The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,125. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    Greetings ALL!

    I've been trying to make notes as I was going over the last page of posts so I could recall what to post!

    DEE: God Bless you! You always have the best way to put things--I am referring ti your great remark--"If it walks like a duck".......!!! I hope the urine test at PCP will show whatever t needs to......Hate for you to go back on the cymbatra as I know how it makes u feel crappy....but....

    BRIAN: The very first thing is to find a doc who you like, trust and feel comfortable with. If you don't feel "safe" with him/her at any point in their care, look for another. Another thing you will run across(that u have already mentioned) is that your friends won't think you are ill as there are no outward symptoms. They expect you to at least lose your hair! This is very common and we all go thru it. But, you DO HAVE a slow progressing blood cancer. Some docs just don't call it that, but there are not being completely knowledgeable abt it. It is a rare, slow progressing blood cancer. I've had mine for close to 20 yrs now (that would be counting the 6 to 7 yrs I had it before dx--my dx came in '01)--started out with PV and recently progressed into MF (myelofibrosis). I am doing well and living a normal life. And I'm 61! Presently I am taking 500 mg's Hydrea daily. As far as learning to interpret your CBC results, that will come in time. I had found a site that gave all the meanings of CBC results, but have no idea where it is--maybe somebody can chime in here. I tried to print it out but it would not print for me? I am certainly not as educated as DEE or PATTI--they are like experts as far as I'm concerned. And keep on coming back here for anything--info, Q's venting and laughing!

    I had something to say to La Vae, but I've forgotten it! But I hope you are faring well....

    LINDA: I am super glad your rotator cuff surgery and healing is going so well for you. Keep it up! Am glad your sister is doing well.

    I have spoken to Julie a short while ago, and she is holding up as best she can. I could hear pain in her voice this time though. It's so unfortunate and sick that today's society has so little regard for human life. The alleged murderers were high on meth-amphetamine and some girl asked them to do it for more drugs! Disgusting to me, as y'all will all agree I'm sure. She says the community outpouring of love and sweet calls and notes has been phenomenal and is helping the family cope.

    HEY PATTI! How great that you and Jay made the move to be with your other daughter and family and glad y'all made The trip safely. Keep up all your excellent research and advice here--love ya gal!

    NEIL: Hope things turn out better with your urine--I don't quite understand what the deal is--just want it to go away! My regards to Julie.

    Okay, that's abt it from me---SARAH: Hola mi amiga! I hope you are faring well.....Love to all, mimi

  • 1,126. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    well, i felt a rush of wind blowing me down today! and then realized it was our Sheriff Dee a shaking those sheets again! Thank you sweetie! every so often i need a kick in the tush to bring me back to reality!   I guess we all get a bit too busy sometimes... but, i'm sorry i stay away at times, as i know how important our support is to each other.  As you said LaVae, i too (as eveyone else here) am So Grateful to have everyone her to talk too. You are all truly my extended family! and i Thank God for LLS for providing us with this wonderful site, and for all the wonderful friends i've made here.


    Julie, I continue to lift you and your family in my prayers. And i pray that you will take care of yourself even through this hard trial you are going through. I hope the doctors have maybe  given you something to help you during this time? I myself have taken Lorazepam in the past when i needed it due to high stress. And as Dee has said, medicines don't mean we are depressed! sometimes we just need it for different reasons.

    And let Alicia bring a smile to your heart!   babies have a way of naturally doing this!


    Dee, i hate the fact that you are having the horrible squeezing feeling again!  I know you are one tough cookie.... so if you say you are in alot of pain, i know it's bad   I'm praying for you sweetie....  and i hope that the urine test will be of some help too!  and, i know you don't like having to take the cymbalta,  but.... please don't endure more pain than is necessary.   And thank you for all your support always


    A few (Dee, Patti, Mimi, others) have mentioned the importance of getting our hem/onc doc's to state that MPN's are indeed 'Cancer!' ......... and i must echo in as well, that i too agree with this!  The importance of it being stated correctly as 'Cancer' is for many reasons, for the Insurance Co. to cover certain benefits, (care, treatment, meds....)  and the research to be continued!! just more reasons than  we realize.....  So to the newbies, whom are afraid of the word cancer.... Please understand, that we have what we have, and a word in itself 'won't change our health personally' but.... it can tremendously change our Treatments we receive and need. don't think i'm expressing myself as well as i want to, but i think you get the picture.  To me..... 'Fear of the unknown' was one (and always has been) one my hardest things to deal with in life. And i find that the more i learn about the MPN's, the more i empower myself of and i feel somewhat more in control (at least of what to expect of my docs, and what to agree with or disagree)

    for example..... i have been told before by resident doctors, to take Iron supplements for the anemia. However,... i knew better! and refused to listen and demanded to speak with the Hem. in charge. and they agreed with me.... Don't take Iron! this would backfire my platelets!  with this said..... i hope i made some sense here!  (i sometimes speak in riddles.... )  lol... 


    I decided to Also join you others who have requested the 23andme!  I already received my kit! (it came really quick) but, i haven't had time to go online to read whatever needs to be done first. But i'm excited!  thanks Dee for helping me out with the info!


    Pegetha, i'm worried about you are you doing sweetie?  I hope things are going well for you with the Jakafi? I know you are really busy and tired, so you don't need to answer. Just know that i'm praying for you!


    Mimi, mi amiga.... I'm well for the most part   I've just tired, but i have been running myself a bit too much lately and will try to slow down a bit. (our Sheriff is after me on that!)    I'm glad things are good with you!.....


    Neil, sorry to hear you are having some problems with your kidneys   hope things improve there, i will lift prayers for you.   I myself had a low GFR on my last hem appt., so said she wanted me to go back in one month. so i will see what this month shows?.......


    Patti, i'm glad the trip went well! and glad you are getting  to spend some time with your daughters before you make your permanent move. Praying things keep improving for you!


    okay,.... sorry i didn't mention all.......... but i'm tired and want to rest a bit before going to bed. 

    Take  care all, and God Bless you all    

  • 1,127. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Lavae: Yes it's a CBC with differential, and I've had all but the last one before on my results pages. I haven't yet researched what that may be, but I will. I worry when those pesky tear drops show up though. Glad you found us here, and hope we can be of some help and support. 


  • 1,128. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Sarah our busy one.Doing so much for everyone else.Now its rest time and deep breaths and short walks after a long nap.Please rest and be good to yourself.

    LaVae i,m glad you feel the same way we all do about the support we have here.We always cant answer all questions but i know alot of us will research and try to figure things out.But its more important to know that you can come to a place where everyone knows how you feel and can vent without a being sorry.

    Jules my heart and prayers are with you and i know i sound like i repeat myself but i do pray for you and the rest for the terrible times your facing.Just know we,re here and support you and care for you.Feels helpless at times not being able to do more.

    Neil it was me asking about the kidney thingy.:)

    Mimi hope you get more answers at your next appt.

    Pegetha...I know your weather is brutal and i hope everything calms down soon also  with the way you have been feeling.

    Patti yea !!! you made it.So glad it went smooth.Now you can relax a bit.Give Max a doodle a hug for me. ok.

    Well coffee is on...or tea Glad to see people back on.Arms reaching out for a group hug tata =D...PS.   Hello to everyone else...i really need some coffee!!!!!

  • 1,129. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Most of the morpholgy is about the shapes and sizes of the rbc,s.Sometimes they change from one cbc to another,But it is what it is lol.My rbc is shooting out fast and "blue"+polychrom..also aniso ,hypo, poik,, micro lg platlets.Who would of thunk we would be talking in such a manner lol.

  • 1,130. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    DEE and PATTI: I am so proud of all your combined research and knowledge of the MPN's on every angle of them. The both of you sound like proper scientists in a lab! I know how complete and always ongoing your time is spent on learning more and more--all for the benefit of all of us. So very proud of you. It is true that in a lot of instances, y'all do know more abt MPN's that some docs do. I get to a certain point of trying to follow and comprehend things and then my mind shuts down! Y'all make me  so very proud. And I personally thank-you both for all the research for us all to benefit always, your pal mimi.....Patti, hope you're enjoying being with your other daughter and family--my love to you and Jay and a hug for Max............

  • 1,131. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
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    Miss Mimi: Thanks for the kind words. I can only speak for myself, but I do this research to be sure the Dr's know what they are doing to me. I want to be well informed as I can, so I'm not confused when they want to do something different or change things. I also like to know the info on any meds they might suggest as well as posiible side effects too. It's fun to see them give me a look when I know about something they didn't think I did, LOL. When I went to the ER a few weeks ago for possible pnumonia, I had both ER Doc's, 2 nurses, an X-ray tech, and the lab guy who took my blood in my room having me explain what an MPN was, LMAO. I thought it was good they at least wanted to educate themselves, and not make light of it instead. Knowledge makes me feel like I'm doing something , even though there's not much I can do.

    Big Hug's : Patti

  • 1,132. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    Yes, PATTI, how wonderful for you to be so much more informed than the docs, nurses and so on down the line. I ran into that when I was in ER last yr for pneumonia and the cocky ER doc (when I told him what I had) said "never heard of it!". I said I don't doubt that! It's just absurd that so many medical professionals have nary a clue as to what a MPN is!? My former doc who I finally broke away from--she had no clue abt PV--she treated it so non-chalantly (sp). But you and DEE are doing so much to empower us with knowledge and I thank-you for doing so and appreciate all your excellent efforts. I can recall just a few yrs ago how we were all struggling to find out what we were dealing with! And I love that you can astound the docs with your knowledge and teach them. My brain goes numb when reading too much over my head and then my efforts to improve my understanding tend to backfire on me! I can't thank you and Dee (and many others) for all your guidance for the rest of us. You've come a long way Baby!

  • 1,133. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated



                                  MUCH LOVE,   mimi

  • 1,134. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    lkbanks Registered Users
    Currently Being Moderated

    Happy Easter Friends.My God Bless You and keep you safe and well.

  • 1,135. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

                                           HAPPY    EASTER  !!              EVERYONE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!




  • 1,136. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Natalie5 Registered Users
    Currently Being Moderated

    Happy Easter everyone! Hope you all had a great day. I have a quick question I wanted to ask you guys.

    I had my blood work done on Friday.. Platelets were low 64, crit was 29, WBC was low but okay. My ferritin stores are low. They are 11. And I have been taking iron supplements for three months. So, my doctor  wants to do an infusion of iron with a drug called Infed. He said it takes about three hours to administer and that most people tolerate it pretty well. Also, I have been feeling kind of bad and he thinks it will make me feel better overall. What I have read online is that you feel horrible for a few days, lots of vomiting and GI problems.

    My question is ...Have any of you had this infusion? I realize that those of you with PV probably wouldn't need it, but my fellow ET friends may have had it. 

    Also, some good news, I had a carotid ultrasound on Friday and the thrombus that caused my bad TIA (that was in my carotid) had resolved! The plavix and aspirin therapy must have worked! As my neurologist said "the time bomb is gone"! Yay! Such a huge relief. One thing down, going to see Dr Mesa on the 24th, hope he has the rest of the answers.

    Anyway, I hope you all had a wonderful Easter!

  • 1,137. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Natalie5:  All the experts say that taking iron supplements are a very bad idea, so you should check into that. Also as far as iron infusions, I've had "48" of those in the last 4 years. The Mayo specialists and my MPN specialist Dr. and also Dr. Mesa has made me promise NOT to have these again. I don't recall your situation, but my suggestion to you would be to ask Dr. Mesa when you see him about this.  Could you tell me where you are going for treatment???  The mountain picture here looks like Mt. Hood in Oregon, which is where I have been since diagnosis. I was diagnosed with ET in 07, and PV in 2011. Write all your questions down so you won't forget to ask things. I hope I was of some help, and I think you should hold off on the iron infusions till you see Dr. Mesa. Or call him and see what he thinks before having this. 

    Patti, 59, ET 07, PV 2011 Jak2 neg. 

  • 1,138. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

      Natalie...i agree with Patti.Please check with Dr. Mesa before taking iron or having infusions.Are you on any meds.? Low ferrtin can also be from intestinal conditions and digest tract bleeding.So i would throw that out to your docs to check first before anything. Your counts are low but if your opn meds that would explain part of it..Please take care.P.S also if a women has her period (heavy) at the time that would also show low levels.I hope they check everything .Huggers=D

  • 1,139. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Natalie5 Registered Users
    Currently Being Moderated

    Patti and Dee...Thanks for your quick response. You guys are the best.  I am 43 have had ET for about 20 years. I also have factor XI deficiency (hemophilia C). I have been on HU and/or agrylin for the last 11 years. I started aspirin after my first  (small) stroke about 5 years ago. In December, I had a really bad TIA, and I was in the hospital for a few days. Thankfully, it resolved, and now the thrombus that was in my carotid has resolved too. Now I am on HU, agrylin, plavix, aspirin. I am so anxious about having another stroke/TIA that my doc is keeping my platelets low. They were 64 this last visit. They went from 220 to 64 in two weeks with just one pill difference. Very frustrating. Anyway, my ferritin could be low because everything is getting suppressed with the meds. My ferritin levels are actually lower than they were in December, even though I have been taking iron supplements. I am not that anxious to get the iron infusion, so I think I will  wait until I see Dr Mesa on the 24th and get his opinion. I like my hem/onc, but I think my case is complicated and I really want an expert! I am in TN, but am travelling to Scottsdale to see Dr Mesa on the 24th. It has been quite a challenge to get an appointment with him! Lots of records sent beforehand, and then they wanted to schedule me with a different doc. But, I said that I wanted to see Mesa! So, I hope he is as good as everyone says he is! I have got a list of questions ready for him!

    Also, I found lots of info on iron supplements and PV (not to take), but no info on iron and ET. Why do you think it so bad for ET patients to take iron?

    Thanks for all of your help! You guys are a wealth of information!


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