendations for online consultancy would be great plz help .

[hunter5582 in reply to Neghdar73]

I am not sure where you live, which would have great impact on access to telemedicine if that is what you are seeking.

[Neghdar73 in reply to hunter5582]

thank you very much for your help

[TLJ-1]

It appears that your hematologist is not an expert on MPNs, but hunter5582 has given you a link to several of them. You really need to call one of them – maybe more than one. While no one here can assess and recommend exactly what you need, it does make sense that one of the modified interferons could help. That your health provider does not have interferon available implies that you are unfortunately in the United States. It is certainly available, but your provider doesn't want to pay for it. The only cheap treatment is hydroxyurea, but it is generally pretty effective at getting platelet levels down. Many of us are on HU, some for many years, without the side effect of getting cancer. If you are not genetically disposed towards getting cancer, you and your hematologist or MPN specialist should discuss using HU. Even if you were so unlucky as to have the kidney tumor, it does not mean you will necessarily be disposed to get other cancers. Best of luck to you!

[Neghdar73 in reply to TLJ-1]

indeed totally agree , and thank you for your help

[Lasbrisas1]

I found using Cayenne Pepper brought my Platelets down immensely, plus also opens up ones Arteries, I sprinkle on my OMAD, I do Intermittent fasting. Good Luck and Best Wisges.

[Neghdar73 in reply to Lasbrisas1]

Thank you and my best of health and luck to you too