Myelodysplasia Support Group
The myelodysplastic syndromes (formerly known as "preleukemia") are a diverse collection of haematological conditions united by ineffective production of blood cells and varying risks of transformation to acute myelogenous leukemia. Anemia requiring chronic blood transfusion is frequently present. Although not a true malignant neoplasm, MDS is nevertheless classified...
Hello, everyone. I just joined your group & read everyone's posts. I was diagnosed April 2008, but know that I had anemia at least during the previous October, because I tried to give blood & was turned down.
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
I had the bone marrow biopsy & was relieved to know that I'm in an early stage. I see my hematologist/oncologist every 8-10 weeks.
How can I contribute to this discussion?
My euphoria is still present today. Been to see my normal Haemo, and had my third blood test this week. He approves my going away, and has organised a transfusion of three untis of blood for June 11th, so I am well stocked up.
Jules, Have you got the little Labrador with you , or is it just a picture. Hope you are well, at a time of hardship for you, I feel guyilty that all is going well for me, so think of you often. I really must come out to Australia, to meet you, Rachel and Jan.
Gayle,
Not sure whether it will do any medical good or harm, but a Litre bottle of Vodka or Whisky would do Lou's spirits a power of good.!
It helps, to spoon some folk onto planes.!
Thanks Susan and thanks Mike for your unswerving support.
Love to all.
Chris.
I'm so happy for you. Traveling will hopefully do you a world of good. Enough vodka, & you won't need antibiotics!
Gayle, Chris's advice for flying might work for Lou. I just realized that this is why Humphrey won't fly--he gave up drinking years ago.
I am so pleased to hear some good news for my friend after all your recent tribulations. A trip and a new medical programme should be just the ticket.
It is our last night here in the New Forest and I feel very relaxed after an excellent weeks rest. Long drive home tomorrow as I am avoiding flying as it wipes me out for days. It has been fantastic to be able to spend so much time with Maxine and wee Jessica without having to work and be on call etc.
Love to all
Ally
Sharon, Poor you.....a TT husband. Remember as Noel Coward wrote and sang,
"A good man's no good for anyone,
He's like Champagne gone flat,
Who wants a lover, a husband or a brother,
Who ..........(cannot remember)
And is topping to his Mother.
A good man's no good for anyone."
Today is booking day for our holiday.
48 hours to my birthday.
LaDawn
xx Jules
You really should have signed it, after all, it will live with all of us ....for ever! Now you are famous in West Sussex.!
Chris.
I have been unexpectedly and unwillingly thrust into the choppy seas of the MDS world. Hope you will welcome me into your group-leaky boat. I just read all 669 posts and am inspired by the strength that each of you pass onto each other as you travel the MDS road.
My husband age 51 was just dx with MDS -RARS. The oncologist told us that he is considered low risk- BM- 2% blasts, karotype good/no chromosome abnormalites, 2 cytopenias/WBC,RBC: Plts stable in the 300k range. His lowest hemoglobin so far was 10.3 (yesterday) and wbc is 4.0 but neutrophils are only in the 1100 range. Our plan is watchful waiting with a f/u scheduled at a University setting (UPENN) in 2 months.
My first born son is a leukemia survivor dx t/cell leukemia-one of the more aggressive forms of ALL. Without a doubt it was an experience that took our family to the depths of hell and back again-my son's words :((
With a most blissful and joyful heart (understatement),
I share with you that my son won his battle with the beast and today enjoys continued health.
With a heavy but hopeful heart it appears our family must journey that most challenging road again. From what I have read, with MDS the beast will not attack us right away so I know I must be thankful for that. I am so unsure of what to expect.
Reading your posts has provided much comfort and I am thankful for that as well.
Birdman-Thank you so much for starting this thread!
Bionic Jules: Wishes for uneventful BMT!!
Racheal- Hope you are feeling better after your transfusion.
Mike- Congratulations! Enjoy your new grandchild!
Gayle/Lou: A yr after my 16 yr old son completed his treatments he asked us to go to Hawaii. When we asked him "Why Hawaii?", he responded "Well, as a family we have seen/lived/know what hell on earth is like- I want to see what heaven on earth looks like". I think you will agree- he was right!
He still wears the shark tooth necklace that we bought for him there. Funny thing is I always thought he wore it as a reminder that he once fought and won his fight with the beast. Just a few months ago I asked him if her ever takes it off, the leukemia is gone and it's not coming back I assurred him. He laughed, "I don't wear it for that. I wear it becauses it reminds me that with hard work and the love/support of my family I can do and accomplish anything". I cried, again.
Chris: Your posts have been soo uplifting/inspiring! I was so happy to read your most recent post. Your determination serves as a guiding light to those that follow.
I am so looking forward to your May 30 posting!
If you have read this far~ Thank you.
Wishes for continued peace and strength to all who share this leaky boat.
Sincerely,
Eileen
HAPPY BIRTHDAY CAPTAIN CHRIS! Thank you for all you are. And I'm so glad that things are going really well for you. You can't feel guilty about that!
Welcome Eileen and family! Wow... you sure did catch up quick. Thank you for the well wishes. I will know more about when things are likely to be starting after my appointment on Wednesday.
My little puppy here reminds me of the lab we once had, "Sally". And I guess in this picture also... the pup looks how I feel right now. Not happy or sad. Just going with the flow.
And thanks so much LaDawn for your care too! How u are doing ok.
((((big hug)))) to all... on this very special occasion!
Happy Birthday to you
Happy Birthday to you
Happy Birthday dear Captain Chris.....
Happy Birthday to YOU.
Congratulations. Luv from Jules
Happy 75th Birthday! What a wonderful age to be.....atleast twenty-five more to go. I thought you might like an insight on how to live life at 100. I have worked in aged care for nearly nine years working as an Occuaptional Health & Safety Manager. I was watching the news on TV and saw twin ladies ( residing at one of the aged care homes I worked for) who had turned 100 that day. Their they were on their motorised wheelchairs racing each other down a narrow hallway..... all I could see was the incident about to occur and then I remembered that if I had turned 100 I'd be having fun without worrying about the "what if".
I'm glad that you liked the drawing. It's very simple in format. I could only include those that used identifiable photos but I included the daily strength avatar in the portal windows to represent the others who contribute to this forum.
I hope you have joyous day. Once again, Happy Birthday Chris.
I love your story about the 100-year-old twins, Rachael. I can just see Christopher at 100, pinching all the nurses.
Yay, I found your drawing. It's terrific! Too bad we can't post it at the top of our discussion. Now everyone knows my dirty little secret--I can't find my way around a paper bag, let alone this forum. I seldom check all the other stuff. So if anyone has done something nice for me & wondered why I don't reply, now you know.
Eileen, welcome to our leaky boat. I can't believe you ate (read) the whole thing! It is an incredible but heartwarming thing that your son survived leukemia. If your family could weather that, your husband's MDS will be a piece of cake. Sounds like he's similar to my category, & I'm still going strong 2 years after diagnosis.
Jules, going with the flow isn't a bad place to be for the moment. Sometimes that can be quite difficult!
Reading all 660 + postings proves you are straight out of the asylum!
The old bugger is 75 today, pissed as a newt and tremendously happy, so thanks to all the crew, and I will write tomorrow when I sober up.....if I do!"
Love to all
Christopher J Barr
Born 30th May 1935
In Liversedge Yorkshire United Kingdom, Gods Gift to mankind,
Just now back from visiting the grand babies. I am completely convinced now that I do have the most beautiful grand daughter in the entire world....................It's a Papa thing. At two weeks old she told me I was ok and to remember all the other grand kids were amateurs at suckering Papa into things. hmmmmmmmm LOL Young grandson had lots of things for Papa to do. Good thing I got a transfusion LOL...felt better. Still got out of breath some but made it through all righ.
Welcom Eileen...great group here with lots of love and support.
Happy Birthday Chris. I have ten years to catch up with you. I'd sing to you but according to my family that may be the single worst thing I could do LOL.
Have fun everyone.
MIke