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

    Sarah: I'm so sorry you had to go through all of that! No One should be treated like this from anyone in the medical profession!!!!  I wish I could come down to you and help you get some good compassionate care from a good cancer center there!!!!!  To get the help at a better place can't be as hard or bad as you deal with now. You never said anything about seeing the ortho Dr either?  You need to get that knee taken care of too. I'm thinking about you. Hug's, Patti

  • 31. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    matt Registered Users
    Currently Being Moderated

    Im new to this site  glad i found it i'v had secondary pv fore apout 7months now  having about 2 phlobotomy a months some time more sometime less. smoke fore about 24 y dont smoke know had to stop lol. what can i do to make my self fill good im always tired i wont to fill  like doing thangs.any suggestions.

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

    Matt you have to ride the storm till your numbers get back to normal.Giving up smoking is the best especially with secondary PV..Fatigue is a big part of PV Hopefully in time you,ll feel  better .Good luck.

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

    Welcome Matt,

    I echo what Dee posted to you. I am Mimi and have had PV for 10 yrs. I do well except for the fatigue, but I am 60 y/o--no spring chicken and i'm sure my age is a  part of my fatigue! By all means stop smoking if at all possible. That will help tremendously--(even though I am an intermittent smoker).....Anyway, best wishes to you and when you need or want to ask questions, please feel free to do so, as well, if you want to just make a statement. Are you seeing a hematologist for your condition? Also, how was your condition diagnosed?

    Sincerely, mimi

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

    Just want to give a shout out to Pegetha,We miss you and i,m so worried about you and hope your trip back home is safe.Please when your rested let us know how you made out.I have been sitting on the edge of my seat.Big hugs and hope everything went well.!!!!! tata=D

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

    PEGETHA:

    I join dee in her well wishes for you. We are all thinking about you and lifting many prayers for you. And, by all means, safe travel home, love, mimi

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

    DEE:

    I LOVE your new pics--I love the one of Munroe---I read sarah's mention of your new pids, otherwise, i never would have known to look! Ciao bell and hope the spleen calms down.

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

    Just an update ..PCP called me back yesterday and she said to stop the bp med.I,ll check myself after the weekly phlebot and she said my counts were not all that bad (bp).Just slightly elevated from cymbalta.Ok coffee is hot and fresh.I,m not lol ..need to get going tata =D

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

    Hello to all my friends,hope all are feeling well .I came down with shingles on my face last week.It is driving me crazy.It seem like I can be down wind from anyone sick and a day or two I get sick.I guess it is the ET or the hydrea I,m taking.I just want to feel good again.I'm sick and tired of being sick and tired!Enough of my belly aching.

    I hope Pegatha gets some answers and help from MD Anderson.

     

    Hello Matt and welcome,sorry for my rant.Don't want to scare you off.Hope you get to feeling better soon.

     

    I wish everyone has a wonderful Easter week end.God Bless all...LindaK

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

    Hi Everyone!

    Hi Matt, welcome.... I'm Sarah dx'd with pv.  Matt, how did they come out with the diagnoses of pv? what test have you had done? and what are your counts like?  just wondering because of the amt. of phlebs that you are requiring...  hope you start to feel better.

     

    Hi Patti, thanks for the nice words... i know you would help me if you were here   and thanks for that! it means a lot to me.  I will meet with a different lady (a nice one when i go back to re-register) and hopefully she can help pull some strings to get me in to see the ortho. (it's been since Feb. 2010! that iMRI on my knee!) it's just bad the way things are run there....  but, thanks again, had the

     

    Dee, ditto about our dear kind Pegetha!!  been praying for you sweetie, i hope it was a encouraging visit to the start of something good!   have a safe trip back home, and take your time and get rested....  then let us know how it went .


    Linda, my goodness Shingles doesn't sound fun!!   so sorry you are having so many complications....  how are your wbc?  you know they do tell us that our immune system is compromised, but i know being around some people who are sick is pretty hard to avoid at times....  praying you feel better.


    Mimi & wee Pea, a big hello to my 2 lil' chirpie pals!!!.....  hope the both of you are doing well!!


    Dee, i'm so glad your pcp called you back!  make them work for there money!! lol....  please, please Rest!!!! 


    Colleen, we haven't heard from you in a long time.... hope you are just busy and not, not feeling well. Please drop by when you get a chance....


    Pauli, how close to home are you now?? Hope you and Ralph are doing ok? 


    Take Care  all..... and have a Blessed and beautiful weekend!!!    

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

    Hello Everyone: I was lucky enough to have a visit from Pauli & Ralph on their way home to Canada!!!!! It was so wonderful to meet them after all this time. If anyone is wondering, LOL, They are two of the nicest people I've met. We got to visit for a couple hours , before they were headed north again. And the most amazing thing was when they arrived, the sun was out too!!!  That will stay in my heart & mind, and I feel blessed to have the chance to meet them.  Just wish somehow one day we all could meet!  Have a good weekend everyone.  Patti

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

    Linda vent away thats what we are here for, so no need to appologise my dear.  Shingles is not a nice to have at all.  I do hope you are or have recovered from them.  Take it easy and we can all relate from being sick and tired of being sick and tired lol...  

    Dee how are you doing?  Hope your taking it easy...''forum webcam'' is on you this week!!! SO beware!!! i am watching you

    Patti how are you?  When do you go back for your cbc?

    Mimi its always great to see your posts. How are you doing? 

    Pauli, safe trip home

    Sarah, i know this weekend will be busy family wise for you, BUT remember and take time out and REST your knee!!

    Pegatha, i hope all went well at the clinic for you, let us know when you can ok, take care

    Denise, Saki, Colleen, Jen etc etc....hope you are all fairing well and have a lovely easter weekend.

     

    I had my cbc on Thursday there and all counts good and no phleb.  wwc-7.2. plts-327. htc-41%. hb-14.5. rbc-3.7.  so no change to my hydrea 1000mg 5 days a week and 500mg 2 days a week.  My onc has been wanting to increase my hydrea since my phleb in January there, but i have held off and my counts are good right now, so i am happy

    wee p

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

    Patti i am so so happy for you to have met Pauli and Ralph on their way back home north.  I know how amazing the feeling is to meet others, as we met in October last year, which was truely AMAZING and i am looking forward to September when again we shall meet and not to forget my visit to mimi too heeheeheeheeeeeeee

    wee p x

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

    Patti, what a wonderful post to read this morning!!   I'm so happy that Pauli & Ralph stopped to meet you and your hubby in person! How wonderful that must've been!  yes, Pauli and her hubby seem to be very sincere and sweet people. Glad you had that opportunity!   and you too missy.... are a super-sweet person as well!!   have a wonderful Sat...... Be Blessed!!!     (thanks for sharing that!)  and yes..... hopefully one day we may all get to meet! that would be so Wonderful............

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

    Good Morning Everyone!!    I usually don't get to say that!!  being i jump on pc in the evenings! and so tired by then. But today i had a few minutes before having to start with everything..... (actually, it's almost noon for many of you! and not sure what for you wee Pea! evening??) lol.....


    great post as always wee Pea!   webcam, bring it on......i'm resting now! lol...   Hey great to hear that your cbc looks great!! way to go!!   keep doing whatever it is that you are doing!  And as far as them wanting to raise your HU,..... why!!??  i wouldn't let them, how often are you needing a phleb?  your #'s are good now and if they go up, shouldn't a phleb be done, before any HU raising is talked about!?

    That's what the other hem/onc was talking about (raising my HU) my #'s are slowing creeping up....  But lordy, i haven't had a phleb in over a year!! (which i love and is great...) however, i'll be darn if i was going to let them raise my HU before trying a few bleeds to lower the counts.  Just my thought......

    take care of yourself sweetie, and don't be afraid to speak up your opinion to them. ok....


    Mom Mom (haven't seen you here in forever!) drop us a line when you can   hope you and Anne are doing well, i sometimes think of you ladies (bless you Anne for having started this site for us!!) and i lift a prayer for you ladies   (anyone here who speaks to either of these special ladies, give them a big Hello from me! )


    Colleen, i'm worried that you may be overdoing it. I hope that you do get some time to rest or get some quite time to yourself, please take care and give us a lil' post when you get a minute.


    Neil, hope you are still doing well and get to enjoy some of those bike rides you love.


    Linda, yes i hope that the shingles have all cleared up (i know it can be so uncomfortable and painful) praying for you!


    Any passer-by's..... please feel free to jump in and introduce yourselfs!! we'd love to hear from you!


    Dee, what day do you go for your next phleb?? I want to make sure i'm in prayer for you that day!   i think with the bp med stopped, you should do much better, also please remember to drink a lot of water before and after. I know it's hard for you with your spleen, but do the best you can sweetie. ok?


    Mimi, you are such a charming amiga!  hope you are feeling well and have a great weekend!!


    Everyone (and we have MIA's missing...... we miss you! please post when you can)  have a Fantabulous Weekend!!!!  

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