The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 405. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    lkbanks Registered Users
    Currently Being Moderated

    Nanny,hi.I'm LindaK from Texas.I have ET and was on Hydrea 1000 a day except Mondays,I took1500 for over 1year.Platlets got down to 244.I had changed DRs and he asked what was the other Drs goal for my

    platlets?She never said.So the new Dr. has cut my meds in half.He said that he knew the platelets would go up(last cbc were at over 400,000).My next visit is in March.I guess he wants to keep them(platelets)

    around that number.Who knows.

         My daughter had her BMB and CT scan,and blood work,and her iron infuseion all in 1 day. She did fine thur it all,just so tired.She goes back next Tuesday and get the results.Please everyone keep her in

    your prayers.

         Hello Robert,glad your here.Know how you fell.I work with all men at our control panel shop.Some ladies in the front office.They are great guys,I"m the oldest(62) and they call me Miss Linda.Anyway

    glad your here.

    Got to go to work.Everyone have a Blessed Day

  • 406. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
    Currently Being Moderated

    hey Pauli, yeh i guess it was a just 'lets wait and see' doctors appointment. so will just wait and see eh lol..... How are you my dear? how the family keeping?

     

    Nanny, no no one has checked my thyroid function....thanks for your thoughts on that. i shall question it when i see my haematologist, if it would be possible to get that checked too. 

    My head has settled for now, but just feel tired. i am on my 2nd day off work and go back tomorrow for 3 days and then off sunday, back on monday and then off for 4 days, and i have my hosp appoint then...so will keep you all infromed....

    Take care all...

    bye just now

    wee p

  • 407. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Patti Registered Users
    Currently Being Moderated

    Hello Miss Linda: Wow, That was so much for your daughter in only one day!!! I bet she was exhausted. I've had about 23 iron infusions called Venofir, from May 08 through Nov 09. I also have had to have 5 rbc transfusions due to the severe anemia,and iron defienciency. But as of Dec 09, I now have a normal rbc count, and a high iron (ferritn) count?  This thing we all have is so hard to figure out sometimes? Just when I think I have a handle on things, they do a flip and I'm back to square one again?I also was put on hydroxyurea in Oct 09 at 500mg a day, and when my numbers plts at 1mill200, didn't move he doubled to 1000mg a day. Now my plts are 374. So I guess it's finally working. We all just need to try and take one day at a time, and do what's best for us. The Dr says the meds sometimes work for a long time, sometimes years, so that's what I'm hoping in my case too. The fatigue is a big issue for me, but sleep when I'm tired, and just get through it. I will hope you and your daugter are doing alright, and know I'm thinking about you both!

     

    Robert: Sorry for all the estrogen here, but know we all care, and enjoy hearing from you.

     

    Pauli: Thanks for sending some much needed sun up my way!!!!!! Finally we will have several nice days in the 60's and sunshine here, before the rains start again!!! I hope you and the family are doing well, and the kid's got back home safely.

     

    To Everyone else: I'm thinking about you all. Have a good day.     Patti

  • 408. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    SAKI Registered Users
    Currently Being Moderated

    Pauline- Having an overactive thyroid (hyperthyroisism/Graves disease) or an underactive (hyopthyroidism/Hashimoto's?) can cause a number of things- unexplained weight loss (hyper) or gain (hypo). Achy joints, fatigue too. I was dx with Graves in Jan of 09 and ET in Nov 09, so the two together are a double whammy as far as fatigue. The first step in checking thyroid function is usually two parts- physical exam to check for enlargement and simple bloodwork -T3 and T4 profiles. If those are wonky then a 24 hour test is done in where you have a baseline ct (I believe) scan done of the thyroid and you take a low dose of radioactive iodine then the scan is repeated at specific intervals to check how your thyroid is processing the iodine. Rarely is the thyroid removed surgically anymore- most patients are treated with suppression meds (hyper) or synthetic replacement (hypo). I take a low dose of PTU daily to help keep my thyroid hormones in check. Ironically this was diagnosed after my 2nd c-section delivery- my thyroid hormones were checked throughout the pregnancy but the pregnancy had suppressed it a bit- the surgery was actually more substantial of a risk than realized given the associated undiagnosed hyperthyroidism. My thyroid is slightly enlarged. I honestly thought I was a hypochondriac until the bloodwork confirmed the thyroid issues. I would best describe it as just feeling off- it's not uncommon for one autoimmune disorder to open the door for another. If you have any questions I have a great book @ Graves/hyperthyroidism I can pass along.

  • 409. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
    Currently Being Moderated

    Thanks Saki for your thoughts on my weight loss.  When i get my cbc next week i shall ask for them to check it out.  I dare say it wont hurt to ask eh! 

    thankyou once again.  my headache has completely gone, thankfully.....i just hope it does not return soon....

    How is everyone else getting on? 

    wee p

  • 410. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    laurandavid Registered Users
    Currently Being Moderated

    Hi everyone , I havent posted in a bit and am trying to play catch up , life got a little busy after the mayo clinic, work, my sons 16th birthday, going up to PA to see my parents for a few days, snow , snow and more snow.   I saw my local oncologist today , first time since the mayo clinic , remember i was worried about her reaction to me going there since he contridicted everything she told me..... I was so nervous going in , I almost passed out when they did my bloodwork, nervous because of facing the doc and nervous my platlets were going to be even higher than they were a month ago ...... but once I again I overreacted!   She was fine with me going to the mayo clinic and will be working with my doc at the mayo clinic regarding my ET!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! woo hooo!!!!  My platelets went back down to 780 thats my baseline , which proves the mayo doc right my endometriosis and the ovarian cysts were pushing my counts up due to inflamation. I had no pain this month and no cysts so the platelets stayed at thier baseline another wooooooooooo hooooooooooooooo..   so my plan is to stay on the asprin and have monthly bloodwork , thats it for now.   I have started a journal with any "symptoms" I may be having that was another idea from the mayo clinic as the doctor feels I will soon see a pattern that my symptoms are due to me being peri menopausal and not due to my ET, having a hormone study done by my gyn, ouchie, blood work weekly for the next three months. Menopause at 41............blah.  They also (mayo clinic) want me on a special diet to help decrease inflammation, no caffine, lots of fresh fruit and veggies I started that a week ago.    Today went very well thank goodness and I got all worked up over nothing.

     

     

    I have noticed alot of talk about fatigue , I dont have that but since my diagnosis two years ago I have discovered that I had to cut my cardio excercises and workout routine in half , I would feel like I was hit by a mack truck , when I cut everything in half that feeling went away........  I also have really low blood pressure so I am sure that comes in to play somehow .  This disease make me wonky at times trying to figure out why I feel the way I do and what is causing it .... as it stands I am 41  I have ET, endometriosis level 4, morphea scheleroderma, migrain w/aura , and have entered into menopause ..................can they throw something else my way please???????????????????/  Ok just kidding    Somedays I wonder how I even get out of bed.

  • 411. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Pauli Registered Users
    Currently Being Moderated

    Laura, I am so glad that your appointment went so well today!  And your platelets are down, too!  Isn't it awful how we get ourselves so worked up about things that never happen!!!  I am so glad to hear that things are going okay for you right now!

    Pauline, I was so glad to read that your headache is GONE!!!   What a relief!  Sounds like a good idea to me that you get your thyroid checked!  Sometimes I think we may be prone to other problems to go along with the blood disorder!  Nothing seems to stay simple.

    Patti, nice to hear you have some warmer, sunny weather up there, too.  That sure helps the disposition, doesn't it!!!!  Glad your daughter is feeling better.  It all takes time doesn't it!  Surgery can take a lot out of you!

    Linda, your daughter sure had her plate full to go through all that in one day!  She is a toughy!!  I am praying all things will work out for her!

    My daughter-in-law and son got home fine and they are waiting to see a psychiatrist right now.  They went to see a doctor and she would like to have admited her to monitor her and assess her but there are no beds available!!!  So I hope she gets to see the psychiatrist soon.  Thanks for all you prayers!

    I am having a problem with my ankles swelling, my right one more than the left.  I don't know what is causing that!  It is all purple, too.  Maybe I'll have to try to keep my feet up more.

    Blessing to all!~Pauli

  • 412. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    SilverPaladin Registered Users
    Currently Being Moderated

    I suppose I can think of worse things than being the only guy in a room full of women.    I hope nobody was taking that as a complaint, it was just something I noticed last time I posted.

     

    I just got back from the doctor today myself, and my INR was perfect.  Is anyone else here on Coumadin or is it just me?  I don't believe that's for my ET, but more for my Antiphospholipid Syndrome.  I was kind of disappointed that I didn't get a chance to talk to my hematologist today, but I did talk to a nurse who relayed some of my concerns to the doctor and they're going to have me back next week to do a whole range of tests on me.  CBC, INR, check my liver and kidney functions (not quite sure how that works...more bloodwork?).  They said they wanted to keep a closer eye on my INR since I'm currently taking antibiotics for my sinus infection.  Which on that front, it seems to be going away now.  The pressure and pain in my head is gone, now if I could just get rid of this runny nose.  It's not really that pleasant when your nose runs and bleeds at the same time, ya know?

     

    @Laura:

    Welcome back!  Can definitely understand about life getting busy.  This past month after I was released from the hospital has been more hectic than I ever wanted my life to be.  I'm the kind of person who'd rather curl up on the couch with a good book or movie or game and just waste the day away.    Glad to hear your oncologist wasn't holding a grudge about you going to the Mayo Clinic.  Also glad to hear that you've been pain free for this past month!  Yeah, I've brought up a conversation about fatigue, just wondering if it was normal with ET.   I'm not like drop down dead tired all the time, but I do seem to lack the energy of most of the people I know.  I've always been this way and just kind of wondered if it was possible it was from undiagnosed ET or me just being lazy.    And just like the number of licks it takes to get to the center of a tootsie roll pop, the world may never know.  Hopefully nothing else will get thrown your way, but please don't tempt fate by asking!  The worst thing you could possibly say is "Well, it can't be any worse!", because it can!

     

    @Pauline:

    That's great that your headache is gone.  My girlfriend gets wicked headaches all the time and it worries me to death, especially with the amount of painkillers that she has to take to get rid of them.  Unfortunately she doesn't have insurance and can't afford to go visit a doctor right now, especially considering that I'm sure they'd do a CAT scan or MRI or something along those lines, and those could be crazy expensive.  Hopefully your weight loss isn't a sign of anything major.  Good luck with that and I'm sure that all of us will be sure to keep you in our thoughts and prayers.

     

    @Nanny:

    Hi there, nice to meet you.  I don't think we've been introduced anyway...  There's so many people running around here that it's hard to keep up sometimes.  If we have, then...um...hi again!  And that's quite alright, don't mind me when talking about "girl stuff".    I'm sure the majority of it is nothing I haven't heard before.

     

    @Emily:

    Yeah, I'm not really surprised.  On the bottle of HU it even says it may lower my resistance to infections.  But I was just curious how bad it was.  I mean, the drug companies are forced to put so much stuff on their labels that may or may not be true just because there is a remote possiblity of something bad happening.  A standard CYA manuver.

     

    @DEE:

    Last time they checked my CBCs they were pretty good.  I don't have my sheet handy at the moment, but if I remember correctly, they were in the 400 range.  I want to say 468 or something along those lines.  So they've been keeping me on the same dosage of HU, thankfully.  If I had to take any more of those horse pills, I'd probably choke to death before I had another thrombotic episode.    The fatigue isn't too bad, I can work through it, but I pretty much do feel like I constantly need a nap.  Of course that may just be because I don't sleep too well at night.  The issues I'm having with my nosebleeds cause blood clots to clog up my nose (sorry if this is too squicky...) so I'll wake up in the middle of the night unable to breathe through my nose sometimes.  Not a pleasant way to wake up.  Hopefully they'll figure out why I'm having constant nosebleeds without resorting to me going to visit a ENT specialist.  Just thinking about having the inside of my nose cauterized is enough to make me wince.

     

    @Nat:

    Yeah, I'd definiately say that 65 is warm.  Especially with the highs here being in the 40's.  I'd love to visit Cali someday.  It's always seemed like a nice place to visit.  Enjoy yourself!

     

    -Robert

  • 413. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    DEE11 Registered Users
    Currently Being Moderated

    Pauli i do not like the sound of your ankles can you talk to the doc friend of yours? Or maybe evn go see someone?~~~~~~~~~PLEASE!!!.Wish Cindy could of gotten a bed at Mayo.All that traveling and so forth.Your poor son also must be spent.I.ll continue praying ..hows your depression doing Pauli ?I worry about you.

    Robert..i cant remember did you have BMB done ?My brain is getting worse and thats no joke .In fact i,m getting a bit concerned.Going to pcp today and going to ask to update chest xray and ekg.Just to rule out those things its been over 2 yrs.Robert i hope they can get to the bottom(actually top lol) of the nose bleeds.Not sleeping well at night really  causes issues during the day and were you have to work your not able to nap when your body is telling you too.Hope on your days off you can catch up.~~~Tata all have a gr8 day

  • 414. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
    Currently Being Moderated

    Laura yehhhh for you counts being in range eh...we all get worked up and we all deal with the appointments in our own way...but glad you are ok for now.....

     

    Now Pauli, HHHmmmmm those swelling in your ankles i would be worried about, please talk to your doctors friend as Dee has said, or can you call your doctor and ask to talk to someone, just so you can tell them whats happening with your ankles.  now with your history of your headaches and now your swollen ankles, and it does not matter if one is bigger than the other, but PLEASE call some one and ask for advise.  i aint no doctor, just a nurse but i see swolllen ankles on a day to day basis and know that there is a range of ailments that could be contributing to them..... but i am worried about you... so go NOW and call at least check with them eh xx and thats an order.  Kepp your feet up on a high foot stool, almost lie flat even, just so the fluid drains from your feet, move your ankles round and round and up and down....this stimulates the muscles to pump and aid in fluid distribution around you body.....but please call doctor ok...  do you stand alot during the day Pauli?  as this wont help things either. 

     

    I am ever so glad yeh that my headache has gone and will get my thyriod checked next wednesday at hospital. 

    Linda k, wow your daughter has been through a lot of tests eh...very stressing and tiring for her.. How are you doing? we are here for you.

    Dee let us know how you get on at your appointment today ok...good luck

    Robert all these women eh...what a dream for you lol...no......LMAO.... your contribution to the forum from a males perspective is great...

     

    Well guys i am off to work...so will catch up with you all later...

    wee p

     

  • 415. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Registered Users
    Currently Being Moderated

    Thanks everyone....for ur condolences. California is good...its a rude reminder for both Robby and me that we r SO homesick....his family is wonderful and loving...(This is my first time ever to meet his family and vice verca)...my dad, he looks bad, like he's aged 30 yrs in just 12 yrs...that's the last time I saw him....I'm very emotional and so is Rob....I hope everyone is doing well.... Hugs..love nat

    Sent via BlackBerry from T-Mobile

  • 416. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    cms9978 Registered Users
    Currently Being Moderated

    Hey Nat....I am glad that you are enjoying the Cali sun.  Its been normal here, know 15 degrees and mild.  Not bad for a February day.  I would still love to be living in the Keys.  You know sand and surf instead of snow and well snow!) 

    Glad that everyone is doing ok.  Can't talk long got kids to chase.  Everyone have great night!Colleen

  • 417. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Registered Users
    Currently Being Moderated

    Thanks Colleen..we r enjoying the sun/fog...its been pretty foggy on the coastline...Robs mother lives just south of Santa Cruz so we spent the early afternoon walking the coastline...I have pics on my facebook of us at the beach...I'm filled w so much emotion. I miss my family, I miss my home, as Robby does too...stay warm....hugs...Nat

  • 418. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    DEE11 Registered Users
    Currently Being Moderated

    Nat i hope the emotions you speak of are all good.Families at times can stir things within us more than we expect.Enjoy your trip.

    Went to pcp yesterday and she really checked me out.Also had a chest xray.They did,nt make me stay in the waiting room after so i assume its all good.The burning feet and legs are now up to my butt..thats right my butt is burning~~~~jokes anyone...give it your best shot lol

    Sario...were are you...i,m praying your ok.

    Pauli hows your ankles and everything else?

    Pauline hope the headaches are gone forever...mine is,nt so much a headache as it feels like a rod going from my spine to the back of my head and my eyes hurt,Nothing i cant handle..might just need a phlebot.

    Oh yea the pcp went up 10mg on the cymbalta hoping it will quiet the nerve pain.I asked her about the weakness and fatigue thinking it was the cymbalta and she said it should work the other way.So maybe its just the plain ol PV kicking my burning butt.

    Mimi HELLLOOOOOOOOOOOOOOOO!!!!!!!! Please pop in when you have a chance.

    Pegatha i,m so thrilled your counts are better lets hope that the next cbc it shows the wbc even lower.

    Sarah take a breather and let us know how your doing...ok calgal!

    Ann B hows your husband doing /

    Ann our angel.Hope you are well..Miss you!!!

    Robert i cant imagine how annoying and worrisome the nosebleeds are...please keep us posted.

    Linda F hows things with you...i hope your job is improving.and things settle down for you

    Linda B Whats the update on your daughter?Its so nice you all live close by.Please take care of yourself as well.

    Emily still hanging in there without the meds?Your usually ontop of it but please watch those headaches and call the doc if they keep coming back.Okey dokey ?

    Gotta get going.Dont feel like it but have granson all day.Love him dearly but by the end of the day i,m spent.But its all for a good cause lol To everyone hugs also have a gr8 weekend.TATA =D

     

  • 419. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    paytonsnana Registered Users
    Currently Being Moderated

    hey ya'll

    just a note to let u know u are all in my thoughts and prayers..

    I am still searching for a job with some real insurance benefits.. I am discouraged I have never had such difficulty to find a job.

    thanks for your concern and care for Payton.

    Tim got the hand controls on the van at last and so we ae looking forward to the week end . 

    I had a nose bleed earlier in the week very odd felt my nose running and it was blood..Called the Onc but they said my platelets were ok at last check so we decided to see if it happen again..

    I am very excited the T-shirt is headed to me I will take a pic and post as well as take a different one to send along..

    gotta run

    love

    denise

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