Mama Knows Best!

Friday, Niru Aunty (Alpen's mom) left Miami to join Alpen in Boston. A list of a few items she brought with her: a new winter coat to brave the Boston winter, some paintbrushes to bring life into Alpen's hospital room, and fierce healing power that only exists in a mother's hands. With General Nirupama Sheth in town (the true commander-in-chief of Alpen's white blood cells), we can all rest assured that Alpen will be entering the hospital on Monday with the best team possible.

While Niru Aunty pledges to return to Miami in December looking younger and healthier after her Boston adventure, her other-half, Suresh Uncle, might just put on some pounds while she is gone. With no one around to monitor him, Uncle's daily gathiya intake is sure to increase by a few fistfuls (laced with methi of course) and by god, there will be chocolate!!



Seriously family, Suresh Uncle is going to be holding down long 12 hour days at the Indo-American Store so make sure you give him a call every now and then (305-382-7570) to say hi and help him get through the long days. If you are local, stop by sometime, you might just have a laugh and go home with some ayurvedic medicine/spices to cure your ailments. (And if you don't think you have any ailments, ummmm it really doesn't matter what you think.)

In other news, word is, the Boston gang:Alpen, Sushma, Palak, Rahul, Niru Aunty, Rohini Aunty, Ravi Uncle went to an amazing Pandit Jasraj concert tonight. Alpen must have been in heaven.

Between the love pouring in from around the country, music, laughter, food, and family---our bodies, minds and spirits are slowly getting ready for the journey ahead....

Harvest Pix, including our friend Marty

These pics are of Alpen during the harvest process. Note his new favorite pastime: anatomical and medical drawings.

The Harvest of Champions

Yesterday, doctors and nurses across the floor of the Kraft Blood Center scavenged for every last drop of Alpen's blood. His crimson tide was rumored to be teeming with fenugreek, sudharshan churna, as well as gold dust from the Esperanza mountains of Honduras and cafe con leche from West Havana (aka West Kendall) in Miami. The goal was to collect over 2 million of Alpen's white blood cells per kg of his weight over the course of the week.

For weeks we have been preparing Alpen with wholesome food, regular accupunture and cranial sacral treatments, deep massage, pep talks/nagging, and oodles & oodles of love.

Alpen has been preparing by leaving Miami, hanging out with old college friends now attending Harvard and MIT, attending lectures on the presidential race and the financial crisis, hour long drumsets .. on his tabla, and almost daily visits to Wagamamas (if you do not already know Wagamama -- you will).

So when Rahul woke him at 5am Monday morning with his daily injection of Nuepagen, he was not only awake, but ready to get these bad boys out of him. Nuepegan is one of the drugs Alpen has been taking to keep his white blood cell count high and his immune system strong so as to avoid infection or getting sick.

At the hospital, they performed a series of blood tests to count his cell. They wined and dined us with OJ and bagels. Nurses and doctors look for particular protein that helps measure how many white blood cells you have. We needed 4 to 5 for them to proceed with the harvest. When the blood test result arrived, his count was 86.

Late last night, we received a call from the transplant nurse. The lab results were in. We had a week to collect the 2 million stem cells needed to be frozen and returned to him as part of the transplant.

Alpen produced 10 million white blood cells (per kg) in just one day.

Needless to say -- It seemed as though Alpen is brewing white blood cells and his bone marrow was working overtime. Also, Alpen has been well cared for and prepared for the adventure ahead -- so I want to give a shout out to everyone that has been taking care of him here in Boston: Palak, Rahul, Vivek, Rohitbhai, Rohini Aunty and Ravi Uncle .. and, of course, Bone Marrow Bhai!

For those of you who want to Wagamama with Alpen, come by and join us in Boston, or find the nearest location here.

Its Harvest Time!

I just got off the phone with Alpen and Sushma, who are just leaving the hospital. Good news! Alpen successfully completed his stem cell harvest today. He is a little tired and worn out from having his blood pumped in and out of his body all day (from 7:30am - 6:00pm) but he is in good spirits and as usual is making jokes and complaining about Sushma's eye-rolling. (Now can't fault him there--I think we all have suffered from the infamous Sush eye-roll).

The nurses/doctors say they don't think he will have to go back to the hospital tomorrow for more stem cell harvesting, but they will let us know for sure tonight or tomorrow. So that means Alpen is hospital free for the rest of the week! If things stay on schedule, the inpatient part of the transplant will begin as scheduled on Monday, October 27th.

Besides a little bit of body/bone pain and reduced energy, Alpen says he has been feeling pretty good since the effects of the Cytoxan chemo from last week started to wear off. He has been able to eat pretty much anything and has been having loads of fun between the daily visits from friends and family (Jess/Nilesh and Rohan--see the pic, Vivek, Rohit, and others); outings to art museums and crew competitions, and fabulous eating excursions across the city of Boston with the fam and friends. Not to mention his culinary experiments at home---I think he was throwing down some yummy coconut curry and basil potatoes last week.

Sush just got to Boston on Saturday, so that has been great as we all know how much love Sushma always bring with her. It's also was good timing as Palak is in Midterms this week and so Sush's arrival will free Palak up from her daily obligation to have a late-night conversation about capitalism with Alpen

Alpen's Treatment Schedule

This information comes from our very own Dr. Rahul Sakhuja....

Alpen's Chemo Schedule

• Friday, October 10 -- Cytoxan/Mesna. Chemotherapy. High dose. The point is to "prime the bone marrow" or kill the cancer without killing the stem cells, while he prepares for the stem cell transplant. He will be in the infusion unit all day between getting chemo and IV fluids. He will also take 3 pills to protect his bladder from the toxicity of the chemo. Afterwards, 5% of pts have nausea/vomiting, usually occuring 6-12 hours afterwards. Throughout the weekend, he will need to drink LOTS of water to flush his system out. If he is too nauseated to do so, we will bring him to the hospital to get IV fluids (i.e. fluids through his IV).

• Sunday 10/12-10/20 (at least), because the Cytoxan will cause his blood counts to go down, he will get (high dose) Neupogen injections (similar to the Neulasta he took in Miami) to try to bring his white blood cell (that fight infection) back up ASAP. These are injections that we can give him at home (and Alpen can even learn to give himself) right under the skin without much pain at all. This medication can make people feel a bit flu-like, but often has no side effects. His blood counts from the Cytoxan are expected to drop significantly by 10/16, at which point, we will return to DFCI to get blood tests. Should Alpen NOT have a temperature >100.5, he will stay out of the hospital this entire time. He will be on preventive antibiotics for this entire period (10/12-10/20). If he does have any hint of a fever, we will have to take him into the hospital. If his blood counts are low on 10/16, he will get transfusions.

• Usually, after 10/16, from 10/17-10/20, his white bloods cells (that fight infection) will rebound to normal with the continue Neupogen. During this time, he can have bony pain, usually worst for 3-4 hours total. Again, he also may feel a bit flu-like.

• On 10/20, he will start the process of the stem cell transplant. We will go in at 7am on 10/20 and they will do a series of blood tests. If the tests are not at the right level yet, he will go home and come back the next day. If the tests show them what they need to see, then he will remain in the infusion unit for 6-7 hours, during which time, the IV that he already has is hooked up to a machine, through which his blood circulates before going back into his body. This machine takes out the stem cells. They need ~2 million. Usually, people have to come back the next day to get enough stem cells, but in young people like Alpen, sometimes it only takes a day. In 10-15% of patients, they cannot get the stem cells, in which case there are other methods (another experimental medicine and if that doesn't work, a small surgery to get them).
  

After that, he will rest and allow the Cytoxan effects to wear off.

Bone Marrow Transplant Details
If everything goes according to plan, he will be admitted to the hospital sometime on 10/26 (they will call us on that day to let us know what time to come in, usually you have to wait for a patient who just completed his/her transplant to go home, so end up going in around 5-7pm). On that day, he will basically get blood test, hooked up to IV fluids, and meet the bone marrow transplant team. The team consists of physician assistants, the staff/attending physician, and nurses (no residents or fellows, i.e. training doctors). He will be restricted to 1 section of 1 floor in the hospital, that he will not be able to leave for ~21+ days. During his hospital time, he will have a private room with wireless, a bed, a lounge chair, a private bathroom, a DVD/TV, and a private refrigerator. He will be able to shower, etc every day. He will be on a strict hospital special diet. All visitors will need to wear a mask and gown in the room. If he is walking the hallway outside his room, he will need to wear a mask.

• 10/27 is call Day -7 (as it is 7 days BEFORE he is expected to have his stem cells transplanted back into his body). Again, on this day he is admitted to the hospital

• 10/28-10/31 (Days -6 thru -3): Alpen undergoes high dose chemotherapy. Unlike the cytoxan, these medications kill all the cancer cells most importantly, but some of Alpen's own fast growing cells (hair, GI tract...thus, the side effects), as well as the stem cells (thus the need to retransplant them after the high-dose chemo. Three medicines, 2 of which are given both in the AM and PM. Basically, for 24 hours/day over this time period, he will be connected to multiple IV pumps (which will allow him to walk to his bathroom and around the room (and even outside the room with a mask, probably)).

• 10/30 around this day -4, he will start to feel sick (maybe earlier). While he was likely fatigued before, he may now get worse nausea/vomiting, stop eating, and require some light sedating medications to help him sleep.

• 11/1 Just mesna (not a chemotherapy, but a medicine to protect his bladder from the toxicity of one of the chemotherapies).

• 11/2 Just "chill"

• 11/3 This is called "Day 0." This is the day that he will have his stem cells retransfused into his body. He will be hooked up to some monitors. The number of bags of stem cells depends on how many times it took to collect them (which happens between 10/20-10/23). Each bag takes 15 minutes to infuse. Most people don't feel anything. Depending on the number of bags, may take morning and afternoon, and rarely multiple days.

• 11/3-11/8 (Days 0 to +5). Many people say these are the most miserable days of the transplant. During this time, he may feel the side effects of the chemotherapies kicking in mouth sores, sore throat, nausea, diarrhea, rectal pain from diarrhea. All of these things will be aggressively treated with pain medications by pills, then IV if that is not suffcient, and then a pump that Alpen controls if that is not suffcient. These days, there are great medications that are quite effective against pain and nausea, which is great. I would still expect that these will be the toughest for him. Also, it is during this time that he will likely have fevers, require many blood tests and x-rays (often which don't find the source of the fever), and get treated aggressively with a broad spectrum of antibiotics. Other side effects of the chemotherapy usually resolve and are not often felt (i.e. any effect on kidney or liver, for example). He will be getting aggressively hydrated with massive amounts of fluids through his IV (up to 7 liters per day), so he will likely gain weight and swell up a bit in the ankles, etc. He may require some medicine to help him urinate enough so as not to get too swollen. During the hospitalization, he will likely need transfusions every 2- 3 days.
  

• 11/8 Day +5. Restart Neupogen (regular dose this time). Start to get his stem cells to start producing all of Alpen's own cells (without the cancer cells)

• 11/10-11/13 (Days +7 to +10) Expect his stem cells to start kicking in and his immune system to start to come back. Usually, can stop some of the medications, like Neupogen and some of the other medications.

• 11/17 (Day +14) Time to leave the hospital!!!! The criteria are: 1) WBC (white blood cell count) > 2-3K, 2) able to keep down a lot of fluids without vomiting, 3) able to eat a little bit at least, 4) able to climb a flight of stairs.

Life After Discharge
After he gets discharged from the hospital, as Lieutenant Purvi Shah, Esq knows from her deep understanding of the transplant book, there are still restrictions. Basically, it is as follows:

• 1st month: He will feel tired and weak for 4-6 weeks. Restricted to home, car, outside. The most important thing is to use common sense -- stay away from people with sicknesses (or at least wear a mask around them). Everybody who comes around him should have washed their hands!!! He cannot go to restaurants, or any enclosed space with crowds of people. If he were to take a cab or on his return visits to the doctor, he would have to wear a mask and gloves. The nutritionist will have met him in the hospital. Upon discharge, it matters less how the food is cooked, but rather how it is handled! That means that all food has to be prepared by Alpen or the family. He cannot eat take-out. He must eat fresh foods, no left-overs. He must maintain good hygiene.

• 2nd month: He can now eat take-out, but still cannot go to restaurants. Dr. LaCasce is a bit more flexible, such that towards the end of the month, if all continues to go well, he can eat at "good" restaurants and go to restaurants at "off peak" hours, when they are not crowded. If he is in Miami at this time, which is likely, he will continue these precautions with follow-up labs, etc as per Dr. LaCasce and Troner. He will check in with Nurse Kathleen periodically by phone. If he ever had a question as to whether he was "allowed" to do something, he could always call Kathleen and ask her.

• 3rd month: Off restrictions if all goes well. He may be completely back to his normal self, although for energy, etc to return fully, often takes up to 6 months. But, still...no restrictions!!!

After discharge, Alpen will still be on a few pills. 1) Folate, 2) Acyclovir (antiviral to prevent chickenpox from coming back) x 18 months (three times per day), 3) Bactrim (antibiotic) x 12 months, 4) +/- antacid, 5) +/- other supplements. At 1 and 2 years post, transplant, he will need to get his vaccinations again.

PLEASE NOTE!!! With regards to further radiation, this is a question that is still open-ended and will be decided by Drs. LaCasce and Mauch (Radiation Oncologist) at some point. Should he need this, it would start 1 month after discharge at the earliest. It could be either at DFCI or in Miami (would recommend DFCI). It is not clear how long this would last.

Otherwise, he would get another PET after 3 months and every 3-6 months thereafter. If he continued to see Ann, he would do so every 3 months, though often, he can just be seen by Troner with the results of the visit communicated to Dr. LaCasce.

I think that summarizes most of what is happening and is going to happen. Hope this helps everybody understand the process Alpen will be going through!

Much love,
Rahul

The Return of the Artist

So, many of you know that Niru Aunty (Alpen's mom--if you don't know already) and I share a passion for art. It has been years since I have been art-ing, but recently, I have seen the resurgence of art in my life. Here are a sample of a few of my current paintings--the first one is called "Balance" and is a favorite of my Dad's and the other "El Beso" was a gift for a Palestinian friend. I should let you know that my harshest critic is none other than Alpen himself---his thoughtful and at times brutal opinions regarding the colors, proportions, and complexity of my paintings are a much loathed (yet appreciated) response to my over-eager "do you like it?" Geez Alpen, couldn't a simple "yes, it's nice" suffice?

The Debut of the Alpen Repor(t)

Hello Dear Loved Ones of the Shah-Sheth Family:

I have started this blog so that everyone can stay updated on Alpen's progress as he undergoes a bone-marrow transplant at the Dana Farber Cancer Institute.

Please use this blog as an opportunity to catch up on Alpen's latest doings, or to send him good wishes and love as he gears up for the transplant. Feel free post interesting readings, links, or photos of your doings. We will be posting, and when he is up to it, Alpen will be posting the same as as well.

Our greatest strength in this family is our closeness and love. While it may be difficult to touch base over the phone with Alpen over the next few months, I hope you will use this blog as a way to stay in communication with him and with eachother.


Yours,
Purvi