Dear Friends of Sameer and Reena,

This will be a very short update since I need to go to the hospital in a few minutes.

We found out yesterday that Sameer had a stroke while in the unconscious state. The CT Scan shows that the right side of his brain is affected. This area controls motion on the left side of the body, etc. There is also swelling in the brain which can put pressure on the brain stem. We discussed yesterday a surgical option to relieve pressure in the brain and decided that it was too risky because of potential for bleeding due to inadequate blood counts, etc. I think and hope that the swelling was at its maximum when it was discovered yesterday and should therefore go down. He has been stable last night and the situation has not worsened.

The white blood counts are still zero and the rest of the situation remains the same. His vital signs are good due to his good physical conditioning before this illness. In summary, he remains in a serious but stable condition.

Many of you continue to visit to interact with him. We appreciate that all of you have followed the instructions for visitors to the transplant floor: no cold or respiratory symptoms for a week, no contact with anyone with a cold or respiratory symptoms for a week. We also think that it is not a good idea to bring children with you even if they are healthy. We have to be careful not only about Sameer but also about the other patients with compromised immune systems.

We continue to pray and hope for his recovery. I still believe that with the grace of God, he will recover. Thanks for your prayers and good wishes. Take care.

Kumar Bhatia

Dear Friends,

Sameer’s condition continues to remain serious but is stable. His status as of this morning is as follows:

1. He has not yet woken up. He is responding to us from time to time. When I was massaging his legs this morning, he opened his eyes for a very few seconds but closed them again. Later when Reena was holding his hand and talking to him sweetly, he opened his eyes again but very briefly. He is not able to squeeze our hands when asked. While we get very happy to see even a small response from him, we are not sure how much of it is conscious. We hope that he can hear us and the small flashes are consciously driven.
2. His temperature, blood pressure and heart rate are fine. This is encouraging since it (particularly the lack of any fever) implies that the antibiotics are working in keeping the infection in check. All his blood cultures have been negative (no bacteria growth) except for March 3, 7 and 9. They culture a blood sample for five days and generally see the bacteria growth, if any, by day 3 or 4. This means that there are no detectable bacteria in his blood at least since the 12th.
3. His white blood counts and neutrophils are a below the measurement thresh hold (they are practically zero). We need his immune system to start recovering but it might take some time (1-2 weeks) in spite of getting daily injections of GCSF (growth factor).
4. His medical team continues to weigh the risk-benefit of another lumbar puncture which will tell us if the bacteria are eliminated from the central nervous system (CNS). So far they have decided not to do a lumbar puncture due to a finite risk of bleeding and spinal injury.
5. The source of his infection was identified on March. 4 as a common bacterium called coagulase negative staph which all of us have on our skins. It does not cause problems for people with normal immune systems. Because he has no white blood cells right now, the antibiotics need to do all of the work to get him well. He was getting two antibiotics: linezolid and rifampin which have good penetration through the blood-brain barrier. They recently have replaced rifampin with a newer antibiotic called daptomycin since rifampin is known to affect the liver adversely.
6. We are concerned about his liver. His bilirubin level has increased to 17 or so. We understand that there is nothing that can be done to help the liver. We hope that as his organs recover, the liver will improve as well. In the meantime, we are feeding him some fresh coconut water through a stomach tube when possible.
7. He had been on a daily dialysis regimen of 8 hours but they have reduced it to 4 hours since 2 days ago, They are removing 2-3 KG of fluid with dialysis and his swelling (due to fluid retention) is much less. In particular, his face looks much more like him again. The kidney doctors are satisfied with his dialysis and will consider dialysis on alternate days to allow his kidneys a chance to recover.
8. They having been taking a chest x-ray every morning and his lungs are fine.
9. Sameer has a tube inserted to keep his airways clear (intubation) since the normal gag response is absent. He has some ventilator support at night (so that his lungs do not get tired) even though he is able to breathe on his own and maintain a good blood oxygen level. The doctors are pretty sure that they can remove the tube once he wakes up.
10. We have requested the doctors to review again all possible options even though they have tried already many unconventional therapies to treat Sameer. They have assured us that they will review his case again next week and see if there is anything more they can do. I have appreciated their putting up with my questions and patiently explaining the treatment options in detail. The whole medical staff has been very kind and compassionate.

We are essentially in a hold mode waiting for Sameer to wake up. As I wrote in my last update (March 9), his situation is risky due the danger of developing a lung infection which quickly proves to be fatal for most people.

We all enjoyed the Bombay family video Bimal sent to us. We played it for Sameer hoping he could hear it. It gives the impression that everyone likes to party with Sameer! We also shared the video with some of Sameer’s visiting friends as well as some of the nurses. Thank you for sending your love to Sameer and thanks to Bimal for putting it all together.

Reena and I have spent most of our time in the ICU and the hospital. Sunita has come to visit a few times to spend time with Sameer in spite of her own condition not being good. Reena’s mother has been visiting every day and helping Reena. Prashant is still recovering from a cold or flu. He has been talking to Reena and me on the phone to keep abreast, and also to Sameer once in a while. As a precaution, he is not meeting with any of us who are visiting Sameer for the fear of making us sick or carriers. He only meets people who are about to leave town after visiting Sameer. I think it is a wise precaution. He has to wait seven days after his last symptoms before he can visit Sameer.

Many of Sameer’s and Reena’s friends have taken long trips (from the east coast and California) to visit him. Melindah came on March 9 and left on Tuesday. Anamika left on Wednesday. Kruti and Anjali came on Thursday; Anjali leaves this afternoon and Kruti plans to leave tomorrow (Monday). Samir Jathwa came on Friday and is leaving today. Sonia visited for a day yesterday (Saturday). Also, Monica, Sharmila and Shana came yesterday and will leave today. I also met Jay (Bipin’s brother who lives in Seattle) waiting to see Sameer as I left the hospital this morning to go home for a shower. Several of my Seattle friends have visited also. Eli has been coming to visit regularly ever since Sameer has been in the hospital. Doug has been a constant source of support by keeping touch via phone and visits. Other friends who have come are Pran and Santosh, Ram Prasad and MP Singh. Many times we have so many people wanting to see Sameer and talk to him that they have had to take turns waiting outside. Many more friends have been following the web site and praying for Sameer’s recovery. The hospital staff and doctors have been very supportive and empathetic. I thank them all.

Please continue your prayers and keep sending positive thoughts Sameer’s way. I am sure that Sameer will recover. Take care.

Kumar Bhatia

I’ve been in Seattle, spending time with Sameer, Reena and their family since Sunday afternoon. Sameer remains in stable condition but continues to be in the ICU under wonderful, consistent care.

We are grateful and appreciative of the continuous, positive energy, thoughts and prayers all of you are providing him. Please keep them flowing! Many of you are experiencing a desire to visit – please do. Kumar Uncle, Reena, her mother, et al enjoy having you here. However, it is critical that you come with no exposure to or inflicted with the following:

• common cold
• flu
• coughing
• sneezing
• runny nose
• post nasal drip, etc.

With any of those symptoms, and bringing them into the room/ICU floor, it’s not only dangerous for Sameer but most of the patients housed there. Please be mindful of such symptoms and be well for atleast 7-10 days before visiting. Also, for those coming in, it’s important to have your own form of transportation (the easiest is renting a car) and place to sleep.

Till next, keep those prayers and positive thoughts coming Samba’s way!

Best, Melindah

All of us have spent most of our time in the ICU and the hospital. Sameer’s condition remains serious. His status as of this morning is as follows:

1. His temperature was back up to around 100F after being normal for 3-4 days. No bacteria have shown up in his blood culture for the last 3-4 days. We do not have results yet from this morning’s blood cultures. The temperature has come down now to around 99F by now.
2. His blood pressure and heart rate are stable. Both are somewhat higher this morning than they have been for the last few days - probably related to his higher temperature. This is not a cause for concern. In fact a slightly higher blood pressure helps during dialysis.
3. He has been on dialysis for the last 3 days and his kidney-related vitals have been holding steady, although elevated. However he has a lot of fluid retention and they will try to remove some of the excess fluid through dialysis today.
4. His blood oxygen level has been fluctuating in a narrow range since yesterday. Therefore they are giving him some extra oxygen through a small mask over his nose and mouth. They think that the lungs tend to collapse a bit due to a lack of motion. This also is not a cause for concern right now.
5. He has been comfortable and does not seem to be in pain. Prior to today, he was responding a bit by opening his eyes when we were talking to him. This morning he does not seem as responsive.
6. They did a chest x-ray yesterday and his lungs were OK.
7. His bilirubin level has gone up to around 7 (it indicates liver function) from 3 yesterday. This could be indicative of the stress his liver is experiencing due to the chemo he has received. The doctors are reviewing his medicines to see if they need to make any adjustments.
8. His bone marrow biopsy results have shown that there is absolutely no blood cell production in his marrow. This is called aplastic anemia. It is most likely that this was caused by the tremendous amount of chemotherapy he has received to date. Therefore it is not possible to judge the status of the leukemia. We will have a clearer picture when his marrow recovers in two to three weeks.

His attending physician is pessimistic about his recovery. He says that no one has seen as much chemo at the Seattle Cancer Care Alliance as Sameer. Even though Sameer is strong, the body can only take so much. We have told him that Sameer is a fighter and we expect him to pull through this one. We also had a meeting with all the specialists in addition to the attending hematologist-oncologist on Friday and requested them to treat Sameer in a multidisciplinary approach by coordinating very closely with each other. They said they are doing that already and will make sure that they continue to do it.

My friend Douglas Adkins, Reena and Reena’s brother Deepesh were present for the meeting. Prashant has been sick with a cold and he cannot come to Sameer’s hospital floor. He has been in constant contact to follow Sameer’s progress. Sunita (Sameer’s mother) visited Sameer last night and was able to spend a few hours with him. She has not been well herself and has not been able to visit frequently. I was concerned about how she would react seeing Sameer in this unconscious state. I have tried to describe to her Sameer’s condition but it is always hard to see your son or loved one in Sameer’s condition. She did well considering everything, and tried to engage Sameer. She also had good help from Andrea (Sameer’s nurse) who answered her questions clearly and with empathy. Andrea reassured Sunita that they are doing everything possible to take good care of him.

Swami Bhaskaranand of the Vedanta Society of Western Washington (Vedanta Center) visited Sameer yesterday. He prayed at his bedside and blessed him. Swamiji has known Sameer since he was 3 years or so old. Swamiji has been praying for him everyday as have several other devotees at the Vedanta Center who have known Sameer for a long time and are extremely fond of him. I know that all his friends in addition to our relatives and even others whom we do not know have been praying for his recovery. We appreciate all of their prayers.

Robert, Brady and Veer were here since Wednesday arriving at different times and leaving at different times. Brady was the last one to leave (early this morning). Brady has collected videos and sound clips from many of Sameer and Reena’s friends. Sameer was able to respond somewhat to them since they were loud and demanding! Deepesh also came on Wednesday and plans to stay through the coming Wednesday. Reena’s mother and Deepesh moved to a smaller (1BR) apartment from the 2 BR apartment they were renting since most of the time the second bedroom was not being used. Anamika has come last night and saw Sameer briefly. Samit is here as well since late last night, and Melindah is coming this afternoon. I look forward to seeing them all.

For any of you who want to visit Sameer, you are welcome to do so. However the infection control makes it necessary that if you have had any cold, flu or other symptoms in the previous week or have been in close contact with someone who has been sick, you cannot come in Sameer’s room. This is important for Sameer’s safety since he has no immune system at this time, and an infection can be fatal. Also, he cannot have any flowers or plants in his room, and is being fed by an IV. Please do not bring any gifts for Sameer, we appreciate your blessings.

The best scenario for Sameer is to avoid any infections or additional complications for the next 2-3 weeks until his blood counts start to recover from the chemo. The nurses here are wonderful. The analogy I have in my mind is that doctors are like gods - powerful (smart) but slightly distant and afraid of raising expectations- while the nurses are like angels. They are positive and very supportive. They bathe him, turn him, keep him from getting infections while administering all the medications, drawing blood, taking vital signs, recording everything, and constantly hovering around him all day. He has a dedicated nurse for each 12 hour period of the day. They rotate and all of them are transplant ICU nurses, which means that they are very senior and experienced. They tell us that they have seen people recover almost miraculously. While the doctors tend to explain all the potential complications and are pessimistic, the nurses deal with each case on its own without presuming the outcome while working optimistically. It is such a nice example of karma yoga in every day life.

Some of you have wondered how we are doing emotionally. Reena has been strong and has been spending all her time at the hospital. Reena’s mother has been there to support her and has been spending most of the day at the hospital. I have spent most of the days at the hospital since Sameer has been in the ICU. Before that, I would return from work a little after 4 PM and spend the evening with Sameer and Reena before going home to sleep. As you can imagine it has been very hard for all of us. I have been praying to the best of my abilities to Lord Shrinathji (Shri Krishna - our family deity) to heal Sameer.

When I go to Vendanta Center, I pray in the shrine of Sri Ramakrishna who to me is another avatar of Shri Krishna. I have been continuing to work professionally even traveling to conferences and meetings. This keeps me from worrying all the time about Sameer with unproductive thoughts. I have suggested to Prashant to do the same and spend as much time with Sameer as he can (when he is healthy) but continue his work. I encouraged Prashant to accept responsibility for a new project with very tight deadlines which now is taking all his time.

My priorities are Sameer, my family, our friends and my work. I have been thinking about the teachings of Bhagvata Gita which has been helpful to me in my life. However, my mind is unwilling to accept any separation from Sameer. I pray to God for Sameer’s recovery since it is hard for me to imagine a satisfying life without Sameer. Therefore, I am going to continue to focus on the right and intelligent action, and on praying or even demanding from God to bring our healthy Sameer back to us.

Please pardon me if I have not returned your calls. I take calls when I can but I find it harder to return calls especially the calls which require some additional work of finding and punching a lot of numbers.

Thanks for your continued prayers for Sameer’s recovery. Take care.

Kumar Bhatia

This a short update on Sameer’s current status. He was moved to the ICU on Monday (March 3) with symptoms of confusion and not being able to speak.

They have done several tests and have determined from a lumbar puncture that he has bacterial meningitis with a steph infection. This means that the bacteria crossed over the blood-brain barrier. We should get the exact subtype of bacterial by tomorrow but it most likely is an internal bacteria from his system. They also did a head CATSCAN and found no bleeding in the brain.

As bad as the bacterial meningitis is, it is not as bad as a viral meningitis. They are giving him several antibiotics to treat it. However, the treatment is complicated by the fact that his white blood count is almost nil due to the chemo. Even though he has been getting GCSF (to increase the blood counts), the doctors don’t know when his blood counts will start to recover. It depends on whether the chemo had essentially eliminated the leukemic cells. They are thinking about a bone marrow biopsy on Friday to assess the status of his leukemia. In the meantime they are watching his vital signs since all are high. He also has pain since he happened to chew the inside of his cheek which now is bleeding. He is getting medication for pain and restlessness.

Overall he is at risk. We are praying and hoping that the excellent care, his strength and everyone’s prayers will pull him through this.

Take care.

Sameer’s Feb. 19 bone marrow biopsy test results came back and the blast count was close to 50%. This was a disappointment since we needed the blast count to be below 5% to proceed with the next transplant. The two doses of Mylotarg did not work as hoped.

It has been a rocky ride. Sameer had to go back in the hospital on Feb. 17th (Sunday) due to a fever. He was home for just over a week (Feb. 8 – Feb. 17). He developed a fever probably due to an infection which is being treated with a combination of antibiotics. The infections were cleared but he still has fevers and a headache. The medical team said that in the case of low immunity, many patients have fevers for which they cannot find any cause. His blood counts continue to be low and he continues to get transfusions.

For the Presidents’ Day weekend, we had visits from friends from Monkeybin collectively known as the Monkeys (Brady, Nick, Robert and Dayal), Liz, as well as Laxmi and Trey, all from the Bay Area. We all had a nice time together over the weekend in spite of the fact that Sameer had to get back in the hospital on the 17th.

Some complications from the past chemotherapies in addition to the fevers and headaches, are showing up. Currently Sameer’s bladder was found to have clots making it painful for him to pass the urine. They are irrigating his bladder to remove the clots. By the grace of God, the rest of his functions are well within the normal ranges.

Sameer is continuing to stay in the hospital. They are trying a new chemotherapy regimen consisting of chlofarbine and ara-c starting today. The current course is for five day. We hope that with this treatment the blast cell count will be less than 5% for a sustained period to allow a cord blood transplant to be successful. They will check the blast count with a bone marrow biopsy on day 14 and then on day 28.

As is easy to imagine, the treatment is very hard on the body. We pray to God to give Sameer the strength to get through this ordeal, minimize the side effects and make the treatment effective so he can recover completely. Thank you for your continued prayers, blessings and good wishes.

We’re HOME!

I was able to convince the doctors to let me out on Friday. Their plan was Saturday until I pointed out that I’d hit my caloric goals. I also mentioned that my mom-in-law and Deepesh (brother-in-law) just arrived - and my friend Neil Butani was scheduled to arrive Friday night - so it would be really great to be out on Friday. After a second of thought and glances exchanged, they said, “Yeah, what the heck. Friday and Saturday are the same thing.” So by evening we were out!

Nearly seven weeks in the hospital…it’s quite a haul. Your legs decondition (I’m really sore after just walking around for a few days) and the bed that felt comfortable week 2 is concave and constantly hurts your back. But as I thought about it more, I realized how fortunate we are. In most hospitals, you are not allowed to be outpatient if you are neutropenic (low blood counts; no real protection against infection). Since I’m going to be neutropenic for a long time - we’re purposefully knocking down all my counts, including the blast counts - we (Reena and I) would probably be in the hospital for 6 months!

I’m 10x better now that I’m home. I have some control over my sleep since no one wakes me up every 2-3 hours. (However, sleep is a problem due to the manic side effects of the high-dose Prednisone I’m on for the GVHD.) Of course, being in control of my schedule, which largely consists of clinic appointments and as much work I can squeeze in. And spending quality time with my family, as opposed to 1-2 hours per day in the hospital when they come to visit, is paramount.

As an additional note, we had a very interesting clinic appointment with Dr. Bedalov, our attending who has been fully vested in carefully crafting an aggressive and unconventional treatment plan for me. He presented a new chemo clinical trial that he is very optimistic about in the event that Mylotarg doesn’t put me in full remission.

As my father has always said, the longer I can hang in there, the more options emerge. Here’s to hanging strong. Due to the benefit of youth, my body and I can tell our team to bring it on!

Dear Friends of Sameer and Reena,

As most of you know, Sameer has posted his latest update on his blog (www.helpsameer.org) on Feb. 7, 2008. The basic news is that his leukemia is not in remission and he needs additional treatment to get it in remission. Once he is in remission they are likely to opt for a cord blood transplant.

His stomach is much better and he is able to eat a little bit in the last few days. Last night he was allowed to leave the hospital after almost six weeks except for a small break. He is happy to be home and is in good spirits. Reena continues to take excellent care of him and administers many medications several times a day according a complex set of instructions. She also records his diet to make sure that he gets the required minimum number of calories and protein. He is getting the best possible care on all accounts and we continue to be positive for his full recovery.

Sameer was happy to see Maltibehn (Reena’s mother) and Deepesh (Reena’s brother) who arrived in Seattle late Wednesday night. He was also delighted to see his friend Neil Butani who flew over from Louisiana for a quick visit for the weekend. We all spent time together with Sameer in the clinic today where he was getting his daily blood count checkup and then received platelets.

I believe that the next bone marrow biopsy will be on Feb. 19. We pray for a sustained remission by that time so he can get the second transplant, and recover fully. Thank you for your blessings, prayers and good wishes.

Kumar Bhatia

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

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

Dear Friends of Sameer and Reena,

We were looking forward to the results of the bone marrow biopsy from yesterday (Jan. 23). We did get the results today and there are 31% blast cells. This will delay the DLI on which we are relying for recovery. The current course of action is to give Sameer Mylotarg with the hope that it will provide a temporary reduction in the leukemic cells to make a DLI successful. Sameer will get a dose of Mylotarg today and then they will wait for a bone marrow biopsy on Feb. 5 to confirm that Mylotarg has done its job. All else is ready for the DLI.

We were very happy with the bone marrow biopsy of Jan. 14 which showed a 2.3% blast cells which is well within the 5% or so limit for a DLI procedure. It now appears that the Jan. 14 results were most likely from a pocket or cluster in the marrow where the leukemic cell percentage was low. A pelvic MRI to check the GI irritation and swelling, coincidently done at the time of the Jan. 23 bone marrow biopsy, showed pockets of leukemic cell clusters. It is good that we found out that otherwise the DLI most likely would have been a waste since a DLI has a better chance of success when the leukemic cells are lower in number.

The last month has been difficult for all of us. First we had the relapse, followed by a difficult chemo procedure and the resulting stomach complications, and the worst of all the lingering leukemia. In spite of all these setbacks and discomfort, Sameer remains mentally strong. His blood  counts have started to increase and as a result his stomach is slightly better. You can read Sameer’s blog for the his detailed descriptions and perspectives.

We believe that he will recover from this illness but we just don’t know when. Please continue to pray for Sameer’s full recovery. Thank you.

Kumar

The GVHD test for the gut was redone in the past week and the GI team concluded that there was no GVHD. Good news.

My infection seems to have finally cleared several days ago and my temperatures were once again normal. Good news.

After finally getting to a Blue Shield case manager (who is great), Reena managed to push through approval for DLI.  More good news.

By some strange intuition, my inpatient doctor, Dr. Anderson, suggested that we do a bone marrow biopsy yesterday before doing DLI (a one-shot treatment) today. Given the previous 2.3% result, we were all very confident that the Sutent was working and were betting the new result would show that there were only 0.5% blast cells present in my marrow. In fact, the mood during the biopsy was jovial and almost a bit carefree.

The results came in today. I have 31% blast cells in my marrow. Very, very surprising news.

The only explanation (backed up by an MRI done for another reason) is that my leukemia is growing back in pockets. So the last biopsy, the one with the magical result, must have not drawn marrow from one of those leukemic pockets. Also, the sutent is not working - it didn’t turn out to be the silver bullet we’d hoped for. All of this is unfortunate and certainly not what we were hoping for. But God doesn’t always give  us a result we want when we want it. Perhaps he wants me to prove that I am a true fighter no matter what I’m faced with.

Putting the past behind, the plan forward is to use Mylotarg, a very targeted chemotherapy. Mylotarg’s function is essentially to bind to the CD33 protein on leukemic cells and kill those cells in one of four ways. I don’t remember all of the methods by which it works, but I do remember that one involves mylotarg literally poking a hole to kill it. The mylotarg option is only available to  us because my bad cells have the CD33  protein that mylotarg.

Mylotarg has a 30% chance of getting me full remission. Unfortunately, the medical team cannot give me the full dosage since I have had TBI (total body irradiation) as part of my pre-transplant regimen. A full dose would put me at risk of liver failure. But we’ll work with what we have and make the best of it, right? :)  If mylotarg doesn’t work over the next 14 days, I may receive another dose or the team may explore chemo options that have some chance of getting me back in remission so that we can do the DLI.

Thank God Dr. Anderson had the presence of mind to do a bone marrow biopsy prior to using up our DLI cells. I’m still in the hospital and will be here at least through the weekend. The mylotarg bag has just been hung; let’s pray for the best. Whatever happens in the end is God’s wish regardless.

I’m very grateful for all of your love and prayers. They are still overwhelming for me - in a good way, of course - and sustain the strong fighter in me. With all my love, Sameer.

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