hi pauli, how are you? Thank you for your mess, i would love to see canada one day, but think it is a bit far from australia. How long have you had et and what is it and how long have you been taking hydrea? I hope its all going ok for you, You all seem a great bunch and i"m so rapt i found you all, well take care from macnanna from downunder xo
Hi Macnanna, i'm Sarah from So. Calif., i have too have pv, was dx'd about 5-6 yrs ago. (i have bad memory problems! lol...) i used to get phlebs only before, but have been on hydrea since '08. I'm sorry you also have been dx'd with pv, but i'm glad you found this site. It is a true blessing for me, everyone here is wonderful and we all learn from one another. I see the others have already addressed your questions and have referred you to good reliable sites for info. As Dee, Patti, Mimi & Pauli have mentioned... get copies of all cbc's and other test you have done, and write questions for your hem/onc so when you go you won't forget to ask things. And it's great that you have a supportive husband, it's good to have a 2nd ear, especially in the beginning. When is your next appt?
Macnanna, just keep in mind that being ontop of pv is the best thing you can do.... Keep your appts and treatment (phlebs) as scheduled, very important. But at the same time..... Remember that 'You' know your body better than the doctors, sometimes pcp's, hem/onc will blow things off, but we have to be intune and listen to our bodies and be our own advocates. We are here for you, No, you are not alone.... we all felt that in the beginning, and we all have the same story of how wonderful it was to meet others whom can relate. So please feel free to express whatever, as Mimi said, share, laugh, vent, whatever you want or need at the moment! glad you found us!
Sorry i haven't been posting much lately. I too (as Mimi...) have been a bit taken back with our 'Heat!' geez... it's been getting 89 inside our place! and no a/c...
Awhile back i had been experencing some weird stuff, kind of scared me to be honest. I had about 3-4 days of feeling some numbing feelings on my left hand, up to part of my arm (inside part only) and my near my eye area and near my mouth. I took 2=325mg.aspirin everyday and waited it out only because i had my hem/onc appt. and didn't want to go to ER., i told her and she said if it started again (even though i still had slight dumb like feeling in the hand and arm) to go to ER, and she thought it maybe that i needed a phleb. (but i disagree with that, as my counts are within good range still) but she did have me go to the lab to check my ferritan, as my legs have been painful and feeling more weak again. So that's my update (and no, no ortho appt. in sight for me yet!) urgg!....
Dee, did i read that you will be having a bmb again in Aug? How are things sweetie? any improvement at all with all that pain?? and does it feel like your spleen has shrunk at all yet? and on a lighter note.... how is Nicholas enjoying his summer so far? I'm praying for you...
Patti, please, please tell me that the SUN has Finally peaked through over there for you!!?? Boy oh boy.... you can have some of this heat!!
Neil, are you out there cycling in this lovely heat we are having!? If so.... i don't know how you can do it!
Pegetha, i'm lifting prayers for you.. I know you are going through so much. You and Dee have been going through some really hard times for way too long now, and it breaks my heart. I have you both close to my heart and prayers....
Mimi, our Southern Belle.... it's Wonderful to see you back sweetie!! I've really missed seeing you here! and i we need to try and catch up soon!
wee Pea, where are you?? I'm glad you had another Fab time!! you wild gal, You!! I'm happy for you!! you are a fighting survivor! Proud of you!
Everyone, take care and God Bless each and everyone of you!!
Sarah do you have a BP kit at home ?Let me know okey dokey. Macnana i also feel that i had PV for some time before DX.But i,m sure it takes awhile to get to the docs and have a cbc done.Mine was due to my yearly physical.
Sarah the pain is livable and the spleen a.k.a Gerty (named by Patti lol)is sitting at about 15-16.Thats alot better than 20.My counts are kinda just sitting there except the platelets did go up a bit .We are going to watch and wait.ONC is talking about HU agn and i feel at this point that interferon should be the next step.If my counts can handle it.He is concerned about the side effects.MF is usually with fragmented cells.Which i has last March.PLus the spleen severe anemia and all the rest.We talked about POST MF.But agn its a wait and see.Might give Dana Farbar doc a jingle but will wait to see what happens in the next few months.
Nice to see more people here the support is wonderful and i don,t know what i would do without it.Hugs to everyone and tata....=D
P.S Macnana no i do not work anymore.I try to force myself to do the things i loved (gardening) but like you the shortness of breath and leg pains keep me grounded.Do you have any abdoman pressure or pains in the left side ?Take care
Welcome Macnanna, i am Pauline (wee pea) i am 40 and was diagnosed with pv in 2009. I am jak2 positive, on asprin and hydrea daily. I live is Scotland (UK). Everyone here will help you outon any matter or will direct you in the right direction. Welcome again to the forum.
Hey all, Charlie my wee kitten is settling in just nicely, still gets bottle fed at times and is also on some kitten foor too. Full of fun and mischievious too lol. I am fine, still recovering from my trip to amsterdam lol but i enjoyed it very much.
Hope everyone is doing well and is keeping well rested.
wee pea x
I'm Neil from southern California, USA. I'm 60. I had a heart attack in 2000, diagnosed with PV in 2009 and recently renal problems. For the PV, I take 500 mg Hydroxyurea per day. I take 325 mg of aspirin per day for PV & my heart. The hydroxyurea definitely makes me more tired than before I began taking it, but I don't have any other side affects. I also have a phlebotomy when my hematocrit is above 45. Right now that is about every two months.
One thing that I've learned is that PV affects everyone a differently. I am one of the lucky ones in that the PV is more of a nuisance rather than a major effect on my lifestyle. I do take it seriously, and I follow my Dr's instructions and watch my diet (more for the renal issues than PV), but I haven't let it take over my life.
I'm very active. I always have been. Played soccer for almost 40 years. I did have to give up soccer as the Doc was worried that all the bruises etc. could trigger a blood clot. At one time my platlets (the blood cells responsible for blood clotting) were over 1000. In normal people they usually run 100-400. The hydroxyurea has helped reduce the platelet count down to a reasonable level in the 400s. After I quit soccer, I started riding my bike more. I do about 4000 miles a year. Recently, I did a hike/climb up Half Dome in Yosemite, a 15 hour hike. I was totally wiped out at the end but I made it. I guess what I'm trying to say is that PV doesn't necessarily prevent you from doing the things that you want to do.
Yes, PV is a type of blood cancer. Due to a malignancy (JAK2) your blood cells reproduce uncontrollably. One of the standard treatments is with Hydroxyurea which is an antineoplastic (chemotherapy). Yep, PV has a lot in common with other cancers. The good part is that all you end up with is too many blood cells (ie no tumors) and it is a relatively easy and safe procedure to get rid of the excess blood cells (phlebotomy and/or Hydroxyurea). I think many Drs downplay the cancer word because PV is a very treatable disease. As long as you are receiving appropriate treatment, PV is not fatal. People with PV can live many years with the disease. One thing that we worry about is that sometimes after several years with PV, it can morph into Leukemia a much more serious blood cancer. My research and Drs say that about 25% of PV patients eventually contract Leukemia. I look at it as a 75% chance that I won't get Leukemia.
I have to go now. I have to get some work done so that I can go for a bike ride with some friends. Its going to be a beautiful day and I intend to enjoy it.
Good luck with your new hemotologist. Don't let your PV get you down.
Sarah: I just dont understand why they haven't given you an ortho appt> yet????? The system down in Calif. is a mess!!!! Can you call someone and get them to do something? Make some real noise and maybe they'll jump!!! If I were there, I would raise hell so you can get the help you deserve!!!!
It was nice to see our forum full today. It made me think of when we all chatted all the time. Very Nice to hear from everyone. Patti
h ello neil, thanks for that, i dont intend to let this disease get the better of me, i had to give uo work though, as i was a cleaner at a spa hotel and it was very demanding and using chemicals. my husband said to leave, it was starting to take my breath away, whats the pin prick they give you before your phelbotomy? there were testing me for some count, i remember her saying it was 58, what ever that means? I saw your pics they look grt, hope alls going well with you now and keep up the bike riding, its grt for the body and mind, from macnanna from down under
hi wee pea, wow scotland ha, i always wonted to travel.I still cant believe the messages i"m getting, i get so excited and when my husband comes home from work, i tell him all about it, so far i"ve only had one phlebotomy and i take 100mg asprin a day, only seen my hem once so far, so all so very new. We dont have a great chat room here. Its raining at the moment and cold, my old boss was scoyish and i loved there nature, they ring and visit me often, well take care love from macnanna xo
hi dee, you sound like you have been in the wars, hope your feeling a bit better now, yes i"ve had a shitty lower back pain and sore left side, ;why?' i thought it might of been because i painted some farm gates a few days ago, we have 25 acres here and been winter, theres a lot of jobs to be done, i try and do a few hours a day and that way i dont feel so out of breath, take care love macnanna
The pin prick is to check your blood cell counts. The CBC (complete blood count) usually gets a count of the number of different blood cells per unit volume (usually uL - microliter). They count the number of White, Red, and Platelet cells. They also usually do the Hematrocrit HCT which is a percentage of your red blood cells in your blood. In normal people the HCT runs 42-52. ie your red blood cells are 42% to 52% of your blood. Most Hematologists use HCT to determine whether you need a phlebolotmy or not. I get a phlebotomy if my HCT is greater than 45%. I'm guessing that the 58 was your HCT. For new PV patients it sometimes takes several months to get your HCT down to the levels that the Doctors want. The reason is that new patients have normal iron levels in their bodies. Iron is a key ingredient in making new red blood cells. Your body is making as many red blood cells as it can and as long as all the key ingredients are there your bone marrow blood factory is working overtime. After a few months most of us become somewhat anemic (low iron levels). This is good as long as we don't become too anemic. With less iron, your body makes fewer red blood cells. This is one of the main reasons why a new PV patient may have phlebotomies every 2-3 weeks, but after a while blood production slows down and you don't need phlebotomies as often. It also depends on whether you are on Hydroxyurea. Hydroxyurea (chemo) inhibits the formation of new blood cells. If you are on Hydroxyurea your HCT should come down much faster. Treatment depends on the Dr. Some want to try to control the HCT with phlebs only, at least in the beginning. Other Drs start you on the chemo right away. The stuff is poison. I read the pharmacy directions on Hydroxyurea and you are only supposed to handle the capsules with disposable gloves and children and pregnant women are warned not to handle the bottle. It seems kind of strange that they have dire warnings about it but we are supposed to swallow it! There are some studies that long term Hydroxyurea use can increase your chances of getting other cancers, like skin cancer. Always discuss new or changes in your treatment thoroughly with your Dr. Ask about alternatives and what the risks are for a specific treatment. Make your Dr explain everything to you fully. It's your body and your life - don't let them gloss it over. My first Hemotologist didn't explain much of anything to me. She said "I ordered a prescription for you." She never said that it was chemo, she never said that I had cancer. She basically glossed over everything and pretty much kept me in the dark. Only through research and talking with the great people here did I learn what was really happening to my body. I have changed Hemotologists and my current one is good. He doesn't mince words and answers my questions thoroughly. I hope you can find a good one in the city.
To everyone else. Please let me know if I've mucked up the science lesson. Also I hope all of you are doing well. Had a nice bike ride this morning. Got my work under control, it might be time for a nap.
Hi Neil, thanks for that, like i was saying earlier. I have had one phlebotomy so far and that was 6 weeks ago and they said the dr wonted me back in sept, my husband and i thought that was a while, yes my hem dr just said you have polycythemia vera primary and theres no cure, i will be doing phlebotomies and that was it, i had to drive home[ which is an hrs drive away] and pull up, i was a mess. but now when i see him in sept, i will be asking a lot of questions and seeing if there is anougher hem dr there. If i dont feel comfortable, i will find out were there is anougher one, glad you enjoyed your ride, i"m taking it easy today, having trouble with my lower back and side, have a nice week end. macnanna
Patti, i believe you would my friend!! the 'pitbull' in you knows how to get things done! thank you for having my back sweetie, i consider it as you had done it! thanks..... and actually recently harbor had messed up and they were telling me that my ins. was not active... and i had to go in and reapply and talk to different people (was a challenge) but in the process i got to talk to this one very nice lady, whom actually treated me as a 'person!' and really listened (as i tearfully told her of all the dead ends i kept coming across) she was so kind, she told me that she was going to get me an appt. with a pcp there (and that would be the one, who could get me to see the ortho) she left for awhile, and came back with an Appt. for July 28th for me with an pcp there! I'd been trying to get one for so, so long!!! So...... we will see if this pcp can get me in to the Ortho.! thank you, and Dee also for all your concern and encouragement to me on that.
Dee, i'm glad to hear that you are able to hang in there. You are one tough Cookie Missy!! I'm so proud of you... you endure so much and yet you never fail to come through and encourage us all here!! love you kiddo! and yes, i do have a bp machine... but it only works 'If, i use it!!" (i will take it out and keep taps on the bp)..... and you..... Pls, start having your phone with you always fully charged! it's ok if it's off, but please make sure you charge it before you leave out, i worry about you being out with your ferals and needing a phone.... okey dokey!??
Macnanna, as for side effects from the HU, well i've noticed definite changes in me.... (weakness and pain in legs, fatigue and other things, but, i don't know if it's the HU or just the pv or other??) but for me, it has brought my counts within good range. And no, i don't work. But i'm always on the go regardless. I also have grandchildren, and they are the joy of my life! (well, my hubby and family too of course! ) and yes, most of us have discovered that we'd had elevated counts (probably pv) for serveral yrs before we were dx'd. I was dx'd when i went in due to flu like symptoms that would not go away for way too long, and in the random cbc, thank God that this one pcp happened to take notice of the elevated counts and referred me to the hem/onc (actually i just rec'd a note in the mail on a Sat. when doc's offices are closed, saying that i'd been referred to the hem/onc!) freaked me out all weekend!! and thus, began my journey!
and i agree, i love seeing the forum active!! way to go everyone!!
i saw were i wrote, 'my dumb arm! instead of 'my numb arm!!' LOL.....
Hey Neil, Great explanations! So simple and clear! I am so glad that you are able to keep up the riding, hiking, etc! Something that you really enjoy! That is great!
Macnanna, I have the fatigue as well as pressure in my head. Sometimes it is bad and other times it is "there"! But it is almost constant. My hem. says that none of it is from the ET, that I might have chronic fatige or fibromialga, but they are very hard to diagnose. So really I don't have a clue! One day at a time is all I can say!
ET is Essential Thrombocythemia. My platelets are mass produced by my bone marrow and are all enlarged. I also am JAK2 positive. Before I started the Hydrea my count was 1535. Normal is 150-400. Now after a year my count is down to 480. ET is also a type of blood cancer that is treatable like Neil said about PV.
Patti, I am praying for sunshine for you!!! Hope things are going well for you right now!
Dee and Pegetha, you are both going through so much, my heart reaches out to you! You too, Sarah. I hope you will get to see the ortho pretty soon! This is such a struggle that you have been dealing with so long with your insurance and everything!
Pauline, keep care of that little Charlie as well as yourself, now! Get rested up again! But so glad that you enjoyed your little holiday!
To everyone!. God bless and keep putting one foot in front of the other! We will keep strong, together!