Connect
← Return to Jak 2 and Waldenstrom's Macroglobulinemia
Discussion
Jak 2 and Waldenstrom's Macroglobulinemia
Blood Cancers & Disorders | Last Active: Mar 10, 2021 | Replies (23)Comment receiving replies
Hello @janemichele, welcome to Connect. It seems as though you have already done your research, but have you phoned the Rochester appointment office to ask these same questions? The appointment coordinators are the best resource for answering these types of questions in more detail, https://www.mayoclinic.org/appointments. Here is the contact information for the Insurance & Billing departments at each Mayo Clinic site that may be able to provide even more detail in regards to insurance questions, https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us.
I'd like to also invite @pysullivan and @brewmaster who have talked about a Waldenstrom's diagnosis. Here is another discussion you also may be interested in that focuses on JAK2 mutations, https://connect.mayoclinic.org/discussion/jak2-mutation-effects-and-questions/. @ettap, @apr931, and @chadknudson have all had experience with a JAK2 positive mutation of varying resulting diagnoses.
@janemichele, if you are comfortable sharing, what symptoms are you experiencing with your diagnoses?
Replies to "Hello @janemichele, welcome to Connect. It seems as though you have already done your research, but..."
Hi Justin. Unfortunately, there are few responses regarding my questions about JAK2, Essential Thrombocythemia and Waldromstrom's Macroglobulinemia , most likely because few people have these cancers.
I appreciate all the info available on research studies; however, can you refer me to someone I can consult with directly regarding treatment, survival rates, and staging, given I have two or three rare cancers? I can't even figure out if I have two or three types of cancer. Does anyone on this on this group have an answer? My new doc hasn't provided many answers.
FYI, I just started back on chemo hydroxyurea for jak2 and ET, I don't know the effect of this chemo drug on waldromstrom's. Anyone know?
Thank you.
Regarding becoming a patient of mayo clinic, I am out of luck since I have medicaid.
Connect
Hi again. Thank you for the information. I called the mayo clinics, but not the finance office yet.
I forgot to mention that I also have Essential Thrombocythemia (ET). I'm not sure which symptoms are associated with which blood cancers. Symptoms are night sweats for 7 years off and on, not due to menopause. And weakness, fatigue, headaches, numbness in hands and feet, muscle cramps off and on, osteoporosis, osteoarthritis, multiple centimeter punched out lyctic lesions on skull, pain in wrists, hands, and fingers. I easily break bones. Clavicle in 2018, vertebrae in 2016.
I have been looking for information on survival rates of people with ET, Waldromstrom's, Jak 2, and MGUS, as well as what to expect in the future regarding illness/symptoms and quality of life. Thank you.