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?
Thanks, Oleander
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.
Randy
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.
plynn
Thanks, Randy....
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.
plynn
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!!
Randy
Last edited by moderator2; 11-27-2009 at 09:18 AM.
Reason: please do not clog the thread with huge quotes in your messages
Randy,
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....
plynn
No; the doctor did not suggest anything for the itch. Sometimes I will take a benedryl about 30 minutes before showering and it seems like I itch less it I just get the water warm. THe hot water seems to make it worse. I also use a skin lotion moisturizer on my arms from the shoulders to hands and from thighs to ankles (use it lavishly and rub it in real good). IF he starts U on hydrea or hydrea and agrilyde the red, itching eyes and axiety should start to go away in two to four weeks. Hamay even want to give U something like xanax and/or zolft for the aniety. As Uwell know; this is a nerve racking time in UR life. I take 3 xanax a day and 50mg zoloft at bedtime and I sleep good and life seems to going good for now. Take care and lots of luck!
GOd Bless;
Randy
Last edited by moderator2; 11-27-2009 at 09:18 AM.
Reason: needless quote
Hi Everyone- I have been reading the posts here for the last couple of weeks - since the start of PV talk began with my Hemotologist. It all has happened so fast, yet feels like and eternity waiting for results....
I am 29 year old female......
I started to itch all over my arms, neck, and chest about 6 months ago. Thought I had some type of allergy to soap or detergent- changed to all hypo-allergenic- and still the itching continued. I made an appt with Dermatologist who said it appeared to be an allergy and gave me a steroid shot. I felt some relief for a week or two and then back to itching constantly. I then went to an allergist who ran panels on my skin and could not find an allergy. He then ordered "the blood test" that has changed my life since.
I gave blood at 8am at my local hospital and the allergist called me back 2 hours later telling me that I must see my family doctor immediately. It appeared that my platelets were close to 1million and all other counts elevated, white, hemoglobin, hematocrit, etc...
Next step - see a Hematologist/Ocologist. He first stressed that after reviewing all hospital files on me over the last 10 years ( in for appendicitis, gallbladder removal) it seems I have had this condition for last 8 years. He was alluding to it being a chronic disorder which is not as scary as Acute Leukemia and so on. HE ordered many biology test for my blood, FISH, JAK2, Philadephia, Uric Acid, Lap test.
I saw him this AM for an update and it appears that I am Philadelphia Chromosone negative to rule out Chronic Myelogenous Leukemia, yet I was positive for JAK2 mutation. He had also test the hormone released from the kidney or the "fertilizer" for blood. Those levels were low as well which pointed him in the direction of PV versus Thrombothycemia. To confirm his findings, I am headed in for ultrasound of the spleen and liver tomorrow AM and I am scheduled for Bone Marrow Core Biopsy on Dec. 1. From there the biopsy sample will be sent to Mayo Clinic where Dr Tefferi will evaluate as well as my doctor.
From what was explained to me today, the JAK2 mutation finding are so cutting edge, that there isn't optimal treatment for this disease. It almost sounded like CML (Chronic Myelogenous Leukemia) was a better disease to have since the inhibitor drug Gleevec hit the market in 2001 and put most patients into remission. They do not have this type of inhibitor drug yet for PV patients - YET! My hemotologist stated that my story will change year to year due to how rapid science is moving. I thought this was good news although I was hoping for some cure now.
I am tired of itching, ear ringing, tingling, and being exhausted. With all of these things- I still need to keep on keeping on. Going to work is a challenge EVERY morning and I just want some relief. They cannot start treatments on me yet- until the results are back from Mayo Clinic. Is there anyone out there who has heard of Dr Tefferi or visited him? I would love to here some opinions on where to go from where I am at now. People in my life keep saying-- go to MAYO! I think that I am in good hands for now, but what is a sign that should tell me to seek second opinion.
Thanks for reading and hearing me out- this has been a long month and I am hoping it gets easier since from what I understand this is a life long commitment to moitoring and treating the disease.
To everyone out there reading and posting- please continue. There isn't anyone around me that can relate. AS rare as this is, I understand there are only 4-5 in 1 million people in the US with this disease, so my chances of meeting another patient is unlikely. Hope to see some responses and my prayers are with all of us!!
Bless UR heart! Hi my name is Randy (61 yers young) and can relate to all symtoms U have mentioned. My itching started in arms,legs,chect and back in 1994. I like U thought I was alergic to something. THe itching was really bad after a hot shower. In 1997 I noticed my eyes blood shot all the time,face red,no energy,tighteness across my chest and felt terrible all over. I went to the family Dr. in 1999 for an annual check up and mentioned the itching in my legs.He proposed we do a complete blood work up.I had only been home from his office about 45 miin. and he called and said something was really wacky with my blood and he gave me the name of a Dr. and his phone number and I should call him right away!I called and got an appointment the next day.Sooo;he is a Hematologist and a cancer Dr. and I am now really scared!He says he needs to take a bone marrow sample and it will take a week to get the results back.SO; here I am freaked out for a week not eating or sleeping and thinking I'm going to die. WHen the results came back he called me in and told me I had PV and that it was treatable and I wasn't going to die!Now I see him every two months,take 1000mg Hydroxurea,1mg of Agrylide, two 81mg aspirin, 1mg xannax 3 times a day and 50mg zoloft @ bed time.I still have occassional itching spells (Benedryl helps;also moisturizing body lotion after shower) and an occassional Phlebotomy (my total blood cell count @ diagnosis was over 1 million).I still have very poor energy; but, live life to the best of my ability and keep faith in the Lord!
The Dr. U mentioned; I've never heard of. I have a local Hem. and he is the most perfect Dr. in the world to me.He has kept me going for 10 yers now.
Take care;God Bless!! and I hope I didn't "BORE" U!
Hi Karen,Megan,Bren, Laura,Tori,Caine and the many others out there that read this thread!
MY Prayers & Best Wishes to U all!!!!!!
Randy
Last edited by moderator2; 11-27-2009 at 09:17 AM.
Reason: please do not clog the thread with huge quotes in your messages
mjdeloria,
Hi! I'm Plynn....and it sounds like you and I are in the same place with this disorder!
Waiting! My bone marrow aspiration is on the same day as yours!! Then my hematologist will know the course of action to take. It sounds like you have a great doctor... Listen to him......You are right...it is a life long commitment to monitoring and treating the disease. I guess it all depends on what our "numbers" say as to how much medicine we will have to take and how often we have phlebotomies. As far as I've been able to figure out, we can live and function with this disease; unlike people who are stricken with more devastating illnesses which rob you of your mobility and ability to take care of yourself.
So I guess we will go on this journey together! Keep posting. I will be here.
God Bless,
Plynn
Hi Plynn and Randy! Thanks for your quick responses! I have been checking the board since my post and was so happy to see that you had written. Plynn- please post your results after your bone marrow. I am still not quite sure what they are trying to see in the Bone Marrow if they already know that I am JAK2 positive. Are you?
From what I understand, being JAK2 positive means you can fall into 3 of the 4 MPD disorders. ET, PV, or Myelofribosis. I was Philadelphia Chromosone negative which ruled out the Chronic Myelogenic Leukemia. This is the disease that they actually have the inhibitor, so although it is a scary disease, it is not controlled. We are not quite there yet as far as medicine goes for the JAK2 mutation, but hopefully we get there soon since then all of our stories can change.
Plynn- may I ask you age? THey say it is rare in anyone under 50 yrs old and I am only 29!!!
Randy- did you feel better after the phlebotomies? Any change in energy or itching once they started to treat you?
Anyone else out there- what improvements or declines may we feel after treatments- what can we expect?
WEll better get going- heading to family for Thanksgiving! I am exhausted and not very hungry, but no one really understands that in my family. I think they see me as being ok bvecuase I am not in a hospital bed.....they are not able to fathom that my body is not quite working like theres- it can be frustrating. I don't want to be treated like a China Doll, but I also feel like they don't quite get what is going on and the magnitude of it.....
Oh well- this is an adjustment for everyone and that is what I have to remember!
Take good care today everyone- we definitely still have a lot to be thankful for!
God Bless and keep on keeping on!!!
Last edited by moderator2; 11-27-2009 at 09:19 AM.
Reason: needless quote
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.
). You take xanax and benadryl at night is that for symptoms?
