The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,020. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    pegetha Registered Users
    Currently Being Moderated

    I so hope everyone is OK, or at least as OK as you can be.  Good luck, Mimi, on your appt. today.  Let us know what happens.  Vickie, I'm happy for you that you had such a good experience with your appt. and that your doc spent so much time with you.  So many people don't have that kind of experience, and get docs who tend to blow off their complaints and problems.  It's refreshing to hear of one who treats the person and not just the disease.  What makes your doc think you might have gone into MF?  Did he do a bone marrow biopsy?  I hope for your sake that he is wrong about that.  Neil, it's so good to read your posts, and to hear about your bike riding.  I know that I feel worse when I give in to my tiredness, etc.  You're my inspiration to keep forging on, and to ignore the way I feel.  (I have to admit, though, that I'm not always successful. )  Dee, I'm sorry to hear about your bone pain, and pray for you to find an answer that will help you.  Wee Pea, I'm sorry to hear that you had to have your meds upped yet again.  Just how high were your platelets?  Natalie, I'm glad that you've managed to get in with Dr. Mesa.  From what I hear and read, he's really a wonderful man and an expert in the MPN's.  Let us know how it goes with him.  Sarah, I hope and pray that you manage to get some rest, and don't overdo it!  You're truly an "angel."  Emily, let us know how the Pegasys does for your spleen. 

     

    OK, I'm running out of steam.  I apologize to those I may have missed, and wish for everyone better days ahead.

     

    Pegetha

  • 1,021. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    UPLaurie Registered Users
    Currently Being Moderated

    Hello everyone!  It has been a while but I know you are all here whenever I need some advice or have a question.  It's not that I don't read this everyday or think of you all, just don't always have the time to respond to everyone.  I have been busy at the hotel, finally got some snow so snowmobiling business has picked up.  Also been out of it for a week and a half as my mother n law had a heart attack and we have been out of town for that but she is home now and doing well.

     

    I am writing today as I would like to know if anyone has had a similar symptom that I have right now that is new.  I was diagnosed with ET in August and this is a pain, or sensation, or who knows what, that is new and I have never experienced it before.  I have this weird feeling on the top of my head to the right of my part that is sore with or without touch and kind of travels down to my upper cheekbone area and down to the top area of my right ear.  It is hard to explain the feeling.  It is sore but I can't really say it is painful.  When I try to pin point the area it's hard because it doesn't actually feel worse when I touch it.  It throbs sometimes but weakens others but is always there but it is not a headache.  It started yesterday morning.  I have called and left messages for my doctors office a few times and have not heard back yet.  It kind of feels like it is in my skull or between my skull and scalp.  I don't know, just thought I would give it a try.  Thank you for giving me this avenue to try anyway

     

  • 1,022. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Laurie: I'm sorry to say that I don't know what this could be. But I would call after hours when your Dr is on call, and then maybe you can ask him. Just once I wish these nurses and Dr's could feel what we feel, and how it can be frightening, and then have their Dr's not return their calls!!!!  Sometimes when we see them, we need to remind them, we trust them and need to talk to them when something is happening with us!!!  I think they forget why they are there sometimes. Sorry I couldn't be of any help.  Patti

  • 1,023. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    UPLaurie Registered Users
    Currently Being Moderated

    Thank you Patti  I usually don't get too excited when I have something going on but the whole blood clot thing does scare me a bit.  It seems bettter today though.  I had someone tell me that it could be a sinus thing too.  Oh well I will just wait for my doc to call me back.  Have a great day!

  • 1,024. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    buddyrider Registered Users
    Currently Being Moderated

    Laurie, i am not sure whats causing your pain but it sounds like neuropathic pain.  I first thought Trigeminal neuralgia, but the stabbing pain your experiencing is too high in your face and head.  I would talk to your doctor when he calls you back, which i hope aint too long.  I agree with Patti about the 'no return calls', we do need to talk to them and have them show us some tenderness, care and support....after all they have a 'duty of care' to 'US'    They should not need to be reminded!!!   Good luck in finding out what is causing the pain, keep us posted

    wee pea   

    ''EVERYONE'' else glad to see all the posts.  I was a little quiet on monday, as sunday was the first day of taking my increased dose of hydrea.  I not keen on the increase and it does take a little time to compute and accept the onc's decision....but i also feel a little odd in airing my fears in the increased dose as there are so many worse than me... but i am getting there..  

  • 1,025. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    macnanna Registered Users
    Currently Being Moderated

    Hi everyone,

                         Well had all my tests done at the hospital, now waiting to hear back. Went to my dr but they never faxed her the results, so been waiting for that magic phone call, yes i agree with you all, wheres the compassion'' I know i did;nt enjoy taking the 3,ooomg hu a day. I seem to be getting worse bone pains with the interferon,? Just wish they would let me know whats what, my daughter had her first baby scan done and alls well, hope every one are good and take care love jules oxox

  • 1,026. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    buddyrider Registered Users
    Currently Being Moderated

    Hate the waiting game, so annoying but nowt we can do about it eh... the results take time etc... but it sure is frustrating.  Great news about your daughters scan, glad all is well there.  Take it easy my dear, ok....Julie timeout time...chill out and put your feet up, i hate you have all the bone pain etc to deal with...

  • 1,027. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Emily87 Registered Users
    Currently Being Moderated

    Hey Jules, i only have a moment to reply but I'm in the same boat....my bone pain is AWFUL since starting the PegIntron. I haven't really found anything that makes it better yet either

     

    The only plus I have found so far is that my spleen pain has decreased significantly!

     

    Congrats on the new grandbaby, btw!

  • 1,028. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    macnanna Registered Users
    Currently Being Moderated

    Hi Emily,

                   thanks for that, yes cant wait for the new g bubby in august, i have'nt found any thing for bone pain yet  but my spleen has kept me awake all night and i did a needle yest, so mine seems to be going up? How often are you having the needles? Take care love jules xo

  • 1,029. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Emily87 Registered Users
    Currently Being Moderated

    I take my shot weekly I do it on Friday nights so that I lose less time off work. How frequently do you do yours?

  • 1,030. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    macnanna Registered Users
    Currently Being Moderated

    Hi Emily,

                   I have mine 3 times a week at moment, there thinking of increasing it.I have a full needle as well, how much do you have? yes its a bummer with the bone pains eh, do you get a tepm and flu like symptoms? take care

  • 1,031. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    lkbanks Registered Users
    Currently Being Moderated

    Hello my bloodbuddies,just a note to let you know whats going on with me.First I don't have to work overtime,a week ago,(last Fir.nite) I tripped in my den and fell on my right shoulder and I think I tore something.Can't move my arm outward.Can move it a little out to the side.Nothing broken,(when to emergency room for xrays).I will see the Ortho Dr. on Monday.I'm thinking that I tore the rotor cuff or something like that.Also had another CT scan on my lung and nothing has changed there.The Dr. wants me to do another one in 6months.My question is how safe are these CT scans and how often should I have one. Other than that I guess I'm doing okay.Just worried that my employer might think they don't need this old woman anymore.I still need to work to keep my insurance.I will be able to get medicare in November(I'll be 65 ) and then I can think about not working.

    Ok enough about me I hope everyone is doing better and try to have a good week-end.God Bless everyone...LindaK

  • 1,032. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!

    I'm so sorry that i haven't posted, i've been reading the post, getting a bit hard for me to keep up with everyone, I've been so busy.... but that's No excuse, and i apologize for my lack of posting. But please know that you are all in my daily prayers, and i have you close to my heart and mind always you are my bloody buddies/my extended family.

     

    Ohhh, Linda... i'm so sorry to hear about your fall!  what did the ortho say?? and are you in alot of pain? As for another CT scan, well... i know it's never too good to be so much of any of that stuff, but!, sometimes there just isn't a choice in this case, you do want to be on top of having your lungs checked well. I'll be lifting prayers for you Linda, and also for your decision when Nov. comes as far as being able to retiring.

     

    Dee, how are you dealing with your bone pain? I know at times you say it doesn't stay 24/7 but, it sure sounds like it's around way too much!! I pray so much for you my dear.... hope you feel the prayers

     

    Julie, i just found talked with someone the other day who told me they were getting Interferon also, and they too said that the bone pain was real bad and that they got flu like symptoms, they referred to it as being a real 'mean thing'

    ........ and, i'm So happy to hear the great report on your daughters scan!

     

    My heart goes out to all of you who are dealing with such bad bone pain, i wished i could wave a magic wand over all of you!! and i agree with Neil, i too feel like there's so many of you who are dealing so harshly with MPN and i feel bad at times saying how for the most part things are going so easy for me, my setbacks with this are ever so minor compared to so many here.....

     

    Mimi mi amiga......  i miss you!  how are you doing mi amiga? Please post soon, you are our 'Southern Belle' with so much charm, i truly miss your posts.

     

    Laurie, i'm sorry to hear about the pain you're having in your head and face, I have been praying for that for you.

     

    Pegetha, i'm glad to know that you had a week off work? I hope you were able to rest some, and have some time without all that pain!  My heart goes out to you and the others who are in such pain and yet have to go to work.... I pray much for you dear

     

    Patti, i hope things are going well with you? 

     

    weePea, you always bring a smile to my face.... love that about you~

     

    Pauli, Denise, &  Colleen, if you still read the post here, know that you are missed and we would love to hear an update from you.

     

    sorry for those i didn't mention......... but, you are 'All' in my prayers~   God Bless each and everyone of you~

  • 1,033. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Sarah: It's always good to hear from you. I'm doing ok here in Northern Calif. We are going up to Southern Oregon to see our other girl and grand daughters soon. My counts have been ok for going on 5 months now, with only one raise in my HU. So the best stretch I've had in years. I hope it lasts.  Please tell me you have had your Knee looked at???  I sure hope so.

    I also read our forum everyday, but sometimes just don't always post. I do think about you all.  Patti

  • 1,034. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    lkbanks Registered Users
    Currently Being Moderated

    Hello friends,just an update.Had the MRI done today and it showed that I tore the rotor cuff in my right shoulder,will plan on day surgery next week.Waiting for the ok from my ONC/HEM.I took off last week because of the pain,but I'm going back to work on light duty.I can use my hands but can't lift anything or raise my arm up.

    hope everyone is doing okay....LindaK

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