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?
Best wishes to all. Jon
Whenever I travel my Dr always insists I take a stock of anti-biotics in case I get some kind of infection during my trip. My neutrophil count is normally in the 0.6 - 0.9 range (although at last test it was 1.1 woohoo!) so not as bad as you and thankfully I have avoided requiring the injections or being permanently placed on anti-biotics.
Hope you have a great trip
Ally
Poshshorty - good luck on your fishing trip
Jon - have a great trip. I hope you don't wear glasses...because when I wore a mask...my glasses fogged up.
Jymini - I hope you're feeling better
Chris - I really hope you're doing better too!
We're on the downhill run of our vacation time in Hawaii.We've just enjoyed 2 nights in Waikiki with AIRCONDITIONING and no mosquitoes. Now we're heading back to the North Shore for two more night with relatives. I'm going to miss the relaxing time we've had here...but can't wait to see our little dog again!
Gayle & Lou
Full of cold, nose sore as hell, stye in my eye, black and blue whereever I have a spot, and my kidneys are a bit suspect. So back on antibiotics, anti biotic gream formy stye, and Hydrocortisone for my nose, arneca cream for the bruises.
Yesterday my cousin, aged 70 died. He had cancer of the prostate that has spread. Went out delivereing election leaflets, on his bicycle, and was found on the ground with head injuries. Taken to hospital but never came round. And I thought I would be the first in the family, and the first of 11 grandchildren to die. Life is strange, and oh so tenuous.!
Tomorrow Thursday is our General Election Day. We desperately need a new Conservative Government.
Chris.
I have not yet, but I WILL, WILL, WILL recover.
I am determined.
Chris.
You need to get better you have a party to plan for with visitors coming from across the globe!
Ally
It's a happy thing to see so many of our members traveling & getting on with their lives.
I'm glad too that people are getting out and about. I am doing some volunteer work with people who have a disability (hoping to get some part-time work happening) .... and going to a creative writing workshop today.
Feeling a lot better after my horrible stomach bug. I had a blood test that revealed my platelets are still around where they always are: 22 .... but it's not causing me any major grief. I'm seeing the BMT Dr next Friday. So longing to just have a chat with my specialist too. I feel like I'm hanging out on a limb...
So once we were in a leaky boat. Now we're in a tree!!!!
Hang in there everyone! Have a great weekend... and for many of you, safe travels!
~ bionicJ
Chris - Lou wants you to know we're both thinking about you...and have been checking posts regularly.
Get well...and get back to your feisty self!
Gayle & Lou
Chris you hang in there and keep researching and working every angle you can find there. I know my oncologist here has concerns that any new program may end up with "decision makers" that determine the viability of a drug related to thier paying for the treatment through either some form of insurance or Medicare based on cost or what they might feel is the "bang for the buck". As I've told here, he has access to upwards of 20 drugs that are doing very good things that are not available in the UK and other parts because of these decisions. Needless to say this is wrong as all folks in need of treatment should have access to all treatments.
As always Chris your along with each of us in this group and around the world that have this and other terrible diseases are in our prayers. Get up each day my freind, take the day the Lord has given you and do all you can with it.
I had never had a blood transfusion before so 4 weeks ago didn't know what to expect. The general overall feeling has been better but apparently I've used up all the stuff LOL. I went out and filled the air in a low tire on the car a little bit ago and was out of breath like I had run a marathon or something.
Off to the doc each day of next week for chemo. Last WBC count was 1.8, RBC 2.1, HGB 8.2 and PLT were at 36. Mine don't usually come back up in four weeks and that is why we were doing the juice every 6 but because the blasts are back up to 22%, we're doing every 4 weeks regardless of the counts. He wants to keep me on the Dacogen as I do well on it and is trying to avoid going with other alternatives that might be more toxic.
Anyhow you all have a great weekend and give each day all you have.
God Bless,
Mike
I was diagnosed 2 months ago, also new I was anemic because of being turned away from giving blood. I am 41 years old. My brother and sister are being tested to be stem cell donors. I completed 1 month of chemo shots-was suppose to start 2nd cycle 2 weeks ago. I recieved 2 pints of blood and 1 helping of platelets. Don't know what needs to be done to get to the 2nd cycle of Vidazia shots.
Best to you Chris.
Harris....Did you have symptoms that led to your diagnosis?
I've had the bad counts for a few months....that I know about, but am only just now having symptoms. It may be due to the shot of neupogen I gave my self on Tuesday. Side effects listed are sore bones and headaches.....and in rare cases explosion of spleen. I've only got the headaches and a general lack of energy so far.
Because NZ doesn't support any MDS medicine, I am going to hold off on the bone marrow analysis until September. Mainly because they won't put me on anything anyway unless I write a cheque for it. The neupogen was my idea because of low neutraphils and some travel.
Best to all
Jon
Thanks for your comments
HaRRIS,
wELCOME TO THE LEAKEY BOAT COMMUNITY.
Jon,
I would not fancy having to pay for everything, you have my sympathy, but as a Kiwi come and live in Blighty for a time.!
Best to all
Chris
A notable landmark. Contribution No 600.
And I 've beaten Gayle to it.
Our election went badly. A hung Parliament is in prospect, with indecision and weak government the possible result. We must wait and see, or watch and wait, the same as I did for 1 year after diagnosis as an MDS bod.
Love to all.
Chris