The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 1,275. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
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    Did you ever have a BMB ? I cant remember...Also maybe a bit of magnesium for the bone pain might help.....Too many nice people stopping over Karens house and she is so so tired.Her best friend is an RN and went over to help her wash her hair etc.The reconstruction will happen in day surgery.Right know she has drain tubes and enough skin for the reconstruction which eleminates taking it from somewhere else.So her recovery will be a slow one but alot of relief about the lymph nodes.

    I found out the doc in Boston that Dr Mesa suggested is involved in clinical trilas for husband is,nt for it and the driving back and forth can be an issue.So alot to think about .The main thing is to wait for the scans to be read to eleimate anything that would show the jakfai would,nt help.You can tell i,m reluctant to spend money.The situation has gotten worse.But holding out for test  results.I still would like to try interferon.Not sure if that would decrease the spleen /liver.Having it removed is to risky at least from my point of view.I would really need a second opinion on that one.

    As far as the legs go just make sure there is no lumps or bumps if there is get to docs asap.Jules  had a clot and it took forever to get rid of it.The fIrst visit to emergency they sent her home !!!!Geezalou  scary situation.....hang tough Huggers=D

  • 1,276. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    memy Registered Users
    Currently Being Moderated


    First of all, Karen is in my most dear prayers. Yes, it is great abt the lymph nodes. And good abt having enough skin for the reconstruction. It broke my heart when you said Nicholas broke down into tears seeing his mom being taken for the surgery. such a hard thing for a young lad to go through. But he does have his great Nana to help him get thru all of this. It's just so distressing to know how frightened and insecure he is--this is a very traumatic ordeal for him--a time of his life that will affect him for always and one that he will never forget. God bless them all.

    OKAY> Absolutely NO to splenectomy unless (it's an absolute emergency). My strong reasoning for basing my very strong opinion is due to what's going on with me. In my particular case, I've been told that I have no more bone marrow left to produce blood now and that my SPLEEN AND LIVER have stepped up to the plate to produce my blood now. Where would I be if my spleen had been removed when I was considering it when the MF was first getting bad as it was in the progress of progressing from PV to MF. I was ready to have spleen yanked out immediately due to the awful, awful pain. But doc said he would prefer to not remove it unless it was an absolute necessity. So he put me on 1000 mgs HU daily for one month and upon my next visit in one month's time, I was amazed to know how drastically shrunken my spleen had become--all the way back over to the left side and up towards the rib cage. This was determined upon palpation only (no repeat ultra sound), but i could feel the line of demarcation my own self and was quite pleased. Hence my strong view of not having it removed. But, we are all different in how we react to treatment protocol and if it ends up being the best thing for you, then, of course, you would be obliged to take that route.

         Also, I finally spoke to my friend in the LLS office down here and I will send you a personal email with a # to call and the details of our conversation. You may have tried this route before--it's the co-pay plan that LS can offer you--she said that you basically fall between the cracks in this area, nonetheless, I have a # for you to try. She stressed that you contact INCYTE at the # I've given you--she thinks that is most promising route for you to take at this point.

         All my best to everyone out there. I've been doing okay--having some bad days here and there, but I do see doc next Wed and will (possibly, hopefully) have another type of treatment plan. we shall see.

         Hope that you all are receiving the best and most proper treatment plan for your individual cases.

    LOVE AND HUGS AND MANY BLESSINGS....................mimi

  • 1,277. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Hi Everyone!  I'm sorry but this will be short, i'm fighting some germ thing right now and also very busy lately. I need to get up early, so i have to go to bed.... have read post made and will try to respond to some, soon... sorry.


    Dee, you'd asked about radiation and spleen..... here's some of what i found on it.  (don't know that it'll be of any help.. but i'm praying for you sweetie )


    #4 (at this site has some info. on: Radiation to shrink an enlarged spleen... )

    (to save you from going there, this is it:)


    Radiation therapy is a more advanced treatment option for an enlarged spleen that you can try if your body fails to respond to other treatments. Radiation therapy uses high powered radioactive X-rays to powerfully kill cancer cells, preventing cells from growing and dividing. This treatment method can be used successfully to treat an enlarged spleen by injecting highly powered X-rays into the spleen and surrounding areas, which will in turn work to kill inflamed spleen cells. This treatment has many side effects, including heavy vomiting. This treatment should be looked as the last resort for treating an enlarged spleen.


    also... (this site is on CLL, but it cover the topic on spleen/radiation)


    Radiation therapy

    Radiation therapy is the use of high-energy x-rays or other particles to kill cancer cells. A doctor who specializes in giving radiation therapy to treat cancer is called a radiation oncologist. A radiation therapy regimen usually consists of a specific number of treatments given over a set period of time. Radiation therapy is not often used to treat CLL because the disease is located throughout the body. However, radiation therapy can be very helpful to shrink an enlarged spleen or swollen lymph nodes and relieve symptoms (see Palliative/supportive care below).

    Side effects from radiation therapy may include fatigue, mild skin reactions, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. Learn more about radiation therapy.

    the site for that is at: 




    Mimi... great to see a post from you!  take care of yourself.....


    just wondering.... how long has the 'new user registration been off??'


    Blessings to everyone!!

    oh yeah.... (i'm sure you've read already, that Mayo Clinic pretty much has the same agreement with these site on the topic)

  • 1,278. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    hbneil Registered Users
    Currently Being Moderated

    Hello everyone.  I've been off the grid for a while.  I stopped receiving emails of the posts and "out of sight, out of mind."  I've also been extremely busy.  My wife went to Indiana to visit her mother on 5/2.  I followed on 5/9 and we all drove to South Carolina to see my wife's brother.  We had a mini family reunion.  Enjoyed the trip but it was somewhat tiring.  Also ate too much and exercised too little.  We did get in a couple of small hikes in the Smoky Mountains NP.  Just got back Tue.


    Just before I left, I got 3 urgent projects dumped on me.  I was working 10-12 hr days the week before so I could get them done.  Ended up having to do a bunch of work while on vacation.  Sometimes we're just too connected electronically.  We were on top of Clingman's Dome in the middle of the national park and my cell phone starts ringing.  Ughhhh!  Now I'm trying to get caught up on work after being gone for a week.


    Health wise, I'm doing good.  Everything is stable,  Had a CBC today, which got me to thinking that I hadn't seen any posts in ages.  I went into my profile and everything looked like it was set up OK.  I made a couple of changes then saved everything.  Maybe I'll start seeing the emails again.


    Hope everyone is doing good.  Got to get back to work.  I have another deadline tomorrow morning.


    Take Care,


  • 1,279. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Guess any clinical trials are out..the liver is not too healthy and thats one of the criteria.,s(finally spoke with the ONC who did the ultra sound.).After the cscan and reports come in i will need to see someone else for the liver.Not sure if Jakafi would of helped or hurt but i,m just glad i did,nt dish the money out.Huggers to all Hope everyone is getting the email form this site

  • 1,280. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Neil on the top right of this page click email notifications.

  • 1,281. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    oh Dee, i'm so sorry to hear about your liver...  i won't  even ask a bunch of questions about it, as i'm sure you don't know too much yet anyways, but do they need to put in a referral for the specialist? or will they just be able to get you an appt. once they go over the C Scan? I'm praying for Angels to surround you sweetie! you are carrying way to heavy of a load, and if there's Anything at all i can do........ Please, let me know. (i will see if i can find out anything at all...)  hang in there! and Remember..... Always Keep 'Faith! and Hope!'   

    and.... how far is Boston from you? (i'm guessing.... 35-45 min??)  I Really wished you would go there!!   Prayers for you my dear friend.......

  • 1,282. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated


    still lifting Karen, Nicholas and everyone in prayers as well........

  • 1,283. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Than you Sarah..How are YOU ????Hope your catching some " Sarah time" liver   makes one wonder if interferon would of been a good thing back when i asked ????Huggers=D

  • 1,284. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Laflemke Registered Users
    Currently Being Moderated

    Hi    I I'd have a BMB done when I was first dx'd    I didn't get a copy of the results,  guess I should ask for that    I will try some magnesium.  My bone pain seem so small in comparison to all you are going through.   I pray for you and your family!!   I hope you can work through all the issues so you can see the doctor in Boston.  With all you have going on, it sounds like you really need someone who really knows his stuff.  


    I am sorry to cut this short, but it is a beautiful day and I have lots to try to get done.  


    Take care everyone,   I hope you are all doing ok.


  • 1,285. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    DEE11 Registered Users
    Currently Being Moderated

    Its all good LaVae, your issues are just as important and need attentionas we all do.,Patti can,t log on.Guess this website is a mess.....Maybe time to start a new thread.This one is getting long..86 pages

  • 1,286. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    flower79 Registered Users
    Currently Being Moderated

    Hi LaVae, yes, if it was me... i'd diffidently get a copy of your BMB (it's not too late) usually they can be obtained through the med. records dept., if it wasn't too long ago that you had it done, they may just be able to print it out for you right there and then, if not... then you just request it, and they will mail you a copy (at least that's how i've always obtained records, when after the fact) those 'Important papers of test results' can be very useful to you later on (or even prevent you from needlessly needing an additional test). For us all here, it's best to keep a file of all our records.

    and i agree with Dee.... 'your pain' is just as important!   we all support one another! and learn from one another!

    I pray things improve for you....


    and Dee, as for me..... I happily realized today, that i am 'No longer' getting those awful headaches that i'd been getting again! thanks to the phleb. i had done a few weeks ago! yea.....    however, my energy level is a bid rough at the moment, but then again..... i've been super busy lately. and i have been fighting some pesky germs for a week now! not gotten sick, just have the sore throat and more tired. (several around have gotten sick, and germs just float around!! being so friendly and all!!!! lol....)


    Neil, glad you go to spend some nice family time!   hope you can catch up with your work soon without getting too worn out!


    Linda, i too am curious as Dee about your job? any hope of being able to retire anytime soon?


    Pegetha, sweetie.... how are you handling the Jakafi? we haven't heard from you and i'm getting worried that it may be more than just being busy and worn out?  How are the side effects coming along? Praying for you......


    Patti, Mimi, weePea.... hope things are going well with you ladies?.........


    take care all........ and Blessings to all of you!

  • 1,287. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bubs11 Registered Users
    Currently Being Moderated

    Haven't posted in a while.  How is everyone doing ?   In answer to your question, Dee -  I never had a BMB.  doc said it wasn't necessary as my blood test results show PV so clear.   I was so relieved, but in hindsight it might have been a good idea just so that if things change I would have something to compare it to.  but, that said,  I am the worlds biggest chicken and I am not going to mention it to my doc when I see him next Tuesday. How does one take magnesium?  is it in pill form?  I've, of course heard of it before but don't know of anyone who takes it.  Except for being tired, I'm really OK.  Yesterday I spent the afternoon planting flowers, and that really did me in.  Every single muscle in my body hurts, from my feet to my shoulders.  UGH!!!!   but the flowers do look nice.  Today, Sunday, I will just rest.    All the best to everyone.  Take care of yourselves.    I don't write often, but you are all in my thoughts, always.    And I wish you all the best that can be for each and every one of you.    love,  Carol.  Ps.   I'll let u know what the doc tells me when I see him soon.  it's been six weeks since I've seen him so I am quite anxious.

  • 1,288. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    pegetha Registered Users
    Currently Being Moderated

    Good morning, all.  Sorry I haven't been on board much lately.  I've been so horribly tired and stressed out that I don't often turn on the computer when I get home.  Just seems like too much trouble.  (Carol, that's the most common complaint all of us have, so know you're not alone. )


    Other than that, I'm doing OK.  I'm now over three months of taking Jakafi, and it seems to be doing what it's designed to do.  I know that it isn't a cure, and that if I stopped it now I would go into platelet rebound, but that was also true of the HU.  My doc had to be very careful when he was taking me off it, twice a week blood checks, and doc's appointments every couple of weeks.  After three months, I'm finally off the HU!  It was a Godsend and a life saver for years and years, but when I began developing multiple squamous cell carcinomas, all the docs agreed that I had to stop it.  Apparently, that is a fairly rare side effect of long term use of HU, but can be deadly.  As my doc put it, "we know what was appearing on your skin, but I was worried about the ones perhaps developing on the inside."  Anyway, I'm completely off HU now, and doing OK on Jakafi.


    I know that it's still not known what the long term side effects will be of Jakafi.  My hope, though, is that with all of the advances now being made, that there will be a real cure eventually rather than just something to control the symptoms and to hopefully stop the advance of the disease.  My main side effects are due to the fact that now my red counts are low, and I'm actually anemic (thus the tiredness).  Meantime, my platelets are still on the high side, so the doc has increased my dosage of the Jakafi from 20 mg twice a day to 25 mg twice a day.  I won't start the higher dosage until my current prescription is completely gone.  (Those little pills are like pure gold, can't afford to throw any of them away!)  As far as "other" side effects are concerned, the main two that bother me are weight gain (I was actually underweight before I started the med, and needed to gain some weight, but now I'm on the edge of going in the other direction -- uh oh) -- and, oh yes, um, how do I put this, flatulence!  At least it's not screaming diarrhea the way some of the new JAK inhibitors are, but it's bad enough.  Unfortunately, it's a common side effect, so if you're thinking of taking Jakafi, be prepared to enter the jet age. 


    Dee, I'm so so sorry you're having such a hard time with everything and get some answers soon.  You're always in my thoughts, as are all of our little group here.  Even though I may not post as often as I should, I check the thread whenever I can, and try to keep up with everyone.  It's always good to read, and to try to keep up with my blood buddies.


    The best to everyone!



  • 1,289. Re: PART 4 ,LIVING WITH PV, ET MPD,S
    Bri Registered Users
    Currently Being Moderated

    Hi Everyone,

    To all of my blood buddies as Pegatha so appropriately named us. I have been following everyones comments each and every day and  feel so connected because of all of your input. I too am seeing the Doc.on Tuesday after 6 weeks and jotting down my questions in advance. My bloodwork was  excellent last check and I'm hoping it is still at the same levels or better !  Hermatocrit  40.7  and Hemoglobin 14.8. Taking plenty of HU ( 8500 mg per week ) The last time I saw the Hem/Onc. he stated I was just at the beginning of PV even though I had high blood levels since I was age 57. I am now turning 62 in June.  I too never had a BMB since the blood test proved I had JAK 2 and PV. No matter where I go and as rare as PV is suppose to be , someone either knows someone with it , or heard of it before. I was just with my Mom in her GP office ( he knew of PV) and he said that if I was going to get something at least PV was non- fatal that it could be worse. When I go to the cancer center  to see my Hem/Onc. on Tuesday I am amazed how crowded the chemo rooms are with folks. In the past I would be giving a unit of blood ( phlebotomy) and all the other folks  were getting chemotherapy. So I would think to myself,  if you had to choose Brian which one would you want ? Anyway to everyone I wish you all the best and pray for each and everyone of you. ONE DAY AT A TIME !

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