1. < Blood Cancers & Disorders

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.

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ginette55 | @ginette55 | Dec 31, 2019

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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1 reply
janemichele | @janemichele | Dec 31, 2019
In reply to @ginpene05 "There definitely is staging for non Hodgkin's lymphoma, but that's all I know. It's done by..." + (show)
@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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janemichele | @janemichele | Dec 31, 2019
In reply to @ginette55 "I had NHL 15 years ago. I don't know if there are many forms of it...." + (show)
@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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1 reply
ginette55 | @ginette55 | Jan 1, 2020
In reply to @janemichele "Thank you. It sounds like you are doing very well. So far, I'm just on hydroxyurea..." + (show)
@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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janemichele | @janemichele | Jan 8, 2020
In reply to @janemichele "Hi Justin. Unfortunately, there are few responses regarding my questions about JAK2, Essential Thrombocythemia and Waldromstrom's..." + (show)
@janemichele

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 justin. Are there any words of wisdom from your net worth of doctors but from your experience and knowledge?

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1 reply
janemichele | @janemichele | Jan 9, 2020
In reply to @janemichele "Hi justin. Are there any words of wisdom from your net worth of doctors but from..." + (show)
@janemichele

Hi justin. Are there any words of wisdom from your net worth of doctors but from your experience and knowledge?

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I meant to say any word from mayo clinic network or from your experience regarding my questions?

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jan 9, 2020

Hello @janemichele. Here is some additional information:

From a Mayo Clinic Hematologist,

"A provider could apply the same staging system (Ann Arbor Staging for lymphoma) to WM, which goes from 1 to 4 (like the TNM staging system for solid cancers that also goes from 1-4). However, in particular for WM, the Ann Arbor staging system is not helpful as all WM patients would be classified as stage 4, therefore, not giving us any information regarding prognosis. More commonly used is the IPSS-WM (international prognostic scoring system for WM) score, which is designed for WM and actually carries some meaningful prognostic information."

Here is a link to the original IPSS-WM publication: https://www.ncbi.nlm.nih.gov/pubmed/19196866.

@janemichele, were any of these tests discussed with you?

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1 reply
janemichele | @janemichele | Jan 11, 2020
In reply to @JustinMcClanahan "Hello @janemichele. Here is some additional information: From a Mayo Clinic Hematologist, "A provider could apply..." + (show)
@JustinMcClanahan

Hello @janemichele. Here is some additional information:

From a Mayo Clinic Hematologist,

"A provider could apply the same staging system (Ann Arbor Staging for lymphoma) to WM, which goes from 1 to 4 (like the TNM staging system for solid cancers that also goes from 1-4). However, in particular for WM, the Ann Arbor staging system is not helpful as all WM patients would be classified as stage 4, therefore, not giving us any information regarding prognosis. More commonly used is the IPSS-WM (international prognostic scoring system for WM) score, which is designed for WM and actually carries some meaningful prognostic information."

Here is a link to the original IPSS-WM publication: https://www.ncbi.nlm.nih.gov/pubmed/19196866.

@janemichele, were any of these tests discussed with you?

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Hi Justin. Thank you so much! And thanks to the hematologist/oncologist for the information.
This was very helpful for me. I sent it to my hematologist. No. she hasn't discussed any of this with me. When I asked via medical portal, she said there isn't any staging because it's in the blood. I have also asked for clarification as to the number of cancers I have but I haven't heard from her. ( MPN, ET, JAK2, WM, NHL).
Again, thank you for your help.

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svend | @svend | Feb 27, 2021

Anyone have experience with recurring waldenstroms? And treatment?

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