[Lee Snell]

Hi heather, it all depends on how bad he is. Eventually he will need help. My husband was able to do most thing up until about a week after treatment. Unfortunately treatment for him rapidly sent him downhill. Happy to give more details if you need.

[Lee Snell]

So sorry for your loss Angela, thinking of you. It’s never easy to see someone you truely love go through that. As hard as it is you did the right thing. Those last two sound very simialar to what we went through. If you ever need to talk,send me a message. Look after yourself as best you can. X

[Lee Snell]

Hi Angela,
If you ever need to talk about your situation I will gladly listen and answer any questions you have,if I can. It is a difficult time for you and your husband. Look after yourself as best you can.

[Lee Snell]

Hi, i live in australia and unfortunately we seem to be a bit behind on knowledge about MDS. that is why i joined this forum as even the cancer council forum here has only basic info on the condition and no one to connect with. feburary this year My husbands haemoglobin was at 62, wcc 2.4, platlets 15, blasts 0.07. not sure if you if you record things the same way? he also had chromosone abnormalities with t(5;7) resulting in a loss of 5q and 7q and additional material detected on chromosone 16. IPSS score intermediate-2, IPSS-R high risk. originally they thought he had progressive anemia and thrombocytopenia. because of his age he was referred to a doctor in sydney who told us that he was a good candidate for bone marrow transplant because he was white (sorry to offend anyone but that is what he said to us). Because every thing for us happened so quickly we had very little time to look into anything in depth. it dose seem that over here you have to be high risk to be considered for bone marrow transplant. there are risks involved in this procedure as they pretty much kill all your cells and replace them with healthy ones. this involves months in hospital and a possibility that it won’t work. i have never understood the wait and watch approach but i guess as this is a rare disease that they are still trying to find the best way to deal with it. keep yourself healthy, eat well, we even saw a naturopath to see if he could help. i hope this has been of some help. i think it is helping me to deal with the situation a little better to be able to share what i know. best wishes to all.

[Lee Snell]

Hi allan, im am new to posting so bear with me. My journey with mds started 4 years ago when my husband had a blood test before his hip operation. Unfortunately he had osteoarthritis in his hips and the heamatologist noticed abnormalities in his blood tests. It took 4 years and 3 bone marrow biopsys to diagonise his condition. We only found out he had mds in november last year after years of being told that they didnt know what he had. He was only 45 and i only 39. Being slightly blindsided by the diagnosis and thinking we had alot more time then we did he started treatment with vidaza in feburary this year. Unfortunately this was way to late and it made his symptom worse.he was having blood in his mouth most mornings and was put on transamix acid which stopped it for a while. While on treatment he was given EPO and injections to stimulate his white blood cells. Because of his religion he refused to accept blood transfusions, which i could never understand as i am not religious.He got very tired. The final week of his life he slept alot. Thankfully he was eating small amounts and still takeing fluids. Eventually he had trouble standing and could hardly hold a cup to drink. This post is fairly long sorry about that but i thought i would give you some history first. I never know how far to go with the experence we went through, it is still quite painful to relive. I can only offer my point of veiw i am holding back a little.make a will,get your affairs in order, talk to your family about the hard things,like how you are feeling,what your wishes are, funerals, even what songs you want played.oh and look into bone marrow transplants. I wish you the best of luck with every thing.

[Lee Snell]

Hi. I have just been through the end stage of MDS as the carer for my husband. He was only 45 years old. As difficult as his passing has been I feel I would like to share any info that could be of some help to any of you.

[Lee Snell]

Hi
Have just been thought the process of applying for carers payment and allowance. My husband was diagonised with MDS last November. In Australia MDS can be classed as terminal depending on what stage they are in.

[Author]

Posts