[katiebear]

Nicole,

From all I can read, I think you’re right. Reaction to DLI is best when in remission. My dad said yesterday that Legionaire’s Disease is floating around the hospital and nobody can shower or drink the tap water. Hopefully that won’t become an issue for him.

Jen, I’m going to bring up Columbia and those doctors to my dad and see what he says. I know he trusts his doctors at Sloan. I hope he will take the advice. I know the window for opportunity is very small with this disease, and if he doesn’t respond in some way to this chemo, I can’t imagine what will happen. Thank you very much.

Katie

[katiebear]

Nicole,

I don’t have too much more info. I do know that his blasts are over 60%. He was admitted into the hospital on Thursday. He is very frustrated as his doc told him he would only be in 3 or 4 days for chemo. He was told yesterday that it will be more like 4 to 6 weeks. They have him on dacogen for 5 days. Not sure of the dosage. I know that he is more tired than he’s ever been, and he is seriously thinking about leaving the hospital and quitting. He is sick of this. There was talk of donor lymphocyte infusion initially, and I don’t know what happened to doing that. I know they have to go back to his donor in Europe to do that and I think time might be a factor. Thank you for asking about us. We are holding up. I hope you are well.

Katie

[katiebear]

Well, my dad has relapsed. I don’t have many details other than there are blasts in his blood already. His doctor mentioned doing a DLI. I don’t have much info at this point because I couldn’t find the words to ask my dad. Thank you for listening.

Katie

[katiebear]

Good luck Jack. My thoughts and prayers are with you and your wife no matter which choice you make. I’m sure you will make the right one.

Katie

[katiebear]

My dad is going for his 100 day BMB post SCT tomorrow. Please pray. Everything seems to be alright except his counts being a little slow coming back. This is just a little unnerving, especially after having a slight reprieve.

[katiebear]

Jen,

My dad was on the 8th floor for his transplant. Prior to that though, he spent months on the 12th floor getting into remission. You are definately right about the nurses, they were absolutely wonderful to my dad and us. The 8th floor paled in comparison. I will continue to keep you in my prayers. I hope your dad does well at MD Anderson.

Love,
Katie

[katiebear]

Hi Jen,

I’m sorry to hear about your dad. My dad just had a SCT at Sloan on July 19th. So far so good for him, with a few minor setbacks. Who is your dad’s doctor at Sloane? I will put you guys in my prayers. This disease sucks.

Katie

[katiebear]

My dad went for a checkup yesterday. He needed another shot of neupogen yesterday. His doc says that his whites are low because of the antibiotics he is on for CMV. He lost a little more weight also. The doc was not happy about that. So far though, things are good. Thank you everybody again for your prayers. They are working.

Katie

[katiebear]

I’m so sorry, Terri. Please know you are in my prayers.

Katie

[katiebear]

I’m sorry Pigduck, I don’t know anything about fibrosis in the marrow. I just wanted to let you know that I follow your posts, and keep you and your dad in my prayers.

Katie

[katiebear]

My dad was discharged yesterday morning. His thirty day BMB shows no evidence of disease. We are very happy. Thanks for all your support.

Katie

[katiebear]

Hi Nicole,

My dad is starting to feel down. He’s still in the hospital since being readmitted last Monday. He runs a fever every day. Not all day, but it’s still there. The transplant team came around yesterday and they told him they are baffled. They cannot find the source of his fever. He’s not eating enough either. He is drinking milk and ensure, but hardly anything solid. He is on Cipro, and another medicine for retinitis. He has no symptoms of retinitis, he says it’s precautionary. Last Sunday they informed us that one of his tests came back positive for CMV. Only traces though, so they wanted to rerun it. I have asked my dad every day if it came back positive again, and he doesn’t know. I know that virus can cause retinitis, but he’s not on the anibiotic that is normally given for it. He is beginning to think he might not ever get out of the hospital, and that worries me. Please keep praying, and thank you for thinking about us.

Love,
Katie

[katiebear]

Thanks for the prayers and positive thoughts. My dad is still in the hospital running a fever. It is not constant, it comes and goes. His doctors are playing around with the antibiotics trying to get the fever to go away. He has had every kind of test known and they still can’t pinpoint why. The doctors also said that this is very common in transplant patients. Sometimes they never find the origin. He also has a rash on his face which started yesterday morning when I got there and got worse as I visited into the evening. I also noticed his nail beds and the tips of some of his fingers are yellow. Not just kinda yellow, but yellow almost like a crayon. Of course I noticed this after the doctors made rounds. I questioned the nurse who doesn’t think it’s jaundice but maybe from smoking. That seems assanine to me as he hasn’t smoked in 25 years. That’s it for now. Thanks everybody for their kindness.

Katie

[katiebear]

Maureen,

I’m very sorry to hear the news. Please know you are in my prayers.

Katie

[katiebear]

My dad is 28 days post transplant. He had a mini. He is 66 years old.

[Author]

Posts