Pv odds

Hi Angela ok I get you however if you want me to ask my son it's the same answer x how many years are you talking?  I think we could do that math,.  147,000 x how many years?  5, 10, 20?  Does that sound right to you?  I'm   By no means anything like him.  

That's the bit that I couldn't get my head round.

In my lifetime, that would be 147,00 x 66 years, except some will have died in the meantime......

Ha ha. I used to hate maths at school. All that business of baths filling with water at the rate of half a gallon every five minutes so how big is the bath sort of stuff. Somebody once said that maths is the only place where somebody would buy a hundred watermelons and nobody would ask what they were going to do with them all. Hee hee.

Past my bed time now.

Good night.

Hi Angela I hate math also.  If I go shopping, and it says 50% off, no problem, but if it's thirty, I'm shot.  I swear, I sometimes wonder if they switched kids @ birth.  It's really funny, actually.  I'm so bad at math and I get a kid who's a wizard. Well, goodnite.  I know we have a time difference, but I have no idea how many hours.  Linda

We are currently on British Summer Time. In winter, on Greenwich Mean Time. I think that you are 5 hours behind us at the moment.

I must say, we are all following events on yiur side of the Atlantic with interest.

I suppose, in order to know how many of us there are we need to know how many of us there were before someone worked out that another 147,000 were being added each year.

Or maybe not.

This is where my head starts to ache.

Hi Angela I think we gotta give it up.  The answer to our question really doesn't have an exact number.  Just know that it's rare.  No use wasting our time mulling over it.  We've got bigger problems than this.  Don't let it make your head ache.  Linda

If I ever work it out, I'll let you know.

Hi Angela it has come to my attention that we haven't heard from you in a while.  Hope you're ok. Lucy misses Ethel. Lol.  Zap

Hello there!

Well, funnily enough, I was at the hospital today seeing one of the consultants for one of their regular chats.They have been dropping heavy hints, cajoling, repeating their mantra about going on to the pills and potions for a year now.  And I have been fighting them off for a yesr. Today, I expected the same old same old but I got a little surprise. Now, they wonder if I do have PV after all. My red and white blood cells are being held by the venesections at a remarkably stable level and my platelets are only rising slowly. Today, the consultant wondered if I perhaps have Essential thrombocytosis but said that he couldn't be sure. And then he dropped a bit of a bombshell. He admitted that they really weren't convinced that Hydroxycarbamide would be any better for me than just carrying on as I was.

I was gobsmacked. I didn't see much point in asking for any clarification as he was getting quite technical! The thing is, I feel fine. Apart from tinnitus and the loss of some energy I feel quite well. I am so relieved that I didn't comply with their demands that I start the pills when they first met me.

I haven't been reading much on this forum lately as I have been busy in the garden. The weather round here has been cool (68°F?) and cloudy - just perfect for a little digging and hoeing. We shall be having our first tomatoes in about a fortnight.

I hope that you finally got to the beach.

All the best. Hope you are OK.

Hi Angela how interesting.  So you've been right all along.  I had the same thing happen to me.  For 4 years I was told I had Pv.  I only had one phlebotomy though.  They never gave me a bmb.  When my platelets hit 1 million, I went to an MPN specialist.  He ordered a bmb, which I should have always had, and it shows et.  He also put me on Jakafi.  Haven't been to the beach yet, but will be going to Atlantic City, which is a gambling town at the jersey shore for a few days for my birthday in July.  Glad your ok.  Thought maybe you were busy teaching math classes.  Lol!  Garden on & enjoy.  Linda

Oh gosh, fancy that! 

I must say, I really don't fancy the idea of having to have a bone marrow biopsy, especially if I am not going to be taking their pesky drugs. 

Maybe I shall just live in blissful ignorance as to what exactly is wrong with me...

If you don't mind me asking, if you have ET and not PV why are you here and not on the ET forum? It's lovely to have you here of course, but doesn't it make a difference? Or are we just a nicer crowd?

Me teach maths. Ha ha, that would be an interesting lesson. Have you ever heard the wonderful Tom Lehrer sing his song called New Math? Fantastic.

Another grey day here. But they say that the temperature will rise to the dizzy heights of 24°C. Not sure what that is in old money, maybe a shivery 78°F for you.

Keep on keeping on..

Hi Angela are you scheduled to have a bmb?  I was scared of it but a lot of people who have had them said it wasn't that bad.  However, I did choose to have anesthesia. I didn't even know there was an ET group.  I'll check it out, but I like you guys too much to say goodbye.  Never heard of the song New Math. It's grey here also and about the same temperature.  No sun today.  I'm going to a graduation party today, so it doesn't matter, I'll be inside.  Stay well and keep us posted of your bmb if you have one.  Linda

No, nobody has suggested it (yet). It was just when you mentioned that you had had one. And I'm not volunteering either.

If you haven't heard the song New Math, have you ever heard any songs by Tom Lehrer? He was a professor at Harvard but wrote some very funny but very acerbic songs on all sorts of different topics.  He stopped writing when Henry Kissinger was awarded the Nobel Peace Prize, saying that it beat any of his compositions' comments for irony.

Warm and grey. Salad weather.

Hi Angela I misunderstood, thought you were getting a bmb.  If you don't want it. Don't suggest it.  Never heard of Tom Leher either.  I think we listen to different types of music.  Warm & grey here too.  But I'll be at the party, so don't know what I'll be eating.  Enjoy your salads.  I bet they're good cause it's from your garden.  Linda

Well Hello Angela,

I saw your messages to Linda and it seems you are curing yourself with all that garden fresh produce.  You know, this PV is a very variable disorder isn't it?  It is full of surprises.  You have become a conundrum for your consultants but that is the way things can go.  It is nothing that hasn't been aired on this forum before and it seems the ailment still requires further investigation before we learn all of the facts.    PV symptoms can be mild or more advanced and affect people quite differently.   It is the same with other illnesses too which makes things very difficult for both the patient and doctors alike.  To answer you question about an ET forum.   You probably already know that ET, PV and MF are closely related diseases within the same group of MPN's,  and one can lead to the other.  The symptoms for one are very similar to the others.  Basically it can entail just a small change in the treatments involved and very often it is found that one forum is sufficient to handle any queries that arise.  A big advantage of this is that people can learn from all three diseases as they are so alike and intertwined.

The same Haematologist will treat all MPN's.

It is good to find you are still in good shape and enjoying life as you can.  It is very hot here today in SW and I think the rhubarb is being cooked in the ground.  Forecast is for the UK to swelter during the next few days.  The tomatoes are doing well with Mrs Greenfingers in control.  Best wishes and I hope you have a great crop.

Peter.

Hi Linda,

Well that started the ball rolling didn't it ?  Very interesting what Angela had to say about her PV.   She seems well enough and now with her doctors findings she should feel somewhat happier.  Let us hope she is not left disappointed as this PV can be so unpredictable, particularly to get an accurate diagnosis.  

Very hot and sunny in UK and expected to continue and as I said earlier - Wimbledon's coming up very soon -  rarely does the weather let that down.

Glastonbury pop festival next week, usually associated with a mudbath; will go into hibernation for that.  Suffering a sore back at the moment (overdoing things) but expect it will soon come right again.  Stay well.

Peter

Hi Peter I'm glad Angela's doing well.  You're so right, these diseases affect everyone differently. Some itch, some don't.  Others have bone pain, some don't.  It's very unpredictable for sure.  Weather here is cloudy and a bit cool, but I'm going to a graduation party indoors, so I don't care.  I think I would hibernate for that pop festival too.  Take care of that back.  Rest it.  I don't overdue anything anymore.  I've learned my limitations.  I don't need anymore problems.  Take care. Linda

Hi Linda,

Thanks for your kind words.  Enjoy your week-end.  I do not intend to do much here.  It is real Mediterranen weather in UK right now but I'll be keeping my distance.  Now I have a good excuse to do nothing !  A relaxation from medical problems.

Peter.

 

Hello there! Yes, it's a funny old world, right enough.

Linda will laugh, I am currently sweltering in the garden - I converted C° to F° and it is an unbearable 73°F.

Good luck with the toms. Mine are wilting in the conservatory just now.

Another funny thing that my consuktant said yesterday (he's a barrel of laughs). Did you know that not all our bone marrow is bu¥¥ered? Only parts, or percentages or something. We do have some normal stuff in there apparently. Weird eh?

Going to put my feet in the fridge. 

Don't worry Peter, I am under no illusions that I could suddenly start having a whole load of problems. 

When I asked Linda why she was here and not there I was just being cheeky. I would hate her to go.

Glastonbury next week? Oh dear, as you say, time to get the wellies and raincoat out then... Has it ever been good weather for Glastonbury? 

Hello Angela,

You are too level-headed to start having extra problems.  I liked your reply to her and thought it was very tongue in cheek anyway.  I mentioned the closeness of the MPN disorders because it gave me the opportunity to bring this to others less well versed to read.  Surprising just how many don't realise the relationship is so close.

If the weather stays as it is Glastonbury will be a hell-hole with so many packed in.  Very uncomfortable but I doubt they all care anyway.  In another five weeks or so we begin the annual holiday-maker trek with all their caravans etc then nobody will be able to move much.  There is only the M5 to get to these parts but that ends at Exeter.  We try to avoid any hospital

appointments during this time.  Well the law of averages says that Glastonbury will get some decent weather but when it is wet, glorious mud reigns.

Trust your garden is now in full display and your veg. looking good.  We are expecting new neighbours before long.  Very big into gardening, just like you, we are advised.   Do enjoy yoursellf and hope all goes well for you.  Thanks for the message.

Peter.

Hi again Angela,

I guess your consultant is well clued up for him to say that.  Thinking about it though I guess that if the bone marrow was totally cooked we wouldn't be discussing it as we do but seems we do have a chance eh!  Nice to have a happy medic.  My Haematologists are all good natured too .  One or two of them have a very valiant past.  Interesting to talk to over and above PV.

Have you got anything else hidden in the fridge Angela ?

Peter.

Hi Linda,

Seems like this PV was first recognised some 100 years ago.  Taken a long time for it reach into the public spectrum.  An interesting history nevertheless but it was recognised for what it is and some obviously brilliant brains were involved.  Hope this lightens your day.

Peter.

Hi Peter very interesting, 100 yrs ago?   And I never heard of it till I was told I have it.  Just got back from hemo.  My plates dropped about 80 pts.  Hematocrit 35.9,  hemoglobin 12.2, borderline anemic.  If it drops anymore, he's talking about procrit injections.  Also gonna check my Uric acid level next time as you know we are prone to getting gout.  I'm staying on the same strength of Jak.  I will see him in late August.  Not too bad.  Be well.  Linda  

Hi Linda'

That's right 100 years (about 1875) as I remember.  I was just fishing through some articles on the internet and came across this publication which gave the history of PV and of how it came to be identified.  It was published by the researcher involved, an obviously medically minded specialist.  I really can't recall the location of this article but it was in a morass of very technical literature that I fell upon.  It made a lot of sense and was about early diagnoses of this type of disease.  Obviously it didn't catch on with others due to the rarity factor and I suppose financial requirements too.  If I find the article again I will forward the details to you.  As for gout, I inherited this as did other family members.  Have lived with it for many a day now, before I ever encountered PV etc.  Controlled admirably with Allopurinol.  None are PV affected.  Haemaglobin in women should be 16.5 g/dL as the ideal.  Bit higher for men.  As you say, not a lot to fret about really with your current assessment.  The Jakavi  looks to be doing its job too.  The last couple of days here have seen temperatures at over 30C but thunderstorms are on the horizon in a couple of days.  Traffic forecast for Glastonbury is for 12 hours or more delays!!!    My haematology appt. is next week but I expect little change will be noted.  I visit every four weeks.  As the hot weather arrives in UK so my family have all decamped overseas to sweat there.   The Gambia, Morocco, Norway, Eire to name but a few of the places they are visiting.  I'd sooner be sailing.

Stay tuned and good luck.

Peter.

Hi Peter that really is an amazing fact you stumbled upon, 100 years. I've never had the gout but the dr. said it's possible to get it with this condition and said he would prescribe Allopurinol should it occur.  I seem to understand there gonna be some kind of festival in Glastonbury that will be turning your area into a traffic nightmare.  How long does it last?  Is it something like Woodstock?  Yea my visit was pretty good.  We're in the 80s all week.  I haven't been in the sun for a few weeks, can't wait.  Don't have any more Drs apts for a while, thank goodness.  It can get a bit overwhelming.  So your family is taking off.  I assume you are not going. Do you sail?  Are you near water.  Beside math, geography is my other weak point.  I have no clue where I'm going sometimes, it's like I was born without a compass.  Don't know east-from west.  Very frustrating.  Stay well.  Linda

 

Hello Linda,

Well I wouldn't wish gout on you it can be intolerably painful.  A Hospital consultant once described it to me as the most intense pain known to medical science.  That was some years ago now.  When allopurinol was introduced it was an overnight revelation.  I have not been affected for a long time and have almost forgotten I am diagnosed with it.  Frequently said to rival arthritis.  Gout can be acquired but is usually associated with being inherited. A great deal of rubbish has been said of gout and over-eating and riotous living but mostly this is wild.  Eating or drinking the wrong things can exacerbate it if you are susceptible to the ailment.  It is not life-threatening, just mightily uncomfortable.  My father suffered badly but allopurinol was not available then.  Sure, Glastonbury commences next week (Thurs) and finishes the next Saturday with virtual non-stop amplified pop music (noise).  It is very popular with those who like that scene but with 60K people attending it is a nightmare for those living nearby.  The traffic has to be seen to be believed.  Yesterday the authorities stated a min imum 12 hour traffic holdup to the site must be expected.

Hi Linda,

PV was first noticed by Luis Henry Vaquez in 1892 when PV was 1st published.  A William Osler expanded on this in 1903.  Found this info in ASH Hematology Education Programmes.  Part of a Radek Skoda synopsis on Genetic Basis of Myeloproliferative Diseases.  So there you have it - it has been around well over 100 years.  Lots of info on W.H.O. site. (too much to digest).

Peter

Hi Peter the Pv trivia is very interesting.  There is too much info on WHO site.  Some of it is too technical for me.  I don't envy you with that festival going on.  Why can't they have it in some remote place where no one lives.  I believe Woodstock, 1969, was held on Max Yasgers farm.  He donated his farm for the festival.  It was 3 days and a lot of mud, cause it rained.  What was left behind was so much rubbish, tents, clothes and god knows what else.  Hope you get through it ok.  I went tanning today. Just for 1 hour with a 50 block.  I'm being careful, so far, so good.  Weather is beautiful, low 80s with light breeze.  Thanks for the info.  Linda

Hi Linda,

The WHO site is an absolute mine of information - if you know where to start.  It is very technical in many parts and not designed for the non-medics.   PV and MPN's are well covered and I found these to be quite good reading.  But then I had an interest.  Yes, the big noise has commenced but we are far enough away for it not to reach our ears.  The weather seems ideal for it, cool and dry.  Pleased to see you are getting your Vitamin D to keep you going.  Keep well.  Happy days.

Peter.

Hi Peter I find the WHO site to be a bit confusing.  You do have to have a technical mind to understand it.  I'm a little overwhelmed sometimes.  So the fun has started.  Glad to hear you're far enough away not to be disturbed by th noise.  I started taking Vitamin D 2000 units about 4 times a week.  The dr. Said its ok.  Do you think it's ok?  Do you take any vitamin supplements?  Take care. Linda

Hi Linda,

You really do need to be medic techie to get through many of these sites.  It isn't just the content it is the general usage of Latin that is infiltrated into the language.  I never learned Latin whilst at school but I do think that if you know it then different horizons open up  A Swiss friend of ours was taught Latin and subsequently had no difficulty in learning five more languages,  each of which was Latin based, which envelops most European countries.  On another note, my GP has never recommended the use of extra vitamins, saying if you eat properly you don't need them.  So I have never tried.  A good excuse for a nice steak!!!  I eat what I like - in sensible portions though.

Yes, one more day and the musical noise is over.  I hope those revellers also enjoy the long journey home again.  I shed a tear.  I have my monthly Haematologist visit on Tuesday and wait with bated breath for the result.  I think I have earned my laurels for the amount of times and years I have visited that department.  It has been raining a little this afternoon but hope it isn't too much to make the grass grow again.  Are you happy with your tan now ?   Chin up and stay good.

Peter.

Hi Peter yes, you are right, medicine is based on Latin, as is the judicial system here.  I've never learned Latin, didn't have a use for it.  My son, being a pharmacist, did learn Latin.  I spoke Polish when I was little.  That's where my mothers parents emigrated from and my grandmother didn't speak English very well.  When she died, I was about 11 and never spoke it again.  Sorry I didn't keep up with it.  Glad the noise will be over by tomorrow.  Hope your results are good on Tuesday. Please let us know.  Have you gained weight on Jakafi?  A lot of people are squawking about it even though they're not eating more.  I'm not tan yet, just very light color.  I haven't been in the sun enough yet.  Too much rain in June.  Be well Linda