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

January 8th, 2008 5 Comments »

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.

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

December 26th, 2007 24 Comments »

A setback for Sameer

Dear Friends of Sameer and Reena,

We have had a setback in the last few days. On Friday night, we had a call from the clinic. The doctor said that they had observed blast cells in the blood test which is indicative of a relapse. They did a bone marrow biopsy on Monday (Dec. 17) and gave us the results yesterday. The AML has relapsed. We are trying to understand the full implications and options but do know that a relapse makes it more dangerous.

The transplant team does a conference each Wednesday and reviews the current cases. They discussed Sameer’s case on Dec. 19. They are looking into the possibility of obtaining one of the newer chemo drugs promising for Sameer’s type of leukemia, under a compassion use category (relapse cases are not included in the current trials). The most likely scenario is a new round of chemo leading to remission and followed by another transplant from the same donor (Donor Lymphocyte Infusion - DLI). During DLI they will not use immuno suppressants but will use the donor T cells. These two aspects will be different than the first transplant. Their target is to start the chemo on Saturday (Dec. 22).

Obviously this has come as a shock to us specially since Sameer was doing so well. In early December, Sameer had an infection with a high fever which they were able to control quickly with antibiotics. Since then his energy level has been lower and he has been feeling tired. We were thinking it was related to the infection but it looks like the AML relapse might have started around that time.

This is really hard on all of us. Reena is away in India taking care of things in Bombay and will be back on the 23rd. I have been sick since I returned from India. I picked up a bad infection on the flight back to the US from which I have not yet recovered. I am not able to hug Sameer or go to the clinic with him. Prashant has been accompanying Sameer to the clinic and the hospital. We are thankful that Prashant is in town and not away on a business trip.

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

December 21st, 2007 13 Comments »

Expanding Our Circle of Selfishness

I once heard Swami Bhaskarananda from the Ramakrishna Mission say that one of our primary goals in life should be to expand our circle of selfishness. As babies, we are all extremely selfish and focused on our own needs. A bit older, we expand our concept of what’s “mine” to include our immediate families. We start being protectively self-interested in our families - if any member of our family is in harm’s way, we get upset. And as we mature even further, some of us expand our concepts of “me” and “mine” to include community or country and perform great deeds as community activists or patriots.

We must recognize that as humans, it is our nature to be selfish. The question is, how wide do we make our circle of selfishness? Most people - especially in the Indo-American community - would accept that this circle should include our immediate families, extended families, and even our linguistic or religious communities. But we often have trouble expanding our circle beyond those boundaries. This perhaps explains why our community typically is good at engaging in business but bad at engaging in politics.

Almost all of you reading this blog have already taken active steps to reach beyond these boundaries, whether you realize it or not. By registering to be a bone marrow donor, you are stepping forward to be of help to anyone who needs a transplant. That anyone could be someone like Vinay or me, or it could be patients like Bevin, Savitha, or Dhiren who are still praying with all their might that their match might step forward and register to be found.

My plea to all of you is to continue spreading the word and coaxing and cajoling everyone you know to get registered. Here are some ways you can spread the word using a video from Russell Peters or another one from Rasika Mathur:

blog about the video
make your email footer link to it
update your IM “status” messages about it
get it to be one of the most watched videos on YouTube…everyone should watch it, comment on it, rate it
upload it to Facebook (you should also upload it to the help vinay group on facebook)
email your friends!
“post” the link to the video on Facebook
bulletin your friends on other social networks
embed the video in your myspace profiles/their blogs/etc.

Thank you all for getting our campaign this far. Now let’s expand our circle even further for our brothers and sisters who need us at this critical moment.

December 17th, 2007 No Comments »

“Let All Your Thinks Be Thanks”

The poet W.H. Auden nicely captured the spirit of Thanksgiving when he wrote that, in prayer, it’s best to quickly get past the begging and on with the gratitude part. He also wrote, “let all your thinks be thanks.”

This Thanksgiving, I can do nothing but this. It’s feels odd to think that it was only a few months ago, in May, that doctors told me I was gravely ill. One doctor even told me, “I won’t have you dying on my watch!”, prompting me to wonder what he was really saying since he would be rotating off my team in ten days.

But months have now passed and I’m still here. Not only am I here, but feeling as healthy as a horse. (Well, almost. My first leg workout this year last Saturday almost knocked me totally out of commission all week! It also landed me in trouble with my family and doctors since, combined with some dehydration and fatigue on Sunday, it led to shivers, chills, and a temporary fever.) Most importantly, I’m on the road to a full cure, something that will be marked by 3 years (2 years, 10 months to go!) of no relapse.

My thanks this year is for all of this amazing fortune, and for the miracle of a last-minute bone marrow match. But, more than anything, for what has made it all possible: God, my incredible wife, my loving family, and, of course, all of YOU who saved my life.

November 22nd, 2007 4 Comments »

Sameer is getting back to normal

I realize that I have not written to you for almost a month now and felt that it is time for another update.

We have been watching Sameer improving and recovering gradually. His blood counts are now close to normal. He is taking quite a few medicines some of which affect magnesium, liver enzyme and some other levels. He is getting magnesium as intravenously through the Hickman line which is still installed in his body. His medical team is adjusting medication and dosage to manage all the pertinent blood levels. He is being monitored closely and gets a complete blood work done twice a week. As he mentioned in his blog on www.helpsameer.org his medical team does not find him too interesting and we pray that it stays that way!

He is starting to show a little chin stubble and also a moustache. He is likely to have a goatee pretty soon unless he shaves it off as this baby is growing up really fast! He has had a deep tan from the chemotherapy and radiation treatments. I am noticing that the tan is getting somewhat lighter and his skin is showing signs of returning to its normal color. I remember reading somewhere or hearing in one of Swami Bhaskaranandji’s lectures that all the cells in the body (except in the brain) get replaced every 3-4 months. This correlates with the close monitoring for 100 days from the transplant by the transplant team. After that the monitoring is handed off to a hematologist/oncologist.

We were concerned about the Graft Versus Host Disease (GVHD). There might have been some small signs of it but with God’s grace and the good medical team, we have not seen any major issues related to it. We have to keep a watch for it since GVHD can strike even after a year or more of the transplant. Sameer has to be close to a transplant center for a year or so because if there are any symptoms of GVHD, they need immediate attention.

We keep doing our best as we move through different phases of Sameer’s recovery. We keep praying for an uncomplicated recovery and so far God has been answering our prayers. We hope that the rest of his recovery will remain uncomplicated as well and he will be back to his normal or even better than his normal.

Sameer and Reena are planning to move back to San Francisco sometime in January. It has been very nice to have both of them in Seattle. Reena is growing fond of Seattle with special fondness for views of the mountains and particularly Mount Rainier http://search.live.com/images/results.aspx?q=mount+rainier&mkt=en-us. It is not hard to see why so many people fall under the spell of what is locally known as the Rainier effect! I am sure that they will be back here in Seattle many more times but under better circumstances.

With Best Wishes for a Happy Thanksgiving and Everything Else,

Kumar Bhatia

November 17th, 2007 4 Comments »

Live each day as if it were your first

Dear Friends and Loved Ones,

I can’t stress to you how much I marvel at my blessed fortune every day, a fortune that all of you had a hand in creating.

If you look back at my earliest posts on this website, you’ll recall a newly-diagnosed leukemia patient needing a transplant from a grossly underrepresented and traditionally apathetic community. Along with Vinay, I challenged you all to step up and spread the word; to register and respond when called upon to save a life. I knew that this process was very unlikely to benefit me directly, but I had faith - and was convinced by Robert and others - that I had an opportunity to bring visibility to this issue to benefit future patients. This worked as hoped, and two other patients found matches through our drives. And the unimaginable happened: I also found a match through your efforts!

So who is to credit for this? Each and every one of you. It could have been your email that caused the donor to register. All of you stopped to think for a minute, “What if this was me or someone in my family?” and then did something as simple as sending an email to everyone you knew. This was Awareness Building, and was a crucial phase of your efforts. Others of you - many of whom I don’t even know but hope to seek out to thank in person one day - vested yourselves even deeper by organizing drives. You did this at your companies, your colleges, in your local communities, and at your temples of worship. And one of you actually won the luck of the draw and got to be my donor.

In all of this, I consider each and every one of you heroes. You each played a part in literally saving my life. Just think of it: if you hadn’t put in the effort you did - whether it was sending an email or organizing a drive - I would not be alive today. I would not get to be a goofball for Reena and get her to giggle like a little girl, something that brings me great joy every day. I would not get to hug my dad or cherish discussions with him about life, philosophy, and spirituality. I would not get to continue to build our startup (www.octanetech.com), playing XBox with Prashant, or making big career plans to make a bigger difference when I grow up.

Thanks to you all, however, I am not only alive but well. I am feeling 90% normal (my mind masks almost any gaps in energy, so this is my best estimate), and my medical team is quite bored with me. My first week out of the hospital, they saw me once and then called before my second scheduled appointment. “You know, you’re really not that interesting to meet with twice a week. Do you mind if we just, you know…skip the second appointment each week?” they asked. No problems here; this way I get to focus and work more! At my single weekly meeting the following week, they informed me that I am doing better than 99.9% of patients at this stage. I was blown away and immediately stopped peppering them with questions about when I would be back to full energy and get some hair on my chin. And this week, the doctor didn’t even set foot in the exam room. Oh, and I now have some hair on my chin.

All of this fortune has been divinely initiated and humanely implemented. And I can’t get over how un-difficult it was for all of us to band together, and save 3 lives, mine included, in a 3-month sustained campaign. We now are aware of 4 more individuals who desperately need donors, and I strongly urge all of you to think about the simple actions you each took to save my life. Let’s see if we all can come together one more time to create a blessed fortune for someone else.

November 7th, 2007 7 Comments »

Sameer celebrates his birthday at home

From Kumar, Sameer’s father,

Sameer has had a challenging time for the last couple of weeks. This was expected and fortunately his side effects while quite uncomfortable were less severe than the average. The chemotherapy and the radiation had caused his mouth to become sore and the immuno-suppressants had caused his throat to get constricted. As a result, he suffered from mucositis (http://www.cancersupportivecare.com/mucositis.html) where the mouth produces large quantities of mucous causing him to cough and spit frequently into a paper cup. The cup was getting full in 2- hours and the nights were particularly difficult since the mucus interfered with his sleep. The throat constriction made swallowing difficult and he had to be fed liquids via the IV hooked up to his Hickman line. Talking caused discomfort and pain. His right shoulder was quite painful and the left shoulder was slightly painful. It was difficult to see him suffer like this even though we knew that it was fortunate that he did not have any fever or diarrhea which are not uncommon in his situation. It seemed to me that all the prayers, blessings and love form everyone were allowing him to ride the ship of prayers and blessings through turbulent waters which otherwise he would have had to swim through on his own.

I was with him on the early morning of the transplant (Oct. 3 ) and then I visited him that evening. I realized that I had developed a cold which turned into a mild infection in another day. Therefore, I could not visit him and only could talk to him and Reena on the phone. Prashant was visiting each evening to give them company. Also, my friend Eli was visiting them almost every other day. Several other friends came by as well when they were either visiting Seattle or making a special trip to see Sameer. Reena was looking after him with much love, and making sure that he was as comfortable as he could be. Sameer also was managing his care by making sure that he was getting the right medications at the right time as the nursing staff rotated each day. Among Sameer, Reena and the nursing staff, he was being looked after very well. The medical team was monitoring him closely and adjusting his dosage as necessary in response to his symptoms. The medical team also told us that his Peripheral Blood Cell Transplant (PBCT) contained close to 10 million cells. They are generally satisfied with 5 million cells and the increased number of cells improve the chances for a successful engraftment. Once again, we thanked the anonymous donor who generously provided this wonderful gift.

I was better by Monday, October 8 and was able to go to work with slight remnants of a cold. Since I still could not go to visit Sameer, I decided to go to Detroit for a conference leaving on Oct. 10 and returning on Oct. 12. I was able to follow Sameer’s progress over the phone by talking to Reena and Sameer. I was finally able to visit Sameer on Oct. 13. His blood counts had reduced and his neutrophil counts were hovering around zero as intended. At this point his immune system was almost non-existent

We had been told that the engraftment takes place between days 12 and 16 after the transplant. We therefore looked forward to the day when his blood counts would start to recover. The medical team had told us that the patients notice the engraftment even before the blood counts start recovering. The patients feel their mouth sores improving and feeling more comfortable due to the immune system rebuilding itself. It happened as expected. Sameer started feeling some improvement in his mouth and was able to swallow with less pain than before. The mucus was also starting to decrease. On Thursday Oct. 18, the neutrophil (http://en.wikipedia.org/wiki/Neutrophil_granulocytecounts) were showing an increase, and the medical team was thinking that he could go home the next day. However the neutrophil counts dropped the next day instead of increasing. The medical team explained that sometimes the neutrophils get used up by the tender areas such as the mouth and actually can show a drop. We were a bit disappointed but at the same time did not want to have Sameer come home prematurely. The medical team indicated that he might have to stay the weekend and might be able to go home on Monday. However, on Saturday (Oct. 20), the neutrophil counts increased significantly and they decided to allow him to go home.

Saturday, Oct. 20 was the annual Durga Puja celebration at the Vedanta Center retreat where Swami Bhaskaranandji conducts a traditional worship. Reena and I went to Durga Puja in the morning while Sameer was still sleeping. Before we reached the retreat, Sameer called us to tell us that he can go home that evening. We were really happy. When we returned from the retreat to Sameer’s hospital room, we found Sameer with 5 of his friends from San Francisco who had flown to visit him and surprise him just before his birthday on Oct. 22. Robert, Dayal, Brady, Nick and Nick’s fiancé Caroline were in the room and all six of them were very happy. I knew that Robert , Dayal and Brady had planned their trip and bought their tickets in August. It was fortuitous that they came on the day Sameer was leaving the hospital. We all came home and all had a good time playing a word game till late night (I did beg off and go to sleep early!).

Sameer went to the clinic for a check up today, and his blood counts have improved further as expected. He will be closely monitored at the Hutch clinic by the transplant team for 100 days following the transplant. He is not allowed to travel or even go to any crowded places. Even though his neutrophil count will be close to normal, his new immune system is like a new born baby’s immune system since it does not have immunity to viruses. This immunity will be developed over a year similar to how babies develop their immune system during the first year of their lives. Sameer has been very careful and intelligent about taking precautions to avoid the chances of infections. I am sure that he will continue to use the advice of the transplant team to stay healthy. We expect that there will be some Graft Vs. Host Disease (GVHD) effects but we are fully confident in the transplant team’s ability to manage these with the least possible discomfort to Sameer.

Oct. 22 (today!) is Sameer’s birthday, and for me it is a day of thanksgiving for Sameer’s recovery and cure. I pray for Sameer and Reena to continue their life together as ideal Hindu Householders.

Once again, my sincere thanks to each and every one of you for your prayers and good wishes for Sameer. Please pardon us for the delay in responding to your nice emails and phone calls. Please feel free to write and call, and we will definitely respond even though we might be late. If you happen to be in Seattle, please let us know. We will love to see you. Take care.

With Best Wishes,

Kumar Bhatia

October 22nd, 2007 11 Comments »

Day +16

It’s Day +16, and all’s well….I’ve actually started engrafting!! My neutrophil count (the part of my white blood cells that fight infection) had literally gone down to 0.00 a few days ago, but then began to rebound over the past 3 days. First it went to 10, then 30, then 50, then 280. In the meantime, my overall white blood cell count climbed all the way to 1000.

The preceding days (between 8 and 16) were all pretty much as I described in my earlier post. Fortunately, I didn’t develop any major mouth sores and I was able to sleep with my newfound nightly “cocktail”. Miraculously, I haven’t had any diarrhea or nausea either. Yes, I am very lucky! Some of you must be saying some special anti-diarrhea mantras for me or something, because that’s just something you get with chemo.

I told the doctors 3 days ago that my goal was to be home by my birthday. They asked, “Have any plans?”, to which I said no, and they retorted, “Better start making some!”. By Wednesday, they told me that they were targeting Friday (today) as my discharge date! I was amazed and surprised - and incredibly excited to get to go home. I haven’t actually minded the time in the hospital much; I’ve been terribly busy and behind with work (lots of good stuff going on with the company!). But you do feel cooped up after a while here.

(In classic Sambastyle, I did negotiate for the hospital to lift up the permanent Venetian blinds that are wedged between the double windows in our room so that we could fully enjoy the beautiful view of the Montlake Cut and Lake Union. It took me 2 weeks to accomplish this, but the best part was that every nurse who has walked into my room since has asked me how the heck I managed to get those blinds up. “I just always tell my patients it’s impossible!” they say. Small victory but big joy )

As far as getting home, I was most excited by the idea that my neutrophils would go up, my mouth would heal, and I would be able to start eating again! Reena and I got excited and began trying to figure out how to pack all our stuff, and started making plans for the weekend.

This morning, I noticed that my throat had pretty much completely healed. However, my mouth still felt a little cut up, not healed completely as I was hoping. The doctors came in and told me my neutrophil count had actually dropped from 280 to 80. They said this was not cause for alarm; it’s possible the neutrophils being produced were being deployed to heal various parts of the body.

Now their prediction is that I should be out in 2-3 days. Let’s hope it’s less than 2! In the meantime, no issues. We’ve got plenty to do - I still haven’t read any of the magazines or books I’ve been getting since May!

October 19th, 2007 3 Comments »

Sameer receives his transplant

See video of Sameer receiving his transplant. A happy day.

Read the rest of this entry »

October 15th, 2007 2 Comments »

URGENT: More Drives Needed

Dear Team Sameer,

In recent weeks, we have learned of two more Indian-Americans in our social circle who need transplants. We must mobilize and push forward with more drives so that these folks can find bone marrow matches. Here is a posting about one of them.

Please do what you can to spread the word and, more importantly, organize drives yourselves (see this page for instructions on how to do so). Email us from the Contact page if you have any other thoughts on how to push the cause forward or need assistance organizing a drive. With 25,000 more registrants, we should be able to find 3-4 more people matches immediately!

Thank you for all that you’ve already done. Let’s push forward so we can still hit our goal and save more lives.

Sameer

October 11th, 2007 2 Comments »

Day +8

With God’s grace, things continue to go well. I am very fortunate that the only significant thing my body has been bugging me with is mucusitis, where thick, ropy mucus forms in my mouth and results in me having to spit all day and night. This is caused by the radiation and chemo and had disrupted my sleep for several nights. I would wake up every 15-30 minutes feeling like I had to spit. Last night, the nurses introduced me to The Cocktail - a mix of Benadryl and Atavan that knocked me out good. Benadryl also dries out mucus, and Atavan is a muscle relaxant. The combination of these two made it so that I slept without spitting for 2-hour stretches, which was fantastic! (The initial high from The Cocktail was something else too - Reena watched in amusement as I fought through it to finish a proposal I was working on for a customer )

The mucusitis also makes it so that I’m not able to really eat anything. My weight started dropping (6 lbs in one day!), so the docs put me on IV food (1100 calories, 75g of protein, some carbs, plus a bag of lipids), and now I’m back above my admit weight. My stomach is still hungry, though (the IV food goes straight into my bloodstream), but the inside of my mouth is not in good shape, so I only manage the occasional fruit or soup to avoid my stomach from completely shrinking.

I’ve been having trouble getting out of bed in the morning, partially because my sleep is interrupted so frequently by bathroom breaks or nurses, and partially just because my body needs rest. So I’ve been waking up past noon every day, struggling to fight off some weakness, eventually showering, and then walking 0.5-1 mile around the floor to prevent deconditioning. Thereafter, I am able to sit down and work for a few hours until about 11pm or midnight, when Reena and I go to sleep.

Overall, the nurses are amazed at how well I’m doing. Many of them comment that I look too healthy to be in a hospital; others simply scatter when I plow down the halls at top speed for my daily “walk”. However, the toughest days are supposedly still ahead, so we’re bracing for more pain until engraftment.
Engraftment should happen on day 12 or later, after which graft-versus-host disease symptoms are likely to set in. Keep in mind that some GVHD is a good thing, because it also means that there is a graft-versus-leukemia (GVL) effect. GVHD can affect one’s skin, GI tract, or liver (less commonly). I haven’t had diarrhea or nausea yet but fully expect to in the coming days.

Once my counts are rising from my new immune system (THANK YOU, MY DONOR!!!!) and I can eat by mouth again, I will be released on all counts. Hopefully that will be just in time for my real birthday (10/22)!

Thanks and love to you all for your undying support,

Sameer

October 11th, 2007 5 Comments »

Help save Sameer’s life

Our friend, Sameer Bhatia, was just diagnosed with Acute Myelogenous Leukemia (AML), which is a cancer of the blood. He is in urgent need of a bone marrow transplant. Sameer is a Silicon Valley entrepreneur, is 31 years old and
just got married in 2006. His diagnosis was confirmed just weeks ago and caught us all by surprise.

Another friend of ours, Vinay, was also diagnosed with AML and also requires a transplant (many of you may already be familiar with Vinay's campaign). We have teamed up with Team Vinay in order to build greater awareness of how you can help.

3 Things You Can Do!

The greatest likelihood for a bone marrow match for both Sameer and Vinay is from someone in the South Asian community - however, very few South Asians are actually in the bone marrow registry. This is where we need your help.

1. Please get registered
Getting registered is very quick and requires a simple cheek swab. Team Vinay has organized a nationwide campaign and we need you to get registered by visiting a local drive. Drives are currently taking place all around the country, including throughout California, Washington, Michigan, Illinois, New York and many other states. Please see the full list of locations here: http://www.helpvinay.org/dp/index.php?q=event.

2. Spread the word
Please share this web page with at least 10 people (particularly South Asians), and ask them to do the exact same. Please point your friends to the local drives and ask them to get registered.

3. Visit Vinay's site
To learn more, please visit www.helpvinay.org. The site includes more details on how to organize your own drive, valuable information about AML, plus FAQs on registering. Please visit http://www.helpvinay.org/dp/index.php?q=node/108 for more information on the cities where more help is needed. Thank you for getting registered to help Sameer and Vinay fight and win against leukemia.

Thank you, Friends of Sameer and Vinay

June 26th, 2007 Comments »