Husband was dx about a year ago. He has undergone a couple of chemo treatments and is now in a clinical trial. He is so tired and fatiqued plus the weakness really gets him down. He has a really hard time doing stairs because of being anemic. He is too old for a BMT. Not sure what the options are but am glad to hear that the being tired is normal for this. He has received several transfusions and also had the shots to boost the red blood. Is there anything else that we should know? Or maybe what to expect? Thanks all.

mtair....how old is your husband? What kind of chemo is he on? I am 60 years old and on oral Vidaza. This has restored my red blood counts and I again feel great. I also had severe fatigue before the Vidaza.

Hello Folks,

Its been a long long time since I contributed anything, and during the last two months have had some very exciting and also some very worrying time. I am now trying to find the time to set it all down so you just all know what are good and bad times for me.

Will write soon. Hurray, hurray, hurray, chrisjb is still with us. Boo! Boo! BOO!!!

Will wonders never cease! Chris, I began to wonder what happened to everyone. Maybe you'll get us started again!!

Well let me start with a bit of bad news and a whole week of good news.

May.....a tooth fell out, mouth filled with blood, had to go into hospital for an emergency transfusion of platelets. Still all OK, I lived.

30th May 2009. My 74th birthday. Two daygters, Mandy ny eldest and Joanna my youngest sent us two tickets to see a musical in LOndon "Priscilla Queen of the Desert".

WE arrived on time. My wife told me we would have dinner on the way home, and then spend a night at an hotel which she had organised, so I could drink a bottle of wine. Lovely considerate girl, is Judith.

The curtain went up. THe show started. 3 or 4 minutes later tyhere was a commotion at the end of our row. My eldest daughter Mandy, who lives 600 miles away in Scotland was there, with my youngest Joanna and her husband who live in Devon, 250 miles away. I was amazed. Then I looked at my wife, and saw next to her my Daughter Susie who lives in Hong Kong, 6000 miles away. They had all travelled specially for my birthday. I could only cry,and I did.

In the interval they told me we would all have dinner and stay at the Mayfair Hotel, in LOndon. On Sunday Susie was taking me and my wife to Salcombe, a beatiful fishing and sailing village on the South Devon Coast that has always been my favourite place in the world. WE spent 4 days there. Pure bliss.

What a surprise, how absolutely fantastic daughetrs can be. It may be my last birthday, but what a birthday, everything I could have dreamed of and wanted.

When I have time I will tell you about the next exciting and worrying chapter. Love Chris.

Chris, your daughters' surprise made me cry. What a wonderful surprise from them and your terrific wife! That's a birthday to top all birthdays.

Okay, now you can lay on the bad news...

But the next bit of news was not bad......at first.

I have twin daughters, one in Dubai and one in Hong Kong. They paid for tickets to nisit them both, so we flew on 17 June, London Dubai, spent a week there including four days ata very upmarket seaside hotel. Fantastic, and had three days in my daughters flat, then on to Hong Kong. An equally great week there, and its a great palce for shopping so Judith was in her element, and I was very happy to see my new twin grandchildren, one of each, now 9 months old. But, but (here it is)!
I caught an infection on the plane, from the ghastly air recircuklating system, started with an Upper Respiratory Infection, which become a throat infection, and found my self with Mastoiditis. The most painful experience of my 74 years. Had a very bad time in the American Hospital who refused to treat me, in spite of urging by my Insurers, who wanted me stabilised so I could fly home.They were afraid when they read my blood counts! Platelets down at 37, bad blood cells up at 20+, good white blood cells on the floor, in other words no imune system, and many problems. Eventuially admittted to the City Hospital who ere excellent and after three days I had an operation, two days later left hospital, returned to see the surgeon two days after that, and after two more days was allowed to fly home. Got home, and immediately to local hospital ENT dept, for check up, and stitches out. I am mending,...........but...............yes another but............but wait for another day to read the next thrilling installment.!!!!!

Bibi my friends keep well, keep happy and keep up the optimism........Will write again.

So here I am again, with the continuing saga of Chris J B, a 74 year old, who was diagnosed almost 12 months ago with MDS. Three weeks ago my consultant cut my my appointment gaps from 4 weeks to 3 weeks. I saw him on Tuesday, and also saw the Consultant at Kings College, London who are the centre for excellence. Both agree. I probably now have crossed the boudary to Acute Mylogenous Leukaemia, my imune susyem is on the floor, my platelets at 19, tho my hemoglobin is the best at 9.1. They agree, I have 3 to 6 months to live, (which does not actually go down too well with Judith my wife, or any of my children.) Surprise, surprise!!!!

They would like me to try Chemo, by name Cytarabine or Ara-C. This involves two injections a day for 14 days, during which time my blood counts will almost certainly drop, exposing me to greater danger of bleeding and infections. Then 14 days off. Then strart again, and do it for 9 months. However only 15% of those who take it actually last 9 months.!

So what do I do. My present inclination is to rely on my inner strengths, and say no to Chemotherapy. I am as tough as old boot leathyer, I think, and I feel the best thing is to enjoy my last few months, and hope for a quick and painless end.

I had hoped to come over to the States and meet up with some of you Pharmgirl, Birdmom etc etc, but I am advised not to travel on public transport, certainly not planes, with their ghastly recirculating disease ridden air systems.

So I ought to be joining the AML group on Daily Stredngth. The only problem is noone seems to contribute much there.....a very bad sign, but then nobody has written much on the MDS Group in recent times, so come along Birdmom, Pharmgirl, Cnemeti and others, wake up, bestir yourselves, and write on DS.
BY the way, I had one very wonderful experience a week or so ago, and I will wite about it, when next I have some time.
Love as always, and all best wishes to all of you.
Christopher.

I was afraid of this, Chris. One thing I didn't know is that you had been diagnosed only a year ago. I wonder why? Few symptoms, or what?

Have you seen the movie Bucket List? It's about two men who have a year to live. One of them makes a bucket list (things he wants to do before he kicks the bucket), and the other joins in. It was very thought-provoking.

I've been thinking about what I wish to do when my counts deteriorate, and here you are--faced with decisions now. For what it's worth, I will try the shots when the time comes, and that may not be too long from now. But I feel disinclined to do much more than that, as we have no cure for MDS. I think I'd rather go in peace.

But I'm not there yet, Chris. I might feel very differently when the time comes.

Your comments about plane travel worry me (and yes, I would have loved to meet you!). I'm going on a European cruise in early October (one of my bucket list items). I will have four flights and a cruise ship full of other folks' germs. I plan to ask my Dr what I can do to protect myself. Any advice?

I hope you will stay with this discussion group, whether or not you join another. I too wonder where everyone is. Hellooooooo?

Hang in, you tough ol' boot!

Dear ol' Birdmom,

Yes I was diagnosed when I went into hospital for a vascular operation, they took blood, and found my platelets were at 66. That was August/September 2008. Since then I have had periods of dropping counts and periods of stable counts, the longest stable period being 3 months. But now they have gone to pot! The wonder is that I feel perfectly OK, have no pain, don't feel ill, just totally normal, but somewhere inside me there is a Bl..dy big rat gnawing away at everything that was good, and turning it bad, and there is nothing I or anyone else can do. My adventure in Dubai was a foretaste, I reckon, of an event yet to happen. That eventually worked out OK, but next time, who knows!

My Consultant Hemo, tells me, that if I do have to go away, he will send me off with some strong anti-biotics, but he is not recommending foreign travel or planes. Buy some really good breathing masks, but real good ones, not just a flimsy layer of paper and cloth. On the plane, don't eat, don't drink, don't talk and keep your mask on, and you will get some protection.

My wife and I are planning to do all the things we wanted to do, but did not have time to do. I am trying to get every useful bit of info on paper to help her. This is a crisis which is more telling for her than it is for me, and she feels it more keenly. I have accepted the inevitable, though I fear another infection and a major illness, pain and misery, which will happen, sooner or later, and we do not know when.

But one good thing has happened. Last week-end my son,(by my first marriage) who has lived in Australia for 12 years rang me. It has been his wish not to maintain contact. He and his wife who I have never met , and my 9th Gradchild aged 5, met for breakfast. It was wonderful, but why has forthcoming death got to be responsible for such a happy event.

Life has its ups and downs. I am determined that my remaining time, shall have as many ups as possible, and that I will remain positive, optimistic, and determined.

Oscar Wilde wrote:-
"The difference between an Optimist and a Pessimist is droll. The Optimist sees the Doughnut, the Pessimist the hole".

Let us wake up the other members of this group.....!!!!!!
Christopher.

Oh Chris, I'm happy to hear that your long-lost son decided to bury the hatchet, even if it took your forthcoming demise to do it.

And yes, I know that the reason takes the edge off, but still..........

I should ask you about your health symptoms. Could you list them for me in order of worst first? I see changes in my body, and it's difficult to know what's MDS and what's aging.

I realize that we probably have very different classes of MDS, but it would still help.

Dear Birdmom,

My symptoms are all in the blood and bone marrow, with one exception. Refractory Anaemia, does cause me to fall asleep, for between 1 hour and 6 hours per day. Totally involuntary sleep!!

I have suffered from bleeding from my gims when a tooth came out. (Transf.platelets)
I had to have a platelets transfusion before detal surgery, and prior to operations planned (which did not take place) and actual, that did take place.

I am losing weight, cos I restrict my food intake and want to lose weight. I have lost about 20Kg in the last 6 months.

Am still sane.!! My memory is not as good as it was. I haven't lost my sense of humour. I love life, and don't want to go so young. I am optimistic, I am determined, I do pray, and I want support from everyone.

xox Christopher xox

Well, Chris, I look forward to lots & lots of naps. Do you still drive? If so, I hope that your falling asleep doesn't happen then!!!

I don't seem to be able to get rid of old blood, like from my fall & eyelid surgery. Still have a dark spot above my eyebrow, & dark spots under my eyes. I guess they blend with the rest of my mismatched complexion!

20 kilos is about 40 lb, right? That's a bunch. Have you reached a good level, or are you now scrawny? My weight is stable at 130 lb.

I can tell that you haven't lost your sense of humor. I'll leave it up to your wife as to whether or not you are sane. As to forgetfulness, I'm afraid that comes with the territory (getting older). Since I never had a good memory to start with, I haven't lost a whole lot. I live among seniors, & it's a very common complaint. We just laugh about it--"never will forget ol' watsername!"

Dear Birdmom, and anyone else out there !

Bad news today. My White blood cells, mainly bad ones have increased rapidly to 32. They have gone up in a few days from 21. I have today been warned that I am in danger of a stroke or severe infection, either of which could be fatal.

I have been prescribed, in tablet form 2 X 500mg of Hydroxycarbamide, daily, which is a form of oral Chemo.

On WEdnesday I had my first blood transfusion.

For the first time I feel in danger, vulnerable, and just a tad frightened.

If anyone has some better quality blood, mix it up with vodka, or gin, and send me a pint. Who knows it might work.

I think my condition has worsenend because I have now crossed the line to Acute Myelogenous Leukaemia.

Hope the rest of you are having better luck!!!
Love
Christopher.

Ah Chris, in your case no news always seems to be bad news. I'm so sorry to hear about your WBC worsening.

Does the oral chemo affect you? In other words, does it make you sick or anything?

I don't understand about the possibility of a stroke. What does that have to do with your WBC? Obviously, you are at tremendous risk of infection.

Did the transfusion make you feel better temporarily? After all, it was nice, new blood.

Can't say as I blame you for being scared. Intellectually, we know what's coming, but our hearts don't want to believe it. At any rate, keep writing. Even if the others don't join in, I'm here for support.