The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,065. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    ElizabethP Registered Users
    Currently Being Moderated

    Thank you writing back! I'm 49. I actually came up with the diagnosis myself after a year of serious symptoms and at least 13 years of the disease given my platelet counts, which means I'm not feeling great confidence in doctors right now.  I remembered a neurologist at Univ Michigan Hospital telling me six months ago that my platelets were always high in my blood reading sin my chart  all the way back 13 years and high platelets continued. I asked her if we should do something about it and she said in a flip way "I don't know I'm not a hematologist" so I assumed it wasn't important. When I went through another bad phase a month ago, I started looking up diseases based on any fact about my body and came up with ET or PV and contacted a hematologist. I had "top" infectious disease doc, cardiologist and neurologist at the University of Michigan hospital all trying to figure it out and they didn't. Over all these years they have been around 450, 480, 570, 620 etc. then normal 380 occasionally.  So I have had this for at least 13 years without treatment.  Last February I had what must have been a stroke, my 4th and 5th cranial nerves were inflamed on MRI and I was on medical leave for 3 months. I was totally wiped out and I've had joint pain, really bad headaches, pain behind my eyes, numbness and tingling and nobody knew what it was. I went to back to work (I'm a professor) but have been struggling. I have four kids, three middle school girls at home and my "regular" life has energy demands I can't meet anymore. I was treated for MS with injections for 5 weeks before I went to a specialist at Umich and asked for more testing which showed I don't have MS!  I had 19 iron a few weeks ago with normal so should I be taking iron? The hem doc won't answer any questions until I get marrow back. he has a PA talking to me who seems to know nothing. The biopsy says 

    suggestive of, but not diagnostic for pre-fibrotic stage, primary myelofibrosis and that I have  "reactive-appearing lymphocytes"? I haven't heard from the hemoatologist yet, my neurologist gave me the biopsy report.....Should I not worry or worry?  What does it mean? Who in the blood cancer world does this problem best? Where do i go to get another opinion/perspective?  Beth

  • 1,066. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Elizabeth, i'm sorry to hear of all you've been through with all of this!   a 'Good Hematologist/Oncologist' is what is the most important thing to have! So where exactly do you live? I'm surprised that your neurologist gave you the biopsy report when he can't translate it! When is your appt. with your Hem??  and i'm confused, you said your hem. doesn't have the bone marrow report back yet? So is this a bone-marrow report that the neurologist got? I would call your hem. office and really push the issue of wanting to see him and getting explanations. By my experience.... the hem/onc won't want to give a diagnosis until several test are confirmed first, it took me a long time (or it seemed a long time to me!) before my hem/onc finally gave me the certain diagnosis of pv.  I will be lifting prayers for you Elizabeth, sounds like you are going through pretty hard times. Hang in there, as others have said, once the diagnosis is made and treatment is started, you will slowly begin to feel better (having some of the symptoms improved). The headaches for one! 


    I hope someone else will chime in here and help you better than i just did...... I just think that we can't jump to conclusions without the hematologist proper diagnosis. And Yes, sometimes we need to get a 2nd opinion! I personally got 3! but they all confirmed the first. But do make sure you have a good hem!  

  • 1,067. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Elizabeth: All this guessing could be dangerous for you. If you go to "" they have a number you can call to get someone to e-mail you a list of specialists. The Mayo Clinic in Minnesota has Dr. Aglew Terriffi, and he's one of the best, as well as Dr. Rueben Mesa at Mayo in Arizona. I would be contacting one of these Onc/Hem's asap, and they will have you send them ahead of your appt. your blood work and bone marrow results etc etc. This is not something to be guessing about, especially with your previous problems too. Hope this helps, Patti

  • 1,068. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Beth you sound like what i went through in the beginning with all the symptoms and they too was questioning the MS and even said i had fibromyalgia.Which i don,t.But please do NOT take iron !!!You need to get to a good MPN expert and we can help you with that.If a doc gets flip with you then its time to move on.They should of sat you down and explained everything.Especially with the past issues you had went through.Patti and even myself have some good contacts.So please give us your location and don,t be afraid to demand an easy to understand explanation.Please do yourself a favor and get copies of everything.Also breath ..then breath some more.Alot of us was on a wait and see period But it would be best if you had ONE doc handling the this.Prayers to you AND keep us posted.The bone pain  and headaches etc kind of suggests to me your not having proper treatment.If you have your blood work with you what is your HCT ????.Hang in there tata huggers=D

  • 1,069. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    lkbanks Registered Users
    Currently Being Moderated

    Welcome to all the new ones.T his is the place to come and find information from others in the same boat as you.

    Sorry for my typing,using only one hand.Had my shoulder surgery last week.Surgery went fine,but this big slang has given me a bad rash on my arm and the right side where it leans against my side.That is driving me nuts.I first thought it was shingles,and it might still be.I took a leave of absents from work until I get thru rehab.

    I will be praying for everyone.Have a Blessed Day.........LindaK

  • 1,070. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    hbneil Registered Users
    Currently Being Moderated

    Linda, I'm glad to hear that the rotator cuff surgery went well.  Take care of that rash.  Maybe you can get good and rested during rehab before you have to to back to work.


    Jules, I hope things are improving for you and your family.


    I'm doing just fine.  No problems.


  • 1,071. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    Hey Guys!

         I hope you are all faring as best you can. I hold you in my heart and prayers always.

         I am mainly posting on behalf of Julie who I spoke to recently and she sends all her love. She's faring the best she can under the circumstances, but said she is just not up to posting yet. She's bogged down with calls--she says people are calling out of the woodwork--folks she doesn't even know? "Bloody Hell"!

         They still have not found the body but do believe it was a murder. Here is how you can find the story and she asked that I post it.

         Enter into your search engine the following:     David Blenkinsopp missing male Western Australia

    and there are several links with stories abt the case. This is very sad and so bizarre, traumatic on the whole family.

         Julie went to doc the other day and she (doc) told her she was going to put her in hopt if Julie didn't start paying better attention to her OWN SELF. So, she promised she would get a grip and so forth. And she has--she's doing much better. Doc gave her a med to help her sleep, and that has helped tremendously. She's abt the same physically. She is one strong gal.

         But she sounded strong--no tears when we spoke, but we did laugh a bit. And she appreciated Chris (my hubby) having a chat with her to cheer her as well!

         I am praying that everyone is faring well and getting the care they deserve and need. That's it from me.

         Love to all.................mimi

  • 1,072. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    So many people having really hard times.My prayers go out for each and everyone.Thats not something i just say but actually do pray for each of you.My cbc is tomorrow and for some reason when i went to pick up my HU it was the generic form.???Not sure if its mind over matter but i feel weird when taking it.See what the cbc shows.

    There is something going on with the way i have been feeling but can,t put my finger on it.

    The "23 and me" says i have  jak 2 ( no kidding lol) and also have the genes for "ewing sracoma" which i believe is a childhood rare cancer.Does,nt mean anything seeing i did,nt have any probs growing up, but if it lends itself to the bone pain then it would be interesting.I,m also a carrier for"hemochromatosis".Also states my drug sensitivity to coumadin.There is so much info i,m still reading about it all.

    I take it with a grain of salt.Had 3 people contact me on the web page regarding over50% genetic match as a 3- 5th cousin.Nothing really panned out but thats not the reason why i did this.

    Besides alot of other things the biggest surprise was that i have some Asian influence in my genetics.Not having any family info does,nt help.But agn i did it for the research part.

    Anyone with MPN can get a kit mailed to them free of charge.Just log into "23 and me"  would have to google it.

    It would be a great tool for someone who is thinking of having children and is concerned about there MPN..One can keep everything private so there is no contact with other people.

    So if anyone who has had the reg HU and then started the generic and have noticed a differance could you let me know.Going to ask doc why he checked off generic.The drug is,nt expensive.Thank God.

    Hope everyone jumps on and at least let us know how they are doing.Vickie???? i,m concerned about the last time you posted you were getting so ill.

    Pegetha,please hang in there with the Jakafi.,Jules my heart is with you ,please try to take care of you.

    Everyone(((((( huggers))))))) and look forward to hearing from all of you. tata =D

  • 1,073. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Natalie5 Registered Users
    Currently Being Moderated

    Dee,.. I tried generic HU a few years ago, and my numbers were awful.  It didn't lower my platelets nearly enough, and very difficult to control. So, I went back to name brand and it worked much better. Now, I only take name brand.  Anyway, it wasn't as effective with me. I don't know how frequently you get your labs done, but keep an eye on it! Just thought I'd let you know my experience.


  • 1,074. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Natalie..thanks for responding.My labs are monthly.The spleen is growing as we speak but even the reg HU did,nt help.I,m going to push onc in the corner so either he is going to try something else or i will need to move on.It will take a week for me to get a copy of the labs.And i will see onc next month.4 years  taking HU and the same probs.Its the definition of insanity.Doing the same thing over and over expecting differant results.Now to explain that to the ONC lol.Hope all is well.tata huggers=D

  • 1,075. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Laflemke Registered Users
    Currently Being Moderated

    Hello,   I am new to this site, but so glad to find a site where I can talk with folks that have been dealing with PV also.   I was diagnosed with PV fall of 09.   I go in for monthly checks now and am taking 1000mg Hydrea per day.  However I still end up having to have a phlebotomy (500cc) each month.  I go in tomorrow for this months blood letting...  :-) which is good because the headaches have started.  My problem is I only seem to have one arm that the nurses can find a good vein in.  Anyone else have that problem?   I use to give blood way back when, and they always used that arm, so the scar tissue in that spot has been building for a long time.  Not sure what I will do if/when that vein gives out...   I have read different info about PV symptoms, but haven't seen a couple that I have, so I am wondering if it is just me or am I nuts?  :-) when my count gets above 15 not only do the headaches start but I get these sharp pains on the top of my head on my scalp and then I get hot flashes too.   Anybody else have anything like that. 

    Hope all is well with everyone.

  • 1,076. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Welcome Laflemke   thats alot of phelbots .Hows your platelets?I guess your talking about your hgb when you say 15. All those phlebots especially monthly sounds like a differant med might help and save you from all the needles of the phlebot.The differant feelings you talk about is common although not all of us share everything.Your not nuts.I,m sure others will join in to meet and greet.Once agn welcome and i hope things improve.tata =D

  • 1,077. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    ElizabethP Registered Users
    Currently Being Moderated

    I'm going to the University of Michigan Hospital which is supposed to be atop ranked place but the heme guy is a researcher and has yet to talk to me post diagnosis so I need a new doc there. He had his PA talked to be. They say it is early myelofibrosis.  I still go through bad headache cycles and I wonder what works for anyone.  Part of this struggle with this diagnosis for me is coming to terms with uncertainty. Its different.  How do you get used to not knowing if you will get very sick or be ok?  I have a good treatment idea that I'll post with a new line   Beth

  • 1,078. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!

    and Laflemke welcome! I'm glad you found this board, sorry you had to however. But you will find that you can share, ask, vent, whatever is needed at the moment, everyone is very caring and supportive!  Yes, i agree with Dee.... that is a lot of phelbs that you are needing on-top of the HU.  Did you used to just get phlebs in the beginning? and how long have you been on HU and at that dose? I'm concerned about your veins not holding up on you (i know others here have had that problem before). As for the headaches, i too get those when my counts go up. How are the rest of your counts? And do you feel you have a good hem? (sorry all the questions...) looking forward to getting to know you.


    Well, i went to my hem. appt. yesterday. And i got mad again.... i pretty much was accused of not taking my HU (or at least not at the dose i was told to)  which of course.... is Not true!! I am on 10 pills per/wk (think it's the same dose you're on Neil?) now the reason for her (hem) questioning me is: my MCV isn't elevated as much as she thinks it should be. And after (pretty much accusing me of lying!?) she said she thinks that my HU may need to be raised.  This is my counts.... Plts-456,  Hgb- 15.8,  Hct-47.4    and actually my kidney/liver GFR is at 42.2  and Creatine 1.38  Neut-76  and Lymph-15     So my #'s have been creeping up. But i'm concerned about my GFR, maybe i was just dehydrated when it was last done in Feb. (that's where these readings are from)  So now i need to return next month and see where i am at.    Does anyone else get accused of not taking their meds as told to?   Keep in mind, the place i  go to is 'student residents' so i often feel as though i am merely their guinea pig!  (not liking that feeling!) lol.... 

    oh, i had to pretty much pull her arm backward to get her to physically check my spleen area. and it's the first time that i've been told that she could feel it a bit enlarged.  but this hem. pretty much was smirking at any of my questions! of course.... 'anything i asked or said i was concerned about,... is nothing! i'm so sick of them telling me that!!

    does anyone else have numbing on their feet?? it's only my left foot more by the toes, it's been like this for quite sometime now.... but of  course,... 'it's Nothing!!' lol...


    Dee, Pegetha, Mimi, and all the others whom are going through such hard times right now, I am praying so hard for you everyday. Please hang in there!! and i'm so proud of all of you for your strength!!   (sorry i'm forgetting some of our newbies names at the moment) know that you aren't alone! 


    Take care everyone! God Bless you!

  • 1,079. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Laflemke: Welcome to our forum. You will gain friends here who will be supportive and can help in any way you may need. We all have such caring support with one another here, and I hope you will also.


    Pegatha: I've been thinking about you, and want you to know I'm here for any thing, vent, talk, yell etc etc.


    Sarah: I'm so sorry for all the mistreatment you get with those residents there. We could all teach them so much if they'd only listen!!!  Have you seen the ortho yet? There's always the City of Hope? You know what I mean. Love & Prayers,


    Natalie: I've been on the generic form of Hu hydroxyurea since 09, with no problems so far. Doses have been raised and lowered, but brough plts down from a million 200 down to now around 250. Hope it stays level for a while now?


    Jules: My thoughts and prayers are with you and your family.


    All my care and support to everyone here.   Patti ET 07 PV 2011, HU 500/1000 at present.

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