The Leukemia & Lymphoma Society - Fighting Blood Cancers
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PART 4 ,LIVING WITH PV, ET MPD,S

DEE11 Registered Users
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Hi everyone just trying to open another thread.The other one is getting to long and might start causing problems.So here,s to another thread!!!!!! Hugs to all

  • 1. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
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    Pegetha i pray for the very best as you leave tomorrow.Please be safe and i,m sending and angel to guide you.Best of luck and skill tata =D

  • 2. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    paytonsnana Registered Users
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    Ok I am on the new post hope this helps

    Denise

  • 3. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
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    Yee Haw!!!  I found the part 4, I think? Maybe this will help things go a bit faster now?   Hug's to all Patti

  • 4. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    buddyrider Registered Users
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    Hey there i made it here..i put the URL on part 3, so others know we are here

     

    wee p

  • 5. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
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    Thanks Pauline for the posting the new URL.  Someone told me this is harder to find??Maybe because its new.But we need to work on making things easier for new people to find us.


  • 6. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
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    Hi Everyone!!

    Dee, thanks for updating me on the new thread!   yes,... i hope it helps things to run more smoothly on the forum.


    Pegetha sweetie, I'm so excited for you to be able to be on your way to MD Anderson!  I'm praying for you so much and that everything will fall into place please take good care of yourself, you know that we wish we could go with you to help you, but... i hope you will feel us in spirit!  hope one of your family members will be able to go with you so you can have that 2nd ear.... take notes, and get copies of all you can (but i'm sure you know that already)  : )

    don't worry about posting to us until you can.... take care of you!!

  • 7. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    JAC Registered Users
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    Dee, Pauline, and Pegetha,

    Thanks for the responses.  I think right now we are still trying to let this all sink in.  We are going for my husbands first phelb today, I really hope he does OK, no fainting!!!!!  He doesn’t have an enlarged spleen, he has a spleen mass but so far they haven’t said that is related.  It would make sense to me if it was, but I’m not a doctor.  I’m due in July, and I’m so huge already, I can’t imagine 3 more months of Houston summer weather.  I can’t seem to figure out if it is good or bad if he is Jak2 negative.  It seems like all of the recent research is based around being Jak2 positive.  But I did see that the medicine in the clinical trials seems to work the same for people positive or negative for Jak2.  Hopefully we will not have to deal with that for a really long time.  Some people have mentioned Hydrea, I’m hoping we don’t have to start any medicine yet.  Hopefully phlebs will work for a while.   I know his HBG has varied between 17.4 -17.8 and his HCT has varied between 51.7-50.5.  What other blood counts do you look at?  Thanks again!

     

    Dee, I hope the phelbs start to work for your spleen. 

     

    Pauline, It’s nice to know there is someone to keep the mood light around here.

     

    Pegetha, I wish you safe travels on your trip to Houston.  The weather was actually beautiful this weekend so hopefully it will be nice while you are here.  I hope you get into your clinical trial.  I have a lot of friends and family that have been very happy with MDA.

     

    Thanks again everyone for your responses.

  • 8. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    buddyrider Registered Users
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    Dee it sure is hard to find the discussion boards now!!   I do hope others do find it here and join in.

    Pegatha, i wish for your trip, let us know when you can how things go ok...take care and good luck

     

    Jen for those of us with PV our main blood counts we look for are the Htc and the platelet levels.  As his Htc is higher than 45%, he will more and likely have several phlebs until they are happy with the range they are in.  Which, with having the phlebs you will notice his platelets rising, as they think the body is bleeding out, therefore our bone marrow produces extra platelets to clot the blood and stop the bleed.  What the body does not know, is that it is not a bleed through injury but by a controlled manner...BUT the body does not know this.  The platelets increase our chances of clots.  For those of us who are on hydrea, this is due to our hight plt count, i am on 1000mg 5 days a week and 500mg 2 days.  My plts raised upto 988, then i had no choice but to start with the hydrea.   All will settle with you both as time goes by, we have all been there, done that and so on... I hope your husband gets on ok with his first phleb

     

    Patti how are you?  Dee has that awful windy horrible weather left you yet?  Mimi how is things going with you?   Sarah 'tut tut' you are still not sitting down long enough - 'forum webcam' has got ya again not taking time out for yourself!!!

    I have my cbc this Thursday coming, so i hope no phleb nor talk of increasing my hydrea anymore, as she has wanted to increase my hydrea the past few visits!!  So fingers crossed my counts are ok!!  I am on holiday from work now for a week and i am so needing it too.  Fatigue is getting the better of me and i am hating it!! But we allknow what thats like huh!  I know i aint alone there

     

    Hope everyone is doing ok

    wee pee

     

  • 9. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
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    Morning  all...Good to see everyone.JAC just wanted to let you know there is  also secondary PV.Could be from stress, smoking etc.Plus his HGB and HCT  is right on.Men HGB normal is 14-18 and HCT 45-52.If your husband is a  type A personnality that could be one reason.But with his labs looking good i  pray you can relax and enjoy the upcoming baby boy.Love  babies...especailly boys.My youngest grandson is now 8.I took care of  him while my daughter was working and i had a great time with him.Glad  that back then i had the energy lol.With one young one and another coming  soon you do excersise.lol How can you not.!By the way if its handy i  would love to now were your hubby,s platlets are at.I believe you said  things where normal.Whats weird is your pregnant and i look like i ,m,  having twins right now lol.Today for some reason the spleen is working  over time and VERY large.Somedays it goes down a bit.This whole thing is  ironic seeing i was. OCD with working out and especailly focused on my  abs back then.Doing 250 situps..inclined a day.Now my ab looks like i,m  going to end up with stretch marks lol..Oh well that is a true definition of IRONIC AY ?   GOTTA GO TATA=d

  • 10. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
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    Pauline....one can go to search and type in "part 4 living with then save it.

  • 11. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
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    Jen i'm sorry i haven't introduced myself yet, I'm Sarah, dx'd with pv in '03 and on hydrea. I'm so sorry to hear your husband was diagnosed with pv. Will lift a prayer that he does well with the phleb. (get copies of all cbc's done and any other tests, they're important to have and keep) 

    and i read that you are having a baby!! What a blessing!!   I love babies! and children! Congratulations! Sounds like you are a very supportive wife, but try not to be stressing, baby wants mommy to be happy!


    Everyone else.... sorry i can't stay on now and reply to others, but i have to go for my cbc tomorrow and must get my paper work ready (they are saying my med. ins. is expired! So..... have to also go and reapply!) arrgg!!  praying it goes well....


    Shawna, good to see you again.

    Dee, hope that dog-gone spleen goes down!!! ( i never knew of your serious excersise self before! wow....  made me feel lazy!! lol...)  

    Mimi, hope all is well?  

    Pauli, hope your trip back home is going well....  

    Pegetha, i'm praying for you sweetie!

    Neil, are we having a bit of nutty weather here or what!!?   Dee, is all that severe weather gone through over there now??

    wee pea, and Linda hope your jobs aren't being too harsh on you. and are your feet feeling better Linda?


    ok.... i Really need to get off and take care of my stuff....... Blessing to all of you!!!

  • 12. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
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    Dee..... Loveee that new profile pic!   too cute!

  • 13. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
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    JAC: Hello, this is Patti from Oregon, I was concerned that if your husband is in "normal" range with his HCT that a phleb will make him iron deficient. Is it possible to see one of the MPD/MPN specialists at MD Anderson in Houston????  You can take all the test results so he wont have to repeat them. Please look into this if you can, so he wont have to do anything that may not be necessary. You can always re-schedule the phleb if the specialist thinks he should?  Just  trying to help.  Hug's Patti

  • 14. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    JAC Registered Users
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    Goodmorning everyone,

    Thank you so much for all of the posts.  I really appreciate everyones input.  Just a little update...........  My husband did great with his first phleb yesterday, he didn't faint and he felt fine afterwards.  He actaully argued with me about who was going to drive home.  I won of course since I went with him just so I could drive him home.  I was a little surpised yesterday to hear they are not going to do a CBC for a month.  I'm so confused by all of this and our appointment with his hem/onc isn't for 3 months to get his cat scan results.  I feel like I have a ton of unanswered questions.  We were told you "most likely" have PV, you tested negative for it (I'm assuming this means for Jak2 but I don't know for sure) but your bone marrow looks like PV.  Then we were told it is a non-life treatening for of Lukemia.  That is all we got.  I was debating trying to schedule another doctor's appointment just to get some questions answered.  But then yesterday right after the phleb we got a phone call from MDA and he has an appointment on Friday.  I can't believe they got us in so quickly!!!  I'm really happy about this, I hope I can get all of our questions answered.  The other night my husbnad said "Do I actually have PV?"  I said I think so.   I'm just ready for a doctor to tell us a little more.  MDA requested the actual slides from the bone marrow aspiration so I'm happy someone else will be looking at them.  I guess my only fear is I don't want to hear he has something worse.  I guess that is just part of the game right??

     

    I was going to make a list of questions to ask at our appointment on Friday.  First one being is he Jak2 negative and is that a good or a bad thing?  Does anyone have any input on questions they would ask?  All of you have so much more knowledge on this than I do I thought you might have some input.  Thanks again!!!!!!

     

    Dee,

    My husband is definitely a type A personality!!!!!  Also I looked at this labs and his platlets ranged from 200-252.  I did notice he had a high MCH on his last CBC, but everything else was in normal range.  Would secondary PV show too many blood cells in your bone marrow?  From what I understand they are pretty much using his bone marrow for the diagnosis.  I'm sorry that your spleen is acting up, hopefully it will go down today.  I'm HUGE, I have three months to go and my husband swears I was this same size right before having the last one.

     

    Sarah,

    Thanks for the intro.  I hope everything is good on your CBC today!

     

    Patti,

    Well they already did the phleb.  But I guess their plan the whole time was to only do one and then wait a month.  I'm assuming things couldn't get too messed up from one phleb????  But what do I know.  I do know his hem/onc called his a freind of his at MDA and told him what was going on and asked his opinion on the phelb.  It made me happy to know he was checking hiimself.  I will fell much better after our MDA appointment on Friday!

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