Okay, I must say I'm on a high. Saw the vampire today, & my HGB went up to 10.4. The only number that bothers me is WBC, down to 3.3, a new low. (Truthfully, I don't know what that means, practically speaking, except that my immunity must be going down.) Today was a real quick-draw. I was in & out in 20 minutes! Got my favorite vampire, who is sooo good.

Christopher, Christopher, you are so fickle! But I understand -- those Aussies have something going for them. After all, I married one. Jules, Humphrey wants to know where in Victoria you are. He was born in Queen Vic Hospital in Melbourne. He grew up in Tynong.

Oh, & if you need more folks to care about you besides us leakies (good term, Chris), I'll put you in touch with his cousins. That'll fix you!

I'm happy to hear that everyday-life discussion is not considered a waste of time for those who have recently joined us. After all, this is the place to let it all hang out so that you don't have to bore everyone you meet (as Chris said) with the down & dirty details.

I've only gradually let it be known in my circles that I even have anything wrong with me. I could have gone longer, but frequent blood draws & shots get a little suspicious.

At any rate, I decided after my results this afternoon to buy a few clothes, which always cheers me up, especially when they're inexpensive items. I'm ready for late spring-early summer. Where are they?

It's so good to hear everyone so upbeat....that is how we feel around here since my husband got the good news that his blood counts are up and chemo has been postponed for a while any way, we know it will have to be but everyday without it is a blessing....Hope you all have a great week....Janet

Hi birdmom and everyone... I'm living in Gippsland ( about 2 hrs south east of Melbourne) - dairy farming country. It's been so dry here, but recently we've had a bit of rain... so getting nice and green again. Yay! I've only been here since just before Christmas '09. So still getting to know the place. It's really lovely. But very cold and windy today! Hang on a sec while I chisel off the ice from my keyboard!!!!!

I think I'd rather the cold, than boiling in Qld... maybe. But I love being cosy inside the house on a day like today (with central heating of course). N i c e ......

Dear Jules,

Getting my maps out to see if I can find you somewhere amongst the Victorian cows, but my maps only show the places I know well, like Melbourne, Sydney, Perth and Brisbane. I was living many years ago in Port Moresby, Papua New Guinea, and on Saturday night a girl I was dancing with, told me I needed a hair cut. Well, I didn't tell her, but I had to go to Sydney on Sunday for a 2 hour appointment on Monday morning. I stayed at an Hotel, overlooking the piers where the big cruise liners tie up. Before my meeting I had a very good haircut, went to my meeting and caught the flight back to Moresby. She saw me in the hotel bar Monday evening. Was astounded by my hair, and I casually told her, I had taken her advice and flew down to Sydney for a hair cut, and returned to Moresby. The whole deal cost me about Kina 2,000, but well worth it.
She believed me, and told everyone I was mad, and how she had caused me to spend Kina 2,000 on a haircut.!!!!
Incredible, yes, but she was an ozzie!!!
Keep smiling Jules. I cannot milk a cow, but I could easily fall for an attractive leaky Oz.

Dear Rachel,

My solution to gardening, is to pay for the plants and requisites, sit on my shooting stick and supervise Judith's efforts. The Garden looks lovely today, I am so proud of myself.!!!!!

Dear Sharon,

I really don't understand WBC counts. You are worried at 3.3 ( you say it has gone down) and I am worried by 20, which is far too high.
However I will ask my Haemo tomorrow Thursday to make me an expert. Am coming out with blood blisters on my fingers ( anew phenominum) and this morning slept till 11.00 am, which I have not done in 50 years.

To all of my readers

Please book May 30th for a gigantic party to celebrate my 75th birthday.

Anyone who has spare time look up Jo96, and read some of the stuff he writes. He is an AML patient aged 14, who is in care and seems to change his family regularly, and no-one seems to have the slightest interest in looking after him. (You may have to enrol on the Acute Mylogenous Leukaemia Group)
If you read his stuff, with his weird spelling, (very mod and cool) you will realise that all of us, really have no problems at all. I write to Jo regularly, but as I do not understand how all this can happen in the USA, I cannot really help him.

Best of all to everyone
Christopher.

I saw where some didn't know what the WBC count meant. As explained to me the White blood cells are the ones that fight infection in your body. While they are listed as for example 3.3 that really means 3300. Normal range is 4.0 to 11.0. My most recent test showed mine to be at 1.6 which is considered way to low. It has been lower but they reverify the test and the always call to caution me to watch my temp to be sure it does not go over 100.2 as that would indicate an ingection and require an immediate visit to the ER. My red blood and hemoglobin were up due to the transfusion but still below normals. The other one they get concerned a lot about is the platelets which for me this time hit an all time low of 36 (normal range is 140-450. These prevent bleeding so I have to watch out for signs of bleeding like big bruises or in the stool, etc.

There is one other which I think is the neutr% which when multiplied with the WBC gives an amount of the WBC that actually are able to fight infection (apparently not all WBC with this stuff are up to the task). They like to see a result of 1500+ before they give you another chemo treatment.

Anyhow hope that all helps some.

Have a great day all

God Bless

Mike

When my mums White count fell below 1.5 we were told she was neutropenic only mildly, she was told not to eat out, no takeaways, no salads, no fruit unless you could remove the skin and basically nothing that anyone could of touched! When it fell below 0.5, it changed again and there were more things she couldn't eat, but at that stage she wasn't eating at all!

Best wises all,
sue

It seems that treatment really differs between countries, patients and specialists. My nuetrophil count went down to 0.8 and Hb went down to 90 . I asked my specialist why I hadn't started treatment as I noticed that on many other forums that patients with better results were already taking drugs or having blood transfusions. The specialist stated that the RBC is taken seriously, but the decision for blood transfusions comes when the RBC affects your daily living. He said that their are patients that get to a RBC of 70 without requiring blood transfusions because their bodies are still able to manage at that level. For my case my WBC is being closely monitoried. I was told that when my nuetrophils get to 0.5 that is when they consider the BMTransplant. I don't know much about Platelets, but I noted from other forum participants that they too can get quite low before any treatment is given.

Sueglove

I had a serious case of food poisoning a month ago, probably around the time my nuetrophil count went down to 0.8. I love eating, but I have started second thinking everything that I consume.

Best wishes
Rachael

My name is confused from England!
Saw the Vampire this morning Hemoglobin 9.8.but6 I am still down for two units of blood tomorrow, Friday. Platelets 19, about average for me, and WBC 13, much too high as these are apparently Leukaemic white cells, which are very very bad.

So....I am full of badness. Medication left the same at the high dose, I have been on for the last two weeks, to try and kill off or at least reduce the Leukaemic cells.

He still reckons I am doing OK, but have had days recently when I do not feel OK, and yesterday was a particularly bad one. Least said, soonest mended.

Discussed going to Bogota Colombia, IN juNE, AND HE IS HAPPY ENOUGH ABOUT THAT AS LONG AS i WEAR A MASK ON EACH PLANE, have regular tests and appointments with a competent Haemo, and have a blood transfusion before I go, and platelet and blood transfusions whilst away if required.

So I fancy a trip to celebrate my 75 years of being impossible.

Chris.

Chris....we had already booked a flight to England to celebrate your 75th...and NOW you're going to be in Bogota!

We're enjoying Hawaii but this morning we ran out of hot water just as I was finishing my shower...so Lou's been waiting for the hot water heater to do its thing!

My brother put in a solar hot water system a few years ago...so when they run out of hot water you just have to flip a switch....but why is it always during my shower?

We'll be off to breakfast soon and then more searches for great photos of the island. It's been raining all night and it's overcast now, but we're in the tropics and the sun will be shining again soon!

Have a great day everyone.

Gayle & Lou - Aloha!

Thanks for all of the info on this site. I've been watching abnormal blood counts for a few months now and told I probably have MDS. I'm holding back on the bone marrow examination until I finish some travel coming up. Here in NZ, they are unlikely to start any treatment as long as I'm almost symptom free anyway. The count that worries me most is the Neutrophil seg. It had been hovering at a worrying .7 to .8. This week it went down to .57. Lymphocyte is on the low end of normal. Does anyone have any practical advice for someone traveling in the US and Europe with .57 Neutrophil count?
Thanks
Jon

Hey everyone! Wherever your counts are right now... hang in there. There seems to be a lot of holidaying around here! Go for it I say...

There are a few here struggling with neutropenia. When I had Aplastic Anemia I had injections of G-CSF which I did myself at home, and it did the trick. They kept my neutrophils at a safe level after I had a nasty infection. But I know it can be expensive... but thankfully in Oz I didn't pay much at all under the public hospital system. Hope some of you guys can get access. Worth it to ask about anyway.

Just a question..... I was going to share a poem but not sure if I should start a new dsicussion post or what... what do you think?

Wow, so much to comment on!

Chris, do you have house room for several dozen of us to help you celebrate your 75th?

Or do we have to fly to Bogota?

Bionic Julie, Gippsland is where my husband was raised. Look for a small town named Tynong. Kind of a hole in the wall, small & country, but on the train line.

Rachael, you won't have to mow much longer, right? Fall has fell? I don't think we're going to have spring this year; we're going to wind up going directly from winter to summer. Drat.

Mike, thanks for the info on WBC. I did get around to looking it up, & don't think I need to worry about it yet. As to neutrophils, mine was 1.4--low, but not awful (I think). Jonbj, your Dr is the best one to answer your question about traveling with a low neutrophil count. But if Chris can do travel with his lousy counts, so can you!

Janet, that's great news on your husband's counts. Tell him to keep up the good work!

Gayle & Lou, I hope Hawaii is being good to you. I'd love to go back, but it's not in the cards.

P.S. Julie, we're ready for your poem. You promised!

Jules,

No do not start another discussion gp please for your poems, this is where your friends are.

We shall be in Englasnd for my 75th, so Gayle, your reservations will be fine. Expect you all, and can recommend some good English pubs to put you up!

Bogota, if we go will be in June, but no decision as yet.

Had a blood transfusion today, 2 unitsd. WEnt better than last time, as they got into my veins at the first try. Still I came home in a state of extreme shock, that I had even survived. I am the original big coward!!!

Rachel,
Anyuthing you want to know about paltelets write please. I am the original low platelet sufferer, and I can never anticipate where or when I will bruise or bleed. Keeps a bit of excitement in life.

Jules I am waiting with baired breath for your first poem. Whgich expression of my will feature.
Watch this page all of you
Chris.

Hi all! Well, here it is... one of my poems that I wrote for my Dad. It's long, but just simple... I'm no Shakespeare! My Dad has muscular dystrophy and now depends on a wheelchair to get around. And my Mum does an amazing job caring for him. But my Dad... here are my thoughts............