hi there celia welcome to the group. i have pv diagnosed june 2009. i live in Scotland, my name is Pauline or wee p, I am 39. currently on 1000mg hydrea 5 days a week, 500mg 2 days a week, and 75mg asprin. You can vent, share, sing, laugh or cry...whatever you want any thing goes....
I have had bone marrow biopsy and I am not Jak2 positive. The doctor is at a loss of the cause of my pv or et.
"The Constitution of the United States is not a mere lawyers' document;
it is a vehicle of life, and its spirit is always the spirit of the age." - Nadia Boulanger
Date: Sat, 10 Jul 2010 10:04:43 -0400
Subject: Myelodysplastic Syndromes, Myeloproliferative Disorders - i.e. Polycythemia Vera, Essential Thrombocythemia - and Chronic Myelomonocytic Leukemia New message: "PART THREE: LIVING WITH PV, ET, MPD'S" 1JNEXN-2Vb-g5c
A new message was posted in the thread "PART THREE: LIVING WITH PV, ET, MPD'S":
Author : Patti
Profile : http://community.lls.org/people/Patti
Sorry to meet you under these circumstances, but being what it is we all have something in common, and you have found a great place to share. I'm Pauli, from British Columbia, Canada, diagnosed with ET Sept."08. JAK2 positive. Started on Hydrea my 5 this year. I take 500 mg daily and 81 mg aspirin. My count has come down from 1527 to 524 since starting the hydrea. I don't like to have to take it but it is working and I am soooooo thankful for that. It does sound like you and Patti may have some things in common! But everyone here is so helpful, encouraging and just great people! I have been so thankful to find this site and some great friends. So welcome and feel free to share what you like.
As for nutrition, I am a vegetarian and last summer tried a total raw, vegan diet for 2 months. My platelets dropped 300 points but then rose again. I try to eat vegan most of the time but sometimes eat a little cheese or ice cream when we go out.
To everyone else! You are all in my thoughts everyday!
love to all
Hi Celia, i'm Sarah (age 54) from CA, was dx'd with pv in '03. am on hydrea (and occasional phleb). I'm sorry you have been dx'd with the disorders. Now to my knowledge, the cause for pv is still unknown. (seems to be such a widespread of us with these diseases,whom they label as uncommon, such as female v/s male, some age factors and such... fact is, we have it and they don't know why). Celia, i'm confused (and it may be just that... 'me being confused') but, why does your doc (is it a hem/onc.??) have you on both Hydrea & Angralide?? I know they want to bring down your counts. But wouldn't that make your platelets drop too dramatically? (i believe Angralide targets platelets only?) and hydrea works on all counts. But, i do know you said they dx'd you with both, PV & ET. Just one thing i will add is, make sure that whenever you have any tests at all, ask your doctor for copies of all the test and results (these may become very important to you later on). As for myself, i'm so grateful to have mine now,... as i now have lost my medical ins. and i cherish those documents, it could prevent me from having unnecessary testing in the future. Anyways...Welcome! and glad you found us! You'll find that this is not only a support group, but we've build bonds here and it's a true blessing!
Patti, sweetie... i'm so sorry to hear of what you are going through. I know the fatigue has really been hitting you hard, and now with the ultra sound result, and more test... but Patti, one thing i know about you is that you are One Strong Woman! You are blessed with this great inner strength! (and you know this is ture!) So... when it's time for you to have that test (the needle), try this.... What thought do you have, that can put a big smile on your beautiful face?? Your hubby, or grandkids?? whatever that is.... just don't even think about what they will be doing! Think about that 'Special Thought' and keep thinking about it, and before you know it, it will be over! I know this is what i do whenever i have to go through things which are hard for me, and it does help me. I will be praying for you Patti! Please know that you can call me also if you need to, or just want to talk You are so kind and sweet to us all here, and we don't want you to feel alone! boy... our lil' Dee sure knows how to make us talk, huh!? lol... (she's helped me before also in getting me to talk) Bless her for that!
My favorite scripture is.... 'I can do all things through Christ which Strengthens me' this scripture has seen me through much!
Mimi,... such lovely post's you've written. They've been inspiring to me. thanks! How are you doing mi amiga? Did your wrist stayed healed now?
Dee, you know how concerned i am about you. I pray much for you. You are amazing in your endurance and blessing to all of us here with all of the wonderful support you give to everyone. So,... as to my question?? any future appts?
Pauline, i'm so proud of you! You are awesome! Keep doing what you are doing.... I'm still praying for you,
Pauli.... Way to go on getting those platelets to drop!! Great job!! I'm so happy to hear that!
Pegetha, Saki, Shawna and everyone else.... great to hear from everyone! and some MIA's for sometime now,... we miss you! please post when you get a chance...
Sorry it had taken me so long to post, but things just keep coming up that are a must to take care and it leaves me without pc time but i've missed you... and i pray for my extended family here regulary. Love, Sarah
oh yeah Dee,... here's my update: bad headaches, insomia, knee/leg pain have been bad lately, mouth ulcers again, and feeling fatigued.
But.... our 4th of July was Great and much needed Relax time once i got there. lol...
Sarah i hope you can get a decent doc who will help with the on going issues.
Celia..as far as breathing propbs, you know that the blood can get thick and often cause some breathing probs.These issues i had before dx.The other issue with breathing is when my spleen enlarges .Have they checked your spleen ?Is this still happening?Hope you can get some answers as well.Ok coffee is on pull up a chair.....gotta go have a cup myself tata=D
Sarah thankyou for your prayers, oh boy i need lots of them just now.... i do hope you get your ulcers under control, they are not nice and makes eating very difficult... take care ok
Dee can i join your coffee morning 'please? even though i dont like coffee and drink tea How ya doing sheriff? i do hope your pain is easing and that you are taking it extra easy and care of yourself
Sarah: Thanks for the support, as well as everyone else's also. I'm sure all will be fine, I'm just a sissy when it comes to some of these tests sometimes.
Celia: I'm also Jak2 negative, but when I had my Bmb read by the specialists at the Mayo last year they said I have ET with some PV also. The two have many simalarities, and are treated with alot of the same meds too. I hope you are able to see a specialist in our MPD, and hope you have all your medical records as well as tests and results, so you can send them ahead so you aren't subjected to doing any repeat tests there. It also gives you a baseline to see where you have been also. I find myself looking back at some of my cbc results etc from 3 yrs ago .
Dee: I'm thinking about you and pray you will be feeling better!!!!
To everyone else, You are in my thoughts and prayers everyday. Hug's, Patti Oregon 57, ET/PV 2007
Welcome to you Celia.I'm Linda K,dx with ET 11-08,On Hydrea 500 mg.The Dr. keeps changing my dosage per cbc.The frist Dr. s dosage brought down all my counts and my new Dr. doesn't want me
to become anemic(rbc got real low).So he changed me to 1 a day and my platelets shot up to 600 and he had me take 2 every other day.We will see how that goes and I'll see him tomorrow.Hope all goes well.
Ok ladies are you ready for this? remember when I told you that my sis-in law had some kind of blood disorder,She can't remember what the Dr. called it.Well,her younger sister just had a cbc and her Dr. called and told her that her rbc was at 17.5 and wants her to go to Hem/Onc. I told her that it could be PV.Told her to look it up and she said that she had all the simptons of PV.Hope she gets in to see Dr. soon.
Isn't it strange that all of this in one family.Me with ET my daughter was dx. in Feb. with cll,and 2 of my sis-in laws has blood disorders.Just crazy.I thought this was rare?
Up date on my daughter,her wbc is up,iron is down again and doing Iron infuseions again.Please keep her in your prayers.
Patti,hope all goes well with the byopsy(sp?)I have you and all of you ladies in my prayers.
Pauline, glad to hear that you are holding up well.I hope you find happiness in your life again,and some one that you can count on in you time.
Hope all my friends have a wonderful week.God Bless each one of you...LindaK
Thanks Linda K: hey my counts have all fallen in the dumpster too. He's playing with my meds now also. What were your Rbc Hct & Hgb when they considered you anemic? My iron which is usually very low, needing iron infusions is now very high at 204? My Rbc is 2.04, Hct and Hgb is at 11.0 and 29.4 My rbc went from the last 9 months around 4.5 to 5.5, and my hct & hgb went from being high to low just in the last 6-8 weeks????? Just when I think I've got this thing figured out it changes again???? Thanks for the support, Patti
Patti,I'm not a anemic,he just didn't won't me to get to that spot.My counts got down in Jan.2010.wbc 4.5,rbc 2.88,hgb 11.9,hct 34.6.My last counts were wbc7.1,rbc 3.46,plt506,hct36.2,hgb 12.0.I see the Dr. tomorrow and I can't wait to see where I am .I really don't know what the hct and the hgb do in the blood.
Me and my husband just mowed our lawn and my Mothers lawn and I have to hit the showers.Take care all...LindaK
Hi Celia. Nice to meet you. I am a newbie too but have found this site to be extremely helpful, and the people here wonderful and kind.
I am sorry that you have p.v and e.t. and hope you are feeling well.
I am really interested in diet and nutrition and would love to trade info. Right now I am keeping a food, activity, cbc journal. I make sure that I eat 1 salad ( I have to keep the vit. k consistant so I can keep my blood thinners therapeutic) I drink 1 or 2 cups of coffee/day, and I drink water for the rest. I will never give up coffee, I am an addict! But now I am rationalizing that it is actually good for me since it can help reduce iron in the blood! We will see. We do not eat red meat, and we try to only eat chicken or pork 2 nights a week, fish 1 or 2 and the rest veggies (but not green ones). So I am playing with the iron, vit. k levels mostly. I also try to run at least 3 miles 6 days/wk. this is kind of an experiment. We will see what my levels are on my appt. tomorrow, and how long I can go without needing a phlebotomy.
Any who , hope to chat soon and welcome.
Hey Sarah. Glad to hear you had a nice, relaxing 4th of July. It sounds like you are feeling kind of lousy, I am sorry for that, and hope you start to feel better soon. Are the ulcers from P.V?
Sorry that I have been m.i.a. for a while. Things have been a bit hectic this week. I had to do professional development last week, so it was like work. And this weekend my fiance did Newton's Revenge" It is a bicycle race to the top of the Mt. Washington. We got all packed up Friday night and left bright and early Saturday, and when we got there it was postponed due to bad weather on the mt. But we went today and it was amazing! I have lived in NH my entire life and have never been up the biggest mt. in the northeast! Anyway, we actually had great, sunny weather with wonderful views. Shawn made it up the mt. and we cheered for him and are proud. And my son was psyched because there was a pro. rider that came in 1st. My son is only 3 and is totally obsessed with cycling! It is hilarious!
I hope that everyone had a nice 4th and hope you all are having a great weekend.
Talk to you soon.
I am doing well, and hope you are too.
Thanks for responding back about Light the Night. I always enjoy reading your posts. You seem so full of energy! It is great!
I read up on Light the Night and decided to participate in Burlington, VT. My team name is R.P.C ( for research, prevention, cure) It looks like quite an amazing fundraiser. I am excited to participate.
The tshirt was a great idea. I would like to be part of the rotation, and will send you my address on your email.
Did you send me a private message? It says that I have 1 in my inbox, but I can not get it.
Ok, I have been on this computer for too long. I need to get out for a run!
I will talk with you soon.
Morning all. Hope you are all doing well! I tried to post this yesterday, but for some reason it wouldn't work from my phone. . .
Anywho. . . .I am not going to be able to post much anymore. I got a promotion at work and am beginning the new position next week, I will not have the free time to be on the computer like this anymore. Also, I started my 2nd job this weekend, so my weekend schedule will be pretty hectic too in terms of catching up. I still get all of your update on my phone though, and read them to keep up with you all. I hope things are going alright for everyone.
Got to run for now,