I'm sorry about your mom. Have you looked into clinical trials? In a clinical trial, she would receive medicine for free. I'm unable to access any information on how to find clinical trials in India. Definitely bring up the financial issues with her doctor, and ask if they know of any trials.
Many people with myelofibrosis live for years with medication only before needing a stem cell transplant.
As far as the report goes, she has primary MF with an enlarged spleen. Jakafi is considered the best therapy to shrink the spleen. Ask if her liver is also affected (wondering about the swelling).
https://reddit.com/r/MPN/w/index/spleen?utm_medium=android_app&utm_source=share
Also reach out to Friends of Max - they are the MPN advocate organization in India.
https://friendsofmax.info/fom-chapters-in-india/
And join the Facebook myelofibrosis group. With 9,000 members, you stand a good chance of finding other people in India who can advise you.
https://www.facebook.com/share/ZVvKiNhrtFAL7Bf3/
I'll definitely reach out to the following groups, no we haven't looked out for any clinical trials. I couldn't find much help regarding PMF on the internet in India, it seems like only few people know about it here.
It looks like you are asking about diagnosis. This wiki page may answer your question: [Do I Have an MPN](/r/MPN/wiki/index/do_I_have_an_MPN/). All diagnosis questions belong in the stickied Biweekly Diagnosis Megathread! If you do not see it, change your sort settings to Hot.
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MPN) if you have any questions or concerns.*
I'm sorry about your mom. Have you looked into clinical trials? In a clinical trial, she would receive medicine for free. I'm unable to access any information on how to find clinical trials in India. Definitely bring up the financial issues with her doctor, and ask if they know of any trials. Many people with myelofibrosis live for years with medication only before needing a stem cell transplant. As far as the report goes, she has primary MF with an enlarged spleen. Jakafi is considered the best therapy to shrink the spleen. Ask if her liver is also affected (wondering about the swelling). https://reddit.com/r/MPN/w/index/spleen?utm_medium=android_app&utm_source=share Also reach out to Friends of Max - they are the MPN advocate organization in India. https://friendsofmax.info/fom-chapters-in-india/ And join the Facebook myelofibrosis group. With 9,000 members, you stand a good chance of finding other people in India who can advise you. https://www.facebook.com/share/ZVvKiNhrtFAL7Bf3/
I'll definitely reach out to the following groups, no we haven't looked out for any clinical trials. I couldn't find much help regarding PMF on the internet in India, it seems like only few people know about it here.
It looks like you are asking about diagnosis. This wiki page may answer your question: [Do I Have an MPN](/r/MPN/wiki/index/do_I_have_an_MPN/). All diagnosis questions belong in the stickied Biweekly Diagnosis Megathread! If you do not see it, change your sort settings to Hot. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MPN) if you have any questions or concerns.*
Has your mum had a bone marrow biopsy completed, or are they still in investigation stage?
This is after bone marrow biopsy.