Help Vinay & Sameer

Update from Sameer’s father

Dear Friends of Sameer and Reena,

We are encouraged that Sameer is doing better than he was doing a week ago. As he has posted on his blog at www.helpsameer.org, he gave an update about his treatment:

“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.”

The chemo started on Dec. 22 (Saturday) and was completed by Dec. 26 (Wednesday night). Reena had returned from India on the 23rd and stayed with Sameer in the hospital. The chemo was relatively uneventful and they both came home on the 26th night. Sameer continues taking Sutent after the chemo. We looked forward to a peaceful winter holiday and the New Year’s day. However, on Dec. 30 (Sunday), Sameer developed a fever with a temperature of over 102F. They had him go to the hospital in the evening. His temperature rose further going over 105F and his blood pressure dropped. They pumped him with fluids and antibiotics and in a day the blood pressure was back to almost normal, but the temperature remained around 102F+. Sameer had a septic incident and it was scary. With God’s grace and good medical care, he recovered but his temperature remains around 101F. They have run a lot of tests and done blood cultures which all show up negative. The source of the temperature remains somewhat of a mystery. We understand that in 50% of the nuetropenic patients, they cannot determine the cause of the temperature but eventually it goes away. Sameer is still in the hospital getting antibiotics, fluids and other medicines.

Kruti and Nisha flew over from New York and arrived in Seattle on Saturday (Dec. 29) to visit Reena and Sameer. They had been communicating with Prashant. Sameer and Reena were surprised to see them when they went to visit Prashant on Saturday evening. Both Kruti and Nisha ended up spending a lot of time in the hospital with Reena and Sameer. The three girls decorated the hospital room for New Year’s eve as a surprise for Sameer. As you can guess they brought chocolate cupcakes along with other goodies and sparkling cider. Prashant DJed the event with full ensemble including speakers and sub-woofer. The best part was that they were able to watch the best fire works on the west coast which are lighted from the top of the Space Needle which was visible from Sameer’s hospital room. Kruti and Nisha flew back to New York on Jan. 1 leaving behind a lot of cheer.

During this current hospital stay, Sameer was very uncomfortable and in pain. He had alternating diarrhea and constipation. He had pain in his GI tract with an unknown cause. He is getting back to his normal self, but the pain still persists and they are trying to find out the cause. The last round of chemo was pretty harsh.

On Friday Jan. 4, a bone marrow biopsy was performed and the results were not the best one could expect. The flow cytometry showed blast cells in the blood indicating that the leukemia was still present. On Monday, Jan 7, they did a morphological evaluation of the biopsy which is a more refined test. Dr. Bedelov who has been Sameer’s transplant team physician during the last month and devised the new chemo+Sutent regimen, told us today that he is not worried. His judgment is that the current test is not meaningful since there are a low number of total cells present in the marrow as an aftermath of the chemo and Sutent. He wants to continue on the current course and do a biopsy again on Monday, Jan. 14, to make another evaluation as the Sutent takes effect. That biopsy will determine the future treatment options. He still expects to be able to go ahead with the donor lymphocyte infusion (DLI).

Dr. Bedalov also has been looking at alternatives to Sutent. One such alternative is Mylotarg, which is a drug that attacks certain marked (CD-33) cells. He also has an OK from Novartis for the trial drug PKC412 on a compassionate use basis. The PKC412 along with Sutent are FLT-3 inhibitors, which are helpful in the type of leukemia Sameer has (he is FLT-3 positive). The Novartis trial drug still needs to go through the internal University of Washington approval and then an FDA approval. It will take at least another 4 weeks or more to work that process. The current plan is to wait to see how well Sutent works and what the next biopsy results are before deciding the next course of action.

Our next milestone is for Sameer to get well enough to come home from the hospital. That requires the fever to get back to the more normal range on a sustained basis, and no other complications. We hope and pray that the next bone marrow biopsy will turn out to be acceptable to proceed with DLI as planned leading to full recovery.

We all need to continue our prayers for Sameer. I will keep you informed as we find out more. Thank you for your support and prayers.

Kumar

5 Responses

Aparna Says:
January 13th, 2008 at 8:54 am
Dear Sameer,

We are praying for you! You have shown such powerful courage throughout this process. You are truly an inspiration to all that have been given the chance to witness your strength. Stay Strong! You will get through this. Reena, Kumar and the rest of Sameer’s family, you will continue to be a source of support for Sameer as he gets through a very challenging phase in life. But he will!

With love and regards,
Aparna
Villivalam Vasan Says:
January 13th, 2008 at 10:28 am
Dear Mr. Kumar,

Everything will positively turn out for the best of Sameer.

OHM ACHUTHANANDHA GOVINDA VISHNO NARAYANA AMRUTHA,
ROHAN MEI NASAYA ASESHAN ASU DANVANTHARE HARE,
DANVANTHARE HARE VISHNO NARAYANA NAMOSTHUTHE,
KRURAKGRAHAIHE PEEDITHANAM BAKTHANAM ABAYAPRADHAM,
SREEN RUSIMHUM MAHAVEERAM NAMAMI ,
RINAMUKHTHAYE.

With best wishes.

God Bless.

Vasan.
Nikki Says:
January 14th, 2008 at 10:28 am
Our thoughts continue to remain with you. Best wishes.
Sudha Says:
January 14th, 2008 at 11:49 am
Dear Sameer, Reena and Kumarji,

Thank you so much for the update. I visit this website everyday looking for an update. We have been praying for Sameer everyday. Our hopes/prayers/blessings are with your family at the time of this new challenge. We admire the courage and grace shown by your family during this difficult time. From what I have heard of Sameer, I am sure that he will beat this one too. Please keep us upadated with the latest information as it becomes available.

Warm regards,

Sudha Prakash
Amitha Says:
January 14th, 2008 at 6:54 pm
Hi Sameer and Kumar Uncle!
It seems like you had a fun new years party =). I am glad you had a good time!
Keep fighting…you are such an inspiration to everyone.
Lots of love from SoCal,
Amitha