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Thread: Going to Mayo next week for radiation

  1. #1

    Default Going to Mayo next week for radiation

    This is not for MS. It's for Polycythemia Vera, in which I make too many red cells and
    platelets. My white cells are very slightly high, not VERY high like the others. I have
    phlebotomies for the red cells, but those pesky platelets require either chemo or radiation.

    It is unusual to have radiation for this, although taking p32 (radioactive phosphorus) was
    one of the first treatments for PV. The newer drugs, interferons and Hydrea, simply are
    not tolerated by me, and I know now that my refusal of Betaseron for MS many years ago
    was wise. I was right, I could not have tolerated the side effects. I know some of you tolerate
    miserable side effects; in my case the side effects included intermittent blindness, low pulse,
    and vascular problems so severe that I might have lost a toe (and certainly could hardly walk
    on my toes).

    I have used some "natural" methods which have helped me, such as non-flush niacin to keep
    the vascular system open. I have used magnesium, as I have often stated here, to help with
    neurological spasm and jerking, as I can't take the usual MS type drugs such as Baclofen, and
    was advised by a neuro decades ago to use magnesium instead. And the Swank diet has
    been a great help in both neuro and vascular problems, in my belief. I always got unbalanced
    if I went off Swank.

    Now, I am going to do the ultimate allopathic thing, take p32 (radioactive phosphorus) which
    will partly suppress my bone marrow. I do not actually know how it works--suppress may not
    be the right word. The oncologist is meticulous but non-communicative, as are the hematologists,
    so this made me put off the therapy for nearly a year, and actually 3 years since it was first
    suggested by the head of hematology at UNM. I have heard good reports on results from other
    doctors, such as the cardiologist I got after my last "blind episodes" two and a half weeks ago;
    she gave p32 with success years ago, and one of her patients even lived 20 years after it, and
    all of them lost most of their symptoms of PV and had no side effects. It gives an increased
    danger of leukemia (about 10%) but I find through extensive reading that the same is true for
    Hydrea, the most common chemo for myeloproliferative diseases.

    These diseases are long lasting, and usually do not kill quickly (through stroke or heart attack,
    usually), but without phlebotomies to lower red cells I would be in quicker trouble. I have
    phlebs every six weeks to keep the red cells lower.

    Doctors can usually dx these diseases quicker than MS, but I find that their knowledge on what
    to do about them is as limited as MS knowledge.

    My inability to tolerate chemo is possibly due to yet another disease I have, Porphyria.

    I will have to go alone and come back alone, on a plane, and driving 100 miles to the plane.
    So it's a big challenge.

  2. #2
    Distinguished Community Member SalpalSally's Avatar
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    Good luck and easy travels, {{{{Marie}}}}.
    Love, Sally


    "The best way out is always through". Robert Frost







  3. #3
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    Mariel,

    Can you remind me if PV is an auto-immune disease?

    I hope this works for you. Safe travels,
    ANN
    There comes a time when silence is betrayal.- MLK

  4. #4
    Distinguished Community Member agate's Avatar
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    Good luck with your ordeal, Mariel.

    Is there any possibility of hiring someone to drive you the 100 miles to the plane? If the someone was reliable, that would relieve you of a lot of the strain, it seems to me.

    You'll probably need to travel 100 miles from the plane too, right? The same someone might be hired...

    I hope I'm not suggesting something totally ridiculous. I'd pull out all the stops to make this experience as easy as possible on myself.
    Last edited by agate; 11-04-2011 at 01:32 PM.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  5. #5
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    Mariel, you are a very smart lady and have obviously done your home work. You know a lot about what you are dealing with and there does not seem to be a truly good solution. However, now that the decision has been made I hope it turns out to be just the right thing for you. I would love to see you get a lot of relief from all that you have gone through.

    I, like the others, hate to see you have to drive 100 miles to the airport and then 100 miles when you get back. Is there no possibility of your son being able to take you? I can't remember where he lives in relation to you. If that is not possible I do wish there was an alternative way. Since you can't be sure how you will be feeling when you get back, it would be nice if you did not have this extra burden to worry about.

    I really wish you lots of luck and success.
    Virginia

  6. #6

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    Ann, I don't think PV it an auto-immune disease. I am really confused about whether MS is auto-immune,
    as I think some cases are auto-immune and others chemically caused (chemicals causing the brain scars).
    PV is caused by a mutation in the bone marrow of one cell, which then proliferates. there are several other
    kinds of myeloproliferative diseases, and I have another one, too, Monoclonal Gammopathy, or MGUS, which
    occasionally turns into Multiple Myeloma. I am also enrolled in a study group to determine the haplogroup
    (original ethnicity) of people with PV, which is done genetically. My haplogroup is J1C, which came thousands
    of years ago from "Israel", Arabia, and the Caucasus. My mother, who gave me the J1C, was Irish, and 11%
    of Irish are J1C, the largest J haplogroup in Europe---but we don't know if this is hereditary, it's just a study
    to think about it.

  7. #7

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    Agate, and Virginia, I used to have a handyman who drove me, and he was a wonderful friend with whom I talked about many things. He and his wife moved to Michigan. My son does not want to have anything to do with my illnesses. He can't be asked to even come down here to move things for me, like a computer or printer. He is hostile to me on such issues of asking for help.
    He is willing to let me come visit his sons, 9 and 6, which I do about once a week. this is a long-standing problem that has absolutely no solution; i have prayed for decades. He is not the type to go for counseling, as he is a PhD. in science who thinks he knows "everything." It is a sorrow. I don't know how to hire anyone to drive. I am assured there will be no side effects, so I am having to trust God to get me home. Or the Great Bunny Angel (I love bunnies).

  8. #8
    Distinguished Community Member agate's Avatar
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    That's very sad about your son. Maybe over time that situation will change over time but meanwhile you do have a problem.

    You could start by contacting the local chapter of the MS Society. They often have resources or at least could suggest local organizations that could come up with drivers. If you would have a problem paying for somebody to drive, there are even volunteers who do driving in situations like yours.
    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07 - 5/10.
    Member of this MS board since 2001.

  9. #9

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    I live in a small town, Agate, and we don't have an MS society. I have money to pay a driver. I don't know how to find one.
    I may try church again and see if they can suggest a way to find one. We are isolated here in Los Alamos, the town was deliberately built in an isolated spot in WWII. I will find someone, just have not had the will yet.

    My son is already 50 and hardened in his ways. I don't expect him to change. Possibly in his own old age. Thanks for
    your thoughts.

  10. #10
    Distinguished Community Member SalpalSally's Avatar
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    May the Bunny Angel Force be with you.
    Love, Sally


    "The best way out is always through". Robert Frost







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