Polycythemia Vera

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RE: Polycythemia Vera

by karen59 on Sun Sep 02, 2012 05:39 PM

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Hi Karen, I, too, have been diagnosed with polycythemia vera, however, it was at a very young age of 29. I am now 53 years old and have been taking the drug Hydrea for 24 years. I am fatigued, experience bouts of weakness, headaches, very itchy skin which is worse in the winter months, and have been diagnosed with depression, anxiety and hypertension. My disease manifested itself in my liver, in a condition call Budd-Chiar syndrome. I have found the best hematologist in the world, who has been on every step of the rocky journey with me. My advice to you is to run, not walk, to a hematologist/oncologist. They can do a bone marrow biopsy, and get you started on a treatment plan as soon as possible. I have my good days and my bad days, and I somehow, with God's love and grace find a way to push through it all. I wish you the best, will be praying for you and want you to know that you are not alone in your journey. Take care of your body, listen to what it tells you. If it says rest, then rest. If it tells you to sleep, then sleep. Go with the good days, and the bad days. Please let me know who you are doing. The disease is NOT a death sentence!

RE: Polycythemia Vera

by healing1 on Sun Sep 02, 2012 07:45 PM

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On Sep 02, 2012 11:08 AM maryannesteiner wrote:

hi ...i have found a pv group of friends in facebook and ive learned a lot from them ....http://www.facebook.com/groups/180180118669211/ "" target="_blank" rel="nofollow">http://www.facebook.com/groups/180180118669211/ " target="_blank" rel="nofollow">http://www.facebook.com/groups/180180118669211/

they are ready to help and share things .....stay positive everyone and godbless...

Thank you Maryanne for the FB link. It is truly wonderful.

Casey

RE: Polycythemia Vera

by GUSRENTIT on Mon Sep 03, 2012 08:17 PM

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Well guys I have a great update! I'm on day six of the L-ARGININE, WOW,, is all I can say, I feel 100% better, all around, my BP this morning was 122/84, most of my simptoms have been reduced to the point that I can handle them, very well! No Rx's at all, just Aspirin(650mg) and L-Arginine(10G/10000MG), both split AM and PM. No side effects at all, none! I'm looking at reducing both in the coming week, and see how low I can go, and still feel good and keep my BP down!

Good luck everyone!

Gus 

RE: Polycythemia Vera

by SAMEOSAMEO on Tue Sep 04, 2012 04:31 AM

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Hi:

I have found what I think is a very caring and knowledgable hematologist. He found that my white cell levels are too high along with the red cells and he has put me on oxygen for the next 3 months. If my white cells level out he will then do the bone marrow biopsy. While I'm not looking forward to the biopsy I am happy we are on to a plan. I feel like I'm moving forward anyway. Thank you for your prayers and I send them your way also. I know what you mean about the itchy skin. I look like I have the chicken pox lately. I have those good and bad days also and listen pretty intently when my body is yelling at me. I hope your days are tolerable and thank you for the kind words.

Karen

RE: Polycythemia Vera

by karen59 on Tue Sep 04, 2012 03:38 PM

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Karen,

You are on the right path when you find a caring and knowledgeable hematologist. Your doctor makes such a huge impact in your treatment. Have you had to do a bone marrow biopsy before? It is always helpful to find someone who is going through what you have, as you can bond and understand each other. Take care of yourself, listen to what your body tells you, and take it one day at a time. I wish you sunny days. I appreciate each day more, even if they turn out to be what I hadn't envisioned. Keep me posted and think positive!

RE: Polycythemia Vera

by GUSRENTIT on Tue Sep 11, 2012 07:42 PM

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Ok guys I'm into it for a solid 2 weeks now, still feeling good, and BP is staying down, cut back on Aspirin to 325mg @ midday, added an extra vitamin E. I have a bunch more energy, my brain is out of the fog, Tinnitus has been reduced, but still there, I can handle Sun and heat a bit better, all other simptoms have been reduced. No side effects that I can tell of. I can recomend it to anyone, go out and get some, "NOW" brand sells a powder that sells for under $30 for a lbs. and one tea spoon = 3000mg just Google it. Oh, it's L-ARGININE

Good Luck,

Gus

RE: Polycythemia Vera

by Sandridge on Sat Oct 13, 2012 01:02 AM

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Any updates? I would like to know how its been going on the L-Arginine.  I have been on 3000mg per day for a month.  My blood pressure is slightly lower.  I'd like to know how 10,000mg per day has affected you.  The recommended dose is 3000mg per day.  I want to know if more that that is healthy.  Let me know how you are doing.

RE: Polycythemia Vera

by GUSRENTIT on Sat Oct 13, 2012 01:53 AM

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On Oct 13, 2012 1:02 AM Sandridge wrote:

Any updates? I would like to know how its been going on the L-Arginine.  I have been on 3000mg per day for a month.  My blood pressure is slightly lower.  I'd like to know how 10,000mg per day has affected you.  The recommended dose is 3000mg per day.  I want to know if more that that is healthy.  Let me know how you are doing.

Well all I can say is that it has given me my life back! Now Keep in mind that the 3G=3000MG you take is below min., and I take 5G in the AM and 5G in the PM, safe dozes go upto at leat 30G a day and seen some info that takes it up to around 60G. The half life(useful time) of it is around 2 hrs, it would be good to take smaller amounts every few hours, but I also have to eat and take Aspirin, and you should avoid proteins and aspirin at leat 1 hr. before and after, the L-Arginine. One of my neighbours who is 74 yrs old, and is a 4 time cancer survivor, missing a kidney, diabetic, and has had a broken collar bone for over 1.5 yrs that would not heal. Well his wife could not believe, how good I looked and felt, so she got him on it, well after a month or so on it, @ just 3G he is off insulin, he can talk clearly again, he can stand up by himself, went to Doc, got Xrays, Doc could not beleive his eyes, his collar bone break is stitching back together. He can think clearly now, OH BTW his calestarol #s are way down too, I get a call at least once a week, telling me how great he is doing. My BP has been holding steady under 130/90, I'm able to to run my business for the first time in over a yr. I'd say it works for us! Get your doze up to at least 10G a day, and get back with me!

Good luck,

Gus 

RE: Polycythemia Vera

by healing1 on Mon Oct 15, 2012 06:20 PM

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Gus, You sound like you are doing so much better than the hell I last visited you in. Awesome!!!! Good for you. I think you would like the PV facebook page and so would others love to hear your discovery!!!

Casey

RE: Polycythemia Vera

by Lizelle123 on Tue Oct 23, 2012 11:08 AM

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On Jun 30, 2011 2:54 PM Grampian wrote:

I was diagnosed about 10 years ago with myelodisplaesia,which was subsequently changed to poly cythemia vera.Appare "" target="_blank" rel="nofollow">http://vera.Appare " target="_blank" rel="nofollow">vera.Appare ntly my variety is quite rare since my  haemoglobin was  high,but my platelets  were low,(100 at the  time).After various doses of Hydroxyurea I am presently taking one (500) per week.My "" target="_blank" rel="nofollow">http://week.My " target="_blank" rel="nofollow">week.My Haemoglobin is now normal,but my platelets is now  hovering around  50.I'm  fortunate to have  had no side effects,such as itching and to be on such a low dose of medication.I watch my  diet.I don't smoke,drink very little and exercise a lot.I just turned 70 and feel  fine.The "" target="_blank" rel="nofollow">http://fine.The " target="_blank" rel="nofollow">fine.The haematologist whose care I am under tells me I won't likely  die of it,but will very likely die  with it.I would like to know if there is any interesting research and  developments on this,although I'd like  to think me specialist  keeps up to date.Thank "" target="_blank" rel="nofollow">http://date.Thank " target="_blank" rel="nofollow">date.Thank you.

was diagnosed with Polycthemia 16 years ago I started getting very dizzy when going under fluorescent lights so my doc did the necessary test.  My iron levels when diagnosed was sitting at over 18.

 

16 years later my levels are around 14.  I have not really had any of the symptoms as been described however I did allow myseld a lapse of 13 months since my last bleed.

 

I did bleed a month ago and am due again in 2 weeks time.  Lately I have noticed white spots on my arms and these are also forming on my hands.

 

I have started taking a liver tonic by any and all help and tips would be greatly appreciated.

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