TOP 10 Things To Do When Diagnosed With MPN (Myeloproliferative Neoplasm)
What you need to do when you are diagnosed with an MPN.
Get and give support
🔟. Have a good support system - When you are first diagnosed, it feels like you are on your own with limited guidance and nothing other than a diagnosis name. Having a great support system is key, whether it be a spouse, sibling, parent, or trusted friend.
9️⃣. Attend a webinar - Join Blood-Cancer.com, Patient Power, Leukemia & Lymphoma Society, MPN Research Foundation, MPN Education Foundation, Voices of MPN, etc. to learn as much as you can about MPNs. Check out the experts' videos on YouTube. PV Reporter and MPN Forum are also fantastic resources.
8️⃣. Donate to research - There is no cure for an MPN other than a stem cell transplant. Donate today if you can.
7️⃣. Join Support Groups - Check out Facebook for all the various support groups, especially MPNs R Us! There are approximately 50 various MPN groups on Facebook and MPN-Net is available via email.
6️⃣. Track your labs - A complete blood count (CBC) is a specific lab you will need to pay attention to. Keep track of your White Blood Cells, Red Blood Cells, Platelets, Hemoglobin, and Hematocrit. It's also important to watch for any trends.
5️⃣. Get a Bone Marrow Biopsy - Everyone that gets an MPN diagnosis should get a baseline bone marrow biopsy (BMB). If you are experiencing different symptoms or your labs are dropping, it’s time for another bone marrow biopsy.
4️⃣. Learn all you can about MPNs - Since we have such rare cancer, it’s very important to educate yourself on everything and anything MPN related.
3️⃣. Be your own advocate - goes along with #4, but an educated patient is an intelligent patient. Your doctor should welcome your knowledge.
2️⃣. Have "ME" time - take time out for yourself. Go to the movies, run a bubble bath, walk around the block. Do something for YOU.
1️⃣. SEE an EXPERT! - Having an expert has many advantages over a local doctor. An expert deals only in MPNs. An expert has attended ASH conferences and has written published papers on MPNs. An expert will look for any anomalies a local may have missed. An expert will re-review past bone marrow biopsies. An expert will perform next-generation sequencing to check for secondary mutations. Our cancer is so rare and unknown, you owe it to yourself to get the best possible care.
What type of blood cancer are you or your loved one diagnosed with?