Millie you and Joe are lifted up in prayer....how's he doing ?

Millie you and Joe are lifted up in prayer....how's he doing ?

Thank you for the prayers. They are always welcome.

Joe was in the hospital from Monday - Wednesday due to a UTI and the ever-present anemia. He was drinking (not wine, that was me), maybe not enough, but not urinating other than drops - way too much info. I know. Anyway Hgb was 8.1 on Monday. After 3 units of packed red cells, he is up to 9.4. Third round of Vidaza starts Tuesday.

He is going for antibiotic infusions from today through Saturday. But his confusion has passed (I have been told UTI causes confusion) and we are doing OK. Hope everyone is hanging in there. This really is exhausting both mentally and physically.
Keep a good thought.
Millie

Millie glad to hear Joe is better.
Cat

Hope everyone has a great week

My Mother has MDS. She has had it for a few years. According to her last doctor, hers was a type that did not develop to leukemia. She recently entered a study with Ruvlimid. She is having terrible side effects and the 19th day of a 21 day dose.
Does anyone have any experience with this drug?

Joe has been feeling great but today, after his weekly CBC, we find out that his platelet count is 29. He is having a platelet transfusion tomorrow. Does anyone know if this is normal with Vidaza? He is supposed to start his 4th round next Tuesday.

with my dad they would not start plt transfusions until he went under 15. good luck!

Hi everyone, I hope you and yours are doing well. I think of all of you often. We've been working over at Mom's every week for over two mos. now. Hard to do, sifting thru her things, having garage sales, taking stuff home. I felt very sad yesterday and today missing her.

Millie, I'm glad Joe is hanging in there. Mom's counts always went down during chemo. They say they go down before they can come back up. Mom had her platelet transfusions occasionally, We called it her OJ, because it looks like orange juice! There never seemed to be a magic number, of course, her numbers were always low. When we first started treatment her platelets were in the 30-40 range.

He'll really get a rush of energy and feeling better with the platelet transfusion. Maybe he'll be chasing you around like someone said. I hope his treatment helps.

Tecia, how is your Mom?? I tried to give blood twice in the last two weeks and darn my number was too low the first week and then the 2nd week the blood stopped in the middle of the donation. (They said my platelets were making it clot!) Ha, I guess I have good platelets. Hugs to all.

it is tough to go thru their things. my stepmom has done some of my dads but there are sheds all over the property we need to get to but I am not able to do it right now. just had shoulder surgery last month so it leaves me useless. good to see you posting. coming up on a year for my dad now and it still hurts. miss him like crazy!

Has anyone heard from MIllie?? How is Joe??

Hi All,
Thanks for thinking of Joe and me. I used to get an email saying someone had commented on my comment but that doesn't happen anymore. Anyway, Joe had his platelet transfusion a week ago Tues. This Tues. the doctor said he felt if he started his 4th go round of Vidaza, his platelets would nosedive since count did not come up as much as hoped. He is having a BMB (finally caught on to the abbreviations) next Tues. and if numbers are good, he will start the Vidaza. He is wondering if Vidaza is working hence the BMB. If not, Dacogen or something else he mentioned will be started. We are heading to Moffitt (thanks again Cat) the middle of April to the MDS guru there. Joe is feeling so well we actually booked a junket to Tunica for Joe's 78th birthday. I had to cancel awaiting these new developments. Oh, and he bowled today. First time since October. We are keeping our fingers crossed that he continues feeling well. Hope all of you guys are doing well.

Joe's BMB results are very encouraging. He has 7q deletion (not a good thing). October's report showed 86% of the cells were abnormal. March's report shows 29% abnormal (5.2% is normal). He is feeling terrific. Started 4th round of Vidaza yesterday. We are going on a 4 day break starting Monday but only if the CBC
which will be done on Friday is OK. Hope everyone has a peaceful and healthy Holiday. Prayers are always welcome.

Just joined this group. I am the caregiver for my DH, who has had MDS since 1999. He developed a tumor along his spine four years ago. Doc said it was no problem, but has recently been giving him trouble. Tomorrow we go for scans. As MDS often turns into Myeloma (which is what killed his father) I am quite worried. He has multiple other problems (including Myasthenia Gravis), which I will note in the journal eventually. Just signed on here for a few strong shoulders to lean on. Janni

welcome to the group Janni! sorry you have to be here but glad you found us. Lean on us all you want hon. ((((hugs))))