Help Vinay & Sameer

Setting Forward!

I don’t believe in setbacks.

Forward is the direction we must go. As Swami Vivekandanda famously said, growth is life and contraction is death. We must grow from this experience, whatever pains - physical and emotional - it brings us. What else, after all, is the process of life if not growth?

I have grown a lot even in the past week and a half. Like everyone else, I was stunned by the news of relapse. What happened to doing better than 99.9% of all patients? Well, that was in reference to the GVHD (graft-versus-host disease) which I hadn’t had yet, which would have also triggered the GVL (graft-versus-leukemia) effect we were actually looking for. So in retrospect, it’s hard to know when one is fortunate and when one is not! It’s admittedly frustrating when good news turns out to actually be pretty abysmal.

I had my most depressing days after the suspicion of relapse first hit. And they were really down days. Reena was still visiting our business operation in India and I was missing her dearly. Thank God I was at home; my brother, Prashant, dropped everything and spent all of his time with me, cheering me up tremendously. My dad fought through his virus and we all collectively began to engage with my medical team to put a plan together.

The team surprisingly told me that I could call it quits now and just run away from chemo and doctors if I wanted. I looked at them like they were crazy! (They absolutely were crazy to suggest that and, as Prashant would later comment, they clearly don’t know who they’re dealing with here! )

Once that thought was very quickly off the table, we focused on getting the team to put together an aggressive and unconventional plan of attack. “All of our conventional plans for patients relapsing this soon after transplant are pretty unsuccessful,” they would tell us. So we put them to the test, and they innovated:

I’m getting an aggressive chemo regimen (while I blog!), Ida-FLAG, that my leukemia hasn’t seen before. It will be followed on Saturday by Sutent, a kinase inhibitor that should help curb the aggressive FLT-3 ITD mutation that may be a root cause of the relapse (don’t know but we have to hit on all fronts simultaneously!). After a month or so, they are going to infuse me with frozen cells from my donor this time without any immunosuppresants; this will allow the donor T-cells to attack the leukemia with a high risk of GVHD, which we are fine with.

So that’s the plan, and I know it’s the best shot we have! We’re all optimistic and I’m very confident that we have a strong path to success here. Interestingly, the Sutent has never been tried in combination with chemo, so hopefully we’ll be trailblazing new paths to cures for situations such as this one!

Finally, an up-to-minute update: I’m tolerating the chemo extremely well with no side effects. In fact, the chemo is energizing for some reason! I’m pumped up, am in great spirits (no more dog days left in this dog), and have never been more positive. I can’t explain the energy any other way than to say that your collective LOVE out there is so strong it’s overwhelming.

Press on and push forward! We will stop not till the goal is met.

24 Responses

Esha's mom Says:
December 26th, 2007 at 5:55 pm
Hi Sameer,

Although I don’t know you personally, I got hooked to your blog a few days ago and was happy to read that all is going well with you after the transplant.

Sorry to hear about the relapse…while its scary…keep in mind that you kicked it once ..so I am pretty sure you could kick it again and I wish you all the best. Continue to stay positive.

I myself am a mother of a 4 yr old girl who has recently been diagnosed with a philadelphia chromosome positive ALL and is in active treatment currently. I know exactly what you and your family are going thru. Hang in there and this too shall pass.

esha’s mom
Kanu-kanta Says:
December 26th, 2007 at 10:09 pm
Dear Sameer,
Jai Shri Krishna,
The Medical Team and the medicines will do whatever they are supposed to do but a mind is stronger than everything.
You have a very highly positive way of handling things and the way u have handled your medical situation up to this point is really a role model for everyone in a similar situation.
We are very sure that you will be able to overcome this setback with medicines,prayers of all loved ones,and most importantly your own fighting spirit.
We on our part are constantly praying for your fast recovery.We have great faith in Shrijibaba and we are very sure His Blessings are with u and all of us.

regards
kanu-kanta
Well Wisher Says:
December 27th, 2007 at 10:01 am
I’ve never met you or your family, but do pray for your recovery after visiting your website and registering to be a donor a while ago. You are a great inspiration to many people and have touched their lives in ways you wouldn’t imagine. Leap forward!
pallavi Says:
December 27th, 2007 at 12:50 pm
Wow!! Your indomitable spirit is truly inspiring. Here’s a beautiful and inspiring anonymous poem.
============================
If ever there were a time to dare,
to make a difference,
to embark on something worth doing,
it is now.

Not for some grand cause, necessarily,
but for something that tugs at your heart,
something that is your aspiration,
something that is your dream.

You owe it to yourself to make each day here count.
Have fun.
Dig deep.
Stretch.

Dream big.

Know, though, that things worth doing
seldom come easy.
There will be good days
and there will be bad days.
There will be times when
you want to turn around,
pack it up,
call it quits.

Those times tell you
that you are pushing yourself,
that you are not afraid to learn by trying.

Persist.

Because with an idea,
determination,
and the right tools,
you can do great things.
Let your instincts,
your intellect,
and your heart
guide you.

Trust.

Believe in the incredible power
of all the things that will
cross your path this year.

The start of something new
brings the hope of something great.
Anything is possible.
There is only one you,
and you will pass this way once.

Do it right.

(Author unknown)
Harish Says:
December 27th, 2007 at 3:35 pm
Sameer , Hang in there
Hopefully the plan will work and new year 2008 will bring good news.
I am a past donor , May 07 gave it to a unrelated patient and waiting to her back from them , his case is just like yours he was fine for months , then it relapsed , all I know is he is 26 year old and I am waiting to hear back if i can be of any help again.

I am hoping your donor is also standing by you so cheer up and God willing everyyhing will be fine.

I myself have learnt a lot about this by just being part of it.
Harish Says:
December 27th, 2007 at 3:35 pm
Sameer , Hang in there
Hopefully the plan will work and new year 2008 will bring good news.
I am a past donor , May 07 gave it to a unrelated patient and waiting to her back from them , his case is just like yours he was fine for months , then it relapsed , all I know is he is 26 year old and I am waiting to hear back if i can be of any help again.

I am hoping your donor is also standing by you so cheer up and God willing everything will be fine.

I myself have learnt a lot about this by just being part of it.
Amitha Says:
December 27th, 2007 at 5:18 pm
Go Sameer!!! In the words of my USC Trojans (which your Stanford Cardinals beat in a very very sad football game for which I was present!)…FIGHT ON!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Looking forward to meeting both you and Vinay soon,
Amitha
Bevin Says:
December 27th, 2007 at 8:07 pm
Sameer,

Your words have inspired me. I’ve kept up with your blog everyday while I was in the hospital. I was encouraged when I found out that you and Vinay both found donors. It helped me reassure myself that I will find mine. I believe you will be ok. I will be praying for you and your continued fight. Keep your faith.

Bevin
Jonathan Brown Says:
December 27th, 2007 at 10:18 pm
You are amazing!!
Jim Says:
December 29th, 2007 at 4:13 pm
Sameer, I cannot help but marvel at your indomitable spirit in face of such adversities. This story MUST and WILL have a happy ending - It simply cannot turn out to be any other way. You will PREVAIL and set an example for the rest of us.

God bless
Tarak Says:
December 30th, 2007 at 12:19 pm
Loved the update…and you attitude!! I have come to expect nothing less from you!! Hang in there. I believe there is a reason for everything - TRAILBLAZER.

Tarak
kevin sandhu Says:
December 30th, 2007 at 10:59 pm
Hi Sameer, I worked with you briefly back in early 2004 and I agree - you dont belive in setbacks. You will push ahead and overcome this little setback. But my friend, I did not know about your situation and just learnt about it thru others. I am shocked, but having known you, I know you are the “Rambo” here and will win regardless of what the odds are. I have total faith in you, like thousands others. Please dont let us down.
best, kevin.
Saily and Rajiv Says:
December 31st, 2007 at 6:32 am
Dear Sameer,
We wish you and your family peace, hope and good health for the New Year. You will overcome all the battles that are ahead of you! With your determination and spirit, I am sure that you will be on your way to good health soon.
Bimal Says:
January 2nd, 2008 at 1:17 am
Hi Sameer,

Sorry for not being touch since quite some time. Well well, I 100 % agree with Prashant that the Drs don’t know whom they are dealing with. You Rock. Your positive energy & high spirits will surely take you through in this second round too. Keep up your spirits & I am sure with the blessings of All Mighty even this phase will pass by.

Cheers
Sudha Says:
January 2nd, 2008 at 11:55 am
Dear Sameer,

I congratulate you on your positive attitude and your spirit. May the year 2008 bring you luck and health. Your attitude will prevail.

Our blessings are with you and Reena

Sudha Prakash
(Team Vinay, Orange County)
bhavna Says:
January 2nd, 2008 at 7:24 pm
hi samba: prashant is right, the team REALLY does not know who they are dealing with! you rock!
Jaya Chakladar Says:
January 3rd, 2008 at 8:59 pm
Dear Sameer !

Praying for you with all heart !

With lots of love
Jaya
Amit Says:
January 7th, 2008 at 9:31 am
Sameer - I have been a regular visitior of your and vinay’s site since I found out about these drives held in neighbourhood. I pray things get back to normal as soon as possible and god give you and the family the stregth for it. You have shown an amazing inspiration for me and am sure many more others.
Mukesh Advani Says:
January 7th, 2008 at 6:22 pm
Hey Sameer:

You hang in there my friend. Despite the setback, we know you will eventually beat it. Our thoughts and prayers are with you always. I know everything possible is being done but don’t hesitate to call if I can help with any other matter.

Best wishes,

Mukesh
Nikki Says:
January 8th, 2008 at 2:44 pm
Sameer,

It’s sad to hear about what you and your family aare going through but at the same time I can see how strong your character is and it shows in the way you have faught against this illness! My prayers are with you and I know that you can fight against it and prove to be stronger then the obstacles that are coming in your way.

You will beat this, I know it, your family knows it, and I am sure you do too! So, just keep fighting… we are all with you…

-Nikki
Kevin Krasnow Says:
January 12th, 2008 at 2:29 pm
Sameer,

I am sending good thoughts and vibes your way. I’m sorry to hear about your relapse, but am inspired by your positivity. You have beaten this thing once, and I am confident you can do it again. My thoughts and prayers are directed at your and your family in theswe trying times. Even Harry is pullin’ for ya! Be well and I hope to connect with you soon.

Love,

Kevin
Rachel, Carter and Adlai Says:
January 13th, 2008 at 11:01 am
Sameer,

We are thinking about you and Reena and your family every day!

Love, Carter, Rachel and Adlai
Kiran Desai Says:
January 14th, 2008 at 12:25 pm
Please hang in there. do not listen to statistics. As our doctor told us that each case is unique. My son went through Chemo for six month. He is in seattle.
We are in Seattle area for next few weeks. Let me know if we can be of any help.
We know what you and your family are going through.

Please hang in…….

Kiran Uncle.
inspired... Says:
January 14th, 2008 at 3:22 pm
i have been following your website and wishing for good news for you and your family. Your spirit is amazing. The world cannot hold you down. I know you will get through this.