Polycythemia Vera

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RE: Polycythemia Vera

by SAMEOSAMEO on Thu Aug 23, 2012 02:49 PM

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Hi:

I had my first consult yesterday for my diagnosis with PV. The doc told me that if I were to have a Phlebotomy it would kill me because my white cell levels are high also. He is going streight to the bone marrow biopsy. It's scheduled for the 21st of Nov. Like you I cannot walk from one room to the next without panting and having to sit before I can talk to anyone. I can't even do my yoga, which I miss. I have a oxygen machine I use at night when I sleep but that's not helping anymore. I think I need to get a 2nd opinion on the Bone Marrow thing. I have no idea who to go to tho and I'm sooo sick of hearing "Take your baby aspirins everyday" or "Your levels have been up for 4 years, what's three more months going to hurt" HELLOOO, It's going to hurt me!  If I go to the Mayo Clinic, which is the next best thing to the Univ of Minnesota. How do I ask another Dr. for their opinion?  What will they need from me? If anyone can help with this I sure would appreciate it.

Karen 

RE: Polycythemia Vera

by Zapnoodle on Thu Aug 23, 2012 03:12 PM

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On Aug 23, 2012 2:49 PM SAMEOSAMEO wrote:

Hi:

I had my first consult yesterday for my diagnosis with PV. The doc told me that if I were to have a Phlebotomy it would kill me because my white cell levels are high also. He is going streight to the bone marrow biopsy. It's scheduled for the 21st of Nov. Like you I cannot walk from one room to the next without panting and having to sit before I can talk to anyone. I can't even do my yoga, which I miss. I have a oxygen machine I use at night when I sleep but that's not helping anymore. I think I need to get a 2nd opinion on the Bone Marrow thing. I have no idea who to go to tho and I'm sooo sick of hearing "Take your baby aspirins everyday" or "Your levels have been up for 4 years, what's three more months going to hurt" HELLOOO, It's going to hurt me!  If I go to the Mayo Clinic, which is the next best thing to the Univ of Minnesota. How do I ask another Dr. for their opinion?  What will they need from me? If anyone can help with this I sure would appreciate it.

Karen 

Hi Karen: So sorry to hear that you are going through this. I was dx with PV in August of 2010. My problems were centered around not being able to get control of my high blood pressure. A CBC turned up some suspicious readings that were later diagnosed as PV by a hematologist/oncologist. It sends me a clear message when I hear that your doc said that your numbers were up for 4 years . . . why not wait 3 more months. What in God's name is he waiting for? Is this doc a specialist (a hematologist or an oncologist) or is he a primary care physician? PV is an extremely rare disease that really benefits most by diagnosis and treatment by a person who is intimately familiar with it. You will find that hematologists and oncologists are most prepared to handle the myeloproliferative neoplasms (MPN's) which is the family of diseases that PV belongs to, but even then, many are woefully underinformed unless they choose the MPN's as a specialty. I correspond with numerous patients on facebook sites and e-mail blogs and never once have I heard a doc refuse to do a phlebotomy on a patient with a high hematocrit who could barely walk from one room to the next because the platelets were too high. I understand that there are various approaches to the phlebotomy procedure, and they can be done slowly in increments over time alleviating the possibility of a platelet problem. I am not a doctor and I am opposed to the idea of an uncredentialed layperson giving anyone medical advice, but given what you have shared, I think you may benefit by seeing one of the leaders in the field. It is a time and financial investment, but if you can, try to contact Dr. Mesa of the Mayo Clinic in Arizona or Dr. Jerry Spivak of Johns Hopkins in Baltimore, MD. There are others, but most PV patients have benefitted greatly by making a one-time visit to a world-renowned expert in the myeloproliferative neoplasms. I hope this helps and I will keep you in my prayers. Take care and God bless.

RE: Polycythemia Vera

by SAMEOSAMEO on Thu Aug 23, 2012 03:22 PM

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Thank you so much for the help. I was hoping I wasn't just being a hypochondriac when I got a little upset that he thought it was no big deal. I thought exactly the same thing. What the hell is he waiting for? And he didn't even offer any suggestions as to what I should be doing in the meantime, which I thought was a little scarey. He's a hematologist but I wasn't comfortable with him from the get go. My primary referred him to me. I will get on the phone immediately and get 2nd opinions. 

Again, thank you. 

RE: Polycythemia Vera

by GUSRENTIT on Thu Aug 23, 2012 05:29 PM

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Hi again, I have a few questions. Best I can tell, there is no cure, OK.
If you have cancer associated with the PV, then they can use several drugs to control it.
I do not have cancer, just PV primary, and both docs gave me the same song and dance, 81mg aspirin and phlebotomy and 25mg Atenolol, after months of phlebotomy, and feeling worse, I had to stop, told docs that I was feeling worse, they just doubled the Atenolol to 50mg, after 4 months on the 50mg I was going out of my mind, like I could not think, remember things, conduct day to day business, and decided to cut it down till I got off it, WOW my brain started to work better, but my BP went up. So now I treat it with 900mg of aspirin, oxygen and hope for the best. The impression I got from the docs, was that is all we can do, go on with life, you'll be fine, when point blank I asked, I'm I going home to die, I was told, we all die! Well!!!
1) Is there any treatment that actually makes people feel better, and more functional?
2) Is there any studies going on that I could join?
Thanks,
Gus

RE: Polycythemia Vera

by healing1 on Thu Aug 23, 2012 09:04 PM

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My husband has been using my acct. here vs. making his own, so this is the wife of a PV challenge here. I am also a stage stage IV non-hodglins survivor, colon hydrotherapist and am now studying to be a nutrition consultant. I first wanted to address Gus, who I beleive is taking 900mg aspirin. Do so with caution, aspirin is an NSAID likeIbuprofen(Advil, Motrin), Naproxen (Aleve), Diclofenac, Celebrex etc.., are designed to inhibit activity of COX-1 and COX-2 enzymes, which cause the pain. This enzymes are produced by the cells of the body, and are responsable for the creation of the agents called prostaglandines, which promote inflammation, pain and fever. The most known NSAIDs are : Aspirin, Ibuprofen, Naproxen, but theNSAIDs listcontains many brand name drugs. In my researching surviving cancer I realized that while they are prostaglandine blockers and there are more prostaglandines that help to repair the digestive system every 3 days and you also stop those, which can cause a leaky gut gut condition in the small intestine. This allows for large chunks of undigested foods to now pass into the bloodstream causing all sorts of autoimmune reactions. I beleive if you are able to look at foods that have anti-inflammitory properties that it would benefit any health condition. For what's it worth, and if you are able to commit to diet and lifestyle changes I beleive it MAY be possible to lessen the severity of PV symptoms. I am truly sorry that you are all going through this. I will not go down without a fight researching health and PV for my husband and love of my life. I did not survive stage IV cancer to have him taken out of the picture. I am not a doctor and don't play one on TV, but I would suggest a diet that is more alkalinized, has lots of antioxidants, balancing your blood sugar ,managing your stress through relaxation techniques, exercise, time management, laughter....

Here are the top 15  anti-inflammatory herbs and spices.

Black Pepper
Basil

Cardamom
Cayenne
Chamomile
Chives
Cilantro
Cinnamon
Cloves

Garlic
Ginger

Parsley

Nutmeg

Rosemary
Turmeric

Her is a link to Anti-Inflammitory food pyramid.

http://www.drweil.com/drw/u/ART02995/Dr-Weil-Anti-Inflammato

Copy and paste it into your browser. And may the force be with you all.

Casey

RE: Polycythemia Vera

by GUSRENTIT on Thu Aug 23, 2012 10:10 PM

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Casey, THANK YOU!!!

I'm close to the end of my rope! I'm soooo tired all the time, I'm out of breath, and I'm weak, and I'm sleepy all the time but I can't sleep. And that's just some of my problems. I can't work, I have no insurance, etc. etc. Then I read all the info on the web and all I see is the symptoms and treatments, but very few results, that people with PV are feeling better! When I was doing the blood draws, I was worse, when I was on the Atenolol, I was a real mess. Now I just feel awful, but at least I'm not passing out all the time, it got to be a real pain, to wake up on the ground all the time, I scared the hell out a lot of people, LOL! Why do people with PV not talk about how great they feel now, after XYZ treatment? I'm willing to go see a wichdoctor, if I think it will make me more functional, BTW, I'm a fairly educated man, so I'm NOT going to take anything that I do not research, and balance the pros and cons of.

Thanks ,

Gus  

RE: Polycythemia Vera

by healing1 on Thu Aug 23, 2012 10:31 PM

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Hang in there Gus. Sending you much love!!! When I had cancer I made a vision board, with what spirituality was for me in the center. For some it could be a candle. another Buddha, God, whatever.....and around it I wrote affirmations and glued on pictures or drew images of what I wanted vs. what I had. I looked at it many times a day, had it on my wall and gave thanks for it. I jumped up an down and thougth about the feelings of joy and love, excitement (which for the sake of sounding too cosmic here, have a higher vibration than fear and other negative emotions) I kept gratitude stones in every pocket and every time I stuck my hand in there I would say what I was grateful for now and to come. I also drank nasty double shots of wheatgrass everyday, which is an excellent blood cleanser. I became a vegan, because of research. I stopped eating sugar. Ate only whole foods, fresh juices, green smoothies (which I have my PV husband doing and he seems to so far be doing much better than most on this board., he also uses my portable far infared sauna everyday too). Purging old grievences and regrets was something I did. I had a loaded shotgun, metaphorically to my head. I was dying and in severe pain, had written my last will and testement. I became in it, to win to win, at all costs. So, when poeple laugh at me now for eating vegan, or drinking green drinks, doing colonics, it's fine with me. I'm alive and thriving and a testement to the power of forgiveness, diet and lifestyle changes. Still wish I didn't stress so much about stupid things.

Casey

RE: Polycythemia Vera

by GUSRENTIT on Mon Aug 27, 2012 03:13 PM

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Casey, thank you for your advice! I'm just having such a hard time, and it seems like, I get worse everyday. The more I read, the more dead ends I get to. I looked into Dr. Ruben Mesa @ the Mayo Clinic in AZ., he seems to be the top in the field, and nothing points into feeling good, just a few trade offs.

Gus 

RE: Polycythemia Vera

by GUSRENTIT on Wed Aug 29, 2012 03:15 PM

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 OK, you will not believe this, but I found something that "seems" to be working on making me feel better. It's almost unreal, what changes I had in 24 hrs! Quick review, I'm 55 yrs old, I have PV primary, and one of my big problems has been my blood pressure, being sky high, I was on Atenolol (beta blocker) that helped the BP, but made me feel real bad, so I went off of it, and my BP went sky high again, as of this past Monday I was ready to give it all up, then while reading a bunch of med sites, and the Mayo clinic, one thing popped up, so I started reading about it, it's a amino acid, called L-Arginine. So I took 5 grams(5000MG) @ 3AM Tuesday, (my BP @ 9PM Monday night was 162/106) I woke up Tuesday morning feeling very good, so at 9AM I check my BP, and I could not belive the numbers, 128/96, I felt better yesterday, than I have in like a year, I took another 5grams at bed time last night, and this morning my BP is 126/92, and I feel great! Side effects, VIVID DREAMS ALL NIGHT, not bad dreams, just vivid and active, and a few little body cramps. Now I cannot recommend this for everyone, and from all the reading, it is not recommend to take it with other BP meds, I been off my Beta Blockers, for a few weeks! So if anyone tries this, do it at your own risk, and PLEASE REPORT BACK RESULTS!

THANKS,

GUS    

RE: Polycythemia Vera

by maryannesteiner on Sun Sep 02, 2012 11:08 AM

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hi ...i have found a pv group of friends in facebook and ive learned a lot from them ....http://www.facebook.com/groups/180180118669211/

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

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