Diagnosed Today Pv

I was diagnosed today with PV. I go in Monday for a bone marrow biopsy, and CT of spleen. All of the JAK2 tests were negative. Ultimately, what I am concerned and curious about is at what point did some of you have to go in for chemo.. Meaning what were some of your labs (hgb, platelets, wbc, rbc)... I guess I'm trying to figure out 'how close I am' to having to deal with chemo. I am soon turning 33, and have a 3 yr old and 2 yr old. And basically I am a bit scared. Any info that any of you are willing to share is greatly appreciated.
nunnabiznes nunnabiznes
31-35
5 Responses Jan 18, 2013

I want to thank all of you for your comments.. I can't remember my password to this website, so i'm kinda locked out. but it IS me...... To answer your questions, I kinda ''always'' had a feeling in my 20's that there was a problem... Headaches, fatigue, fainting, RED FACE, and random nose bleeds. After having my children, I had a uterine ablation, so I have no more periods... AKA natural phlebotomy.. My labs 'during' preg showed higher platelets, but was told it was normal. After having ablation, I stopped having periods, and my labs continually showed an issue. I was referred to my hemo dr for and received diagnosis of anemia.. Got iron infusion almost a yr ago, and now my iron is steadily dropping again. I was in and out of hossy's this past month with a skin infection, and had several dr's SCARE me, so I RAN to my hemo dr and he is taking great care of me. He is a hemo/onco specializing in MPN... I go in this coming monday for a bone marrow biopsy, and scheduled for the following friday for results. I was nervous about this diagnosis in the beginning, but have come to terms with it as time passes... DR told me that he is 90% positive it's PV but can't say for sure until after b.m.b. results... Thanks again for your help.

I am 41 with PV (and a mom). I am on low dose interferon and feel fine. I believe 95 percent of PV patients are JAK2 positive so I would see a MPN specialist to confirm diagnosis and treatment. I know the diagnosis of a rare disease is scary but with good care, it is manageable. Good luck!

Hey, Nunn, it worked! Look, a great on-line support group is sponsored by the LLS (leukemia and lymphoma society). You can get there just by Googling LLS. Then navigate to "discussion groups". Then look for "Living with MPN's...PV, ET, MF...2012". That is the thread where we are all meeting and chatting now. You are able to read the posts before you decide whether or not you want to join. If you decide to join, simply register with the LLS (no fee) and then make a post introducing yourself--as others on the thread see your post, they will all start to chime in and will open you with open arms. I certainly hope I've been of some help to you tonight...I hate to imagine a newly dx'd patient being frightened and i always try to make you feel better. I should add here that the LLS has been a Godsend to me and I am ever so grateful for having met all the great gals (and a few fellas) who have become like my extended family.....so.....be well, many blessings...........
Fondly,
mimi

it's me, but i forgot my password.. so i opened a new profile. i'll go check out the website thanks!!!

Hey NUNN: Having a dx of PV can be daunting at first but as you come to know it, it's not a real bad thing. I've had my PV for 15 yrs and still going strong--dx'd at age 49--62 y/o presently. Chemo should be a last resort type choice. Phlebotomy is the treatment normally suggested at first and that is simply the act of donating blood (But your blood is not donated (obviously). It is simply removed from your body cause PV is an overproduction of red blood cells and it must be removed. The HCT desired count for a female is abt 45, so most doc's write orders for a therapeutic phlebotomy fr the patient when he/she goes above HCT of 45.
It's not a scary condition, though at first, it generally is and rightfully so. But one can mange and lead a full and rich life for many yrs.
How did u get the dx of PV--were u having any symptoms of PV? Or was it thru a routine annual medical check-up?.....As far as chemo issue----i was treated with phleb-only at first for several years. My arm veins started breaking down which caused me to need to go to the chemo--a last ditch treatment. You want to try to stay away from chemo for as long as you can. I take hydrea, 500 mgs and do fine with it. BUT every case of PV is unique and each person is treated according to their needs.
I am going to give this one more try to send it to you---I am not computer savvy and the other very long and involved reply I made for you didn't go thru. But I should love to chat with you a lot more in an effort to ease some of your fears. Again--I've had PV for 15 yrs and still am going strong.
best wishes. fondly, mimi

My advice is to make sure your doctor is a specialist in PV.