The Journey Forward
Sorry to leave everyone hanging for so long (especially those of you who check this blog daily!). I have been meaning to post details of what’s been going on during this hospital stay for quite some time now but just haven’t gotten to it.
There are a lot of developments to report, but let me start with the most important:
I had a bilateral bone marrow biopsy yesterday, which essentially means I had two biopsies, one from my right hip and one from my left. The results came in this morning: I still have 33% blast cells on one side and 19% on the other. Neither number is completely “accurate”, but the point is that there is still significant leukemic activity and I’m still quite far from remission (defined as less than 5-8% blast cells).
Exactly two weeks ago, I was given a relatively low dose of Mylotarg, a “search and destroy” type of drug that binds to leukemic cells and kills them. A lower dose was administered to prevent fatal liver toxicity. That dose seems to have kept my leukemia in check and prevented it from blasting off further, but it did not get me to the remission I absolutely need to move forward. Fortunately, my liver function has remained within normal ranges so it appears I can handle more Mylotarg.
Tonight, I will be given a second dose of Mylotarg which will be roughly double the first dose. This is not guaranteed to put me in remission and also carries with it the risk of fatal liver toxicity. In two weeks, I will have another bone marrow biopsy to see if remission has been achieved.
My current inpatient attending doctor (who rotates off tomorrow, transitioning to someone new to my case - something I hate about research-driven health care systems), has said that there’s a less than 50% chance of achieving a sustained remission with this second dose. If remission is not achieved, then different chemo options can be explored, but my leukemia has now seen many different chemo combinations and somehow ultimately survived them all, including the fully ablative transplant process.
Looking back at my life so far, anything significant I’ve achieved - getting into Stanford, starting my current company 5 years ago with only $4k, just to cite two examples - have been in the face of much greater odds. In fact, I have always thrived under pressure and cherished nothing more than beating the odds. Of course, a key difference is that I can’t simply outwork someone or run through a wall to achieve a goal here. I can only maintain a positive outlook and keep trying to absorb all the love that you all are sending my way….I’m still overwhelmed by the love and it brings me to tears when I think of it.
Looking at the path forward, many of the challenges are tied to timing. If the Mylotarg gets me into remission, then the team has decided to go forward with a cord blood transplant - ironically what at one point was my only option given that the 10/10 match had not yet emerged. Unfortunately, that remission, if achieved, needs to last a full 6 weeks. Why? Because the cord blood banks refuse to release even a small sample for testing until I’m in full remission! That testing takes 3 weeks plus it will take at least another 3 weeks for the graft to take hold. So instead of needing a 3-week remission I will need a 6-week remission, simply because of cord blood bank policy. Getting any sort of remission at this point is a challenge, so this is particularly frustrating and risky.
The other immediate timing issue is getting our hands on a FLT-3 inhibitor, which Novartis is willing to offer us on a compassionate use basis. This inhibitor has the strong potential to extend any remission achieved by blocking the FLT-3 mutation my leukemic cells carry, a mutation that basically turns a cell replication switch to the “on” position and leaves it stuck there, causing uncontrolled cell growth. My dear friends, Veer Gidwaney and Sundeep Ahuja, have been pushing Novartis to send all the paperwork to the FDA and, furthermore, cold-calling to get its approval (which can take up to 30 days) fast-tracked. These guys are doing amazing things, and I only occasionally am made aware of them. Within the next few days, I expect we’ll be successful in getting this final approval and receiving the FLT-3 inhibitor from Novartis right about when my team would want to administer it.
Whew, so that’s quite an update. Commendations to anyone who’s lasted this long! Thanks as always for your thoughts and prayers. This is the time we need them most!!
With love, Sameer
February 6th, 2008 at 7:24 pm
Hey Sameer, I do check every day so I’m glad to get the update, although I am somewhat “plugged in” via other routes as well =) You’ve heard me say this plenty of times, but I am not tired of saying it so I’ll say it again….your spirit is amazing ! Your attitude is phenomenal, and I am still looking forward to you buying me a drink back in SF
And don’t you worry about the thoughts and prayers….you’ve got TONS of those from all of us!
February 6th, 2008 at 9:15 pm
dear sameer and reena– keep up the positive spirit. as for prayers– they’re always getting sent your way— so just focus on letting them do their job! hang in there! much love
February 6th, 2008 at 9:20 pm
I dont know if you have seen finding Nemo but Dory sings this song and it goes “Just keep swimming. Just keep swimming. Just keep swimming, swimming swimming. What do we do? We swim, swim, swim….”. anyways it totally reminds me of you! keep swmiming sameer! you’re in our prayers and will always be!
February 6th, 2008 at 9:31 pm
hey dude, keep strong. Life is a marathon not a sprint. And the last few miles are the hardest. Keep your head up and your spirits up and you’ll finish strong. We love you and are thinking about you.
February 6th, 2008 at 9:56 pm
Sameer:
Thank you for the update. Thoughts and prayers? Check. In fact, with the addition of Anna to our family, and with my mom’s, dad’s, sister’s, and extended friends and families’ interest in your health, our thoughts, prayers, hopes, and well-wishes are multiplied dozens of times over. The love is here. You have shared so much hope and joy with us in health and now in sickness. It is some kind of law of the universe that love given will be returned a thousand-fold in times of need, and, as we realize most clearly in times like these, we are all powerless to resist such universal laws. So we continue to send our love. May it enhance your strength and fill your spirit with warmth.
February 6th, 2008 at 10:22 pm
Sending prayers and healing thots your way. I am so amazed by your courage and I am confident that you will beat those nasty cells out of your body.
February 7th, 2008 at 7:03 am
You are an amazing guy sameer. I have never come across a person like you in my life, eventhough I have read and heard about many of them. Keep up the cheers. Our prayers and wishes will protect you from everything.
Partha
February 7th, 2008 at 8:39 am
Dear Sameer,
Here is the very good health prayer.
OHM ACHUTHANANDHA GOVINDA VISHNO NARAYANA AMRUTHA,
ROHAN MEI NASAYA ASESHAN ASU DHANVANTHARE HARE,
DHANVANTHARE HARE VISHNO NARAYANA NAMOSTHUTHE,
KRURAKGRAHAIHE PEEDITHANAM BAKHTHANAM ABAYAPPRADHAM,
SREEN RUSIMHUM MAHAVEERAM NAMAMI RINAMUKHTHAYE.
God Bless. You WILL get over this pretty soon.
Love,
Vasan.
February 7th, 2008 at 10:14 am
You’ve done it before, you’ll do it again! Just keep the spirit!!
February 7th, 2008 at 10:39 am
If positive thinking has anything to do with your remission, you will reach it in no time! Keep your spirits up and receive all the good energy being sent your way.
February 7th, 2008 at 1:59 pm
Sameer, You spirit is amazing!!!!!! Wishing you nothing short of positive vibes
February 7th, 2008 at 2:08 pm
You didn’t count amongst your achievements the great movement you and Vinay got going to get South Asians to register on the bone marrow donor lists and the astonishing courage you are showing right now. You have touched many, many people and will continue to do so.
February 7th, 2008 at 2:14 pm
Sameer,
Thanks for the update. If you’ve got the time to write it, I’ve got the time to read it. Hang in there, although that is something I don’t need to tell you. You’re doing a wonderful job of it on your own. You are in our thoughts and prayers daily.
Tarak
February 7th, 2008 at 4:32 pm
Sameer, please keep your spirits high. Our prayers are with you.
February 7th, 2008 at 10:14 pm
Sameer,
You are amazing person and a great soul. God has his own ways of testing and re-testing us. You have been a perfect patient with your positive attitude.
You are in our thoughts and prayers daily. With this prayer, I request God to protect you and help you overcome your disease
Maha Mrityunjaya Mantra
Om Tryambhakam Yajamahe
Sugandhim Pushtivardhanam
Urvarukamiva Bandhanan
Mrityor Mukshiya Maamritat
February 8th, 2008 at 8:57 am
Dear Sameer,
Your posts are so inspiring to read. The hope and courage you show at such challenging times are at the same time inspiring and humbling. I wish you all luck and we are praying for your fast recovery.
All good wishes,
Deepa
February 8th, 2008 at 3:23 pm
You’re in our thoughts everyday, bro. Keep it moving.
February 8th, 2008 at 5:02 pm
Sameer and Reena
I look for your updates practically everyday, as I am sure all your friends do. Your courage , strength and cheerful spirit amaze us all. I have to tell you…. the day you posted the update, I read it at night and that night in my dream I checked the update again , it was titled ” IN REMISSION “. How beautiful it looked . I am sure we will see this soon. Our good wishes and prayers are always with you.
Love you
Santosh aunty
February 9th, 2008 at 11:11 am
Hi Sameer, I’m not sure if you remember me but we met briefly at Kruti’s b-day last year. I wanted to let you know that I might be a match for a 16 year old boy. Things have not been finalized but it’s looking pretty positive. This is so amazing b/c although I registered in 2000 for some reason I was taken off the registry. When I found out about you I called to update my information and they told me that I was taken off the registry and that they were not sure why. Naturally, I was pretty upset with their disorganization and updated all my info. and now I might be a match for someone. All of this would have not happened if it was not for you. Your courage and strength to go public with everything has changed so many people’s lives. If I had not heard about you I probably would have not updated my info. and not showed up on the registry when this boy was looking for his match. I just wanted to thank you!
Thank YOU Sameer and you and Reena are in my thoughts and prayers.
Love,
Rupal
February 9th, 2008 at 6:20 pm
Hi Sameer,
Sending our best wishes and prayers your way.
esha’s mom
February 10th, 2008 at 7:32 am
Dear Sameer,
We have just come back from a trip to Nathdwara and we have requested nothing else from ShrijiBaba except to help u beat the nasty cells still lyrking around.We are very sure that He will Bless you.
It is godd to know that you draw strength from the prayers of all your frnds,family memabers and the large number of known and unknown wellwishers.We also prayed for you at three other temples at diffrent places.You are there in our daily prayers.
You are amazingly a very resilient and strong person.Your spirits and your positive attitude despite great adversities are qualities which are very rare.and we are very happy to know that you have them.
I am sure with the excellent medical care you are receiving,.your own positive attitude and prayers of your large number of frnds,relatives and wellwishers will
definitely result in your full recovery in due course of time.
There might be temporary setbacks but eventually you will definitely overcome.It reminds me of the phrase ‘”we shall overcome” tho said in a diffrent context but the undelying sense of the might of the spirit overcoming adverse conditions.
bye and with prayers
regards
kanu-kanta