The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,290. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
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    Pegetha thank you for the thoughts you know i have been worreid about you also and worried about the blood counts going to far down to maintain the platelets.

    Brian we,re not text book PV..at least most of us.Its complicated as well as some of us in our own way.My husband is the worse listener on earth and has no clue about my pv/mf nor new liver problem ..why you ask( lol) it has to come from the garbage man  his foot doc. or anyone but me.He really never listens to anyone let alone let someone finish a sentence.so he remains ignorant to alot of subjects.But to listen to others desribe there version of PV when it sounds so cut and dry..well i guess it gets me going.Pv can lead to many things..for some of us.PV untreated cause strokes heart attacks  and yes even death if untreated for a long time.I have been researching and talking to othe groups about so many subjects that stem from MPN. diseases there is no one person that should describe PV as a black and white issue.Sure in the beginning i was a few phlebots and a few HU a week and still energetic enough to do what i wanted.Not saying that i don, t still try..God knows i push myself.But hearing from people who think its a walk in the park well..heres my shoes.I,m grateful that i,m not like the bald sick and young person there,But i have plenty compassion atop of wanting to be understood.,One day at a time ??/well sometimes its one hour at a time.even one minute depending on the situation.So we all feel fortunate to be here and be connected.I pray your disease( however anyone wants to describe it )stays and does,nt progess.I pray hard for everyone..So hang tough and sending mega hugs =D   PS PATTI  IS UNABLE TO LOG ONTO THE SITE >?????????????

  • 1,291. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    lkbanks Registered Users
    Currently Being Moderated

    Hello everyone,just checking in.I'm doing okay.I'm not happy that my shoulder isn't completely well yet.My motion is not a 100% yet.They tell me now that it could be up to a year to get full motion.Doing therapy 3 times a week and trying to work too.I made a decision to retire at the end of this year.We will try to sell this house and down size.I'll sleep in a tent if I have to.Tired of the commute and all the over time this job calls for.Don't get me wrong,I really love my job and all my co-workers,but the time has come.

    Hope Karen is doing better,Dee. and please take care of your self too. To everyone here I've got you in my prayers and take care.God Bless....LindaK

  • 1,292. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Dee, i understand where you are coming from, and agree with you. I know i've had people tell me.... 'oh, my (so, and so___ )  has pv, and they are fine! their life is normal and no complications! ....... (and i've heard the same sort of story before from someone, referring to a coworker) Well, i'll tell ya, it makes me want to shake them!! They just Don't get it!!!  First of all...... maybe that Co-worker> doesn't want to tell everyone every detail (because they wouldn't get it anyways!!) or they Don't get it, that No two people with any MPN's (or other cancers) are exactly alike in symptoms, pains and all that!  It's ignorance of the matter.... and therefore they shouldn't be making flippant remarks. It can truly hurt those who are suffering (or those whom know someone who is suffering from these cancers).  I would go on and on...... but, i think i've made my point.

     

    And i'd like all of my blood buddies here to know, that I hold you in my prayers.... and I'm so proud of All of you!!! You are very strong and courageous! And i thank God for the day i found this forum!!

     

    Pegetha, it's so great to hear from you sweetie! And woohoo!! you've been weaned off the HU!! great job my friend!! I'm proud of you! I can only imagine how hard it must be for you to pull the energy (as so many others here) to get up and go to work, and yet feeling no energy, and all those symptoms. Hang in there!!!   and i too hope and pray that one day..... not only a better drug be made, but A Cure to be Found!!!!  for all these horrible MPN's (and other cancers!!)  Cancer sucks!!! But........ WE ARE FIGHTERS!!!!    and we will pull strength from one another when we need it!!!

     

    Patti, if you can read the post (i know you can't post at the moment) ..... but know that i'm thinking of you and lifting you in prayers sweetie!!

     

    Linda, glad to hear that you will be able to retire at the end of this year!!  And i will be praying for your shoulder. Sounds like you are so busy with work, therapy and your home. Hang in there my dear......

     

    Take care all..........

  • 1,293. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Natalie5 Registered Users
    Currently Being Moderated

    Hi Everyone... I haven't posted in awhile, so I wanted to check in. Since returning from Mayo, I have had 2 doses of Pegasys, and the side effects haven't been horrible!  Dr Mesa wanted me to start at a low dose, so I could monitor my response and, hopefully, tolerate the side effects better. I had my third injectiion last night, and I am actually a little worried that it isn't working because I don't feel like I have the flu!  Hopefully, I will tolerate it well. I'm a little frustrated, because I have talked the Pegasys rep and she keeps telling me that "the side effects  go away when you stop therapy" . Ugh, I have to remind her I'm taking it for ET not hepatitis C. Also, I had my first iron infusion last Thursday. Dr, Mesa said I definitely needed an iron infusion, just three smaller infusions instead of one big infusion. He didn't want the iron to "rev up" my marrow too much.  And luckily, the iron infusion wasn't too bad. I didn't feel too sick after that. Although, my seven year old was home from school sick, so I didn't have much of a choice to feel bad! I had to take care of him!  Dr Mesa  still wants me to get a full Neuro work up. So I'm not done yet.

     

    I agree with you guys about how frustrating it can be to discuss our MPNs with others. I get so tired of people telling me you look great everything will be ok. They just don't understand.

    It seems like a lot of you are having a tough time. You guys are all in my thoughts.

    Natalie

  • 1,294. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Linda i,ll be happy to hear when you say you are retired.I know its been so taxing on you as well as Pegetha.I have been trying my damnest to hit the lottery so everyone can have the best ins.and retire early.Boy its a long time for the shoulder to heal.Prayers being sent your way.

    Brian i did,nt mean to sound angry but the timing was.. shall we say..not perfect.I,m having to keep info from my family for now about something new due to lack of the ablity to listen and support.I pray your PV stays were it is.

    Sarah i know you have been though the ringer with the hot topic of the week.Being judged by the way they think you look.Its great not to look like a chemo patient as long as the people close to you understand one still can feel really bad.Thats why this group is so important to keep going.

    Natalie sounds like you have been through the hoops yourself.Its gr8 to have Dr Mesa treating you.Be careful when the kids have colds and flu please.I know you are but Just dealing with alot of kids we become walking targets for germs.

    When people tell me i don, t look sick i say "thank you and thank GOD for that"Its not that we want to but being understood is so important.I,m very hush about how i feel now and even talking about things.Karen is doing better still in  pain but  doing alot of walking.Her hubby was home today so i did,nt have to go over there.I enjoyed the morning to myself.Went out to my garden and worked a bit, felt good to do what i enjoy.I hope everyone here makes it a point to do something that brings them joy.Not matter what it is.With that i,ll say good night and huggers.=D

    Mimi ,Pauline    helllooooooo....Patti i hope you can get back on its so frustrating when one cant log into our group.Hope LLS can figure it out.

  • 1,295. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    Dee thank you for including me in the last email ! There are never hard feelings on here !  I wish you and everyone else only the best of health and life. ! I retired from an Elem Asst.Principal position after 40 years of service last July only to find out in November I had PV. You can never ever plan in the game of life. That's why I always end my emails with One Day At A Time. My days are filled with remembering the HU and aspirin and more fatigue then in the past. I will be seeing my Hem/ Onc. tomorrow. It's a crap shoot as to what my levels will be. I always bring along the last blood test and get a copy of the new one to compare before my Doc. calls for me. Hope everyone on here a wonderful evening and a better day tomorrow !

    One Day At A Time !

     

    Brian

  • 1,296. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Just as a reminder to every one to listen to your body.There is alot of other situations due to PV/MF that can bring bigger problems and one has to be pro active.I was pleading with my doc for interferon.and he was against it all.Just wondering if the liver situation would of been differant.Still waiting for the results of all the cat scans.I also asked for something for fluids.They said no.After researching i have found out i should of been on a low dose of lasix.The instant weight gain and puffy face and pressure i knew was fluids i could feel it.Now i,m starting to lose some of the weight but still have the ongoing lack of urniating properly.Now i just have to wait so we can put the correct new disease name that goes with PV and get the proper treatment.My  ultra sound say,s cirrhosis but see what the catscans show.It also states to have cat scans done pronto.Thank god my pcp was in tune to my symptoms and already had them done.The million dollar question is how can someone with yearly scans end up with cirrhosis and no one spotted it???...does it come that fast??The spleen is a bit larger but not the cause of my complaints at this point..When all the ducks come in i will make a proper move.I,m not sure if i should be angry at the docs but it does,nt do any good at this point.Feel like im starting ll over again lol.Well tootles stay proactive and take no prisoners.  Huggers=D

  • 1,297. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    FYI there are a few links between PV..MF and liver disease one has a mutation of SLC30A10....Just emailed 23 and me to see if they can test for that.Fingers crossed.There are some other rare names of diseases linked but its too early to say which is which and what is going on.

  • 1,298. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    boy Dee,... you've become quite the lil' researcher! Proud of you! and hope that 23andme can run that test for you!

     

    and to everyone, after Dee's comment about listen to your body... i think i should share what stupid thing i just did!

    and that's the opposite of listening to my body!! I knew i hadn't been feeling 'Right?' i was having the feeling of my heart racing... very jumpy to any sudden noise, and once again feeling sort of numbing feeling to my left finger/hand and starting to sort of travel upward..... Well, i'm stubborn when it comes to 'me' and i felt i 'didn't have time to feel sick!, my life was very busy at the moment and i just could not get sick' and i guess i felt that if i believed hard enough that i was ok, then i'd be ok! lol.... (i did have a couple of lorazapam's left (for anxiety) so i was taking 1/2 a dose..... so recently i discovered that i was not taking 'all of my blood pressure meds!!'  as i said, my life has been very busy lately, and for sure the last week (maybe 2 wks?) when i filled my pill box, I Knew something didn't look right' but.... just never made the time to Really stop and figure it out!  I hadn't been taking my 100mg. Atenonol !! (i've been on that for yrs) and i am so thankful that God watched over me and i didn't have a stroke or worse...   geez...... how dumb was that!!?  And 'Yes' my body was speaking to me! and I did not stop to listen!    when i realized the problem this last week while filling in my pill box.... i knew that i knew something didn't look right before!  So big lesson to be learned for me!!  I know i can't be distracted when filling in my bp pills, i take 3 of them, plus the aspirin.

    long story......... but hope it's a reminder for some to 'please slow down!' and lets listen to our bodies!

     

    Natalie, i'm so glad to know you are handling the Pegasy well!   and yes... please be careful of germs, but i know it's hard with lil' ones, especially if they are sick, you want to hug them and love them even more! I know that's how i am with my grandkids....  love them dearly!

     

    Brain, my comments were directed over the  GP's comment (you were just the messenger! )  and you are right, we never know what lays ahead for us....  as Mimi always says, Life is a Mystery!   Good luck at your next hem. appt. and it's great that you keep copies of all your cbc's! we must keep ourselves informed and be on top of things, we are our own best advocates!

     

    In-case any of our Newbies (which you aren't newbies anymore!....) but just incase you haven't heard of 'Light the Night Walk' through the LLS.  you should check it out!  They have yearly fundraiser walks (you can check out when they will have one in your area)  I (we, my family and I) joined and created our team in '09?  This year will be our 4th year walking, ours is in Sept. It's so very inspiring!! and most importantly, funds are being raised for 'Research for new meds, help for patients, and more....  and prayerfully 'a Cure!!' for MPN's!!!  you can Create a team of your own, or join a team, or volunteer for the LTN walk event, just spread the word! it all helps.......   Last year was really neat for me and my family, as we got to meet Neil (from our forum here!)  and his wife Julie. It was so wonderful!! it's amazing all that LLS does for us!   if you need help finding the LTN, homepage.... just let me know and i'll try to help.

    when we set up our page, i'll post it here later.  

     

    oh, and i'm jazzed, my sister offered to me,... that if i'd like to do a 'Bunco game, fundraiser for the LTN walk' at her home again, we could!, .... and, of course i said 'Yes!'   so we will do that next month? need to plan it out still....

     

    okay, i've babbled long enough.......... take care all!! and Blessings to all of you!

  • 1,299. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Patti still cannot log on ,does anyone have any ideas to try something differant.Also were is the phone # for the LLS ???Any help would be appreciated

  • 1,300. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bubs11 Registered Users
    Currently Being Moderated

    Hi,  Hope everyone had a good weekend.  here it was Victoria Day on Monday so no work and we had  three beautiful, hot, sunny days.   what a treat for us.   Dee , here are some phone  numbers that might help for Patti. Although one is in New York and one  somewhere in Canada.....LLS. Society -  1311 Mamaroneck Road, WhitePlains, N.Y. ;    914  -  949. -  5213,   And their fax is - 914 - 949-6691.   in Canada the number is   1-800-955-4572.    in case anyone is interested and wants a contact  number for LIGHT THENIGHT WALK.  -   877-586-9255 .  Hope this MIGHT help.   have a good day.  have to run.   Work, work, work, no time to play.  Thought my haem/onc appoirtment was today, lucky I checked last night, as it is only next Tuesday.   My brain must have been still on planting flowers and playing with the grandchildren.. (lol).   Will give u all an update.  love u all and again,  I am so happy to have u in my life.  (. Just to let u know,  tears came to my eyes the other day when  I read. "You are not alone".   PV is still very new to me and very scarey.   take care all,   Carol

  • 1,301. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Sarah so glad nothing happened to you ove not taking your BP med.But please please be careful.We need you here..our little angel star.

    Carol ..i understand the fear but as you go on it will become less as more information will help you with the "unknown"Thank you for the numbers.Our Sarah dos the light the night every yearShe pours her heart and soul into it and raises the money for research and especailly the kids.Just wished we lived closer we could have a blast working on it together.

    My onc wants to see me Thurs.See what happens.Called pcp for some lasix no one called so i,m assuming it has been called in to my drug store.The use of it i hope relieves some of the pressure.

    Wish some of the other people who are AWOL would come back and post i, miss them .

    Hope everyone keep sposting .Huggers =D

  • 1,302. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    hey Dee!  i just finished emailing a message to LLS, through the http://www.lls.org/#/aboutlls/contactus/contactus_form/

    it was a form? but, wasn't sure how to go about trying to get someone to help Patti get back on.... I too found the same #'s that Carol posted, couldn't find others that may be related to this.....

     

    If you read this Patti...... can't wait to see you back!! hang in there sweetie!  and i always keep you in my prayers! I hope you are enjoying your new home!!

     

    Pauli, we haven't heard from you in forever!! how are you? and how is Ralph doing??  please update us now that you are back home!

     

    Colleen, we hope to hear from you soon too, hope things slow down a bit for you now that the kids should be out of school soon. How are you doing? and how is your school coming along?

     

    Charles, what about you? i know you used to read the post, but weren't posting for awhile... how are things going? and did you decide to join your light the night walk this year?  I'm sure Neil would love to see another 'male' here, and we now have Brian here also!

     

    Carol, good luck to you on your next hem. appt! I too have done what you did.... lol... and thank goodness i too realized it the night before!  looks like you, Dee, and Pegetha love gardening.... what an awesome pleasure thing to do!!   i wished i had a yard to garden in! but i'm in an apt! so oh......  it's okay, i get to enjoy seeing others beautiful work!!

     

    Dee, hope you get the lasix soon! and yes, that it will help rid of all the water retention that has build up. I've been told that my face and body looks like i too was retaining water. but i'm on Hydroclorizide, so i didn't think so....  but either i'm just getting 'bigger!' lol... or my water pill needs to be increased or changed. I've been on it for 26 yrs!

     

    Praying for everyone here! May you get some answers and some relief from the pains, and good and better days ahead!!     Blessings to all of you!!!

  • 1,303. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Thanks Sarah, have you ever had your thyroid checked ???Also your potasium?Just wondering.I ,m sure my pcp called in the lasix so it would be some what of a relief to rid the fluids.Just have to take a few days a week seeing i just have to look at meds.lol.

    Patti we do miss you here .Any luck figuring out the issue?Coffee is on id anyone wants to pull up a chair.Huggers=D

  • 1,304. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    WOO HOO!!!!!!!!!!!!!!!! It's about time huh? Finally able to log in . 

    Thanks everyone for all of you!  I have been lost not being able to login and respond to all your posts.  But maybe now all will be ok again.

    Love & Hug's to all of you!    Patti

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