The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,365. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    buddyrider Registered Users
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    Julie my dear i am sorry to hear of your bad news, you know we are all here for you keep strong ok...

    I am safely home from my trip to Mimi's, which was just amazing and i enjoyed every single minute there, wish i could have stayed longer but heyho work calls mee lol Thank you Mimi for having me and for having such a fun filled visit, i do hope your catching up with much needed rest now i am gone lol

    Dee, Patti, Sarah, Brian, Pauli, Pegatha, Emily (congrats on getting married), Linda K, Jody, Caroll etc etc cant remember anymore names..BUT your all in my thoughts, take care of yourselves and keep strong..

    love from wee p x 

  • 1,366. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    Thanx !!!

  • 1,367. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    HAPPY FATHER'S DAY TO ALL  !

     

    ENJOY !

     

     

    Brian

  • 1,368. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    lkbanks Registered Users
    Currently Being Moderated

    Hope all of the Dads on this post have a Blessed Fathers Day!Also hope all are feeling well today...LindaK

  • 1,369. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    jodyhann Registered Users
    Currently Being Moderated

    Hi everyone!

     

    Well, I did it. I made the appointment with the Hematologist/Oncologist. I'm organizing my information into a binder similar to Lina's (I can't remember her name here but I follow her blog). I would like to include all the research information about MPN's being classified as a type of cancer. I won't be seeing Dr. Jonathon Bender. Instead I will be seeing Dr. Trevor Feinstein. Has anyone heard of these doctors in the Atlanta area? According to the lady who made my appointment, they tend to view MPN's as a disorder rather than a form of cancer. I tried looking for the spectacular links you guys so graciously provided in the past. Is there any way you guys could post them again for my sake? My appointment is Wednesday, June 28th and I would like to be armed with as much information and research as possible. I appreciate all of your assistance. Thank you all very much. all my love to all of you. Muah!

     

    Jody

  • 1,370. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Emily87 Registered Users
    Currently Being Moderated

    Hey, Jody! I'm Lina(Real name Emily, Lina is short for my nickname Emilina)...thanks for following my Blog! It makes me feel so good to know that someone besides me is getting something out of it. It is cathartic for me to write, but ultimately I want to reach people!

     

    Just wanted to toss out there that you might want to talk to the MPN Research Foundation. They would probably have a good list of docs, and maybe even "reviews" of sorts from other patients for doctors in your area.

     

    Some good places to go for info would be mpnresearchfoundation.org, http://www.cancer.gov/cancertopics/pdq/treatment/mds-mpd/Patient/page1, and http://www.ncbi.nlm.nih.gov/pubmed/17882280 also. Personally I recommend against Wikipedia simply because those articles can be edited by individual users, and while they do cite their sources for the most part...I tend to trust medical journals dirctly, rather than people's excerpts/usage thereof

     

    Let me know if you have any questions that I can help you with

     

    Lina

  • 1,371. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    jodyhann Registered Users
    Currently Being Moderated

    Thank you so very much! You have no idea how much you have helped me. Thanks again!

     

    Jody

  • 1,372. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    macnanna Registered Users
    Currently Being Moderated

    Hi All,

               Firstly welcome more new members. I had my biopsy yest and it was no fun but nows its done, now we wait for which stage and type of nhl it is, hope every one are going along the best they can, take care love julie xo

  • 1,373. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    Jody, that's what my Doc. in Phila. classified PV as a disorder not  a cancer. He proceeded to go into detail about how cancer cells multiply and so on and so on. He stated that many of his collegues Hem./ Onc. would agree it's a  disorder . Good luck on the 28th it's my birthday June 28th. I've reached Social Security age ! Yeah ?

    lol !

     

    Brian

  • 1,374. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Patti Registered Users
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    Hello Jody: If you go to " LLS.org" then search myeloproliferative neoplasms, it will give you the definition, that it is a Blood Cancer!  Any Dr that doesn't treat this as such means you need a different Dr. You can also go to the American cancer society and get the same definition. We all take some form of Chemo, and there are many Dr's who wish to treat this lightly. But if they do, then you need a specialist for sure. I have been awarded my SS disability and my Aflac Cancer policy, that have got all the information that this is  a blood cancer. It can be managed, and with meds, and a good Dr. you can do well. I hope this is of some help?

    Patti 59, et 07, PV 2011

  • 1,375. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    jodyhann Registered Users
    Currently Being Moderated

    Oh my gosh! Patti, how in the world were you awarded the AFLAC cancer policy? I was just looking at mine yesterday and they put it in bold the it will not cover MPN's. How can you get around that? I also have an Allstate Cancer policy and I'm sure I will need to know how to navigate around that as well. Wow!! See, this is EXACTLY what I mean....you guys are simply the greatest. There is a wealth of knowledge here. Yes, this is of TREMENDOUS help. Thank you, thank you, thank you!!!! All my love to you!

     

    Jody

  • 1,376. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    Patti, I got regular Social Security which begins in August ! How did you manage to get SSD ? What are your symptoms ?  PV is listed with other MPN's on the disability list for Social Sec. I was going to apply for it  ( MORE INCOME AND MEDICARE IN 24 MONTHS ) and had a phone conference all set up, but I backed out thinking that my Doc. might not complete all the information required. HELP !!!!

     

     

    Brian

  • 1,377. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Jules.. your on my mind and in my prayers.I can,.t imagine the wait game.But we,re here for you!!!

    PV/MF/ET is a disease that most docs do not understand.Maybe searching MPN sites like Patti suggested would help.I will search my saved files and see if there is any helpful info.

    Hugs to everyone,.Hope anyone in this heat wave ( 100 degrees here)is holding on ok.Tata =D

  • 1,378. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    lkbanks Registered Users
    Currently Being Moderated

    Dee,how are you feeling,do you still have a lot of pain?Also how is Karen doing?I will be praying for her and all my Blood Buddies.

    My daughter got a good report on her blood work yesterday.All counts in normal range.She has CLL.

    Hope everyone has a great day and God Bless.......LindaK

  • 1,379. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Feeling better that i don,t have appt,s till next month lol.Karen is doing well thank you for asking and i,m happy your daughter is doing well also.Are you still working ?The pain comes and goes  lots of probs with legs and ankles.???No jakafi for me unless i have a liver biopsy so i said "no ".How are you feeling Linda.I know you have alot on your plate as well.Prayers to you and your family.

    Patti had a mishap with her coffee and keyboard and now is without her "lifeline"She needs to send it out.She tried to dry it but believes her mother board is gone.We chat via text on cell phone.She is,nt a happy camper .I,m just praying the repair will be fast and not too heavy on the pocket.Huggers =D

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