An unexpected development
The GVHD test for the gut was redone in the past week and the GI team concluded that there was no GVHD. Good news.
My infection seems to have finally cleared several days ago and my temperatures were once again normal. Good news.
After finally getting to a Blue Shield case manager (who is great), Reena managed to push through approval for DLI. More good news.
By some strange intuition, my inpatient doctor, Dr. Anderson, suggested that we do a bone marrow biopsy yesterday before doing DLI (a one-shot treatment) today. Given the previous 2.3% result, we were all very confident that the Sutent was working and were betting the new result would show that there were only 0.5% blast cells present in my marrow. In fact, the mood during the biopsy was jovial and almost a bit carefree.
The results came in today. I have 31% blast cells in my marrow. Very, very surprising news.
The only explanation (backed up by an MRI done for another reason) is that my leukemia is growing back in pockets. So the last biopsy, the one with the magical result, must have not drawn marrow from one of those leukemic pockets. Also, the sutent is not working - it didn’t turn out to be the silver bullet we’d hoped for. All of this is unfortunate and certainly not what we were hoping for. But God doesn’t always give us a result we want when we want it. Perhaps he wants me to prove that I am a true fighter no matter what I’m faced with.
Putting the past behind, the plan forward is to use Mylotarg, a very targeted chemotherapy. Mylotarg’s function is essentially to bind to the CD33 protein on leukemic cells and kill those cells in one of four ways. I don’t remember all of the methods by which it works, but I do remember that one involves mylotarg literally poking a hole to kill it. The mylotarg option is only available to us because my bad cells have the CD33 protein that mylotarg.
Mylotarg has a 30% chance of getting me full remission. Unfortunately, the medical team cannot give me the full dosage since I have had TBI (total body irradiation) as part of my pre-transplant regimen. A full dose would put me at risk of liver failure. But we’ll work with what we have and make the best of it, right? :) If mylotarg doesn’t work over the next 14 days, I may receive another dose or the team may explore chemo options that have some chance of getting me back in remission so that we can do the DLI.
Thank God Dr. Anderson had the presence of mind to do a bone marrow biopsy prior to using up our DLI cells. I’m still in the hospital and will be here at least through the weekend. The mylotarg bag has just been hung; let’s pray for the best. Whatever happens in the end is God’s wish regardless.
I’m very grateful for all of your love and prayers. They are still overwhelming for me - in a good way, of course - and sustain the strong fighter in me. With all my love, Sameer.
January 25th, 2008 at 12:06 am
Sameer,
Jai Siya Ram
Hang in there. Its a roller coaster ride. But you know how all the roller coaster rides end - you get to walk away with a smile on your face!! Well…some of us throw up, but that’s fun too!! You and yours are in our thoughts and prayers daily.
Fight on…
Tarak
January 25th, 2008 at 7:23 am
We are all with you during this journey. We will stand with you during the hard days and celebrate the victories together. Stay strong!
January 25th, 2008 at 9:41 am
Sameer,
I am not sure who said this but I am a strong believer in this -
” Life’s battles don’t always go To the stronger or faster man;
But, sooner or later, the man who wins Is the fellow who thinks he can.”
You have been an epitome of strength and courage and an example to follow .
YOU WILL EMERGE A WINNER !
-Jyothika
January 25th, 2008 at 9:49 am
Dear Sameer,
Here is a good health prayer.
OHM ACHUTHANANDHA GOVINDHA VISHNO NARAYANA AMRUTHA,
ROHAN MEI NASAYA ASESHAN ASU DANVANTHARE HARE,
DANVANTHARE HARE VISHNO NARAYANA NAMOSTHUTHE,
KRURAKGRAHAIHE PEEDITHANAM BAKHTHANAM ABAYAPPRADHAM,
SREEN RUSIMHUM MAHAVEERAM NAMAMI,
RINAMUKTHAYE.
With best wishes.
God bless.
Love,
Villivalam Vasan.
January 25th, 2008 at 10:03 am
Our prayers are with you during this bad ride.
January 25th, 2008 at 10:27 am
Dear Sameer and Reena,
I do share a different faith, however I do pray for you everyday. Miracles do happen and I pray for your quick healing as it says in the Bible.
PRAYER FOR HEALING !
Isaiah 58:8
Then your light will break forth like the dawn,
and your healing will quickly appear;
then your righteousness will go before you,
and the glory of the Lord will be your rear guard.
January 25th, 2008 at 12:34 pm
Sameer,
We’re confident that you’ll fight through this.
Here are a couple of quotes from one of the greatest champions of cancer research, Coach Jim Valvano:
“To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, and you cry, that’s a full day. That’s a heck of a day. You do that seven days a week, you’re going to have something special.”
“I asked a ref if he could give me a technical foul for thinking bad things about him. He said, of course not. I said, well, I think you stink. And he gave me a technical. You can’t trust em.”
Love,
Umang and Shefali
January 25th, 2008 at 12:42 pm
I feel so great so seeing the better explanation in your prayers. please be positive and patient. God will definitely show up at some point. I do accept you as a great fighter and keep it up
January 25th, 2008 at 4:22 pm
Hello again Sameer, I pray with all my heart that you can get WELL soon. Stay strong, eat healthy, and drink as much water as you can! I will continue praying for you and your family. I hope you are back on ur feet in no time!
January 25th, 2008 at 5:15 pm
Hi Sameer,
Keeping you in our prayers today and everyday. I can imagine what you and your family are going through. Just hang in there and stay strong. The power of positive thinking has amazing results.
esha’s mom
http://esha-gandham.blogspot.com/
January 25th, 2008 at 9:54 pm
you are amazing
January 25th, 2008 at 10:52 pm
Dear Sameer and Reena,
Stay strong and keep the faith and positive spirit!! You’re beginning to sound so much like a doctor… perhaps this is god’s way of inspiring you to go to medical school when all of this is over??
Kidding aside, stay strong and positive. Everyone is praying for your recovery. You have too much strength in you to let this get in the way!
January 26th, 2008 at 7:46 am
Sameer,
Please hang in there with the positive attitude. You are in our prayers constantly. Be brave and leave it to God, He will take care of everything. You are doing your best, truly a great fighter.
January 26th, 2008 at 12:40 pm
Sameer, I have been so impressed with your attitude. You embody the best in all of us. You and your family are in all our prayers. Prabha
January 26th, 2008 at 2:44 pm
Hi Sameer — We are thinking about you and wish you all the best, and look forward to your upcoming triumph dance.
Anoop & Aparna
January 26th, 2008 at 5:51 pm
Dear Reena and Sameer-
You will get thru this slight detour in the yellow brick road.
You need to keep the faith and turn to the powers above.
Please look at the powerful turkish evil eye “Nazar Boncugu” for protection.
Hari OM
January 26th, 2008 at 10:31 pm
Good luck…your attitude is amazing…God WILL help such a great guy like you!
January 27th, 2008 at 7:59 pm
THANK YOU AGAIN FOR ALL YOUR LOVE AND SUPPORT.WE SHALL OVERCOME!!!!!
January 28th, 2008 at 6:57 am
Sameer,
God has a peculiar habit of playing with people he likes the most. We all pray for you and I am damn sure that you will go into remission sooner than expected. Cheer up.
January 28th, 2008 at 9:39 am
Hi Sameer,
I’m not sure if you know who I am but I am Dayal’s friend Annie from Chicago. I just wanted to leave you a note that there are so many people out here (people you may not even know) who are praying for you. You have a big team rooting for you! Your attitude and strength are amazing and inspiring. We hope and pray for the best. Good luck with everything. You are in our hearts and prayers.
January 28th, 2008 at 10:52 am
Sameer-
Your strength continues to amaze me. You are truly inspirational! I have not doubt you will make it through these setbacks.
You are in all of our thoughts and prayers!
Bimal
January 28th, 2008 at 6:46 pm
Sameer and Reena,
You don’t know me but your story has inspired me and I know a million other people like me! I have faith that you will come out of this and lead a normal life soon. My prayers are with you. Goodluck and keep up the attitude.