March 29, 2010

So Very Thankful

We didn't have much luck tracking down the fill-in oncologist that my dad saw earlier this month, but on Friday a friend of mine who has connections in the medical world was able to help find another oncologist for my dad. (I don't know why I didn't think to ask her for help sooner.)

The new oncologist is about 1.5 hours away from where my dad lives. He had an opening for an appointment this afternoon, so my dad's wife spent Friday scrambling to get copies of all of my dad's medical records. (Another good argument for always getting a copy of your most recent records every time you go to the doctor, a lesson I've learned through these many years of IF.)

So they drove down to see the new onc today, and the appointment went well. Really, really well. I'm so incredibly thankful.

First, there's some amazing news that I didn't really go into during my last post. And the details of it are still a little fuzzy, since I didn't actually get to speak with the doctor myself. But, basically, the fill-in oncologist Dad saw earlier this month and the oncologist today think that he doesn't currently have leukemia!

Last spring when Dad was first diagnosed, a bone marrow biopsy showed 51% of his blood cells were "blasts", which are immature cells, i.e. leukemia cells. He had another BMB after his one round of chemo at the fancy schmancy medical center 4 hours from his house, and that showed 6% blasts. I don't think he's had another BMB until this month, and this month's showed 5% blasts. Basically, 20% or more is considered leukemia, 5% or less is considered normal, and I guess 6-19% is a gray area that is considered to be progressing to leukemia.

On the other hand, it's not that the doctors have said "Congratulations, you're 100% normal and healthy now!" The fill-in onc, at his one appointment with my dad and without the benefit of the results of all the tests he ordered, thought Dad might have a very rare blood disease called parox.ysmal noctu.rnal hemogl.obinuria. Today's onc, having the benefit of those test results in front of him, thinks that Dad has my.elodysplast.ic syndrome. Both of those have a 30% chance of progressing to the type of leukemia Dad was diagnosed with, and M.DS is still considered to be a form of blood cancer from what I gather in the quick research I've done online tonight. But both of those diseases can be managed, people can live for years with them, and a lot of people who have them don't die from them. So, again, very, very thankful.

The other great news is that today's onc got right on dad's transfusion issue. The iron chelator drug has already been ordered and should arrive by Thursday, and a blood transfusion has been arranged for Wednesday. Ideally he could have used it now given where his blood levels were at today, but I'm guessing perhaps the onc wanted to wait until it's closer to the time the chelator will arrive in order to try to minimize the amount of organ damage from excess iron, since Dad's now at the point where that is a concern.

I think there are also possibly some other drugs he can be given to try to address the M.DS more directly, but he and his wife didn't discuss the details of that when I talked to them tonight. I think we're all just taking a day or so to be grateful about the fact that this doctor didn't tell him to just go home and die; I'll ask them for details about the M.DS drugs sometime during the next few days.

Thank you for all of your thoughts and prayers.


Grad3 said...

It's the best news that you can expect in a situation like yours. S glad :)

Hopeful Mother said...

Praying for continued good news for your dad.

MrsSpock said...

I had an ICU patient once who had lived with MDS for 18 years before it developed into leukemia. I hope your Dad's levels stay low and manageable for years to come...The new onco sounds like a keeper.

Nic said...

I am so so glad your dad got in to see someone else so quickly, and that he got right on the transfusion issue. AND the good news on his blood composition!

Jericho said...

I'm glad you got some good news. Hope you have a wonderful weekend

Jan said...

That is brilliant news - I'm so pleased!

lastchanceivf said...

I'm so sorry I am so late to this--how did I miss it??

It's such wonderful news!!! So happy for you BOTH :)

Meg. said...


I have been meaning to stop by your blog and comment after all the lovely, supportive comments you've left on mine (I SITLL may hit you up for self-claim advice! Ack!). Just....THANK YOU so much for your support. *hugs*

Also, what a relief about your dad! I really like the sound of this latest update. I hope his health holds steady indefinitely!

Have a great weekend!