Changing lanes, changing minds - hang on for the ride!
According to my Jan 8th GI biopsy, I definitely had GVHD of the gut. So no DLI.
According to my Jan 18th GI biopsy, GVHD didn’t seem likely. So DLI was back on….well, except for the 31% blast cells that stopped us anyway.
According to Dr. MacDonald, another GI specialist, the fact that I am still having stomach/rectal issues on Jan 28th means that I do definitely have GVHD of my entire gut (including the 20 ft of intestines we have coiled up in there). His analysis - and he’s been doing this for 30 years as have his two other colleagues - is that my entire stomach, intestine, colon, gut, and rectum are swollen and not repairing themselves. Moreover, I have nausea. This cannot be blamed on chemo more than 30 days after it was administered (GI chemo effects go away in 2-3 weeks max). So this must be GVHD.
On the night of the 28th, I was put back on Tacrolimus, a systemic immunosuppresant, as well as two more localized GI-targeted immonsuppresants. The way the doc put it is, let’s hit this raging fire hard and then back off to only the localized drugs once the blaze is under control. This process is supposed to take 5-8 more days.
Which brings us to our next step: the February 5th bone marrow biopsy. Two biopsies ago, I had only 2.3% blasts and we partied. The last one produced 31% blasts and we were all shocked. Turns out my leukemia is growing in pockets (which was accidentally discovered in an unrelated MRI.) So they missed the leukemia pocket when they got the 2.3% result. Accordingly, we have been pressuring the heck out of the team to do this next biopsy under some sort of guidance so that we know we’re poking in the right place. Their response: that isn’t done. So what they’ve finally agreed to is to do a bi-lateral biopsy (poke both hips) and then, if the results are quite low, do another pelvic MRI to see if there are still very distinct pockets and make sure we didn’t just happen to miss all of them. It’s amazing how much of this science is guesswork and how many people must die because of poor guesses!
Another interesting comment was made today by my inpatient attending: “If you do have gut GVHD that’s this strong, it sure didn’t produce much of a GVL effect. So DLI from the same donor may not do anything for you.” Totally logical and makes a lot of sense. So I pushed him to start up the process of lining up my backup 9/10 donor (if s/he is still out there!). That process takes 3-4 weeks. But perplexingly, he wasn’t willing. He said he wants to wait to see the bone marrow biopsy results, discuss everything at the patient care conference next Wednesday (could’ve done it today!), and then decide whether to work up that donor.
Doctors are not executives. It seems they often don’t think about parallel-tracking options so that you can pull the trigger on whatever weapon you need when you need it. We’re going to push the team hard on this point tomorrow. Keep your eyes peeled and your prayers coming. We’re doing our best to manage my care (see my earliest postings!!).
With love always, Sameer
January 31st, 2008 at 5:29 am
Sameer,
The initiative you are taking in managing your care is great. This coupled with your amazing attitude and the millions of prayers that are out there for you make a full recovery inevitable. Please continue to keep us all updated.
Lots of Love,
Meeta & Milan
January 31st, 2008 at 7:39 am
Sameer–
You consistently keep your eye on the goal, don’t let the doctors or emotions get in the way, rationalize away the pain you’re going through, and make others see your vision– despite all the odds. _That_ alone makes you a winner!! Someone is testing you– surprise them beyond their wits and FIGHT ON! Have a great day!
Kudos to you and your spirit that surely has a guardian angel perched on it’s shoulder!
January 31st, 2008 at 8:27 am
Dear Sameer, As parents of a little boy who went thru this ordeal we can understand every bit of what you are going thru. Our hearts cry out for you. Everyday is a roller coaster ride, but we need to continue to have the positive and agressive attitude, after all we are dealing with life here isnt it
We truly appreciate your spirit… Please take care, we are with you every step praying.
January 31st, 2008 at 12:35 pm
You are right Sameer! Docs are not executives!! More often than not, we are just a patient of theirs and a number for their statistics. You have to push them hard and fight for your rights.
As always ..all the best to you and your family.
esha’s mom
January 31st, 2008 at 8:33 pm
Dear Sameer,
Good health prayer.
OHM ACHUTHANANDHA GOVINDA VISHNO NARAYANA AMRUTHA,
ROHAN MEI NASAYA ASESHAN ASU DHANVANTHARE HARE,
DHANVANTHARE HARE VISHNO NARAYANA NAMOSTHUTHE,
KRURAKGRAHIHE PEEDITHANAM BAKHTHANAM ABAYAPPRADHAM,
SREEN RUSIMHUM MAHAVEERAM NAMAMI RINAMUKHTHAYE.
GOD BLESS..
Love,
Vasan.
January 31st, 2008 at 9:03 pm
Sameer,
I was glad to read your father’s entry because it showed that you were still strong and this proves it even further that no matter what comes your way, you are ready to fight it off! That is the kind of spirit that I am sure will take you far in life and will help you pass this obstacle in your pathway.
Science is a lot of guesswork and it often kills people but at the same time it provides miracles for many and my heart tells me that you will be one of those miracles.
Stay strong, you are in my prayers. Please keep us updated, as I know you will make it through this! And one day in the future when we run into each other, remind me to congratulate you for being so strong!
-Palak
February 1st, 2008 at 7:07 am
Sameer,
Our Prayers are always with you. I am certain that you will win this battle and you should.
Cheers.
Partha
February 1st, 2008 at 12:19 pm
Hi Sameer
we are inspired by your amazing spirit. Will continue praying for you.
With prayers
sujatha
February 1st, 2008 at 3:50 pm
Sending you prayers. I am sure you will beat this and be victorious. Keep up your fighting spirit.
February 2nd, 2008 at 8:20 am
Keep marching forward with great spirit and prayers from all of us. You will win this battle.
February 3rd, 2008 at 1:25 pm
Dear Sameer :
Keep up the good work - you have an amazing attitude
and spirit. I know that God is watching over you.
Best,
Laavanya
February 3rd, 2008 at 10:50 pm
Samba, when you’re back to 120% you should write a case on effective decision making for med schools everywhere.
We all have a lot to learn from you.
February 4th, 2008 at 12:37 am
All our prayers and blessings are with you. Your wonderful positive attitude and participation in your own care should inspire your physicians to go beyond the call of duty to find the answers. There has to be a solution-when the mind is strong, the body has to follow.
~Aunty Vimla~
February 5th, 2008 at 10:53 am
Today is February 5th! I hope your results are good so you could take the next step of returning to your “normal:” self. I pray with all my heart that you are cured of this. I was watching tv over the weekend and I really did think of you and your family randomly. I prayed that you soon could be doing the same thing, just sit at home, relax, and watch tv with your family! Seeing your courage has really changed my thinking. I am so used to hearing the typical indian self-pity that I never thought what a positive influence could do to change the soul. Much love to your family and you.
Ruhpreet