Quote:
Originally Posted by PattiDean
Bob and Dru, so sad to read your post. August 5th has to feel so very far away right now. How far is Johns Hopkins from your home?
Dean had been on Revlimid last year, but unfortunately he had to be taken off of it. Thankfully his body began to respond to Dacogen, and he did good until last month, when like you, all his counts began to drop.
We have an appointment with Moffitt Cancer Center in Tampa on Tuesday. Dean wants to have hope that they will be able to help him, like you he hopes they have some "magic". Dean's oncologist in Clearwater basically said he didn't have any more options, which is why he referred Dean to Moffitt.
Dean's blasts are now 15%, which is what they were when he first found out he had MDS, but they had dropped below 5% while on Dacogen. On Monday we receive the chromosome report, before going to Moffitt on Tuesday.
Dean's counts were fairly stable on Thursday, they increased after his transfusions last Friday. In addition to the transfusion of PRBC and platelets, Dean has been receiving an injection of Procrit over the last three weeks.
WBC 1.9
ANC 0.5
RBC 2.97
Hgb 9.7
PLT 21
Dean will have labs again on Monday, praying they haven't dropped. Like Dean, your counts are real low, even lower, but sometimes still not low enough for transfusions. They wait until Dean's platelets are 10 or below, and his hemoglobin below 8.0, by then Dean doesn't even have enough energy to stand up.
Dean is so very weak and short of breath, he also isn't eating very much, now weighs less than 160 lbs. He is 6 feet tall, and his normal weight was always around 180. He has bruises up and down his arms.
This week Dean has been very down, he keeps telling me how afraid he is and how hard he has been fighting, he doesn't know if he has the strength to continue. I have been saying so many prayers that he will receive good news when we visit Moffitt, he needs that right now.
You both have gone through and are going through so very much with this disease. So many of our friends and family had never heard of it, and had no idea how awful it can be.
We will let you know what they tell us at Moffitt. Will you be having anymore blood work before your appointment at Johns Hopkins?
Bob, we will keep you and Dru in our thoughts and prayers down here. We also send you both our love and we will keep believing in "magic"!
Love, hugs, faith, hope and prayers always, Patti and Dean
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Patti, we are happy that Dean is going to Moffitt, they have a great team that
specializes in MDS.
We pray that God removes Dean's fears and gives him the strength to face each day. When we are weak, and short of breath it does scare us, and like Dean our ages of 76 adds to our struggles.
Our drive to Johns Hopkins is a only a 90 minute drive; our daughter Beth will be arriving on Friday from Hartford, Ct. and will drive us to the hospital next Monday.
I am scheduled for a CBC on Wednesday and hoping the counts have improved to where I won't have the need for any transfusions.
Our very best and strong thoughts and prayers to you and Dean, and tell him that we need to hang in there together.
Dru and Bob