Second month Moffitt visit

[Al's Wife]

First off, things are pretty much unchanged, we think. The platelets were 7,000 but the Moffitt doctor agreed with our local Emory doctor that as long as Al is not actively bleeding and is taking the Amicar (blood clotting agent) that they would not transfuse him, as the few platelet transfusions he's had in the past only helped for a day or so. We will get the results of the bone marrow biopsy next week and IF the blasts are not up, they will keep him on the Promacta trial.
The visit with Moffitt was a mixture of good and bad. I really like Moffitt's facility and I'm hoping that this was just one of those days where things didn't run exactly as they would have liked. We were there for labs at 6:45 a.m. and, UNFORTUNATELY, they had some new guys in training, I think, in the lab. Not only did they say, they could not find the tube for the clinical trial sample, but they had to stick Al several times to get a blood draw. He should have told them (and I'm thinking from now on I'm going to insist they let me go back there) to not stick him until they found the tube for the sample. But they told him, oh, we'll just stick you again later when we find the trial tube. UGH!!!
Then to top it off when he got into the bone marrow biopsy area, the computers had gone down and they had to write everything by hand - all the labels they stick on your chart, blood tubes, IV, etc. Still not enough problems - the lab calls and says, the CBC was messed up and they needed to draw another one. In all, Al ended up being stuck six times either because of a mess up or because they couldn't get his vein the first time. I don't know if he's becoming a "hard stick" or it was just incompetence.
The rest of the day went a lot better. We thought we were going to have about a four hour wait to see the doctor, but he had a cancellation and so we saw him right after Al woke up from the bone marrow biopsy.
And for anyone going to Moffitt for a bone marrow biopsy, Al (who absolutely dreads them because of a terrible experience with his first one almost three years ago) said the one he had at Moffitt was the easiest one ever (I think he's 8 or 9).
Moffitt uses Propofol (the drug that Michael Jackson died from) to put you to sleep rather than Versed which all the other places used. In fact at Moffitt the nurses call it the Michael Jackson drug. Anyhow, I'm glad it was a good experience for Al, especially since he has to have another bone marrow biopsy next month. We didn't need any more problems!
So for right now we're waiting on the results from the bone marrow. Ideally we're hoping the platelets will be up and the blast numbers down, but even stable would be good.
They also told me some things to look for in his weekly draws back here at home. There was an unclassified cell (whatever the heck that is) on one of the labs and they told me to keep a watch on that and if the number changes to let them know. Also if the peripheral blood shows blasts of 5 or higher to let them know ASAP.
Before we left Moffitt they gave us a new prescription for this coming week for the local blood draws. After getting home we realized that it was different from last month's. We contacted the new clinical trial coordinator (our original clinical trial coordinator left Moffitt last week) and told her of the discrepancy. It was Moffitt's error and now they have to rewrite the prescription before we go to get our local labs next Wednesday.
I guess this is one of the negatives of getting treatment out of State and trying to coordinate weekly labs locally. It puts a huge burden to be sure all the I's are dotted and the T's are crossed and you absolutely have to become your own advocate.
Since we've been home I've put a call in to Al's heart doctor to see if he would be a candidate for a port. Another forum member, Sally, says it has been wonderful for her husband, Don, nd I'm thinking we might need to check into that if the heart doctor agrees. At least we wouldn't have to worry about Al's getting stuck so many times.
So for now we're just trying to recover from our trip and take one day at a time. I really appreciate all the support we get from this forum.
Till later,

[PattiDean]

Oh Linda, it is so sad to hear about the problems you had while visiting Moffitt, as if you don't have enough to deal with already. 6:45 a.m. labs, so very early.

It is good news that you were able to see the doctor right away, you needed something to go right, that's for sure.

Hopefully with the new oncologist and working together with Moffitt, you and Al will now be able to concentrate on his health and taking care of his MDS.

Four weeks ago Dean was in the hospital, all of his counts were extremely low, his WBC was 0.3 and his platelets were 3. When Dean found out his diagnosis of MDS six weeks ago, his BMB showed blasts of 17%.

Four weeks later, after Dean's second cycle on Dacogen, his WBC and platelets are within the normal range. WBC 6.0 and PLTS 180, his blood work today.

We spoke to the nurse today that was taking care of Dean in the cancer center, she said Dean's oncologist works together with Moffitt, and he has sent some of his patients that were not improving to them for treatment. The nurse use to work for Moffitt and said they are the place you want to be when you are facing the challenges of this disease.

Thank you so much for taking the time to update everyone on your visit to Moffitt. I wish it would have been better. Dean and I will keep you and Al in our prayers, and especially pray that you will receive good news regarding the results of his BMB.

Dean had his PICC line removed last week, so he is getting poked like Al. His doctor wants a port for Dean within the next few weeks, definitely before his next cycle with Dacogen. We didn't think about asking Dean's cardiologist, fortunately he has a six month check up with his cardiologist next week, we will also ask him about the port.

You are always in our thoughts.

God Bless and lots of hugs are being sent to you and Al.