Jak 2 and waldromstrom Macroglobulemia

Posted by janemichele @janemichele, Tue, Nov 26 10:03am

Hi to all on this group. I was diagnosed with jak 2 and mgus in 2016 and then Waldromstrom Macroglobulinemia(WM) in august 2019. The hematology/oncology doc didn’t test for the WM until 2109. I have many symptoms of both cancers and have had for many years. I am trying to get care via the mayo clinic; however, the scottsdale mayo clinic (15 miles away) doesn’t take medicaid and the rochester clinic only takes patients with Medicaid who reside in States that border Minnesota.

Dilemma:
Given the fact that I have two different categories of blood cancers, would the Mayo Clinic in Minnesota make exceptions to their policy so I can be seen by the experts under my az medicaid?
I have the ability to be in rochester for all appointments. My son lives in minn.
Thank you for any help anyone can offer.

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?

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@JustinMcClanahan

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?

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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.

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Additional symptoms I'm experiencing include: swollen lymph nodes on sides of neck and sore throat over the last 5 weeks, muscle spasms and severe pain in neck and back of head × 2 days, some vomiting, esophogus/upper stomach -increased pain over the last 9 months, tired much of the time, dizziness and light headedness

How do multiple, rare, incurable cancers impact the quality and length of life compared to having just one blood cancer? I haven't yet found anything in the literature on this.
I'm seeing my new doc for the first time since i was tested and diagnosed with waldromstrom's in june 2019. Ive had ET and Jak2 since 2016.

Question: should most people with my situation and symptoms be on treatment and should Ihave a treatment/ care plan even if the hematologist/oncologist doesn't prescribe medication, other than aspirin?

Question: Is acquiring multiple blood cancers common? I want to understand and be informed.
Thank you.

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