The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,260. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
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    Hi Everyone!!

    Patti, i'm so happy you made it to Wyoming safely!!   Enjoy your beautiful country!! sounds wonderful there!!  Take it slow in the process my dear! okay?


    Dee, Pegetha, Jules, i'm praying for you gals........ (and the others as well.) but i pray you get answers, and some relief and energy........  So proud of all of you and your strength! hang in there ladies!! 


    Blessings to everyone!

  • 1,261. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Pegetha and everyone thank you for the Bday wishes.

    Sarah how re you doing with the knee and the cbc,s ?

    LaVae..good to see you agn I need to catch up on everyone .Its nice to have a support group but we often feel helpless not being able to help others more.

    Carol glad you survived the B day bash....The "23 and me" is  FREE genteic testing for anyone with MPN.diseases.Its a great tool and very detailed.They send you a spit kit( they do international )and you fill out a survey,There is so much info about traits and other diseases .Its  a wonderful offer for us and it does,nt cost us anything.Please visit ...       on the page at the right under the list of doctors you,ll see the picture of the kit and a link to fill out  info to qualify to recieve one.Once they recieve the kit it takes about 6-8 weeks for results.Its so detailed i could,nt even begin to tell you the info.You can be as private as you want.They also have a relative finder and optional contact.I had mostly 3-4th cousins and chatted with 2.through the web page.I would like veryone to take this offer.Its great for research and private info.for yourself.Hope you check it out.Well i hope we hear from the others...Neil...hope your just busy and not sick. Huggers=D

    PS one more appeal for jakafi and i,m done.What a pain in the back side.Not even sure i want to take it now.But thats me.

  • 1,262. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    pss.The "parr" labs called me about my issue with there pink and green HU.They were very interested about what else  i  was taking so they can check it out.I just thought it was nice for them to be interested in possible side effects.Back on the reg HU..See what happens.( that co, is "BARR" ).very confusing.Too much paper work too many phone calls

  • 1,263. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Well sorry to have t keep talking about the ongoing situation with jakafi and HU but after all that of locating the correct HU my ONC. said not to take it due to low counts.So cbc the 21st.We,ll take it from there.Oh well.what can i say

  • 1,264. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Dee, how low are your counts? did you just have another cbc done?  and i was also wondering what your last white cell count was?  i was just curious as i believe i read that the jakafi lowers the white cells as well. (but i maybe wrong, i've read so much and it gets confusing to sort out after awhile)


    my knee isn't bothering me too bad lately (seemed to be worse when we were having the cold weather) but it does flare up at times and then will last a few days. No they aren't planning on doing anything else about it. what can i say.....


    Carol, glad the party went well and that you had a nice time! we all need that!   hope you do well back on the HU.


    Neil, we haven't heard from you....... how are things?


    weePea, sounds like you are going to have some great visits! lucky gal........ enjoy!   and the pics of your Charlie, boy... he sure has grown alot! so cute!


    Pegetha, i know that things get pretty rough for you and so tiring.... i hope school break comes quick for you!  and are you still doing okay with the Jakafi?


    hang in there everyone!! and Blessings to all of you............

  • 1,265. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Sarah the counts were almost reaching normal thats why i,m so hesitant about the jakafi.But thats not the major issue.They want from me $2830 the first month and 380-400 for each month for the rest of the year.NOT !So insured and middle class there is,nt any assitant progams out there even incyte said no.Soooo back to the drawing board.I,m having 3 cat scans tues the day mydaughter has her double mysectomy.Please keep Karen in your prayers.She will have reconstuctive surgery the same time.Recovery will be rough on her.I will be there everyday to make sure she behaves the docs orders.Just to vac, shop ,and do laundry.Plus Nicholas and his school and games.Which Jerry will do most of.

    My onc is still stuck saying the other meds for pv/mf i will not benefit from.Back to the drawing board i guess.But liver might be enlarged now as well.Not bad but its there.With probably helping Karen with $$ due to her being out of work, I cannot not cut myself that close money wise and i really don,t feel like spending that kind of money to find out i have to stop it with in a few monthsTill incyte can get real with the pricing and theres need to keep there stock over 23 million a quarter i,m opting out.

    Its all good i feel bad alot of people have tried to help get me assistance but there are strick guidelines.

    on a happier note i want to take this time to wish all the ladies    HAPPY MOTHERS DAY !!!! MOTHERS ,GRANMOTHERS, AUNTS PET OWNERS ALIKE!!!!!!MAY SOMETHING WONDERFUL COME YOUR WAY.!!!!!!!!!!!!!!!!!!!!!!!!!!!!!   huggers =D

  • 1,266. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
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    HAPPY MOTHER's DAY TO you all!!!

    Dee: Karen will be in our prayers, and I hope her surgery and recovery will go smoothly!  I now you will take good care of her , but remember to care for yourself as well! 

    Hug's to everyone, Patti

  • 1,267. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bubs11 Registered Users
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    Happy Mothers Day to all the wonderful ladies.  (Men, your turn next month).    Dee,  Best of luck on Tuesday for your daughter.  We'll all be thinking of her and we wish her a speedy recovery.

  • 1,268. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    lkbanks Registered Users
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    Happy Mothers Day to all of my friends here,hope you have a great pain free and restful day.

    Dee,sending prayers your way for you and your daughter.When your children are in pain and stress so are you.Take care of her and yourself.

    To all the guys here also take care.I will keep you all in my prayers.God Bless.....LindaK

  • 1,269. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Laflemke Registered Users
    Currently Being Moderated

    Happy Mother's Day!!!     Had a wonderful day with the kids and grandkids!  It is a lot of work, but I love having the, come over and spend the day.   Tuesday I go for blood test and see my OC     Wondering what my counts will be, I am sure they are back up there as the headaches are back..    I have noticed lately if i have been on my feet most of the day,  I wake up in the middle of the night with pains in my leg.  It is the bone, not the muscle and it is both the shin and the thigh bone, just ache...   Anyone else have anything like that?   Not sure if it is part of the PV or I'm just getting old!  :-).   


    Karen, so sorry to hear your daughter is having to go through all that,   My thoughts and prayers are with her, you and your family. 


    Take care everyone!


  • 1,270. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Dee, it makes me sad and mad that they can't lower the cost for the Jakafi for you! The money they charge is insane!! oooohhhh..........    We can't give up!! there has to be something!!! and she shall keep trying to find something! even if it means a different med route!  Hang in there sweetie!! You've come too far and the tough just have to keep getting tougher!! You shall win this battle!!!!   I am praying for that for you and for Karen as well. (although i'm confused, i thought she was going in tomorrow? Mon?) either way..... i'm praying Gods Angels to surround her, and for everything to go smoothly.... and for you as well with your Cat Scans. ... Geezzzz, you have alot on your plate!! take it slow sweetie! let others help you too. You are one strong wonderful lady my dear!!!


    Pegetha, praying you're hanging in there ok..... 


    LaVae, i think the bone pain in the legs and feet are pv related, seems several of us here deal with that. I understand that getting older, pains happen... it's hard to explain to those who don't have this, that this is a 'different type of pain!' yep, i deal with that as well, and alot of problems with my feet, (i wished i could just walk on thick cushions always! seriously!) my family knows i have this problem. alot of ankle problems too and calf 'yes, Bone Pain'  and i get much muscle spasms, Not.. cramps. Spasms, randomly anywhere, chest, legs, stomach, even back.  not fun........


    tired,... need to go to bed......... goodnight everyone!  and we haven't heard from several in a long time. hope all is well? please post.... remember our LLS board is our sharing and growing place!   God Bless everyone!!  

  • 1,271. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Laflemke Registered Users
    Currently Being Moderated

    Hi,  well I had my Dr appt today and it went good.  My counts are:  white blood count - 3.5 (a little low); Hemoglobin is 15.3;  hematocrit - 44.0 and platelet count is 174.   Dr  says he wants me to keep taking the 1000 mg HU a day.  So no phlebot this month...   I told him the headaches are back and asked if there was anything I could take for it...  I have tried Aleave and ibuprofen but that just don't cut it.   He suggested some migraine meds,  have any of you found something that works?  


    Dee, I hope and pray that you will be able to get the Jakafi!  That is insane, that it would cost so much!  Also hope all goes well with your daughter!  I know how hard it is to see your child go through fought times whether with health or just life in general now matter how old they are!!!   Please do take care of yourself too though.  


    It is late and I still have to clean my kitchen, we have a birthday party here tomorrow night so I've been getting all the food ready.  Grandma's house is the party house cuz we have the most room for everyone.  :-)


    take care everyone!   


  • 1,272. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Thanks to everyone who sent prayers and support.Karen,s surgery went well with no lymph node probs.But she is in alot of pain as one can imagine.Still try to get some phone connections to jakafi assistance .Had the 3 cat scans yesterday so i will wait to see if theproduce anything before i make a expensive decision/

    LaVae,,,Did the doc reply re: your white counts ?I alsohave terrible bone pain mostly ankles legs upper back ,and hands,guess its just the bone marrow going bonkers.Its hard for me to want to pay alot of money for something that will not cure.On bad days i think about calling and saying ok and on not so bad days i tend to get greedy.I,m surprised they have,nt called yet to see if they should deliver.I,m having such a hard time with this.Has anyone reading this ever heard of radiation for spleen reduction?Just throwing this out there.

    Linda how is the shoulder?Are things looking up to be able to stop work ?

    Many here have done research and phone calls on my behalf and i,m so touched by that.I,m grateful to all of you and sending healthy hugs your way.tata=D

    Ps Nicholas 9yr old grandson saw his mother being wheeled out of recovery and he just totally broke down.Never even as much as seen her sick before so this was rough on him.But he is better and hopefully helpful to her  because the healing will be a slow go.

  • 1,273. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Laflemke Registered Users
    Currently Being Moderated

    Hi Dee,   Glad to hear your daughter came through surgery   Will continue to send prays your way for your family.  It a lot to go through on top of your health issues.   Please take care!   

    I did ask the Dr about the low white blood count,  he said that the HU will do that and for right now he would like to wait to see if it keeps dropping.   He also said that the bone pain is a common side affect of the bone marrow trying to produce the blood cells...   I have to admit I thought it meant that I was getting  myloefibrosis  , but he said it doesn't mean that.   I think I was worried because I recently found out that my grandmother had developed myloefibrosis before her death.  Not sure how long she had PV before she got myloefibrosis.  She died in 1984 and I think she was about 64 when she was first dx'd with PV.  So I guess it is just in the back of my mind that, that is what will happen to me and thought that was the first sign. 


    Well I need to run, have a meeting to attend.


    Take care,


  • 1,274. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bubs11 Registered Users
    Currently Being Moderated

    Dear Dee,  I am so, so happy your daughter's surgery went well. it is so hard for us to watch our children go thru this,   I had to see my daughter through three surgeries a few years ago, so I really feel for you, and of course Karen.  You are really strong and I know you'll be a fantastic support for her.  I am not sure what is happening with me.  all of a sudden about a weak ago I started to get really bad back aches come the afternoons, and at night my legs feel bruised although they aren't.  If I take my foot and rub it along my shin, that's when I feel as if I banged it or something.  during the day it doesn't seem as bad.  My doc appointment is only on the 29th so I guess I will ask him if he knows what's going on.  how is everyone else?   Take care,   Carol

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