The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,200. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bubs11 Registered Users
    Currently Being Moderated

    Me again,  sorry.  I meant I e mailed the society, NOT 23andme.  good night

  • 1,201. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    I,m getting the replies in my email agn yea!!!

    On the "23andme"    go 2~~~~~~~~~~~~~~~~~~~WWW.23ANDME.COM/MPN     Hope you can get on it .Search google for the above web address .Its is free for MPN .I also asked them to send me a link but i did google the one above and it cam to the web page .Let me know if you have any further problems.Sorry about the mix up

  • 1,202. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bubs11 Registered Users
    Currently Being Moderated

    Hi Dee,  Yea!  Me too.  Started receiving notifications  to my in-box this morning. So happy. 

     

    I tried  waht you said....23andme.com/mpn (also in capitals as i thought maybe the address is case sensitive.)  No dice.  A message comes back saying that there is no such address.  I must still be doing something wrong.  Wish me luck.  Off to my new doctor in an hour.  Have a great day.  Carol

  • 1,203. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

                 HAPPY BIRTHDAY CAL-GAL SARAH, YOU MYSTICAL LADY!

                              

                                              LOVE LOVE LOVE,  YOUR MEMY

  • 1,204. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Well went to onc nurses appt. re: jakafi.The ball is rolling but i,m not sure how much this is going to cost me a month.She gave me the info kit and what she called "out of shit card" lol.Its a card with my name there location and my docs name explaining that if i,m ever in an emergency waiting room or anywhere were there would alot of people/germs that i would have to go to front of the line or go to another room.Guess all this hits you after that was said lol.Anyway what she explained to me was pretty much what i have read, no supplements, especially herbs.No problem there.Now the company s surpose to call me .Then i go a week without anything before starting the jakafi.Once i start i have to go for weekly cbc,s for awhile to gauge the counts.Hope this helps it would be a wonderful thing.Have gr8 day all Huggers =D

  • 1,205. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    ALRIGHT, DEE, BABY--WAY TO GO--YOU GOT THE BALL ROLLING--AMEN! TOOK LONG ENOUGH, but things are in action now. All that you put in your post is pretty much my understanding of it also. My doc did tell me that there is a lot of toxicity in the drug--drink tons of water. I am so thrilled for you and pray that this drug is a magic potion for you. You have been suffering for so long. I am hoping that somehow it can come to you at no cost. Work with the Social Worker to find different financial programs.

    I had something that I was going to post earlier, but it slips my mind now! Hoping everyone is doing the best they can and receiving the care they need.

    I'm faring pretty well, though my spleen is on the move again--having the mean spasms and contractions and it's knocking on my liver again. This is a very recent development and I see doc in one month--so, we'll see!

    Great for you, DEE............................

  • 1,206. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    The spleen while enlarged can trap blood flow and gases and even urine flow ( which i believe is my issue)Then the spasms take place.Call the doc if it gets worse.They need to get you on the jak .The bone marrow is the silent issue which i would,nt ignore.I would press him to start something.When you go to your appt. next month.If it gets worse call and put him in the corner.Thats what i did.After awhile you get sick and tired of the same ol same ol ..nothing is working treatment.Now my doc agrees with the MF.Guess maybe he did listen to the CD or at least speak to someone else and /or did research.What ever happened after i shamefully yelled at him, worked.The jakafi will reduce the spleen size and hopefully restore some energy.We can always live in hope.Good luck and skill Huggers =D  p.s the off and on feverish feelings returned the last few days but its no big deal as far as getting through the day.Just like a hot flash on steriods. lol

  • 1,207. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    DEE: I'm all good with your expert advice and do appreciate it it so much. I did try to call my nurse all day long to no avail--nobody ever answered the phone. The clinic is closed tom--I think it might be open M,W,F. My appt is always on Mon or Wed. I know it's closed tom though. I've been sitting at the p/c too long now and spleen is really bad now--spasms and contractions all on the left mid abd. I can make it better by lying down on the sofa--it will calm down. So I am signing off the P/C now!  But I am so pleased for you, DEE..........ciao, bella!

  • 1,208. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    NO EXPERT JUST GOING THROUGH THE SAME THING

  • 1,209. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    Hello Everyone, I did go to the e-mail notifications, and if anyone would please send a not to the forum here, so I can see if I get it, that would be apprieciated very much.

    Thanks, Patti

  • 1,210. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    It's all good!......... BTW and FYI:  (The definition of an "expert" is: "X" is an unknown factor and "spurt" is a drip under pressure !!!)

     

    PATTI : Will do. I am receiving the notifications, tho for a while (ago), I did quit receiving them and I really wasn't aware of it till y'all started mentioning it in your posts. After I realized that I wasn't receiving them properly, I went in to my "preferences and reset it all. I'm not sure that it helped anything?? Stranger things have happened!!

     

    Happy Trails to all and stay out of harm's way!

  • 1,211. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated

    NOTE TO PATTI...................NOTE TO PATTI....IS THAT WHAT YOU MEANT? YOU KNOW I CAN BE RATHER DENSE AND OBTUSE AT TIMES ! ?

    I hope you are feeling well and enjoying some nice weather.........ciao bella......

  • 1,212. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
    Currently Being Moderated

    YEE HAW!!!  Mimi I just recieved your e-mail from the forum .  I did what Dee told me to do and it seems ok now!!  I just clicked on the  E-Mail Notifications, at the right top of page, and it worked.

    Thanks Dee, It will be nice to hear from everyone again!!!

    Patti

  • 1,213. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Natalie5 Registered Users
    Currently Being Moderated

    Hey All. Dee I'm so glad that you are getting Jakafi. I hope it works well for you.

    So, I met with Dr. Mesa on Tuesday, and I won't go into all the details, but , to say the least, he was great. He took lots of time to go over my case with me. He did want me to get off agrylin, and start Pegasys. I was hoping that i would be able to stop Hydrea too, but he felt that I would need a combo of Pegasys and Hydrea to keep my platelets down. He did think it was important that I get the iron infusion, just a smaller dose more frequently. Instead of a big dose that would last for several months.  So, I feel like I have a good plan moving forward.  However, he wanted me to see another doctor about all my clotting problems. So, I saw a Dr Noel also. He answered a lot of my questions regarding my anticoagulant therapy. I really liked him, and now I feel like I have a good plan if I were to have another stroke/TIA.  He is keeping me on plavix and aspirin. We are still waiting on results from lots of blood work. But that was my appointment in a nutshell!

    I guess I will see my hem/onc and get started on Pegasys next week.

    Dr Mesa did say that I could start exercising again, just no more half marathons, or anything that could cause significant dehydration. Nothing more than a 5 or 10 K. So that was good news!

    I have to say that I am exhausted from all the travelling, so I think I'm going to be lazy today!

    Hope everyone has a good day! 

    Natalie

  • 1,214. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    buddyrider Registered Users
    Currently Being Moderated

    Dee my dear, keep up the fight you deserve to be on the correct treatment and not to be ignored and be in such pain all the time.  Since i have known you on here you have been in constant battle with the docs...we are all here for you and are right behind you its just a shame you had to shout at him before any action was taken...good for you Dee

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