The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,395. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    hbneil Registered Users
    Currently Being Moderated


    I'm glad you don't have NHL.  I'm not sure if sarcoidosis is better or worse than NHL.  Whether it is one or the other, we're here for you and you are in my prayers. 


    I went to the ONC last week.  My HCT was 44.5%.  Platelets were 369.  This is the 2nd month in a row without a phlebotomy.  Wooo Hooo!   My kidney function has improved as well.  I'm doing great.


    The Supreme Court validated the Affordable Care Act.  We'll just have to wait and see how things play out.  I was afraid that they would only strike down the insurance mandate.  That would have been a real mess.  Insurance companies would have to take you but you could wait until you were sick to get insurance.  That would have caused insurance rates to sky rocket and even though the insurance companies couldn't turn you down, you probably couldn't afford the premiums.


    Take care everyone.  I'm thinking about you even if I'm not posting very regularly.  I've had a heavy work load lately.  I haven't been able to ride my bike much.  This Saturday it is a 55 miler.  We'll see how I do.



  • 1,396. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Pegetha maybe just a break by gradually going off the jakafi and maybe there is something else .Is,nt there a procedure they can do to lower the platelets?I,m praying for you and a solution for this issue so you can enjoy doing things again.

    Jules i,m learning more about sarcoidosis but still have a ways to go and i guess it can be linked to PV.  I will send info if i find updated web sites.

    Jody please make sure you get a copy of your blood work as well as a copy showing if your JAK 2 pos or neg,You can have MPN either way but having the info with you saves alot of headaches down the road plus you can compare othe cbc,s as you go along.I forgot are you on any meds?Huggers=D if no meds i,m sure once you get on something all the symptoms will improve. please  take care.

  • 1,397. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    hello me mattie!

    I am going to read and research abt this condition of yours--I have no knowledge of it. I wish you well sweet heart...much love, mimi

  • 1,398. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    buddyrider Registered Users
    Currently Being Moderated

    Brian happy belated birthday to you

    Had my cbc yesterday and all went well. My platelets are up to 491, but she is not concerened about the rise from last time, as i have had toncilitus from last Thursday.  So i go back in 5 weeks...happy happy no adjustment to meds nor a phleb...Htc 39.4 & Hb 13.4.  Smiles all round for me   

    Julie, i have never heard of that disease either, have you been told much about it? Keep strong my dear..

    Pegatha sorry to hear your not doing to great on the up once vacation time comes ok.

    Neil sorry to read you had to have another phleb, i do hope all settles down soon for you.

    Dee, hows things with you going?  Sarah have you had your knee seen to yet?  Mimi i am glad your doing well and making the most of each day...WELL we all do that huh...i for one

    Everyone else i am thinking about you

    wee p

  • 1,399. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!!

    Brian... Happy Belated Birthday to You!! hope you had a great one!


    Pegetha, i was hoping that the dizziness had started to go away... I'm glad you didn't break anything on the fall you took, but i'm sure you must be hurting from it. Geez.... i pray that your dose can be tapered off and that you would start to feel better! I am so praying for you Pegetha! and will continue to do so....


    Jules, i went and read up on the sarcoidosis, and i'm praying for you my dear, you have gone through so much already. I hope that they can treat you well for it. I'm glad to know that our dear Dee has been helping you with this. Know that you are not alone! Prayers for you.....


    Patti, i know your pc is down, know that i'm thinking of you and keeping you in prayers and hope that you are feeling better these day......


    Dee, i had mentioned to you that it was hot here last week, but after hearing you guys..... i know it's not!! I hope all of you stay hydrated and safe in the heat! Be careful as you are out there tending to your ferals. you have such a great heart and love for them! Bless you sweetie!


    weePea, i hope that you are feeling better! and i know you always keep them smiling at your workplace! what a peachy-pie you are!


    Linda, i hope the therapy is helping your shoulder! and i'm sorry to hear that they are working you overtime again.... And how is your daughter doing?


    Mimi, i saw the pics of you and weePea, and i loved them! looks like you all had a wonderful time! so awesome!


    Neil,.... 55miles! my goodness! how long does that take? how fantabulous that you are able to do that! It helps keep a strong heart for sure! and medicine for the soul for sure!


    take care everyone!! and Blessings to all...........

  • 1,400. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    macnanna Registered Users
    Currently Being Moderated

    Hi Neil,

            thank you for your kind words, i'm still trying to get my head around all of this, great stuff about your counts. take care love julie

  • 1,401. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    macnanna Registered Users
    Currently Being Moderated

    Hi Flower,

                   Thanks for your lovely words and yes been getting good advice from my blood sisters, dont know too much about this new dxd yet, but will keep on doing what i am told lol take care love jules ox

  • 1,402. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Sarah and everyone:

    Well I've got my PC back again. Not completely fixed, but useable.  Glad to be back online, as I felt very isolated without it.

    I have been feeling better, and got my cbc Thursday, so will see where counts are on Monday.

    Jules: I hope you can get to the bottom of all these diagnosis's?  This must be making you a bit nuts. I know you will be your own advocate, and be sure of what is going on.

    Around the 20th of June there were 2 people on here that said Aflac wont cover MPN's??? If you have a cancer policy before your diagnosis, they will, as MPN is a Blood cancer!  I gave you sites that you can print out from both the LLS, and ACS, that states clearly this is blood cancer. They cannot turn you down with copies of your bone marrow biopsy path report, as well as a note from your onc/ hem stating this is what it is.  I hope you will pursue this.

    Well, glad to be back, I've missed everyone here.

    Patti, 59, ET 07, PV 2011

  • 1,403. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    Hi Everyone

    Thanks for the birthday wishes ! The days ,weeks, and years certainly fly by when you are older !  Had to attend a friends funeral ( he was 82) on Thurs. my birthday.

    He had lung cancer diagnosed last Oct. His Dr. coincidentally was my Hem./Onc. and I would occasionally see him in the chemo room at the Hospital Cancer Center the last few months. Sad and quick ! Anyway hope all is well and by the way took my wife to see the movie TED last night ! Hysterical if you enjoy a raunchy teddy bear . Mark Wahlberg, Seth McFarlane, and Mila Kunis starred in a clever movie, great storyline LOVED IT ! Laugh a minute !


    Last day of June Happy 4th !



  • 1,404. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Laflemke Registered Users
    Currently Being Moderated

    Hi blood buddies!    I know it's been awhile; first it was my job...  Very busy and long days/nights, and then I took leave and had 3 grandchildren and my brothers 3 kids visiting.  Not to mention the 6 grandchildren that live close by.   I feel like I could sleep for a week, but it was really good to see the kids all playing together and reuniting.   I go back to work on the 5th so hoping things will calm down some and get back to normal.   Last CBC was good ... In fact nurse said I was a little on the anaemic side.  Guess that would account for being so tired all the time.  :-).  I found out last week that my sister has the same mutative gene.  She is a nurse at Mayo and they put in to some study they have going on there.   She had a BM biopsy last Friday to see if her bone marrow is actively putting out the mutated cells or if she just has the gene.   Not sure when she will get the results.   She is going to get me the name of the study and I will pass it along.  They told her they were looking for 5000 people that had PV and so far they had 2300.   I am not sure what the study all involves, but I am glad to hear that they are looking at it. When I find out more I will pass it along.  

    I'm or sure if it is the Hydrea or the PV or just plain getting old, but I have the hardest time concentrating on any one thing for very long, and I continually seem to loose my train of thought when speaking.   Ugh!!!  It is so frustrating!   I'm sure my family thinks it is time to put me away!   :-)

    Man has it been hot lately,   Just glad we are in WI and not in the southern states.   I feel for you all down there.  Before PV heat didn't bother me too bad, but now...  Oh the hot flashes are horrible!!   Ok I will stop complaining ...   From all I read about everyone my few problems are minor, just glad I have some where to vent.  :-)

    I turely hope you are all ok and you are all in my prayers!


  • 1,405. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone! great to hear from you LaVae, sounds like you have a big family and lots of little ones there, they are the greatest! but they can wear one out!   The Mayo research is a good thing, would be nice it you passed that info on here when you get it. Best of luck to your sister. And you try to get rested up!


    Looks like our forum has been on the quite side lately. and that goes for me too...  Seems we are all so busy always. I have been dealing with a lot of muscle pains lately, and feeling weakness in the legs (and arms) again. And sometimes i've been feeling nauseated, don't know it it's the HU?


    Dee, Pegetha & Juie,  i worry about you gals a lot, as i know you are all going through such hard times for such a long time now. I pray for you all much!  Please know that you all are so courageous and an inspiration to us all!   and that same thing applies to all you others here who all impact one of us in so many ways! You ALL make such a tremendous difference in our lives!   Everyone......... keep hanging in there! uplifting one another and allowing us to uplift you and help each other as needed!!!   God Bless each and everyone of you!!!!!!!!!    


    and i wish you all a very~~~~ "HAPPY 4th of JULY!!!!" ~~~~~~~~    and God Bless each and Everyone who has served or is in the Military serving our Country, we are so Proud of you and Grateful to you!!! It is because of you that we have our Freedom!!!! God Bless You!!!   and God Bless your families!!


    and to everyone here at the forum......... You are a Blessing to me! God Bless you all!    Sarah

  • 1,406. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated


         What a wonderful, heartfelt post and I would like to echo everything Sarah said in regard to those of you who are or have served in the military who r fighting for our freedom. A lot of Americans have nary a clue that our FREEDOM comes to us at a huge personal cost, and we should never forget that piece of information. So, many blessings to you military men who are in whatever branch of the military fighting for OUR FREEDOM.


    And, my lovely Sarah, what a lovely and heartfelt post. Best wishes to all on the 4th of July. We will spend the day at home as we prefer--just lazing about and counting our many blessings!...We r expecting bad thunder storms thru the night--No rain as yet??


    Love and best wishes to all of extended family who are all so very special and dear to me, mimi

  • 1,407. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    macnanna Registered Users
    Currently Being Moderated

    Hi Sara,

                 Thanks for your kind words and i hope all my blood sisters and brothers have a great 4th july, thinking of you your aussie mate jules xoxo

  • 1,408. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    LaVae..yes the hydrea can cause  memory issues all i can say is don,t panic its not anything to do with anything else but the meds.If that was,nt enough lol.

    Sarah please have your BP checked and are you taking your meds ???????Remember you forgot at one time( hydrea brain strikes again)


  • 1,409. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    HAPPY 4TH to everyone on here and their families ! To all the MILITARY PERSONNEL  who have given us our FREEDOM ! THANK YOU THANK YOU !


    Enjoy !


    Brian of Pa.

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