The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,095. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Laflemke Registered Users
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    Hi All,


    Peg- glad to hear your  dr appt. went well!  will keep you in my prayers that it continues!


    Neil - I agree with Peg,  you should not have to wait that long to get in.  I have to go to what the hospital calls a treatment center for my phlebots, but they generally can work me in with in a couple of days.  Just curious, how much do they take off?  They take 500cc off me each time and then I get 500cc of fluilds after.  Yes, push them more to get you in right away.  Shouldn't have to suffer with the headaches and such!


    Dee - oh man, I am sorry for you loosing Murray,  I hope and pray your daughter gets good news (or at least as good as it can be) on Friday. 

      Yes, I am taking Hydrea, dr recently upped the dosage to 1000 per day.   My spleen so far is ok, or at least I think so,  dr has felt it and has not said it was getting large.  So I take it as no news is good news.  :-). 


    Mimi - I just looked up myelofibrosis, and that sounds worse than PV!  I hope and pray that the Jakafi works, and you are ok.


    I know I have not addressed everyone, but it is getting late n I have to get up early tomorrow for work.  

    Take care everyone!!


  • 1,096. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!  I wasn't planning on posting tonight (was just catching up on post through my email) but.... after reading all the love and support everyone is showing here for one another,... I just had to hop on and say 'How much i love this forum!' all of you are just Amazingly Awesome! this is what's it's all about! Listening, Caring and Supporting and Encouraging one another! God Bless each and everyone of you!!   I pray for everyone here, and my heart breaks when i know of some whom are in pain for so long or not getting the treatment they need and deserve. Know that i care and i lift you in my prayers for better tomorrows!!  


    Pegetha, i have been praying much for you my dear! I'm so glad to hear a good report of the Jakafi! I'm so proud of you for hanging in there, as i'm sure there was side effects to deal with.... I'm so sorry though to know that you now have bronchitis, Please take care of yourself! get plenty of rest and i will pray specifically for that.


    Dee, i'm so sorry to hear about your daughter with breast cancer, i know how hard it is to go through that. I will pray for her and the family, such important decisions to be made. and Always praying for you sweetie!   Is the spleen still getting more enlarged than it was? or just goes up and down?


    Colleen.... thanks for posting, looking forward to hearing from you again on your spring break! just glad to know you are hanging in there!


    Mimi, wonderful to see you here mi amiga!   We truly miss you when you aren't here.... Hope all is coming along well with you.


    Patti, please take care of yourself!  Not sure what is going on, but i will lift prayers up for you and your family.

    You are one of strong gals here!! hang on my dear.....  you will overcome whatever it is!


    Julie, i'm still praying for you, i know you are going through so, so much. Hang in there!


    Neil, if i remember correctly... you have kaiser? if so, that's what i used to have (different location of course) but when i needed a phleb. it would be scheduled that same day (then later on it switched) but, would still be within a few days. Maybe you should stress to your hem to please ask the phleb. dept to get you in asap as you are in need of the phleb to relief the complications you are having. Glad you still are getting your bike rides in, tell Julie i send her a hello!


    need to get to bed.............. goodnight all.

  • 1,097. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    quick question....

    is anyone by any chance having toe/feet numbing??  i've been having that on my left foot (not the one with the knee problem) and it's not going away, been there for sometime now. researched and found that:

    "Certain anticancer chemotherapy medications also commonly cause peripheral neuropathy, which may include numbness of the feet and toes. "    Curious to know if i'm the only experiencing this?  dont' know if it's pv related, HU related or other... hmm........

  • 1,098. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Sarah   Yes yes and yes....Also the bones feel like someone is crushing them.I have started to take magnesium can.t say right now if it helps but i hope soon it will.With our weather going form 50 to 80 then back to 50 for the high Sat,My feet seem to be bothered from the heat.Also i cna feel my counts are going up.Its been almost a year since i was over phlebotomized and it took this long.My last cbc i,m still waiting for.I called med. records and hse is good about sending it out but its been over a week now.I,m sure the next cbc along with the appt,. with local ONC.will show an increase.I would be surprised if there was,nt.I have that nervous energy also last night my heart was thumping when i went to lay down.Sooo might need a phlebot myself.Neil i hope you can get a phlebot soon with no probs.Sarah i believe you need one as well.This is what i believe causes the tingling and for me pain in the bones .Also since the weather has gone tolerance for heat is terrible.Does anyone else find that heat bothers them alot more?

    I believe the issue with the neuropathy is from PV seeing i had it before DX and before HU.

    Jules your in my heart as well as everyone else and in my prayers...Huggers tata=D   DID,,NT PROOF READ SO GOOD LUCK LOL

  • 1,099. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    hbneil Registered Users
    Currently Being Moderated

    My phlebotomy is scheduled for today.  Hopefully it will take care of the headache I have.  In the past, I have gotten an appt within a week of my CBC, but the last 2 times they've scheduled it about 3 weeks after my CBC.  Next time I'm going to press for an earlier appt.  My HCT was 47.6 on 3/2 and it is probably 48 or higher by now.


    LaVae,  They take 500cc from me as well.  The first few times back in 2009, they replaced the blood with saline.  Now they just check my blood pressure afterwards and if it is acceptable, I'm free to go.  I don't have problems with dizziness etc after a phleb.


    Sarah, So far, I haven't had any foot pain / problems.


    Take Care Everyone, I'm thinking about you!


  • 1,100. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    hbneil Registered Users
    Currently Being Moderated

    P.S.  Sarah, good luck with your Ortho appointment today!

  • 1,101. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    Hi Everyone I'm Brian,

    I've been following your discussions ever since I was diagnosed with PV on Nov. 9, 2011. I'm 61 years old, live in Pennsylvania,  and just retired after 40 years last July. I knew that I had a high hemoglobin count for at least  3 years (CBC) but refused to believe it was anything other then that ,since I had no identifiable symptoms. Hgb. 19.8  Hct. 55.9 When diagnosed by my Hemotologist, head of the hospital clinic, I  went right to the internet to do research. I began phlebotomies and have had  7 so far.  He put me on 500mg. of Hydrea daily for a month. I was frightened to take it at the start and waited a week to get the nerve to start the med.  I tolerated it well and since then have had it raised to  1500mg. 3 days a week (M-W-F)  and 1,000 the other days. Just this week I was tested and the Hgb.16.5 Hct. 47.4. The Dr. came out to speak to me and said stay on the present doses of Hydrea. I asked him if I was in the early stages of PV and he replied yes.  I presently have few symptoms, thank goodness except for occasional fatigue. I have been following Weight Watchers and have shed 10 lbs. By the way, my Mom who will be 84 in June has ET(high platelets) for about 7 years now. This is always a topic for interesting conversation because of the hereditary factor. Hope everyone is doing well. One day at a time !

  • 1,102. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
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    Hello Brian: Welcome to our forum. I'm Patti, 59 yrs old, from Oregon, and  was Diagnosed in 07 with ET, and as of 2011 PV. We are all a close knit group who care about one another here. And glad you joined us. We try to help and support each other, and are here for venting, questions, etc. Neil will be happy to see another man on here I'm sure. The hereditary issues are always a question? It seems to happen once in a while, so I think we all have our families let their Dr's know about it just in case.


  • 1,103. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

      Welcome Brian...I,m Dee dx,x with PV in 2007 but ha high platelets as early as 2000 and spleen issues.I have a hard time keeping my counts UP to normal so i guess progression is the issue/Some have contnued high counts but mine have always given the docs a hard time.

    Not sure if you,d be interested but the "23 and me" genetic testing is free for all MPN patients.Just log on and request a spit kit.Maybe your  mother could also do one.The outcome is fantastic as far as traits , history,Carrier diseases and other matches.Its really well done and keeps going on.This will not be around forever and free is a good deal.Just throwing that out there for you and everyone else.

    My cbc was what i have expected but lately it feels like something is going on.The morphology increased and now has " polychromataphilia" (increased EPO???)guess the RBC,S from the bone marrow are leaving soon and are blue/grey.See what next week brIngs.I called my doc and left a message that mt drug store is only filling generic HU.(Not that it ever helped me) But i also said in the voice mail that i increased myself seeing the cbc was able to take it and if he had an issue he could call me.Guess this is the way to go.He has,nt called as of yet and i did,nt expect him to.He will get my bill next week lol.huggers tata

  • 1,104. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Geez Dee.... feeling like someone is crushing your bones sounds mighty intense and painful   I just feel so bad to know that you have to go through so much pain. and Dee, i think we know when we feel something going on inside our bodies better than the doctors, one can just feel it sometimes! as to what you mentioned on your counts, i'm lost there.... but i will read up on it to try and understand. Please keep good taps on your increase in HU, but i know you know that! I will be praying for you my dear.


    Hi Brian! I'm Sarah, dx'd with pv in late '03. was with phlebs in the beginning only (and aspirin of course). and in '08 had to start taking HU. and as everyone else, found out that i've had pv since way before diagnosis. It's just 'when' the doc's finally notice that those #'s have been high for quite sometime, and one of them finally waves a red flag!..... Brian, sometimes it takes awhile for the hem to get the counts at normal level, so as the HU begins to settle in and start to work more in you, hopefully your HU dose will be able to be lowered to a lower dose. I'm glad you are tolerating it well.

    and you are right, the hereditary factor issue is still unknown, although we are hearing of more people who are running across it? Hang in there, and hope it keeps going well for you. And glad you found this forum, it's a great support to everyone here!


    Thank you Neil, Dee, Patti, weePea and everyone for the good luck wishes on the 'Finally getting my Ortho. appt.'  well, it turns out that i don't have a meniscus tear on my knee after-all. They were very nice there and they examined my leg and knee very throughly. She said what i had was 'Patellofemoral  syndrome' (on knee) and 'Iliotibial band syndrome' on the thigh/leg area. also,...Arthritis.   She said i could get a cortisone shot if got worse (but i don't feel i need that) and i was given exercises to do. and return in 6-8 wks to see  how i'm doing. Also that i could use 'Capsaicin Cream'    has anyone ever used that? I read up on it and it sounds quite interesting! but, says not to use if you have or are being treated for high blood pressure (which i am).         


    Linda, i've been thinking about you.... how are you doing? and how is your daughter?  hope your work hrs are settled for you.


    weePea... i always love reading your post! i'm sure you are still making your patients feel their burdens lightened with your beautiful wit!   Laughter is 'Medicine to the Soul'   and you are a blessing to many because of it!   and how is Charlie doing? he must be getting big!....


    Mimi, i'm glad you are getting some relaxful reading time in! pretty soon it will be the time of season when you can go swimming under the stars again!   how relaxful and wonderful that will be!


    Patti, hope things have improved for you my dear.... I hope you are getting to enjoy your wonderful family!   take good care of yourself!  hey, so is your knee not give you anymore problems since your surgery?  i sure hope not.....


    Pegetha sweetie, i lift prayers for you   I know it gets really tough on you at times, you work so hard. Hope you get some relax time this weekend. and you have spring break to look forward to soon!


    Hope everyone has a great weekend!! I seriously don't know Where this week went!!!    Take care everyone!!

  • 1,105. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    Hello all!

         My Goodness! Lots going on here. I've been away from reading the posts thoroughly, as I was reading a book called "The Help" (loved it), but I am reading real slow now and badly, too--getting my words all mixed up and I used to be such a good reader?. I reckon it's due to the lovely aging process as it robs me of my eye sight more and more with each passing year! But, it's all good!, first of all, I would like to:

         WELCOME BRIAN!    

         And that's a big ole hearty Southern welcome from Mimi (61) way down yonder in Southeast Louisiana in a tiny, quaint and very dear town called "Ponchatoula" that we just adore, which is located 45 minutes west of New Orleans! We very luckily moved here from NO 2 months before Katrina and I still count my blessings for that timely move. Guardian Angels on our shoulders and we figure it was both of our late mothers pushing us out of New Orleans.

        Anyway, welcome to this GREAT group of folks here. This forum has been a Godsend for me and I bless the day I found it. You've already had some great help and guidance from lots of our great folks here. I was dx'd with PV on '01, but had it for abt 4 or 5 yrs before dx due to all the symptoms i was having, but my PCP did not pick up on it. Changed docs finally and I was dx'd the next day! Treated with phlebs first--lots and lots and I felt better and better with each one. After 4 or 5 yrs of the bleeds, my arm veins started shutting down on me, so doc placed me on 500 mg's HU for abt 7 yrs. My worst symptom was the maddening itch that goes with PV--some have it--some don't! Each case of PV (or any on the MPN's are unique unto themselves). The itching is still a bother, but very seldom and it's mainly after a hot shower. Presently, my PV has progressed into Myelofibrosis which is sorta expected after having it as long as I've had it--BUT, I speak only for myself and no one else.  I am not on the new Jakafi drug as yet, even though there was a sense of urgency that I obtain the drug through the help of my HEMAC. So, after I received it, I didn't need it. In the interim of my waiting to get the Jak drug, doc put me back on 1000 mg's HU for one month which shrunk my grossly enlarged spleen (25.4 cm's) and eased all the severe bone pain which comes with MF. So, I didn't need it then. he is waiting for me to get bad again--I don't have a clear understanding of any of these MPN's!! Now, I am not as knowledgeable as most of the folks here, and you have received excellent advice from many here. The forum is a great place for whatever ails you! You can share anything here--be it happy or sad, vent, laugh, cry, bitch, joke, speak of your family and life style--it's whatever you need it for. I love all my extended family here, great friends I have made. We just pull up our cyber chairs to Dee's "Cyber Cafe" and jabber jaw about everything!......Interesting that your mother has ET. It is not supposed to be genetic, but as someone mentioned earlier, we are seeing it more and more? Anyway, I hope that she is faring well with it and I do wish her well. Also, I want to congratulate you on your weight loss--10 lbs--that's quite a feat (dieting is so hard) and you should be very proud of yourself--keep it up--Weight Watchers is a wonderful group--a very successful program. (One thing abt my posts is that I tend to be somewhat long winded)!!! And I apologize for that!

         I will say that one of the main things with any major medical condition is to find a doctor that you feel comfortable with, and that can be a problem for lots of folks. You should try to get copies of all your lab results and any test results to keep a journal of your progress and for comparison--it helps a great deal. If you ask for the copy on the day you receive the results, they will be given to you at no cost. BUT (in some facilities) if you request a copy a week or so later --some places will charge a fee for the copies. I think that's absurd....but.........

         I've babbled on and on--bringing it to a close. I wish you well and welcome you to this great discussion board that the LLS affords us. I find it to ba a blessing and I adore all my many friends here and appreciate that the LLS makes it all possible.

         Fondly, and many happy trails, stay out of harm's way, and I am out of here! (Amen!)




  • 1,106. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    Hello All:

         I have read all the posts and am up to date, but I will write y'all at a later date. There sure are a lot of stuff going on with a lot of us. In the meantime, you are always in my thoughts and prayers. I love each and everyone of you and always wish you well. What a great group of folks y'all are...................And, PS: still no developments in the investigation of Jules' nephew--hold her in your prayers........She is holding up as best she can and is taking care of herself. Such a tragic situation.

    Love, mimi

  • 1,107. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
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    Sarah: I'm so happy the ortho appt went well and they treated you with kindness!!!  I'm happy to hear it wasn't a miniscus tear. I've never used Capisin, but there are many other arthritus creams on the market that wont raise your BP. I use a  liniment, that works very well that has eucaliptus/menthol, and it only has an odor for about 5 minutes, then you can't tell you've used it.  I'm sure you can find something that will work for you!  Big Hug's, Patti

  • 1,108. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    hbneil Registered Users
    Currently Being Moderated

    Welcome Brian,


    I'm Neil also 61, diagnosed with PV in summer of 2009.  Also had a heart attack in 2000 and currently have reduced kidney function.  I'm currently on hydroxyurea 500 mg 4 days and 1000 mg 3 days, 325 mg asprin, plus other drugs for my heart condition.  I used to live in Pennsylvania in a suburb of Pittsburg.  I went to Pitt for my masters.  Currently I'm living in southern California - Huntington Beach.  I'm a big proponent of keeping active in spite of my medical issues.  I played soccer in 2 leagues until 2009.  After PV diagnosis, the doc thought all the bruises from soccer were too dangerous since my platelets were very high.  Now I ride my bicycle about 4000 miles per year.  Not only does it keep me in shape but it helps keep my weight down.  I try not to let PV affect my life any more than what I have to do to treat it.


    Regarding the hereditary factor, 23andMe is doing research on that.  From their preliminary research if one specific gene has a certain value, then the person has a greater than average chance of developing an MPN sometime in their life.  ET and PV are both MPNs.  PV itself isn't hereditary but we might be passing on a greater chance of getting it, if we have that specific gene.  23andMe are looking for people with MPN to further their research.  If you want, you can get a free gene sequencing if you have an MPN.  I signed up for the service, but haven't gotten the test kit yet.  All they need is some saliva to do the gene sequencing.  I signed up because I have 2 children, and if the research proves to be true and I have that specific gene, I want to warn my kids to be on the lookout for MPNs.  Their basic research is that there is only about a 2 times greater chance of getting an MPN.  So instead of a 1 in 200,000 chance of getting PV it might be more like 1 in 90,000 if you have the specific gene.  All of this research is preliminary.  More study needs to be done.


    The following is from the 23 and Me website.


    Myeloproliferative neoplasms (MPN) are a group of rare blood cancers that includes myelofibrosis (MF), essential thrombocythemia (ET), and polycythemia vera (PV). These disorders are mysterious but we do know something about the genetics. There is a particular mutation (V617F) in a gene called JAK2 that nearly all people with the PV form of MPN have, and that many people with MF and ET have. People aren’t born with the V617F mutation, but some “acquire” it later in life in their blood cells.


    The rap sheet for JAK2 doesn’t stop there. In 2009 several studies in individuals with European ancestry found an inherited variant in JAK2 associated with MPN and the V617F mutation. A more recent study in Japanese MPN patients identified a very similar association. By looking at 23andMe’s growing MPN cohort (all of European descent), we found additional evidence linking inherited variation in JAK2 to MPN. In our database, people with the G version of rs12340895 in the JAK2 gene have 2.2 times higher odds of V617F-positive MPN.


    Sarah, I'm glad you don't need knee surgery.  I hope the PT and capsaisin help.  Capsaisin is what makes chili peppers hot.


    Enough for now, I've typed too much already.  Time to get ready for a bike ride with my buddys.



  • 1,109. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Laflemke Registered Users
    Currently Being Moderated

    Hi Brian,  I am new to this site also. I am so glad to have found it, It is so nice to be able to discuss, share and support each other.  My grandmother had PV and died from complications from it.   My aunts have told me a little about how she dealt with it, but they really dont know too much as she didn't talk about it much.  I know she had phlebots and I think she was on Hydrea the last few years.  I am the only other one in my family that has been dx'd with it (at so far)... Just luck of the draw, I guess!   :-).   I just hope that none of them do get this, especially my kids or grandkids.   I think I will look into that 23andMe site. 

    I have had some of the tingling on my feet lately.  I have also had some aching in my legs/shins.  I thought it was because I wasn't eating the right things or getting enough calcium.  Who knows, maybe That really is my problem.  :-).   

    Well it is getting late, so I will close for now.

    Take care everyone!


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