The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,215. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
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    Thanks everyone for the love and support.Now more than anything its well needed.Long story but it has to do with my spouse.Anyway..i,m not proud of raising my voice but i guess it did alot of good.Wee Pea hows the heart situation???

    Natalie so happy you got back to us about Dr Mesa.There is a few things going on with you and i,m glad your getting proper care.Your not being lazy you body needs to rest .

    Mimi guess your right ..i,m an unknown drip under alot of pressure

  • 1,216. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    buddyrider Registered Users
    Currently Being Moderated

    Had my cbc today and all went well.  Htc 40%.  Plts 390. Hb 14.1. and no phleb or change to my meds, so i am happy happy...

    Natalie glad you had a good visit with Dr Mesa etc...keep hydrated if you do do any exersice thats always a good plan...happy running lol

    To everyone else, i am sorry i aint gonna address everyone, as i have not been getting the emails either, so i am very much behind all of your latest news.  But i think of you all each day and hope for one day a cure for us will be found!!  Keep safe, eat healthy, take care etc etc bla bla heehee.....and most of all....be happy and smile each day

    luv ya's wee pea

  • 1,217. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    buddyrider Registered Users
    Currently Being Moderated

    Oh yeh Dee, thanks for reminding me about my cardiologist review.  There was no abnormalities found in the 24hr ECG tape i had done and no follow up is required.  So i was pleased about that too...

    p.s. we are also proud of you Dee for raising your voice too...

  • 1,218. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
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    Natalie: That is such great news!  Dr. Mesa is wonderful for sure. Get some rest, and good luck on the new meds etc. I hope all will be good for you.

    Patti

  • 1,219. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!  It was wonderful to go to my email and see so many posts from the forum!   however.... it seems that so many are dealing with so much.

     

    Natalie, it's great news to hear that you got to see Dr. Mesa, and that the outcome seems to be good news for a better plan for you! I'm proud of you for pursuing that! and i will keep you in my prayers. I will read up on Pegasys to get acquainted with it, as i don't really know much about it. Prayerfully that with the HU will be the answer to getting your counts in a stable level. Hang in there!

     

    Dee, i'm truly praying that everything goes through quickly for you with the ins. co.  to cover your jakafi. I hope it doesn't cost you and arm and leg to be able to receive it! And that this will start to bring down your spleen and get your  counts were they belong! You have dealt with way too much for way too long and i (we) are all so proud of you!! you are one of the toughest of tough that there is!! i admire your strength and endurance in your battles with the doctors and ins. co. as well. and as you go through all that.... You still manage to uplift us all here and encourage everyone always!! God Bless you sweetie! (and i hope those feverish spells leave you!)

     

    I heard from our dear Pegetha, she's hanging in there,  getting regular cbc's, and the Jakafi seems to be helping. she's tired at end of her days with work and all. praying for her as well.

     

    Mimi, sweetie, i'm sorry to hear that the spleen is acting up again on you too. With the MF dx's i wished  they'd start you on the jakafi as well. i know you have the meds there already and are just waiting to hear from your onc. I will keep praying for you my dear.   (and thank you for your lovely bday wishes)

     

    I myself am doing good. just getting headaches again, and started feeling nauseated lately? and i'm getting muscle spasms also again, but throughout my body.

     

    I need to go research some stuff......... Everyone take care! God Bless you all.

  • 1,220. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Does anyone have the "BARR" lab..hydrea its purple and pink??My cvs gave me the green and pink one and i cannot tolerate it.Seems like its going to be hard to find.Will check other drug stores .But just wondering if anyone uses a chain drug store that i can start calling.Thanx =D

  • 1,221. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    Dee, I take green and pink from Future Scripts. No problem, didn't realize there was a difference in color .

     

    Brian

  • 1,222. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    pegetha Registered Users
    Currently Being Moderated

    Hi, everybody,

    Sorry I have been mostly absent from the forum lately.  I'm just so tired all the time -- I know that most of you know that feeling!  By the time the school day is over, I can barely crawl home and hit my couch.  In addition to the "normal" PV tired, I'm now getting a little anemic, which more or less adds to it.  I'm doing well on the Jakafi but I'm still taking HU a few days a week.  The doc is easing me off the HU, very slowly.  Last time he tried to take me off it and put me on something else, my platelets shot up to 1.6 million, I think it was.  Then when he put me back on HU, they dropped too fast and too far, and I became neutropenic.  This time he's being very cautious. 

     

    Dee, I'm so glad you're going to be taking the Jakafi.  I honestly believe it will help you.  Although my spleen was never as big as yours, it was enlarged and did hurt.  Now, my hem/onc doc tells me he can barely feel it!  So, there's real hope.  The J drug isn't a cure for MF nor PV, but it at least it's a step in the right direction.  Who knows, maybe someday in our lifetimes, there'll be a real cure for all the MPN's!  By the way, I went through the battle looking for the HU made by Barr.  It definitely worked better for me than any of the other manufacturers.  The problem (according to my pharm) is that Barr was bought out by another company, and apparently stopped production of HU for awhile.  They're apparently back at it again, though, as I was finally able to get the Barr version of HU last time I refilled.  I use the pharmacy at a grocery chain called Albertson's, which is a national chain, I think.  You might check with them in your area (if they are there) and ask them to order it for you.

     

    Thanks, Sarah, for being such a sweetie and checking on me.  I tend to hibernate when I'm not feeling well, and need someone to kick me in the patootie.  You and Dee definitely help to hold us all together.  Thanks!!

     

    I hope everyone has a good weekend with lots of energy and things going your way.

     

    Later . . .

    Pegetha

  • 1,223. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Glad to see you here Peg.Hope the rest of the school year goes by fast.Then you can try to care for yourself and rest up ..How much Jakafi do they have you on ?I,m concerned with the dose they want ,me to start.20 mg 2x a day.I might (after telling them) try half of that till i know how i feel.In the past new meds have had some nasty side effects so i,m guarded with starting something really new.Thanks for all the info about "Barr labs"But i found taken half of a dose of the pink and green i can tolerate.Then i have to go without for a week before the jakafi.Your right in saying Jakafi is,nt a cure but it does help the symptoms alot.At this point i,ll take anything.I,m so physical it really gets to me not to have the energy or the strength to do more.So hope is there lol.My scan is next week and the spleen is sitting what i call normal "for me"but the feelings are another story.My back does arch alot when " gerty" ( name of my spleen lol) gets big.

    Neil are you buried in work ?

    Evryone else i miss you and hope you can post soon.Gotta run Huggers =D

  • 1,224. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    pegetha Registered Users
    Currently Being Moderated

    Dee, 20 mg of J twice daily is the standard starting dosage for people with a platelet count greater than 200.  For platelets of 100-200, the starting dose would be 15 mg twice daily, according to my instruction sheet which comes with the med.  What is your platelet count now?  The J comes in tabs of 5, 10, 15, 20 and 25 mg, and you're supposed to take them twice daily, so they all come in bottles of 60. 

     

    Hallelujah, I'm finally completely off the HU, as of yesterday.  My doc called me and told me to stop it altogether, since the J has brought my counts down significantly.  I'm still supposed to go in twice a week for a while for a cbc, just to make sure I don't get a rebound effect from stopping the HU.  Soon, I hope, I'll cut down to a cbc once a week, and then -- maybe -- once every two weeks.  That would be soooooo nice.  My counts have been so unstable for such a long time now that the doc likes to check them every few days, so that he can catch it right away if I develop a problem.  It's a real drag, and as you can imagine, my veins are very scarred and hard.  So far, though, the techs can still access them, even though it's a challenge sometimes.

     

    Natalie, good job on getting to see Dr. Mesa!  From what I hear, he's an awesome doc.  He's one of the two or three docs who were involved in the testing of Jakafi.  One of the others is Dr. Verstovsek at MD Anderson.  I'm still seeing him, as well as my local hem/onc, but he isn't as accessible as Dr. Mesa.  It pays to be persistent, doesn't it.   

     

    Mimi, when are you going to start taking the J?  From what I'm reading in your posts, it sounds like you need it.  Since you already have the meds in hand, I can't understand why your docs don't want you to go ahead and start it.  As I see it, if there's something available to help us feel better, then why the heck not give it? 

     

    OK, gotta run, and finish a few chores.  Love and hugs to all, including all of our new friends.

     

    Pegetha

  • 1,225. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    To Everyone awesome news !  Is Jakafi , Ruxolibnib or a new and different drug ?

     

    Brian

  • 1,226. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    pegetha Registered Users
    Currently Being Moderated

    Hi, Brian,

    Jakafi is the brand name for ruxolitinib, so yes, it's one and the same thing. 

    Pegetha

  • 1,227. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    Hello to all and best wishes to all:

         Someone wanted to know how to interpret their lab results recently in a post and I just re-found the site that explains it all to you. Enter in search bar: horizon laboratory ---once at their main site, go to: understand your results. It should take you to a page where you can read all the listings in a basic CBC and a lot of other info. Hope that helps some of us..............mimi

  • 1,228. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!

    Jules, i know you've been going through so very much. I hope that you've been able to go to the docs regularly and that you start to get some improvement. Please take care of yourself! I'm worried about you.......   and i hope that the new baby will bring you much love and joy and many smiles!!   take care.......

     

    Dee, i hope that your ultra sound on the 4th shows whatever is going on with the spleen, i know that sometimes it seems that when we go to the docs, things have a way of suddenly disappearing! (kind of like with our cars/an mechanic time!)... so i pray it's all 'caught on the ultra-sound!'  I didn't know that those on Jakafi couldn't take vitamins...  so be extra careful with those germs. Any word from anyone at the office yet on the ins? Hang in there sweetie, prayerfully some of your energy will return soon! and i will also be praying that you tolerate the med well, i know you say your body responds to new meds and are concerned over the dose amt. But Angels will be watching over you!

     

    Pegetha, it's so wonderful to know that you are handling the Jakafi well!   You are such a strong gal! and i'm so proud of you   I know you must feel beat physically also (like Dee) many of times. Take care of yourself! and keep doing whatever it is that you are doing! seems to be working good!!   will keep praying for you!

     

    Brian i hope things are getting better for you too......

     

    Patti, i'm not sure if you are still at your daughters or heading to your new home. but blessings to you sweetie!

     

    Neil, hope all is still well.........

     

    Everyone, take care and Blessings to all of you!!  

  • 1,229. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Hello: To also add to Miss Mimi's post, there's a site called "labtestsonline.com" that can give you the normal ranges for cbc's etc. Hope this helps. Patti

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