Jak 2 and Waldenstrom's Macroglobulinemia

Posted by janemichele @janemichele, Nov 26, 2019

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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Hello Justin. Is it possible to get answers to my questions through your hematologists network at the mayo clinic regarding multiple blood camcers, what to expect and survival time? I can't get any information from my hematologist/oncologist or from any other source. Thank you.

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@janemichele

Hello Justin. Is it possible to get answers to my questions through your hematologists network at the mayo clinic regarding multiple blood camcers, what to expect and survival time? I can't get any information from my hematologist/oncologist or from any other source. Thank you.

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Go to the MDS Research Foundation website and the MPN Research Foundation website. They have some data on life expectancy data on their sites. Stay off You Tube and the internet sites. Good luck.

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@janemichele

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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As far as I know, ET with a positive JAK2 mutation normally suggests you have a high platelet count. I have MDS and MPN. On the MPN side I have ET and MF. Since there is no cure for MPN diseases or MDS diseases absent a stem cell transplant your oncologist or hematologist will treat your symptoms. I had a very high platelet count so I'm on hydroxyurea which is the standard treatment to reduce one's platelet count. I was diagnosed after a bone marrow aspiration, biopsy and a molecular panel. The molecular panel indicates multiple gene mutations and that was the conclusive scientific evidence the Leukemua doctors at Sloan needed to make a definitive diagnosis and a treatment plan. Sloan said there is a 30% chance of mutation to full blown Leukemia at which time they'll discuss a stem cell transplant. The good news is there is 70% chance of no mutation to Leukemia, so just live your best life. Good luck.

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@mjpm2406

As far as I know, ET with a positive JAK2 mutation normally suggests you have a high platelet count. I have MDS and MPN. On the MPN side I have ET and MF. Since there is no cure for MPN diseases or MDS diseases absent a stem cell transplant your oncologist or hematologist will treat your symptoms. I had a very high platelet count so I'm on hydroxyurea which is the standard treatment to reduce one's platelet count. I was diagnosed after a bone marrow aspiration, biopsy and a molecular panel. The molecular panel indicates multiple gene mutations and that was the conclusive scientific evidence the Leukemua doctors at Sloan needed to make a definitive diagnosis and a treatment plan. Sloan said there is a 30% chance of mutation to full blown Leukemia at which time they'll discuss a stem cell transplant. The good news is there is 70% chance of no mutation to Leukemia, so just live your best life. Good luck.

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Thank you for all the informative responses. I appreciate it.

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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?

Jump to this post

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.

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Hi. I asked my hematologist/oncologist which stage I'm in for each cancer and the number of cancers I'm living with (listed below). Here is the answer I received…"There is no staging because it is in the blood".

Can someone tell me if there is staging for waldromstrom Macroglobulinemia, non hodgkins lymphoma, lymphoma, Jak 2, ET and/or Myleoproliferative Disease? The literature I looked at indicates there is staging for WM and essential thrombocythemia, but that a different staging is used for blood cancers. Correct or Incorrect?
THANK YOU. Happy New Year to all.

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There definitely is staging for non Hodgkin's lymphoma, but that's all I know. It's done by biopsy of lymph glands or tumors, and then that determines the treatment. I wish you good luck.

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I had NHL 15 years ago. I don't know if there are many forms of it. I had a radio-immuno-therapy with 2 different Zevalin. One to target the blood cancer cells and one to destroy them. I had rituximab also. Chemo with Rituxan in the morning and Zevalin in the afternoon. Only one day treatment for 2 weeks. I never heard about this treatment since. I hope it can help.

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@ginpene05

There definitely is staging for non Hodgkin's lymphoma, but that's all I know. It's done by biopsy of lymph glands or tumors, and then that determines the treatment. I wish you good luck.

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Thank you ginpene. That's what I thought too, as well as for waldromstrom Macroglobulinemia. Again, thanks.

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@ginette55

I had NHL 15 years ago. I don't know if there are many forms of it. I had a radio-immuno-therapy with 2 different Zevalin. One to target the blood cancer cells and one to destroy them. I had rituximab also. Chemo with Rituxan in the morning and Zevalin in the afternoon. Only one day treatment for 2 weeks. I never heard about this treatment since. I hope it can help.

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Thank you. It sounds like you are doing very well. So far, I'm just on hydroxyurea 1000/day, oral chemo.
I think my bottom line question to myself and to those who are knowledgeable and /or experienced, should I request a different doc? I'm thinking, yes.

If anyone else has suggestions or answers on staging, I'm interested.

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@janemichele

Thank you. It sounds like you are doing very well. So far, I'm just on hydroxyurea 1000/day, oral chemo.
I think my bottom line question to myself and to those who are knowledgeable and /or experienced, should I request a different doc? I'm thinking, yes.

If anyone else has suggestions or answers on staging, I'm interested.

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I will say yes. My first oncologist told me you are in stage 4, even the chemo cannot help you. Go and live your life. My daughters ask for the head of oncology in the hospital for a second opinion. I happened to know about this treatment in Germany. By chance they had the product and never use it because not recognized by the FDA. I assumed the responsibility and sign all the papers. Good luck.

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Thank you Ginette 55.

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