I WAS DIAGNOSED FOUR YEARS AGO. I WAS IN THE HOSPITAL 6 WEEKS. I GUESS I AM
LUCKY I ONLY HAD THE ITCHING ONE DAY, AND I USED BENEDRYL CREAM ON MY LEGS AND
THAT REALLY HELPED. I HAVE NOT HAD TO HAVE A PHLEBOTOMY IN OVER A YEAR. I
TAKE ANAGRELIDE TWICE DAILY, THE ONLY THING THAT REALLY BOTHERS ME IS I GET
SICK FEELING, AND I GET REAL HUNGRY BEFORE LUNCH. I HAVE LOSS 70 POUNDS. MY
WEIGHT LOSS HAS LEVELED OFF IN THE PAST 6 MONTHS. DOES ANY ONE GET SICK
FEELINGS? IF SO WHAT DO YOU DO FOR IT? PUG
WOW, i have not had the pleasure of losing the wt and i will try the bend. creme. i am not on any medicine other than 2 baby aspirins a day and i stay pretty fit. I get the sick feeling when i have to recover from the blood withdrawals. I have a great dr., thanks je
Hi OMG, you are all right, but I think it is to early for you to be on hydrea.
I 've been with PVfor more than 31 years, my doctor said no way I am going to be on hydrea.
Do you have other symptoms?> To: robinson_env@hotmail.com> From: polycythemia-vera-cpt6955@lists.careplace.com> Subject: Re: [polycythemia-vera] No Subject> Date: Tue, 1 Jan 2008 17:25:18 -0600> >
hi my mom has pv she gets very sick quiet often nothing helps her either she doesn’t have the itching . she has had this for about 19 yrs and yes she has lost alot of weight in the last year. she takes hydrea and that depends on her blood counts her white count goes high and her platlets go low. hospice is now taking care of her. at first she had to have her blood taken out often then it got less and less she had to have it done. they gave her platlets and blood once but said they were no use to give her anymore
Hi Tammy.
We are dealing with unknown, nobody really knows anything about it. Sometime I get very sick but rest of my life I 've been doing just fine.
Let me in which state are you, perhaps, I 'd like to contact you> To: robinson_env@hotmail.com> From: polycythemia-vera-cpt6955@lists.careplace.com> Subject: Re: [polycythemia-vera] No Subject> Date: Fri, 28 Dec 2007 20:47:56 -0500> >
Hi Tammy.
We are dealing with unknown, nobody really knows anything about it. Sometime I get very sick but rest of my life I 've been doing just fine.
Let me in which state are you, perhaps, I 'd like to contact you> To: robinson_env@hotmail.com> From: polycythemia-vera-cpt6955@lists.careplace.com> Subject: Re: [polycythemia-vera] No Subject> Date: Fri, 28 Dec 2007 20:47:56 -0500> >
Hi miniso I am glad to hear a reply. Yeah we are dealing with the unknown and you have had pv since you were 14 my mom is now 69 she got diag. at around age 50. so you have had this disease for over 30 years… wow . I stopped and saw my today after church and she is very weak and in alot of pain . Has your spleen gotten very enlarged? mom doesn’t seem to have any good days anymore. where did u say u were from?
I am glad you raplied.
I am Dominican but I am living in NY since 1993.
My spleen is it normal thanks God. My life is normal, sometimes I have a lot headache, Itching in my legs and back specially after warmbath.
Also sometimes I feel like heatwave all my body, so but so tire like all my energy had gone.
I am a very sad person due that my wife does not understand me, she thinks that I am faking my symptoms,
I just need someone to talk about it or perhaps can understand me> To: robinson_env@hotmail.com> From: polycythemia-vera-cpt6955@lists.careplace.com> Subject: Re: [polycythemia-vera] No Subject> Date: Sun, 30 Dec 2007 16:16:33 -0500> >
This is in reply to Tammy. Once you are in the spent phase of this disease, all bets are off. Doctors try to prevent the spent phase from happening. To live longer than 15 years with this is remarkable. I am a 47 year old white male and I was diagnosed in June of 2007. I haved learned that scientist are looking at ways to control the Jak2 mutation, and it looks promissing in the next 3 years. My doctor said that I may be able to come off the hydrea by then. You don’t want to turn off the gene, you simply have to control it, and for those of us with Polycythemia, the gene is abnormal and aggressive. I am on 2 hydrea’s per day and my counts have dropped way down. I have seen people out here on this forum taking alot more meds and getting drained alot more than me, so yes, this is a mystery disease, but I am confident we will see a drug in the near future to take control of this. Sorry to here about your mother, all of our prayers are with you.
Hi back at you Minosa, Happy New Year to you. Why do you think it is to early for me to be on Hydrea? I have done extensive research on this disease. I do understand that alot of PVers have only the high red cell count, so more blood letting is involved, however all three of mine are up. My platelets started out at 700,000 and my white cells where up to 29,000, my hematocrit was 51. Here is what is happening with me, the drug takes my white cells and my platelets down, not my red cells, for whatever reason, the blood letting takes my reds down. My platelets where checked 2 weeks ago and my counts are as follows, Platelets 200,000, white cell count 11,000, red cells at 50.1. I do not need a blood clot, so please tell me why you think I should not take this drug? By the way, 2 months ago I was having extreme chest pain, I was told that I may have had a lite heart attack, my blood doctor thought it was more of an esophageal problem, but the pain went down my shoulders and into my arms. The only other problems I have are itching and rolling feeling in my legs, sometimes lite pain. My Doctor thinks I will live a long life with no spent phase, I thought he was being thoughtfull, but I, like others want the truth.
OmG, thakns for the greetings.
If you want you can call me at my house or cell phone. I am usually in my house after 3:30 and on weekends.
516-872-1743 home
516-765-6847 cell> To: robinson_env@hotmail.com> From: polycythemia-vera-cpt6955@lists.careplace.com> Subject: Re: [polycythemia-vera] No Subject> Date: Wed, 2 Jan 2008 16:36:40 -0600> >
Hey OMG how you doing?
I replied while ago saying that I was thinking it is too early for Hydrea. Well I heard that one of the side effect of it is that it changes the PV into Leukemia. It is not official, I just heard it from someone else. > To: robinson_env@hotmail.com> From: polycythemia-vera-cpt6955@lists.careplace.com> Subject: Re: [polycythemia-vera] No Subject> Date: Wed, 2 Jan 2008 16:36:40 -0600> >