Help Vinay & Sameer

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.

I thought it might be interesting to review a brief history of how I’ve spent my last few weeks.

• On December 30th, when Kruti and Nisha were visiting from NYC, I had been shivering and Reena finally insisted on taking my temperature, which showed I had a fever of 102.8. This meant that instead of going to see the famous Christmas Lights in Seattle, we all went straight to the hospital. Over the next several hours, my fevers climbed to 105.4 and my blood pressure dropped. This is considered a septic infection so I was not allowed to go home after 4 hours as I normally would be.
• Prashant and the girls threw a very memorable NYE party in our tinsled-out hospital suite, replete with costumes.
• My total hospital stay ended up being 2 1/2 weeks. My fevers had finally subsided toward the end of that period and I was very anxious to get home and be up and about. I had been experiencing proctitis (severe rectal swelling and pain) for my entire hospital stay due to my earlier chemo, and there was apparently no way to treat it (other than to treat the pain). It would have to heal on its own….it has improved but continues to be a constant source of discomfort. I’m getting through this by just reminding myself out loud 2.3%!!
• During these 2 1/2 weeks, we had another set of surprise visitors: Adarsh, Samit, and Suneet. These are three guys you could stick in a room and they would laugh at absolutely nothing for hours on end. As you can imagine, the perfect visitors. No sooner than they had laughed for 2 days, I suddenly walked into my room after a brief walk to find a full-blown Superman party! Prashant and the boys had spent the entire afternoon buying all sorts of Superman paraphernalia, including a pinata!! I was quickly dressed up in a full Superman outfit, plasticy perfect hair and all. Needless to say we all had a fun night. More importantly, the Superman shtick worked: I found out days later that my blasts were down to 2.3%!
• I was discharged with no counts on Wednesday (the 16th). But my doc did chuckle and say that he’ll probably be seeing me very soon. The highlight of my discharge was getting to spend time with Veer, an old friend. We must have not spent that kind of time together in ages….
• We had a full day at the clinic on Thursday (Papa, Reena, and I) and when I went in to get some platelets infused, they went out to run some errands. I started having pretty severe, uncontrollable chills. The team looked at me and said that can only mean one thing: there’s bacteria roaming around somewhere. They quickly put me on two antibiotics and called for, get this, an ambulance to transport me to the UW Hospital! I guess I needed to be observed. So yet another new experience for me in this journey.

Here we are, back at the UW. Luckily everyone knows us and treats us very affectionately here. But they keep telling me to call to meet them socially - not medically - if I really miss them that much!

Here’s the going-forward plan and its nuances: there was very strong suspicion that the proctitis was GVHD, in which case we could probably not move forward with DLI since the GVHD could turn fatal. This would have been a major blow since we have a window of opportunity here where my blast counts are low. However, a second set of biopsies (taken from scopes from above and below) ruled out any signs of GVHD. We’re trying to get the two pathologists who analyzed the biopsies to reconcile the results. Assuming we get a consensus green light, we’re set to go forward for DLI on Tuesday or Wednesday. But there’s one more wrinkle: the infection I was readmitted for seems to be the same e-coli that I took 2 weeks of antibiotics for already. That has to clear before DLI can take place as well.

So fingers crossed the the GI pathologists have some explanation for the drastic change in their readings a week apart and that the infection is wiped out once and for all (although that may be too hopeful - this is bacteria crossing from my traumatized stomach to my blood stream). As for the DLI itself, I had all sorts of plans to gain weight and get in good shape for it. Instead, I’ve lost another 10 lbs and don’t even feel like walking because of the proctitis. Hopefully, the DLI will ignore those shortcomings and just go straight for them @$&&*@ leukemia cells and kill them off once and for all!!

10 days ago, my bone marrow showed 19% blast cells. Things were looking rough as I need remission for DLI to work optimally.

Today, my bone marrow showed 2.3% blasts!! What the…? There was no chemo in the interim, just the Sutent (which blocks replication) and perhaps some remnant chemo effects. But I am back in remission!!

What I must explain about this is that this was a very unlikely and improbable result. I still don’t see any solid medical explanation for it, and odds were that at best, the leukemia should have stayed stable or grown significantly. But certainly not shrunk to such low levels!!

The doctors were shocked. So much so that they had not even prepared discharge orders just assuming I’ll need to steay to receive Mylotarg tomorrow to bring the blasts down. I cried in disbelief at the results. Papa, Reena, and Prashant were simply overjoyed in a peaceful way. Swami Bhaskarananda said that “miracles happen; a lot of people are praying for you”.

I’m still reeling in disbelief. This means we can go straight to DLI instead of needing additional chemo or Mylotarg, a valuable weapon to save for later (just in case).

Now I just need to get out of this hospital and get active again. I’ve become a bit weaker….but certainly not mentally!!!

THANK YOU FOR ALL YOUR PRAYERS - THEY ARE THE ONLY EXPLANATION FOR SUCH MIRACLES! I LOVE YOU ALL VERY MUCH AND AM ETERNALLY GRATEFUL.

Dear Friends of Sameer and Reena,

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.

Dear Friends of Sameer and Reena, 

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