Thursday, May 29, 2008

Progression vs. Pseudoprogression

Well, today's MRI showed that something was there. The MRI from March showed a shocking lack of tumor, but this one showed something in the tumor bed that was not there before. It is about 1cm x1cm and the radiologist called it a progression of his original tumor (meaning that she thinks it's growing again). Our oncologists, however, were not so sure that this was true progression but rather it could be something they call pseudoprogression. Pseudoprogression looks and acts like a progressing tumor, but it is actually due to necrosis (death of cells) and other inflammation that is attributed to radiation and chemo. Pseudoprogression would remain stable in size and could eventually go away. It is often seen around this time after radiation, and the fact that the last MRI was so clean makes them suspect that this is pseudo even more. Joseph does not have any signs or symptoms due to the mass that is there, but this does not help in the diagnosis either way because pseudoprogressions can also cause symptoms.

So, our team is going to the tumor board next Wednesday (the group of radiologists, neurosurgeons, and oncologists) to discuss his case. It sounds weird and non-scientific, but they are going to come up with a consensus on whether to call this true progression or not. So we have to wait until next week to see what the other opinions are. Joe will continue to take his current meds until it is officially a true progression.

Obviously, we are rooting hard for a pseudoprogression diagnosis. Unfortunately the only way to know for sure is another biopsy, but that has not been discussed yet and I doubt they would recommend it. My best guess as to what the course of action will be is that they will have him continue Tarceva and then come back in 4 weeks for another MRI, but I'm guessing.

What does this mean for Joe? If it is pseudo, then he will continue Tarceva and we'll go on like we didn't go through this horrible day. If it is true progression then he will stop this trial and we will move on to a new one. We have some other trials already in mind if this should come up.

So we're in limbo for the next week and probably for the next month. Please pray for the meeting next week, that the diagnosis would be obvious to everyone. Please pray for strength and peace for us as we are feeling frustrated, angry, and helpless. And continue to pray for healing for Joseph.

After Joe had his port accessed (it took five people to hold him down) he was great and did not complain or cry too much. He actually hugged all his doctors and played a lot with Aunt Jennifer today while we were talking to the doctors. We even had time in today's schedule for a visit to the Children's Museum with Jen, WK, and her Nana. We will be coming home tomorrow after PT/OT appointments. Thanks for all your prayers.

34 comments:

Anonymous said...

sorry for such a difficult and frustrating day. Wish we could take some of your pain away. Praying.
Kissell's

Jody (atlanta) said...

I am praying for you all big time and for pseudoprogression. So sorry that the day was trying for you all, frustrating and leaving you with more questions. I thank you for taking the time to update us all with the specifics.

I am praying for all your requests and sending you strength and continued patience as you deal with the limbo.

Safe travels home...we miss you here in Atlanta. Abigail was saying extra prayers all this week for Joseph and cannot wait to visit in July. I love you Gillian...love all of you!

Anonymous said...

Sorry for your hard day. we're praying for pseudoprogression. love, karl and martha

courtney said...

How brave Joseph sounded today! I'm so sorry that this day brought the feelings and fears that it did. We are praying for all that you have asked for and that God would carry you mightily through this passing storm.

Much love to all of you-

Anonymous said...

Thanks for taking the time to write the update. It helped me understand a little more when I read what you wrote. I am, of course, like everyone praying for pseudoprogression. My heart is with you all and I ache that you had such a hard day. It was good to hear Joseph's sweet happy voice over the phone talking to his sister and telling her how much he missed her.
Don't tell Joseph, but Holly carried on a much longer conversation with Cinderella after she hung up with Joseph. I found her lying on the bed with one leg bent and the other leg over the bent one just talkng away on her play cell phone with the "princess". She had to take the phone to bed with her again tonight, just in case she needed to tell Cinderella some more gossip.
Holly has tried to drive the battery jeep a lot but she'd rather talk on the phone than keep her hands on the steering wheel. Big Daddy took her to the park today, and we went grocery shopping and shopped for flowers at several nurseries. Every where we went people commented on what a cute girl she is. I agreed with them!
Looking forward to seeing you tomorrow. Praying for rest tonight and strength tomorrow.
Love, Mimi & Big Daddy

Anonymous said...

We are so sorry that you all had such an unhappy day. Hoping with all our hearts that you will get good news next week.
love Ann Ben & the boys

Meg said...

I am so sorry to hear that the day did not go as well as hoped. I have not posted since the early days of the blog since we are not close friends or family, but I wanted to let you know that ever since Jennifer shared the news with us you have all been on our minds continuously. We're still here and still praying for a miracle!
Meg Bloomer and family
Orlando, FL

susan and brian said...

Thinking of you yesterday and today. Said a prayer to Liam and Emma to intervene.

Margaret said...

I can't imagine how difficult it is to be in limbo. We'll pray that the hope this offers is the true diagnosis.
Love and Prayers....

Anonymous said...

I can't imagine the frustration of the confusing results. I pray that it will be abundantly clear to everyone what the next steps will be.

Love to you guys,
Catherine Morris

Slotkins' said...

We're here for you and praying daily.
Sorry you have to wait a week for answers and that yesterday didn't turn out like we had hoped.
love you
beth, bj, and Yogi

Anonymous said...

Praying for you all and for wisdom for the doctors.

spear-britney said...

praying ..

carolyn & dave said...

I know this is not the news you wanted to hear. I pray you receive the Lord's comfort this week as you await the doctors final say. A righteous man's prayers are powerful and effective and I know you have many righteous people praying for you out there. Lord hear our prayers.

Love ya,
Carolyn

Wrights said...

we will be praying for the meeting and especially that it will be pseudoprogression. praying daily for peace for you all and for complete healing.
love,
the wrights

Christy said...

So much to carry. We love you all.

Brea said...

We continue to pray fervently for Joseph's healing, and will be praying for your peace as you deal with this uncertain news.

Anonymous said...

Praying hard for pseudo.

- Ange

Lizzi said...

So sorry it was such a terrible day. We're praying that the doctors, in their wisdom, would agree that it's pseudoprogression.

We miss you!

Love,
Tony & lizzi

Jean Joiner said...

We're praying for you guys. Sorry for a tough day. We'll be praying for the doctors and that they would have a consensus and that it would be the pseudoprogression.

We miss seeing you!
Love,
The Joiners (Allen, Jean, Everett & Camille)

Anonymous said...

Hate that you had such a horrible day yesterday. Hoping and praying that today is better. Know that we will be praying for the meeting next week and the upcoming MRI. Thankful that you all will be together this weekend in Franklin. Love to all- Mel

Pomeroy Kinsey said...
This comment has been removed by the author.
Anonymous said...

This is so disappointing to hear. Paige, me and our family will pray daily for this til we hear about whether it's a progression or not. I'm so sorry you have to go through this next seven days without knowing.

scott cunningham

Craig and Gwen said...

Praying for you guys!

Gwen

Anonymous said...

Praying for you guys and thinking about you all of the time.

-Christie

trmills said...

So hard to have ambiguity. We'll pray for health for Joseph and grace and peace as you wait. So wish we could do even more.

Lynn T said...

I'm thinking of you all the time. See you very soon. Continuing to pray for peace and for all your requests.
Love you, Lynn

notes from em said...

will will continue to fight for Joseph in our prayers.
we are loving you from across the state.

Q's NEWS said...

I am going to believe in and pray for pseudoprogression. I really feel like that is what the spot is. It breaks my heart to hear that it took 5 people to hold down your precious son, I can only imagine how hard that was for you.

I love the "Cars" car - it is so cool. Joe P. looks like a natural driver and he is growing so much!!

I will be awaiting the good news so post it as soon as you get it, ok?

Love from WV,
Susan

Allison & Jeff said...

We're praying very hard for a clear pseudoprogression diagnosis and looking forward to the update.

sj said...

sorry for such a hard day. I really wish I was there with you. I can't believe he was so strong that it took 5 people to hold him down. Poor guy. I miss him a lot. It was so nice when he was here and having so much fun playing with everyone. Praying for years more of those visits.
love you guys.

Jane said...

We stay in prayer for Joseph and all of you - especially this week for the Wednesday meeting, that God will give clarity and wisdom to the team, peace to all of you, and continued healing to Joseph. It has been a joy to see Joseph playing at Mimi and Big Daddy's house next door. We were thrilled he and Holly came over to play in the "Pirate Ship" a couple weeks ago. It is a blessing to hear how God's faithful are fervently standing with you in prayer. You are a covered family! Blessings... Jane Williams

Anna Tester said...

Love you all! xxxooo! anna and the tester gang

Carrigan Family said...

Praying in agreement with you for pseudoprogression - so hard for you guys - I know it is so hard to live in the moment - watching the kids just keep going on - trying to "enjoy" them with all of that constantly running through your mind at all times. Praying for some relief from all of that as well.