mammos were ok! whew! thought I would check and see how everyone is doing. have a great holiday weekend!

Happy Day!!!!!!!!!! You have enough to deal with right now.

Hi, I'm new to the site. My mum (aged 78) was diagnosed in March10 and is always very tired and weak. She has poor appetite and seems to leap from one infection to another. She has had several blood transfusions but they don't make any difference, apart from causing bruising and swollen ankles. I just don't know what to do to help, I want to talk about other things than her syndrome, but it seems to control our lives. My dad (aged 80) is her main carer and I worry about him too. I do what I can, but I just want my 'old'mum back. I just need a little support, I hope this doesn't make me sound selfish.

hi hon and welcome to the forum. My dad was diagnosed about the same time as your mom. Dad all but stopped eating and went downhill very fast. When he finally started eating again he got much better. He is transfusion dependent now and has been since before his dx. Come here and lean on us hon. We are in this together.

See if you can get her to eat maybe her favorite foods. Get her some ensure and vitamins to take too. D as I understand it is really good for mds patients.

Vitamin D made a big difference in appetite and weight loss seemed to stabilize........could have been coincidental but whatever it helped. It is challenging to try to introduce other subjects or interests but you need to keep doing things to keep up your spirits and things with your dad if he will. We have been married 43 years and he tells me he is on a dead end street, no interests, no visits, no drives..........some days realllyl gets me down. Stick with this support system, they have been where you are.

Thanks for the support and advice about vitamin D. Mum is back at the hospital today to see consultant and the dietician. I will pass on the info about the vitamins when I see her this evening. Thanks again.

Transfusion #6 today and though he feels slightly improved he is just so tired of feeling tired and weak and listless and wants the OFF button. Hemotologist wants him to do chemo-which would make him MORE tired. This is a dilemma.

good luck with that hon. keep us posted. Dad seems pretty stable at the moment. dr said that as long as he doesn't need plts he will live awhile longer! woo hoo!

I am a care giver for my husband. I have just found this site tonight and I feel so much better already. My husband has mds and he is having 2 units of blood a fortnight also exjade for the iron overload They are not talking about any other form of treatment at this time So we are encouraged to feel optimistic about the future. We have to live each day fully and hope for a cure.

Dear Lynet,
How old is your husband? Did the doctors try the injections to help his body increase his red cell count before going with blood transfusions only? Sorry for these questions. From everything I know, if someone with MDS will respond to Aranesp or one of the other injections, that's preferable to the blood transfusions.
Sherry

My husband is 66 and he has not had any other treatment other than blood transfusions and exjade. He started with low white cells 6 years ago and progressed to mds this year. Started blood tranfusions in March and exjade in August. After dental treatment he started with extreme night sweats but his specialist does not see any conection. Are awaiting results from bmb. I am trying to be as optimistic as I can but when nobody has any answers am finding it a wee bit difficult. Keep the faith. Thank you for replying

HI Lynet, I to have a husband with MDS, I thought it was the end of the world, he has had it since Oct. of 08, has had blood work go up and down, 3 times they were ready to start chemo and then the counts went up, the last time we thought sure this is it....they took a blood test and the counts were up so again we are sitting on pins and needles every month when he has a blood test, so far so good.
He is 75 and very active, always doing something, loves to garden and do yard work, has chickens, and beef cows to take care of. So I understand what you are going through...at first I did all the research, and the more I read the more scared I got. I thought he only had 2 or 3 years to live and then what would I do....well, he is still here and still seems healthy, so I guess we just take one day at a time and hope for the best and that is all we can do....Hope this helps to know that I am out there and will be following your entries....Janet

thankyou Janet for your encouraging post sometimes I feel very alone indeed. My husband was firdt diagnosed 5 years ago with low white cell he had no treatment as he needed none, until this year, in April he started to need blood transfusions, then exjade. When hestarted to have severe nightsweats and pain in bones another bone marrowbiopsy showed 20% blasts so now his specialist has suggested either some form of chemo ,a vidasa trial or another trial with ienalidomide which ever is available when his condition calls for it, he believes it will be before xmas. So here we are now at this point, not reallyknowing what to expect next. Thankyou again for your post. Keep the faith.

Dad stated yesterday to his grandsons and me that he feels his body has changed. He knows it won't be long. I have noticed changes the last couple of weeks myself but to know that he knows this is so hard. My daughter is pregnant and he told her good luck with your baby. She isn't due til April 1st. He is weak dispite getting 5 units of blood in a week. please keep us in your prayers.

My prayers are with you, I know how hard it is to watch a parent die, my mother died in Jan. I sat beside her bed for a week, and held her hand while she slowing slipped away...something I will never forget, or regret. I slept in a chair and was there when she needed something. Now I am wondering if my husband will be next and how soon...Four years ago my grandson was killed in an ATV accident, at age 17..That was the hardest thing to go through and I lived through that so I guess I can handle almost anything. Thinking of you....Janet