Thanks Sharon, I am seeing the Vampire tomorrow, if snow doesn't lock me in at home. Will ask about Eosinophils. Never heard of them.

Gayle, glad to hear you've convinced Lou to go to Hawaii. Will do him good. As for getting stronger asnd having a good time, try Viagara.

Love Chris

Sharon,
Yes eisinophils are very complicated. Thedy seem to be part of the white blood cells, that at 1-6% are good, but beyond it are not good. I looked it up on Wikepedia, and there is a very technical description, and the only good bit is that they fight Helminth Worm Infection, but they do indicate some infection in your blood, but are curable.
Sounds as tho you don't have too much to worry about, and are all part and parcel of the problems we share. However will ask tomorrow what my level is, and see and report on what the answer is.
Love
Chris.

Hi everyone. Looks like we're giving the vampires a good workout. At least they are staying employed, unlike a lot of others.

Gayle, my hemoglobin was 9.7. Three weeks ago it was 9.5, which was a big drop from 10.9 and threw me into a tizzy. I'm on the max dose of Aranesp, so unless the counts improve more than this, I wonder if it's worth it. I'll be asking my Dr when I see him in a couple of months.

Chris, thanks for checking on eosinophils for me. The percentage took a big jump this time, which is why it stood out to me (from 5.2 to 9.9%). Of course, that number goes up & down, but not that much ever before.

Gayle, I'm so happy that you two have decided to go to Hawaii. H & I went twice about 30 years ago, & loved it. But we won't be going back, at least together, as he won't fly any more.

Hello everybody my name is Ally I am a 38 year old male from Scotland and I was diagnosed with Myelodysplasia (intermediate1) nearly 2 years ago. I have just read through all the posts and have found it to be tremendously educational and most importantly inspirational so thanks to all! I have found it really difficult to find any solid prognosis on my condition as I am apparently younger than normal for this condition.

I suppose I should tell you that in my case my platelets, red blood count and hg are all in the low but normal range and it is my White blood count (2.5) and neutrophil count (0.7) that seem to be the area of concern. All in all I am lucky I suppose as although I suffer from fatigue, headaches and nausea I am able to live a restricted but normal life. I am back working full time and able to enjoy my time with my wife Maxine and our 2 year old daughter Jessica.

Well now I have said hello I must go get some Beauty sleep. I hope to become an active member of this community and get to know you all better.

Best regards

Ally

Dear Ally...and others,

It's nice to have you join us, welcome aboard. I applaud your grand effort to read all our past postings. I too did that when we joined the group...but that was back when we were around 150 or so...and now this is #321.

Anyway, stay tuned on this channel for more hilarious posting from our English friend Chris. We're serious about staying well but we can still poke fun at this nasty condition.

Question...are you a candidate for a bone marrow transplant and would that help your prognosis?

Again welcome Ally - new blood to keep us on our toes!

Gayle & Lou Najera (Oregon, USA)

Welcome, doubly welcome Ally as a fellow British stalwart. Not many of us about. Where do you live in Scotland. If you have any doubts about the treatment you are getting, the Hospital in Dundee is a centre of excellence for Myloid type problems. I go every 2 or 3 months to Kings College London, which is also a centre of excellence, and I find that a second opinion is very useful and often reassuring. I live in West Sussex, but have a daughter and her family in Scotland, and in fact I am due in Inverness on February 25th. You must join me in occasionally poking fun at the Americans, it keeps me going.

Sharon, I asked about eosinophils, and I was told, it is serious and you should be getting treatment for it. Think it shows an infection somewhere.

Saw the Vampires this morning. Hemoglobin 10, White Blood Cells 11, Platelets 22. He said,
"You are doing allright.!" "Come back in 3 weeks." "Chemotheraphy dose stays the same."

So I am a happy bunny.

However I am very worried by the way the American people are treating their President.After all, he is 100 times better than wee Bush, and far far better than Hilary would have been. So for the sake of the world, and your health, please get behind him. This is an ORDER!!!!!!!!!
Love to all
Chris.

Hello again and what a nice welcome so thank you for that.

Gayle & Lou

I am a candidate for a BMT but as a recent study indicated that for the under 50s the transplant poses a risk that should not be taken till the last minute (ideally just before it flips to AML) then they have 'parked' this idea until my condition demands this step be considered.

Chris

I live just outside Glasgow and attend a Hospital in East Kilbride and the oncology unit there is excellent and provides alternative therapies etc. The centre of excellence in Dundee was the baby of a professor who now works in Leeds and he has been in contact with my Dr and (kindly) volunteered me for another BMT so he could get a clear look at the progression since my previous 'drillings'. I think he and my Dr have agreed that when the condition begins to progress then they will begin a process to refer me to him. His view was that as all the trials etc were for a different age group then there was no real advantage at this time.

In the interest of supporting an organisation that I may one day depend on I have managed to form a partnership between my employer (Strathclyde Fire & Rescue Service) and the Anthony Nolan Trust and so far we have held a few donor clinics and added 150+ donors to the register so hopefully we can save a few lives this way.

Anyway just thought I should answer your questions and thank you for my very nice welcome. I will be back with questions of my own once I get more time.

In the mean time congrats Chris on some better news and I do hope it continues.

Ally

Welcome, Ally! I leave my computer for a minute & all hell breaks loose. Yes, you appear to be an anomaly. You are far too young to be in this boat with the rest of us.

Gayle beat me to the question of a BMT, but apparently it's a wait & see thing. I know there are risks to consider. For most of us, BMT isn't even an option.

Chris, it seems strange to me that your hemoglobin is higher than mine or Lou's. I wonder why that is? Not that we'd trade it for your other numbers, which are incredibly low. At least you're holding steady & maybe can bury your doctors, like my late father-in-law did.

I appreciate the info about eosinophils, Chris. Sort of. Now I have something else to worry about. I will attempt again to do some online research.

Sharon,

That's a question that is easy to answer. I had two units of blood transfused two weeks ago, so I am still deriving benefit from it. Prior to that it was at 8, and becuase of my chemo drugs, I expect it will go down over the next few weeks, and I'll be needing a transfusion again. Its a circle.! I am told that in time, I may need transfusions on a more regular timetable, but at present 6 weeks seems to be the interval. (And I hate the process)

Just got a new computer, which is so much easier and faster, that I may even start writing longer entries. I can hear you all saying,
"Wish the silly bugger would get his old machine back!!!!!"
Love
Chris.

I keep forgetting about your blood transfusions changing your counts, Chris. Guess I thought you took that old phrase to heart: "We needt some new blood around here."

Speaking of hearts, happy belated Valentine's Day, everyone.

Chris - you must have just been joshing us about the new computer. Either that or you're baffled by it and can no longer post even short comments.

CHRIS - WHERE ARE YOU?

Hi Birdmom and anyone else who reads our posts.

Lou isn't scheduled to see his doctor until March 5...but we're expecting that his blood count has again taken a dip...he has no energy and is feeling depressed about his condition. We may have to move up his appointment if it gets any worse.

Wish us luck

Gayle & Lou

Gayle, I'm so sorry to hear that Lou isn't doing well. But "tired" is what we all do best!

Can you give us more specifics on his counts? I know that his hemoglobin is about the same as mine, so what other counts are involved here?

Also, you may have told us already, but is Lou working, or retired? In other words, can he live at his own pace?

Report from England.

Its bl...y cold here, I don't feel well, nothing serious but I have had and still have some sort of digestive problem, with a frightful pain, I feel bloated, and cannot bup to get rid of the wind inside me. Have a bad sore throat again, and my Family Doictor says its all part of the same thing, so its some sort of a virus, but we just don't recover from these things like we did pre-MDS.
At the end of November, I went through a speed camera, there all over the roads here, and now am faced with a 60 fine and three points on my licence, or pay 110 and go on a "Speed Awareness Course". I just hope I have the patience tomorrow, to put up with it,and not laugh in their faces.! Not a good thing to do.
Thursday Judith and I go to Scotland, to see to the academic achievements or failures of one of my wards, a 16 year old from Ukraine. Have to go, this is work that pays.!
Back Sunday.

I could just do with feeling better.
AHHHHHHHHHHHHHHHHH! Poor old bu..er.!
Love to all
Chris

Sorry folks, forgot one important thing. I have now lost almost 30 kilos (66 lbs) in weight. 3 kilos in the last week.

Every pound I lose is a benefit, and I am now walking much better with less pain in my legs, where for several years I have had vascular problems.

As my family say "we see far less of you"

Chris