This is listed under Blood Cancers is it a Cancer?
Why is there such an increase in it now in younger people?
What chemical exposures is it linked to?
Is there such a thing as a mild form of it?
Any recommmended supplements, natural medicine or diet changes to help?
Hi! My name is Randy and I have been diagnosed with PV for ten years now.My hematologist tells me it is not cancer.It is a disorder of the bone marrow which produces blood cells (whites,reds & platlettes) I had over 1 million total blood cells when diagnosed (normal should be around 400,000).HE told me there are varying forms of it where the platlette counts and red counts are high or whites & reds could be hight.All three of my counts were elevated.I have an occassional phlebotomy. My meds are 1000 mg hydrea,1 mg agrylin and an 81 mg aspirin every day.I do take a green tea extract pill every day.At bed time I take zoloft,1 mg xannax and 2 benadryle capsules. I don't have a idet plan. I usually eat what I want. THe age thing;I have no idea.I recently corresponded with a girl 16 years old with PV and another lady 22 years old with PV.I was 48 when I found out I had PV. I have read on the internet that it most commonly occurs around age 45.
I wish U the best of luck & my prayers are with U.
Thank you so much. I am actually writing for my boyfriend. He is almost diagnoised. Few more tests left to confirm it. He has an elevated White count and elevated Hemaglobin and Hematacrit. He is 45. It was found on a routine physical.....I made him go because I noticed he was sooooo tired all the time.
I notice your bedtime meds ( thank God for Zoloft ). You take xanax and benadryl at night is that for symptoms?
I really appreciate your responding back to me. Any information is so helpful.
Hello Oleander! My name is Megan, I'm 22 and was diagnosed with this back in December, so quite recently. I know that PV is considered by some to be a type of blood cancer simply because what it does is cause your red blood cells to replicate too fast causing problems, which is what cancer does: cells replicating too fast in an uncontrolled manner. So technically its not blood cancer but it can be treated with the same meds.
I wish I knew why it is becoming common in younger people. I was told I may be the youngest person in Manitoba with this, however I have talked to people elsewhere younger than me who also have it. I am thankful that because of my age I was able to recover faster from the effects of it that happened to me prior to being diagnosed.
I've heard of an elevation-related form of PV that is milder and I don't think it is permanent, you would need to talk to the Dr about that though. For supplements I've read that green tea helps stabilize things with no bad side effects, and anything with Vitamin K or iron in it is to be eated in moderation because it can raise blood counts. Anything else you would need advice I can't give though. They also did a study where eating something like 6 kiwis a day helped lower red blood cells but thats waaaaay too many kiwis for me!!
I also take Hydrea 1000mg/day like Randy, but will be trying the phlebotomy thing next month and weaning off the Hydrea as its not very pleasant. I take Warfarin to thin the blood and aspirin to make it not sticky. The other pill I take is Acetazolomide but thats just to take pressure off my eyes due to a big blood clot in the back of my head, will be stopping taking those soon too.
Good luck to you and your boyfriend, I know this is a confusing thing and there's not a whole lot of information out there but it is definitely something that can be controlled and still live a normal life!
Megan, Thank you for your time and information. I had actually read your story here and was touched because I have twins close to your age. I will post what the Hemoc says a week from Thursday....I will be there when he gets his diagnoisis. He has only had blood tests no Bone Marrow Aspiration yet. Thanks again.....Oleander
Oleander- my husband has PV- age 71, diagnosed 3 years ago. There seems to be no "textbook" case of it; you just need to find a way to manage your own case. HCT of 45 doesn't seem all that bad; my husband's goal is 42 and when he was originally Dx it was 65! He gets phlebotomies every couple of months. Does your boyfriend have itching or night sweats? It was the itching that drove DH crazy. He's now managing very well with Hydroxyurea and we're both so grateful. He also determined that chocolate, unfortunately, tended to trigger itching attacks so he had to give that up- but everyone's triggers are different. BTW, he's also on an antidepressant, which apparently helps keep down the itch, and I think it's Paxil.
As for whether it's a cancer- when the doc said she thought she knew what DH had, she gave him a number to call to get tests she ordered. They answered the phone with "Kansas City Cancer Center". That was the first time he heard the C-word!
Good luck- if that's what your boyfriend has, it can be managed. Life almost seems normal now but I never take that for granted.
His itching is not bad yet. Only after showers. He does have extreme fatigue. I do think it is odd that 2 people at his work have it. That is why I asked about chemical exposures or if anyone knew what it is connected to? Good to know the Antidepressants help the itch.
I am a Skin cancer patient and the C word is always earthshaking at first. Then you learn it can be managed. You just have to stay a step ahead of it.
Yes, showers can definitely trigger itching! There's some info on the Net on dealing with polycythemia itching and one of the ways that almost always works for DH is VERY hot showers. It's the not-so-hot ones that would trigger an attack.
There's controversy on whether exposure to certain chemicals causes polycythemia. Do a Search on "Polycythemia cases in Pennsylvania"- there was a cluster of 38 cases in one area and a government-sponsored study said there was no proof that it had anything to do with possible environmental factors due to anthracite mining in the area. DH lived for years in Ringwood, NJ, where there have been allegations of toxic waste entering the water supply. He contacted some epidemiological group collecting stats on PV but never heard back from them.
As I said, every case is different- the only times DH had extreme fatigue was when the itching woke him at 3 AM and he couldn't get back to sleep. In fact, we're booked to go to Croatia next month and have a 2-hour kayaking excursion planned. He does need more rest than I do, but he's also 15 years older, and it's hard to say how much is due to the disease and how much is just that he's older.
I am a Kayaker also.....just do streams, lakes and level 1 rivers. no white water for me.
My guy is quite a bit younger than me. It was his fatigue that made me send him off to the Doctor. He also has some mildy elevated Blood sugar issues that are not being addressed yet and this may be why he is so tired. He is pretty symptom free so far. But his white count is extremely elevated. We will get all the tests results next week. They are also checking him for Lupus and other things. But we are pretty sure this is what he has. Also his co worker has it.
I have him exercising more and improving his diet. He is pretty sendentary.
My husband and I are taking green tea pills because we both have borderline cholesterol and don't tolerate statins. He just had a phlebotomy today and his HCT was actially a little lower than when he came in for the last one. That, despite the fact that he forgot his appointment a month ago so he went 3 months instead of 2 months without a phlebotomy. They now have him scheduled for 3 months and 6 months from now. Coincidence that we started taking the green tea pills around April? Maybe not. He's still on the Hydroxyurea, of course- don't want to mess with that.
I'm 59 and just been diagnosed with polycythemia, and have so many questions! I am scheduled for a bone marrow aspiration, then the doctor will have the info. he needs for the treatment I will have. He said probably we will do a combination of phlebotomies and Hydroxyurea. Do the phlebotomies hurt? Are there really bad side effects from Hydrea? Do you lose your hair? Are you able to work? (I am a school teacher)...
Please, anyone out there....Can you answer these questions? I'm a newbie to this stuff.
Your message touched my heart so much, it brought tears. I guess you know how uncertain I am about things at this point....fear of the unknown.
I started experiencing symptoms 3 years ago...itching after taking baths...so I went to my general practitioner...and he said it was contact dermatitis. He gave me some cream that did absolutely nothing to ease the burning itch....so I tried changing my soap, detergent, and lotions...nothing helped.
One day I decided to try claritin and presto....I'm cured.... been taking claritin once a day for about a year and a half....then started with bloodshot eyes...Went to the opthamologist...He said I had ocular rosacea...of course...no cure! So I've also been using clear eye along with my claritin....That's about all the symptoms I had been experiencing.
When my yearly doctor's appointment came around (different doctor at this time), she noticed a higher than normal red blood count...Went back in and the count was no better the second time...so she made me an appt. with
a very good hematologist/oncologist.
Imagine my shock when I looked up his address and it was a Cancer center!
He confirmed my doctor's concerns and has me scheduled for an ultrasound of my spleen and a bone marrow aspiration. He also noted that my platelet count was high.... So here I am now.
I can't tell you how encouraging your note was. I've been reading too many scary things on the internet.
I understand your concerns. I've been there and done all U R going thru. THe itching started for me in1994 and by 1997 I felt like Iwas going to die. I got diagnosed in 1999 and while waiting on the bone marrow results I couldn't sleep, eat or function well at all. But; once the results came back and the Dr. explained it all and it was treatable and I wasn't going to die, life got better.
I still get little itching spells occassionaly and some anxiety. By the way; I turned 61 in September and pray I have many more years ahead. I wouldn't try to investigate this disorder on the internet. I like this thread and what I hear from the folks on here. Take care And God Bless!!
Last edited by moderator2; 11-27-2009 at 10:18 AM.
Reason: please do not clog the thread with huge quotes in your messages
I'll keep you informed as things go along. My bone marrow aspiration is on Dec. 1st.
Then will probably have to wait a week for results. I have been feeling fine except for my red burning eyes and my itch, but now I have to add anxiety on to that.
Has your hem. told you the reason for the terrible itch?
I feel normal now, just worried that the medicine I'll have to take will make me sick and things will go downhill from there. However, it feels so good to know there are people like you out there to talk to....