My MD Visit and my visit with Gregg Belnap - List member

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Hi all. After a very long day I returned from MD last

evening around 1 AM. All is all it was a good visit. And I got to

see Gregg Belnap! As many of you may know, Gregg is currently

undergoing a transplant at MDA. He was dx with both CML and AML and

headed to transplant sometime in April. He is currently in an

outpatient Ambulatory Transfusion Center - getting his IV supplements

daily and that is where we visited. I told him that everyone is

continuing to pray for him and we all keep in him our thoughts.

Gregg is doing quite well! He looks great and had just gotten some

dinner when I saw him so he's eating again! He had a recent BMB but

no results as of yet. Hopefully he'll be getting GREAT results. He

is a real trooper. And he so much appreciates the prayers and

thoughts!

As for my visit, it was good. My bmb was a little bit difficult. I

must have gotten someone in training . . . Yikes. She couldn't get

the needle into the bone after a LONG time. I started to get

nauseous and thought I was going to faint. It was probably just

anxiety. When the girl couldn't get into the bone, another lady came

in to the room and finished the biopsy. I am sore to say the least

but all in all they did a good job.

For those of you who go to MD and have the priviledge of

having Jensie do your bmbs, you are in for a surprise. I went with

full expectations that she'd be doing my bmb and I was looking

forward to seeing her. However, she retired in April! You can

imagine my disappointment (Although it's great she was able to retire

and enjoy life). For those of you who do know Jensie, she has magic

hands and MD won't be the same without her special touch and

spirit.

Dr. Giles and I had a good discussion. I broached the subject of

adding some PEG interferon to my mix but he nixed that immediately.

We did talk a little about the AMN trial and should I need that, I

could move over to that if I find myself needing to. As I said to

him, my current logic is 'If it ain't broke, don't fix it'. So

hopefully I will remain on a stable path.

I also spoke to Dr. DeLima - the transplant specialist - as well as

my leukemia specialist about doing a 'Harvest and Hold' (Sounds

like 'cheeseburga - cheeseburga') After much thought and

intrepidation - and after LOTS of questions about the use of GCSF - I

will likely be doing the harvest in early to mid July. I'll continue

to keep you all posted on the direction I head. Their thoughts were

that this couldn't hurt and is only an additional insurance policy

to 'turn the clock back' if I ever needed it. My biggest concern

is the GCSF and it's potential of bringing the quiescent cells out of

their 'slumber'. Dr. DeLima said that to date he has not had any

problems with this but of course said there is a first time for

everything but the risk is relatively minimal. All in all, this is

my difficult decision to make and I'd love to hear from my CML Family

regarding your thoughts on this.

Again, it was a good but quick visit. I am exhausted from doing it

in two days. I guess I just don't have the energy I once have!

Visiting Gregg was truly an honor and I know he so much appreciates

all the prayers and good wishes.

Hope this finds you all doing well. You all remain in my thoughts!

Sending hugs and love,

Barbara Heathcote