Although most said they'd let their physician know if asked, survey finds
by flanjivfur on Mon Jan 10, 2011 08:23 AM
Does anyone have polycythemia vera? Please let me know. I have been recently diagnosed. I need to know info on what I can and can't eat and what vitamins I can take. I have been researching but my head is spinning with all I've found. One article will tell me one thing and the next another. Please Help.
by Zapnoodle on Tue Jan 11, 2011 05:41 PM
On Jan 10, 2011 8:23 AM flanjivfur wrote: Does anyone have polycythemia vera? Please let me know. I have been recently diagnosed. I need to know info on what I can and can't eat and what vitamins I can take. I have been researching but my head is spinning with all I've found. One article will tell me one thing and the next another. Please Help.
On Jan 10, 2011 8:23 AM flanjivfur wrote:
Diagnosed with PV 8/10. Still learning. Being treated with 81 mg aspirin with meals (3X/daily) and phlebotomies. I am on a learning curve and have recently found that a company called INCYTE out of Wilmington, Delaware is doing some very interesting research. Open to discussion. Best of luck to you.
by Zapnoodle on Tue Jan 11, 2011 05:50 PM
On Jan 11, 2011 5:41 PM Zapnoodle wrote: On Jan 10, 2011 8:23 AM flanjivfur wrote: Does anyone have polycythemia vera? Please let me know. I have been recently diagnosed. I need to know info on what I can and can't eat and what vitamins I can take. I have been researching but my head is spinning with all I've found. One article will tell me one thing and the next another. Please Help.Diagnosed with PV 8/10. Still learning. Being treated with 81 mg aspirin with meals (3X/daily) and phlebotomies. I am on a learning curve and have recently found that a company called INCYTE out of Wilmington, Delaware is doing some very interesting research. Open to discussion. Best of luck to you.
On Jan 11, 2011 5:41 PM Zapnoodle wrote:
My PV presents with an overadundance of red blood cells. It can present with overabundance of red, white or platelets. Since mine is a red blood cell (RBC) issue, my diet is restricted from red meats, any iron-rich food (including veggies like broccoli), and must consume H2O to maintain hydration. Caffeine is also limited since it causes dehydration. No alcohol since my liver and spleen are both enlarged. I have pruitis (itchy skin rash) and can only take quick, tepid showers since hot water exacerbates the itchy response. I have found a wonderful hematologist/oncologist here in northern, NJ. He was not my first connection. The first doc was unacceptably uninformed, and I switched to my present doctor. You may have to shop around a bit for someone who is aware of our condition as it is very rare. I have also been attempting to find nutritional information on our specific condition, but am having a great deal of difficulty doing so. We have a very rare myeloproliferative neoplasm (cancer of the bone marrow/blood) and as such, information is rather limited. Would love to share info, if you are up for it. Again, best to you.
by Sharjoe on Thu Jan 13, 2011 01:39 PM
My husband was diagnosed with polycythemia vera 8 years ago. Our doctor put him on hydrea (chemo) 500mg 2 pills a day. This drop his red cell count and has kept it in range. Other than taking the medication daily, he is doing fine with this disease. In July 2010 he was diagnosed with laryngeal cancer, stage 3 because of the size of the tumor. Thankfully it had not spread. After 3 cisplatin and 35 radiations treatment he is in remission. I feel that the fact he had been on hydrea for 8 years helped in not spreading the laryngeal cancer.
Our cancer doctor told us when he was diagnosed with polycthemia vera that the hydrea (chemo) was the way to go. He had an overabundance of red blood cells and platelets. They didn't tell him what not to eat and up until the laryngeal cancer he eat whatever he liked with no problems. He did quit drinking when diagnosed and he was a heavy beer drinker. He has had no problems with the polycthemia vera at all. No itchy skin rash, etc. We were told that this disease progressed slowly and that he could live over 15 years with this disease. There are people that have had this disease for over 20 years with no problems.
Just remember that everyone is different in how any disease effects their body and each have different ways in how they respond and will give you different options. If you have a good cancer/blood doctor they will help you the best. Good luck to you.
by Shell1 on Sat Apr 09, 2011 11:54 AM
Hi, My first husband had P rubra V , then myelofibrosis which was easily managed .We were told that in most cases you live well as can be under the usual protocol management and that you usually pass away from "other" causes, which was the case. There is plenty of info on diets etc- and yes your head will spin trying to absorb all the info get it right.
Lucky we have so much available to us now.
Good luck xxx
by Sharjoe on Sat Apr 09, 2011 05:51 PM
It is funny but I had someone tell me that polycythemia vera was not a cancer and I told them yes it was and that they needed to do their research. We were told it was a rare form of blood cancer that mostly is in men and very treatable. Thankfully my husband's hasn't advanced. Like I mentioned above he was diagnosed with laryngeal cancer in 2010 and just underwent a total laryngectomy, neck dissection and throat reconstruction due to the cancer. In all this the polycythemia vera hasn't changed. Like I said he has been on Hydrea since diagnosed 8 years ago. At no time were we told to watch his diet. We were lucky because the doctor who diagnosed the polycythemia vera knew all about it. I know right before surgery his platlets were a little high but not high enough to stop surgery.
Cancer, regardless of the form, is a horrible disease and it is a shame that after all these years, there is no known cure or actually the causes for the different cancers.
I wish your father and family the best.
by healing1 on Wed Apr 20, 2011 04:47 AM
this is what I found so far:
Kiwi Fruit: ?The Use of Kiwi fruit is found very helpful in platelet reduction.Grape Juice: ?Researchers have studied that the use of Purple Grape Juice may help in reducing the risk of blood clots. Purple Grape Juice; somehow have the ability to unstick thickly populated blood platelets.Green Tea: ?Use of Green Tea is also found very encouraging. Those who are using green tea have found decrease in their symptoms.Dark Chocolate: ?At the XIX Congress of the International Society on Thrombosis and Haemostasis, held in the UK in July 2003 a study from Ninewells Hospital, Scotland, was presented about Dark Chocolate, which is quite interesting.It was reported that Dark chocolate inhibits platelet clumping (aggregation), a major cause of blood clots (thrombi) that trigger heart attacks and stroke.Thirty subjects were randomized to receive 100 grams of white chocolate, milk chocolate, or dark chocolate. Four hours later, blood samples of each group were tested in vitro to see if chocolate intake modified platelet aggregation. While white chocolate had no effect and milk chocolate showed a trend towards reducing clumping, dark chocolate inhibited platelet aggregation by 92%. Of the three types of chocolate, dark chocolate has the highest content of flavonoids, known to inhibit cyclooxygenase (COX1) that helps block platelet aggregation.The researchers suggest that dark chocolate has potential to reduce thromboembolism and cardiovascular diseases.Vitamin E: ?Vitamin E is known as anti-thrombin. It circulates in the blood and prevents platelet aggregation or clots occurring inside the vessel, but does not interfere with the normal clotting process in wounds or with normal healing. In fact, it actually accelerates healing of burns and wounds.Of course, Vitamin E does not have the possible side effects of aspirin. Sesame oil further reduces the risk of thrombi.Arazoo Mush is a Pathologist, Working in a pathological laboratory for the last eight(8) years. for more information on Polycythemia Vera visit http://www.polycythemiavera-pv.com
by morgoth31 on Tue Apr 26, 2011 05:00 AM
ok just to let you know not all polycythemia is cancerous. some forms of it which are normally classified as polycythemia ruba vera are caused by tumors on your kidneys or some other organs. these tumors cause your body to over produce EPO which causes relative polycythemia. the cancer drugs that are used are used because they surpress the bodies ability to produce red white and platelets. to the best medical knowledge ive found shows that polycy is just your marrow being over sensistive or indipendent of EPO. and in some extreme cases those self same drugs cause fibrous or sometimes cancerous lukemias especially if the radioactives are used but from everything ive been told those are used only as last choice drugs. but remember as much as you may be afraid of that if you dont keep your numbers down with those drugs you will not live as long as you would with them. just because they can cause problems later if you need them now use them. remember the chances for those side effects are rather low and well documented.
by morgoth31 on Tue Apr 26, 2011 05:13 AM
but yes it is like one but unlike cancer as everyone sees it it wont spread it wont move to other systems. look at this page.
this is a disorder a myeloprolific disorder or MPD
and this site
this isnt what most people are thinking about when they hear cancer tho some docs call it a neoplasm which is technically a cancer.
by Grampian on Thu Jun 30, 2011 02:54 PM
I was diagnosed about 10 years ago with myelodisplaesia,which was subsequently changed to poly cythemia 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 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 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 you.
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