The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,380. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Emily87 Registered Users
    Currently Being Moderated

    As far as the cancer issue...this is how I think of it: By its most basic definition (a disease caused by an uncontrolled division of abnormal cells), then sure. MPNs are a kind of cancer. They are not generally defined as malignant (the tendency of a condition to be come progressively worse, and eventually lead to death) conditions though. (unless they are positive for the Philadelphia Chromosome, in which case you are most likely looking at Chronic myelogenous leukemia – which is another issue unto itself) Prior to the 2008 decision by the World Health Organizations, we called these conditions MPDs Myeloproliferative DISORDERS. There are people who feel that after the WHO changed the classification from Myeloproliferative DISORDERS to Myeloproliferative NEOPLASMS, that somehow they have magically become something else. That isn’t true. The fundamental nature of the diseases has not changed. What has changed is their classification. (Which almost seems to have been done for coding/paperwork purposes really) MPNs contain many of the same symptoms that you might see in a lot of different diseases, so instead of leaving them off in their own lonely little category, they have been lumped in with everything else. For some people the word “cancer” is very intimidating, so they prefer not to have it attached to their condition, which is fine. To me though, cancer is just a word. It won’t jump out and bite you, nor should you allow it to affect your outlook on your treatment.

     

    I am going to borrow an analogy from a friend of mine...maybe this will help:

     

    "Let's say that you have a big box of ribbons on the table before you

    and your job is to sort the ribbons into categories; reds go with reds,

    blues go with blues, yellows go with yellows, plaids go with ???? yikes!

    where does it go???  So you look at it a bit and you see that the colors

    represented in the plaid design are red/green/black but when you first

    look at it you sense that this is a 'red plaid design' so it then would go

    in the RED box because that is what it most closely resembles.  

    In essence, this is how/why the MPNs got lumped in the 'cancer'

    designation even though it is not cancer in the true sense of the word.

    In a malignant tumor, the cells run rampant -- but in an MPN there is

    a type of malignant factor at work due to the replicating nature of the

    cells, but that's where the similarity ends.  Thus, many say 'blood cancer'

    when referring to an MPD -- but it is because it has been lumped into

    that category for convenience of the medical profession -- but it sure is

    confusing to the patients/caretakers!  There are many other nuances

    that we could discuss, but I believe this will suffice as to how/why these

    MPNs got lumped into this category. "

  • 1,381. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    buddyrider Registered Users
    Currently Being Moderated

    Emily, Patti, Dee you guys are full of information for us all...totally amazing and thank you for providing help to us on here.  I am lucky here in the UK regarding my treatment and have no dealings with insurance companies etc..i feel blessed.

    Dee i am glad your daughter is doing well and getting there slowly, keep strong my dear. 

    Julie i hope you are keeping your spirits up my dear, let us know how things are with you.

    Patti, oh no, i wondered where you have been!! now i know, bad coffee TUT TUT....see you on here when your up and running. 

    I am off work at present with a throat infection, i called my doctors today and they dont have an appointment for 2 weeks!!!! My legs, throat and head are sore, plus i have white coating on my throat, not a pretty sight, sore to swallow too.   Hate being off work but cant help being sick and dont want to pass on anything to others eh.  So, its plenty of fluids, paracetamol and rest. Chicken soup yum yum, gargling salt water ---- not so yum!! more YUCK lol...

    Take care everyone, off to lie down now.

    wee p

  • 1,382. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    buddyrider Registered Users
    Currently Being Moderated

    Happy Birthday Mimi hope you have a good day

    love wee p

  • 1,383. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    pegetha Registered Users
    Currently Being Moderated

    I second that motion . . .

     

    Happy birthday, Mimi.  I hope it's a great day, filled with lots of fun, good friends and family, and good things to eat (that you don't have to cook).

     

    Pegetha

  • 1,384. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bubs11 Registered Users
    Currently Being Moderated

    Happy Birthday to you,  Happy birthday to you......All the best of wishes to you on your special day, with many, many more to come.  love,  Carol

  • 1,385. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    Thank y'all for the bday wishes--My wish is that everyone starts enjoying better and best health possible--LOVE TO ALL

  • 1,386. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    lkbanks Registered Users
    Currently Being Moderated

    Have a Happy Birthday Mimi,we all love you!

  • 1,387. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    HAPPY HAPPY BIRTHDAY MIMI!!!!!!! LA DEE &*^^%$%&# DA LOL

  • 1,388. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    HAPPY BIRTHDAY MIMI !!!!!!! 

     

    My birthday is Thursday June 28th !

     

    Yes we are Cancers !!!!  Very nice people !!!

     

    Enjoy !

     

    Brian

  • 1,389. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Mimi mi amiga.... Happy Belated Birthday to you sweetie!!!   so sorry i am late on the wish, but.... know that the Birthday wish is Filled with much Loveee!!!!    hope you had a Fantabulous day! you beautiful sweet Southern Belle!

    tu amiga........ Sarah

  • 1,390. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Hello everyone.````JODY AND BRIAN.I did find a sight that lists pv as cancer and it could be helpful in cases applying for disability or whatever. i hope i type this correctly

    HTTP://VOICES.YAHOO.COM/ABOUT-POLYCYTHEMIA-VERA                I.m still looking for some files i have saved just hoping they were not the ones i lost when my mother board died on me.But as soon as i find them i will post them.

    Jules ,hows things going?This has been such a rough week with the waiting.I,m always thinking and praying about and for you.

    Pegetha .i do not know how you deal with the heat .Just hope things improve really soon.Same ol same ol here.Will not bore you ~~~~again lol.

    Huggers=D   PS I,m not doing the list of names but i,m wondering how Neil is.

    Linda hows the shoulder???? tata

  • 1,391. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    lkbanks Registered Users
    Currently Being Moderated

    Has anyone heard from Julie lately?Worried about her. Hope everyone is doing okay(?)

    I go to my Hem/Onc on Friday,hope my counts are okay,he upped my pills to 2 a day .I have been really tired lately(doing over time again)

    I have you all in my prayers,and thankful for this site.God Bless...LindaK

  • 1,392. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    pegetha Registered Users
    Currently Being Moderated

    Good morning, all.  I couldn't sleep, so I'm having that first cup of tea (strong ), and checking in.  Yup, gonna' be another scorcher of a day, Dee, but I think that is true for lots of folks on this thread.  (Linda, don't you live in Texas?  Hot there, huh?)  From what I saw on the national news yesterday, heat records are being broken all over the country.  Denver has been having temps of over 100, and wildfires out of control in the mountains.  I'm praying for those folks who are affected.  For those who live in coastal California (Sarah, Neil), right now I envy you your weather! 

     

    Jules, you're in my thoughts.  How are you doing?  Please keep us posted.

     

    I'm doing better, and on my way to recovery from my latest setback.  The Jakafi which I am taking has been making me dizzy and lightheaded.  As a result, I took a tumble, and injured myself somewhat.  No broken bones, thanks to the good grace of God, but painful nevertheless.  The problem I'm facing now is what to do about the meds.  If I continue taking J, will I continue being dizzy?  If so, then I risk another fall with possibly a worse outcome.  I can't go back to HU, either.  It served me well for about 7 years, but because of the squamous cell carcinomas, my docs want me off of it.  So, where do I go next?  There still aren't a whole lot of options out there.  I've thought about Pegasys, but not sure about that.  Any ideas, anyone? 

     

    Time for another cuppa . . .

     

    Pegetha

  • 1,393. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    jodyhann Registered Users
    Currently Being Moderated

    Thank you Dee!!

     

    I had my first appointment with the Hematologist/Oncologist today. Typical first visit. Took in all my CBC's. He did some more blood work and I go back on July 10th. Blood pressure was up considerably this time 133/94 versus what I had 2 weeks ago 118/60. Headaches are back with intensity, knees hurt, itchy skin, back hurts, short of breath, etc. He checked liver and spleen sizes via manual observation (feeling around the abdominal area) and said both "feel" normal sized. They are testing for the JAK2. Guess we'll find out what's up soon enough. Take care! All my love to all of you! Muah!

  • 1,394. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    macnanna Registered Users
    Currently Being Moderated

    Hi All,

               just letting you know i was told yest that i dont have non hogkins lymphoma but a anougher rare disease sarcoidosis? dont know much about it yet, but been told it attacks your main organs? Thanks to Dee for her help with this and cant wait for patti to have her pc fixed, take care and thank you all for your love and support. oxo

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