MDS Im sorry to say im not alone..

[Martin UK]

Hi all i was diagnosed a year ago with lynphnode cancer but after my first of many bone marrow biopsy’s is was found i have MDS instead. humm i am 39yrs old single (now anyway) tut she couldnt cope with it all..ah shame stand in my shoes love and smell the roses.anyway i was told it was rare but having just joined this forum i see it isnt. and i dont know weather to be glad or sad both i think.iv’e had a cousr of ATG rabbit protein (phew major rigors) didnt work and im on the MUD list now as none of my siblings are a match, nowhere near it. its ok i had a word with mum and she assure’s me dad is my dad.lol.as you can probaly tell i have a possitive attitude to this well its the only way i can deal with it.its hard to see my children and wonder if i will be hear next year and so on.i am active just like b4 i hike div climb ride my motorbike with a platlet count of 4 nb 7 wcc 0.7 i have 3units blood every 3/4 weeks and 1 unit of platlets every 2/3 weeks i eat like a horse even when i dont feel like it i have ensure plus mabe 2 aday in a smoothy yummy 2 banana’s 6 Strawberries 1 ensure plus and half a pint of milk blend till thick. i love um.and then we go on to the dreadfull medication. im on ITRACONAZOLE ORAL.ACICLOVIR TABS,CIPROFLOXCIN TABS.LANSOPRAZOLE TABS. AND IS THR ANYONE IN THIS WONDERFULL EARTH THAT LIKES (ITRACONAZOLE)it must be the most disgusting thing im sick of it id rather chew on my brothers size 11 fishing boots.any way sory if i bored youide just thought id have a chat it helps to talk..ttfn

[covergirl]

Martin UK,
Welcome to the Forum. It’s a wonderful family. I was diagnosed almost a year ago and have learned most of what I know about this disease right here – the good, the bad, and the ugly. I also had a failed bout with ATG rabbit. It was VERY ugly.
I work everyday, everyone tells me I look great, and so far monthly tx’s are sustaining me. I’m joining a gym to increase my exercize-noticed I gained 2 lbs over the holidays. Anyhow, take one day at a time and again, welcome to the forum.

[frank]

Martin Uk,

welcome to the Forum. it seems we are in the same age group now. i was diagnosed in early 2004, just before my twins born, it is so terrible. and i havn’t try the ATG, but i do try Vidaza, it is not a pleasant result. i havn’t go back to the treatment, but really afraid on it.
i also work full time, doing execice everyday, but i try to avoid claiming and some other activities; just be cautious. MDS is a serious diesease, have to face it.

covergirl, nice to see you again. how’s everything.

Frank

[marylinda]

Martin, You are definitely not alone. Like you, none of my 7 siblings are a match for me and there is no match in the bone marrow registry.However, when the doctor told me there was no ,atch, she did preface it with, “All you brothers and sisters do have the same parents though,” and went on to tell how one patient found out her sister was only a half sister and from what she said it cause a lot of problems. Of course, she kept the identity cionfidential etc. I guess lot of people just assume that with 7 siblings there should have been a match.
You sound like you have a well needed positive attitude and outlook on life and enjoy all you can. Good luck. Thinking of the children is both joyful and sad, I know. We all want the best a good loving carefree life for our children and grandchildren but it’s not always possible.

[Jimbob]

Martin,
Don’t let prognosis or survival rates affect your attitude. That is what cn help you to beat the odds. When I was first DXd, I was told I could expect 11 months at best. I have beaten that by about 2 years and plan to be around for at least a couple of more decades.
Jim

[Terri]

Martin, welcome I am sorry you have had to find us. These people on this forum are my angels they get me through every day. I am the caregiver and It scares me so. But like you my BOb is taking one day at a time and enjoying life to the fullest

[Martin UK]

Quote:

Originally posted by Martin UK:
Hi all i was diagnosed a year ago with lynphnode cancer but after my first of many bone marrow biopsy’s is was found i have MDS instead. humm i am 39yrs old single (now anyway) tut she couldnt cope with it all..ah shame stand in my shoes love and smell the roses.anyway i was told it was rare but having just joined this forum i see it isnt. and i dont know weather to be glad or sad both i think.iv’e had a cousr of ATG rabbit protein (phew major rigors) didnt work and im on the MUD list now as none of my siblings are a match, nowhere near it. its ok i had a word with mum and she assure’s me dad is my dad.lol.as you can probaly tell i have a possitive attitude to this well its the only way i can deal with it.its hard to see my children and wonder if i will be hear next year and so on.i am active just like b4 i hike div climb ride my motorbike with a platlet count of 4 nb 7 wcc 0.7 i have 3units blood every 3/4 weeks and 1 unit of platlets every 2/3 weeks i eat like a horse even when i dont feel like it i have ensure plus mabe 2 aday in a smoothy yummy 2 banana’s 6 Strawberries 1 ensure plus and half a pint of milk blend till thick. i love um.and then we go on to the dreadfull medication. im on ITRACONAZOLE ORAL.ACICLOVIR TABS,CIPROFLOXCIN TABS.LANSOPRAZOLE TABS. AND IS THR ANYONE IN THIS WONDERFULL EARTH THAT LIKES (ITRACONAZOLE)it must be the most disgusting thing im sick of it id rather chew on my brothers size 11 fishing boots.any way sory if i bored youide just thought id have a chat it helps to talk..ttfn

Well good news sort of, iv’e just received my appointment date to meet the team who will be doing my bone marrow transplant next year (if thy find a donor)im off to Kings College Hospital in London on the 17th dec next week infact.im abit nervous but positive all the time.well 99% of the time anyhow.A big thank you to all who have replyed to my original posting thank you for welcoming me so warmly.Merry Xmas and Happy New year.

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