[julielucas]

Hi Y'all,
I haven't posted in a long time but I read this forum every day. I've tried comparing others experiences with my husband but as every one has said " no MDS patients are alike". Let me recap my husband's condition:
Jeff is 68, dx with Chronic Lymphocytic Leukemia (CLL) in 2007, chemo in 2008, complete remission until 2014. Treated with ATG in 2010 for thrombocytopenia. He was seen at the cancer clinic every 6 months and things were going well until May 2014. His blood levels indicated the need for a BMB which showed MDS. He is RAEB-1 with 5% blasts in June. The MDS is very likely due to his previous chemo. Started Vidaza, went through 6 cycles with no improvement. BMB in Nov showed pancytopenia but blasts were down to 1%. He had one round of Dacogen in Dec but missed his second cycle because he was hospitalized from Dec 27 until Jan 1, 2015. He had fever of 103 and was treated with IV antibiotics 3x / day for 4 days.
He's home now but is so very weak! He went from needing transfusions once a month to now every week. His WBC are 0.5, platelets 14 and Hb drops to 7 about 3 days after transfusion. He's lost a lot weight in the past month ~ 20 lbs. He has mouth sores, bad teeth and no appetite. He still runs fever but can control it with Tylenol ( bad for platelets), and cool showers. He's on oral antibiotic and acyclovir. He has an appt with his oncologist tomorrow and I'm hoping his blood counts are good enough to resume the Dacogen.
I have many questions and hope y'all can help.
Mouth sores: He's used magic mouthwash, salt water and acyclovir to no avail. He has a real big one on his cheek that refuses to shrink. I read about a new rinse called "HEALIOS" that is a glutamine base and is supposed to be really good. Have any of you tried it?
Night Sweats: It happens every night since June. I've tried putting a waterproof pad under him, but does anyone have any hints on making the bed so we can avoid having to remake the bed every 4 hrs?
Lack of appetite: The mouth sores and bad teeth make it hard for him to eat. He has a few broken molars and some empty spaces where he's had teeth pulled. We're trying a soft diet, almost liquid. He likes to drink a product called "Muscle Milk". It's high protein, lactose free and yummy! But there's got to be something else to add for variety. Any tips would be greatly appreciated. The hospitalist suggested we go back to Duke and consult with an oral surgeon to extract those bad teeth. He's not been able to have any dental work done due to low platelets for the past 4 years!
Now for my last, really tough question: is this the beginning of the end? After reading through these forums it seems to me that Jeff's health has slipped very rapidly: lower blood counts, neutropenic fevers, more frequent transfusions and possible reaction to platelets.
Jeff is not a good candidate for SCT nor does he want to go through one. He'd rather spend what time he has left being with his family, reading and teaching (if he has the strength).
Thank you all! I hope everyone is in good spirits and is fighting the good fight!