The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,800. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Patti Registered Users
    Currently Being Moderated

    Hello everyone: Yeah!!!  They finally called me yesterday afternoon and the American Cancer society found me a room for the week in Portland. I really apprieciate all the things they can do for us, but wish they wouldn't wait to the last minute to do it sometimes. I have to be in Portland on Monday so yesterday I really needed to know for sure. It can be stressful getting a bit of help, and waiting, and calling, but Portland is a very expensive place for hotels, and without their help I'd be in big trouble for sure. It's worth the effort sometimes.

    Neil: I think I told you I also grew up in So.Calif. I don't miss anything but the weather. I'm glad you are able to stay so active, I sure wish I was. Some of us arn't so lucky.

    Sarah: always good to hear from you! I hope that flu bug is all better with you and the family too.

    Linda, Dee, Mimi, Saki, Pauli, and everyone else: I think about you all everyday and want you to know I only want you all to be happy and feel as good as possible. I still wish some how we could all get together somewhere for a long weekend. Stranger things have happened, so maybe someday huh?

    Have a good weekend everyone.  Patti

  • 1,801. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    memy Registered Users
    Currently Being Moderated

    PATTI !!

    What a great post to wake up to!..........Hooray for your room in Portland--I know it was stressful with all the calling and waiting and wondering--but they came thru for you--Yee-Haw! Will y'all drive to Portland on Monday early morning? Or will you need to get there Sunday night?......I know the infusions are hard on you and the week there by yourself without JAY AND MAX is a bummer, but hopefully you will get some type of relief and it will bring your ferritin count back up, right? Well, sugar, I am with you there in spirit ! And hope all goes well.

    And in regard to us all somehow getting together for a weekend of camaraderie --you are right, stranger things have indeed happened! You just never know what's in store!!!

    I, too, am grateful for all the help afforded you by the American Cancer Society, but it was YOU who did all the fighting for it! You are very efficient and determined in this area and in being proactive for yourself (and others). You ROCK. You're a doll-- A PATTI PLAY PAL DOLL !! ..............And NEIL, I, too, am happy for you that you stay so active and do all that cycling--great for your psyche as well as your body. I have to admit that I am not so active--keep trying to be more active--as DEE says often: "When the spirit moves me!"

    Happy trails to all.............

  • 1,802. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Patti Registered Users
    Currently Being Moderated

    Thanks Miss Mimi!  Yes I'm relieved that it is settled now. Jay will take me to Portland on Monday early and then come back for me on Friday after my early infusion. I also have to talk to my Dr at the appt. on Monday about my HCT being 50.1???? It's never been this high before, so I'm confused about that too. I have  several things to try and get some answers for, as well as some repeat tests as I think I may be transitioning to PV, but not sure. The ACS will help any of us, but it's something we have to ask and sometimes fight for.But worth it especially since the hotels are so expensive in the bigger cities. I'm hoping I wont have the side effects I had the last time. They seem to get worse everytime. I have some what lost count but I believe this will be number 45 infusions for me. I could go look at my records, but just don't have the energy. Thanks for all the support from you and everyone.  Love & Hug's to all, Patti

  • 1,803. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    buddyrider Registered Users
    Currently Being Moderated

    Hey all i still cant post, but i will keep trying lol... Patti thats great news about getting a room for your weeks long treatment.  I know you dont like being away from home for so long but it is important that you go. 

    Keeping this short as i dont know if this will post, using my friends copmuter to see if it lets me post!!!!! getting annoyed not being able to post...thinking of you all

    wee p x

    YEAHHH it worked, but i am heading home and will possibly not be able to post for a while,but i am here and read the posts daily

  • 1,804. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    memy Registered Users
    Currently Being Moderated

    YEE-HAW!! SWEET WEE P FROM THE LAND OF SCOTLAND:


    Hey KIDDO! You made it! My jaw dropped open when I saw your name on the post! Way to go. Now to get it to work from your own computer at home. But this is quite a feat you have managed--very proud of you! The forum has not been the same without you! We have all missed you! Though I'm sorry that the problem is still not resolved. All in DUE TIME--(OVER-DUE TIME)!

    I guess we will hear from you sorta whenever till the GLITCH is straightened out. And, what a GLITCH it is and has been. Knowing you as I do, I would imagine you are about as frustrated as can be!! And I feel for you, darlin'! In the meantime, keep up with us by reading them and soon you will be a WHOLE PART of the GROUP once again!! As I said, it's just not the same without you and we are missing you. Hope you are faring well, dear, and i look forward to your posting with us again, SOON.

    LOVE AND PLENTY OF HUGS TO YOU FROM MAMA MIM


    AND TO ALL : ENJOY THE WEEKEND!

  • 1,805. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Patti Registered Users
    Currently Being Moderated

    YEE HAW!!!!!!  Wee Pea finally got a post here!!!!!!!  We've all missed you. Your Post came through load and clear, I agree with Mimi, now you have to do this from your own PC. Glad to got to post today,     Patti

  • 1,806. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!!

    Wee Pea, it's wonderful to see you got on the board!!   I sure hope you are still able to log in from home! Yes, ... we've missed you here! but don't worry, we can't forget you! I'm still keeping you in my prayers and hope things are still improving with every passing day. You are truly to be admired for such great strength in everything.  Take care of you!


    Patti, i'm so glad to hear that the ACS came through for you!! way to go Missy!! you are an awesome go getter!! and i too admire you for that!!  I will be praying for you to be able to handle the infusions without complications, it sounds like quite the challenge and you've been through so much already, my heart and prayers are going out to you.   Are you able to get around a bit out of your hotel while you are there? I hope places are near and accessible to you. That must be really hard to be away from Jay, your doggie and home for so long.  Hang in there!!!....


    Mimi my dear.... thank you again for such sweet compliments! you make me blush! LOL....   How are you and Mr. McGuire doing?? you two are so cute! I love how you say you both spend time together emailing each other and such....    Hey... won't it be great when you get to jump into your pool again!! and use your outdoor shower!... i know how much you used to love that! it must be great to go for a night time swim and look up at all those beautiful stars!


    Dee, i hope you guys aren't getting flooded over there now. You have to really take a challenge everytime you go out it seems.... Be careful out there. I'm glad that Jerry has his plow truck back, that must be a relief. How is Sabrina doing? was wondering the other day....    And how is your lil' Nicholas? and i hope that you've been good to yourself too and rest as needed!


    Linda, hope you can find your way back....


    Neil, exercise is great and i'm glad you're able to do so much bike riding, good for alot of reasons. I myself really lack in the exercise dept., i used to go walking before, and really want to start doing it again hopefully soon. But i know that for a some of the people here... exercise just isn't possible, they unfortunately are having more pv complications than others and it's just a trial to get through each day, and my heart goes out to those who are having such daily battles. And i'm grateful that my complications aren't bad, and i do plan on making myself get back out there and start  out walking at least a little, as i know it does help the circulation, which of course is so important.

    Neil, have you checked with your hem/onc. about your planned trip to Yosemite? (sorry if it was somewhere different, can't quite remember...) may be a good idea to run it by your hem/onc. and make sure that all would be ok... just to be on the safe side,... although it sounds like you are very fit for it. Sounds absolutely Fantabulous!! i hope it happens for you!!


    Pegetha, i agree with Mimi... i know you are so busy and tired out with your work (hope you haven't gotten any pesky germs... so much going around!) but know that you are missed! and i lift you in my prayers


    Pauli, how are you and Ralph doing?? You know,... i always remember the Salvation Mountain and i sure hope i can make up there to see it one day! it's right by my old hometown and it would be a blast to go and do some reminiscing down memory lane!!


    Denise and Colleen, hope all is well with both of you... drop in when you get a chance.


    I'm off......... i've been putting in some 'Me Time!' on what i love to do, 'Scrapbook!!'     working on a couple of pages and just enjoying going through my pictures.... family, family, fun times!   (last night i stayed up till 1am doing it!... we'll see about tonight!) lol....


    Blessings to all of you!!!

  • 1,807. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Pauli Registered Users
    Currently Being Moderated

    Hey Everyone!  just popping in to say hi and say that I am praying for you all.  Ralph is not doing so well right now, high blood pressure and pulse, night sweats!!  He's keeping watch on it for now and I'll try to talk to our doctor at home this cominmg week.  He is not in the office until Tuesday.

    I am tired with so much company coming and going the last few weeks and more coming on Tuesday.  I also cracked my rib or something.  It has been pretty sore.  But I have had that happen a few times so I know that they don't do anything for it anyway!  So I'll just lay low for awhile!! .....I'll try anyway!!!

    Dee, I sure hope something good will happen for you soon!  You have so much to deal with!  And the weather hasn't been co-operating either!!!!!!  Hang in there.  Praying for you as you go this week.

    Patti, I am so glad that you got a room for your stay in Portland.  I know it is a tough time for you in many ways!  Your courage and determination are so strong!  You are in my prayers, too!

    Sarah, it is so true, you are always so up beat and lifting everyone up.  I appreciate your spirit so much!  God bless you richily!  So happy that you are feeling better, too.  That flu bug is a terrible pest!!!!!

    Pauline, so good to see your post!  Hope things are going to straighten out for you.  Miss your encouraging and upbeat posts.  Hope all is going better for you otherwise, too!!

    Neil, I too agree with the others that it is great that you are so dedicated to your biking!  that is such great exercise and keeping you strong!  I like to walk but have been doing more aquasize than walking this winter.  I love the warm water!!!

    Sorry you are having trouble with posting too, Linda.  That is really frustrating when you want to get on and can't!  Hope you are doing okay!

    Pegetha, You are so busy with school and all.  Hope you are doing okay right now!  Miss you, too

    I know I haven't posted much but I read everyday, looking forward to hearing how you are all doing!  Just know that I so appreciate everyone of you.  You are all a blessing to me!

    love Pauli

  • 1,808. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    Patti Registered Users
    Currently Being Moderated

    Pauli: I'm worried about Ralph. Please if you think there's a problem with his heart, dont hesitate to get him to the ER! If your Canadian insurance wont cover it, you can talk to the busness office and they will probably not charge you. Just take care of yourself and Ralph first we will worry about the rest later.

    Sarah, Mimi, Dee, Hey I apprieciate your kinds words about my strenghth , But it's not really strenghth, just fear sometimes that keeps me pushing for what I need. I learned a long time ago that to get the help we need we must really fight for it. It's hard and I have my frustrating days, but I just don't give up. I'll cry, scream, yell, and rest, then get back to it. It does take time and energy, but we are all worth it!  Well, I'm off to Portland tomorrow, and get this over with again. Thanks for all the love and support here from everyone. I don't know what I'd do without you all here. Hug's Patti

  • 1,809. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    pegetha Registered Users
    Currently Being Moderated

    Hi, all.  Sorry I haven't been posting lately, but I've been so tired by the time I get home from school that I don't even feel like turning the computer on.  Even when I do and read some posts, often I don't have the mental energy to reply.  I'll try to do better, but make no promises.

     

    I'm starting Anagrelide in lieu of Hydrea (both of them at first), but I'm not sure I'm going to continue with it.  It only controls platelets, and doesn't work on the red nor white cells, as I understand it.  My white cells run high, even with HU, so I suspect they'll go up.  Also, it means I'll probably have to go back to frequent phlebs.  After the ordeal I had a couple of weeks ago, I'm thinking that may not be a good option.  My regular tech wasn't there, so I had a new one.  She probed and probed, and couldn't access a vein (too scarred), so she had to call in someone else.  The second lady finally was able to get through, but commented that the vein "popped" when she broke through the scar tissue.  Afterwards, I had a hematoma and a bruised area probably six inches in diameter.

     

    My doc wanted to get me off the Hydrea because of the squamous cell carcinomas that are developing fairly frequently, but Anagrelide may be a case of "out of the frying pan into the fire."  At this point, I'm not sure what to do.

     

    To complicate matters even more, my gout (I'm assuming that is what it is) in my left leg has come back again.  My leg was so swollen last time that it split the skin, and it's still peeling from that bout.  I'm already taking Allopurinol for the gout, but it's obviously not completely knocking it out.  Does anyone else have a problem with gout?

     

    In the meantime, I'm so totally tired that I don't do much of anything other than go to school, then come home and collapse.  My house and yard are suffering, and I just don't care right now.  So there. 

     

    Sorry about the pity party, but that's what you are getting today.

     

    Thanks for listening.

     

    Peg

  • 1,810. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    Pauli, wonderful to hear from you!!   I'm sorry to that Ralph is having problems with his blood pressure, is he on meds for it? and do you have a bp monitor at home so he can check it regularly?  I will be praying for him and for you as well for your ribs.... that must be very painful, and you're right, they don't do much for it, just give you a waist wrap and tell you to take it easy and take pain med. Please.... do take it easy so you can heal quicker.... But i agree with Patti too, that if it looks like Ralph is having serious problems or you see any danger signs.... he needs to be seen by a doc asap. Praying for you both


    Patti, you're a sweetheart.... and i too feel the same way, 'what would i do without all of you!?'  Thank God for this forum and all the wonderful supporters we have here!!!  truly as an extended family of caring and love....     and i still say you are Strong and Determined and i'm so Proud of you!

  • 1,811. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    Pegetha, I'm so sorry to hear that you are going through so much!  thank you for sharing with us...  and just so you know, we understand when you don't come on to post, we've figured you were so tired with work and lack of energy. But i never knew just how bad things were, and it breaks my heart to know that you are dealing with so much, it must be hard and very confusing to make those decisions or agree with the doctors on it.  Yes, i agree about the Anagrelide , that's how my old hem/onc used to explain it to me. Only targets the platelets, and  i pray that you don't get alot of side effects (what i used to be told was that alot of people couldn't tolerate it due to the many side effects).... not trying to scare you any further, just want you to be alert to anything new that you may feel or get, once you start it. Then you just need to weight out the pros/cons as to continue it. Just as in everything... our bodies are all different and react differently to meds and all.... So i will be praying for a good outcome for you!!

    Your last phleb sounds like you had it pretty bad,  will they let you request an appt. when your favorite nurse it there?

    You know... i guess i thought gout hit on the toes and feet, but now that i think of it, i think i do remember reading that one can get it on different places?

    Geez... i can't even imagine what you described happened to your leg! that sounds so painful! I sure wished you could take some vacation time off work and get rested (i know probably not as easily done as it is to say...) but i so wish that you could get some rest that you so need. Wished we i could run over to your place and give you a helping hand in whatever you needed!  Please take care of yourself Pegetha, and i will be praying much for you!   Sarah

  • 1,812. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!!  Hope you're having a great day, doing whatever you enjoy doing.... and if not that... then that it has been a good productive day!! both would be good!


    Dee, i hope you are taking sometime to get rested up! lil' breaks do wonders!   I could smell your coffee this morning! so i got up and went to my kitchen,... but you weren't there!!    lol....  had a cup o joe, on your behave, thanks kiddo!


    Colleen, didn't you start going to school? how's it going?


    Linda, is your daughter still doing well?


    Mimi, wee Pea, and Everyone.............. have a Fantabulous Day!!!!! 

  • 1,813. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    DEE11 Registered Users
    Currently Being Moderated

    Need to catch up on all the posts.Pauli i,m sorry Ralph is,nt feeling well and the ribs must be very painful.You,ll need to put "do not disturb" sign on your door.Sounds like the stress is getting to you.I,m praying for quiet times and for Ralph to improve.

    Patti the best of luck on your 5 day infusion run.We are all with you.Hope he time goes by fast and please be safe!!!

    Pegetha.I,m sorry your new treatment is,nt really helping much but i,m surprised that the did,nt put you on interferon.Wish they would scan you leg,Just to rule out clots.I know you have gout but still would be a peace of mind.

    Pauline we miss you keep trying to post some are coming through.

    Mimi..glad you feel better your the southern sunshine that keeps this northern gal smiling.

    To everyone else and to all big big hugs...Sarah ..glad to see you back to yourself.

    Was walking through the snow and the spleen felt like it was coming up through my chest.Could,nt catch my breath..it kinda of shook me up a bit.Its staying in the larger size and starting to bother my right side.More blood work March 1st..so see what happens.Just trying to hold out till May.

    Everyone have a great week more hugs and more mugs coffee is on.tata =D

  • 1,814. Re: PART THREE: LIVING WITH PV, ET, MPD'S
    flower79 Registered Users
    Currently Being Moderated

    Pegetha, this is just a bit early.... but:


    "HAPPY BIRTHDAY TO YOU!! HAPPY BIRTHDAY TO YOU!! HAPPY BIRTHDAY DEAR PEGETHA ~~~ HAPPY BIRTHDAY TO YOU!!!! ~~~~

    I'm sending wishes for a very Blessed day for you!! and that you will have a Beautiful day!!!   God Bless you always! love, Sarah