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     UNITED STATES
      
     Nishant Sharma
     8 Mead Street # 2
     Allston MA 02134
     USA

     Ph.:
     Mobile : 858-229-3427
     Landline: 617-987-2383
     E-mail :      contact@savesukriti.org

     INDIA

     Dr. Ravi Pathak
     FC-125, Tagore Garden
     New Delhi - 110027
     INDIA

     Ph.: + 91 - 9810412536
     E-mail :      contact@savesukriti.org

Questions specific to Sukriti's case              ||              General Bone Marrow Transplant FAQ's

What type of cancer does Sukriti have?

• Sukriti has Acute Myeloid Leukemia (AML). AML is shorthand for acute myeloid, acute myelocytic or acute myelogenous leukemia. AML is very rare in children, accounting for 2-3% of all pediatric leukemias.
  
  (AML) is the most common leukemia in adults with some 10,100 new cases annually. AML accounts for just under half of cases of childhood leukemia. Although leukemia starts in the bone marrow, it can spread to the blood, lymph nodes, spleen, liver, central nervous system and other organs. It does not usually form a solid mass or tumor.Risk factors can include smoking, radiation or chemical exposure, prior chemotherapy and certain pre-existing conditions or infections. Numerous symptoms, from bruising to bone or joint pain can give a physician reason to test for AML.
  
  Treatment is directed toward achieving complete remission and usually consists of chemotherapy conducted in two stages. The first stage is to induce remission and the second stage it to destroy any remaining leukemic cells. In case chemotherapy fails, the only other form of cure is a stem cell transplant (either a matched related/unrelated stem cell transplant or a cord blood transplant).

"I've heard bone marrow transplants happen in India?" Why can't Sukriti be treated in India?

• You are right- related bone marrow transplants are conducted in India mainly by 3 institutions - Tata Memorial (Mumbai), CMC Vellore (Vellore) and Apollo (Chennai). However, Sukriti needs an unrelated bone marrow transplant that none of these institutions currently provide. These unrelated transplants are typically carried out in US, UK, Australia and Singapore. The cost of this transplant is really high and therefore we are trying to raise funds to support Sukriti's transplant expenses. (For more information on transplant costs click here)

What is the difference between an unrelated and a related transplant?

• The difference between a related and an unrelated transplant is that in a related transplant, you have either a sibling or one of your parents as a matched donor. When the gene profile of the donor matches with that of the patient, a related transplant is possible. Otherwise, an unrelated transplant needs to be carried out.
  
  In Sukriti's case, her brother Ishan is not a match and neither are any of her parents. Therefore, her gene profile needs to be matched with that of an identical unrelated donor (possibly in any part of the world). Typically each country is linked through a worldwide registry of donors, who have enrolled in the registry as potential donors for unrelated transplants. Currently, India doesn't have this registry and therefore unrelated transplants can't be carried out in India

How soon does she need to go into transplant?

• Sukriti will need to go into a transplant as soon as she goes back into remission after this round of chemotherapy. This could potentially be anywhere in the next 3-6 weeks.

General Bone Marrow Transplant Questions

What is NMDP?

• National Marrow Donor Program is a federally supported organization that assists in locating unrelated donors.

What exactly is a marrow / stem cell transplant?

• Simply, it is the replacement of diseased marrow with marrow from a health donor infused into a patient's vein just like a blood transfusion. Within two to three weeks the transplanted marrow / stem cells begin to produce normal blood cells in the patient.

Is marrow/stem cell transplantation a proven technique?

• Eighteen years ago marrow transplants were done only as a patient's last hope. Today,
  thousands of lives are saved every year at approved medical centers worldwide.

Which diseases can be treated by marrow transplant?

• Over 50 diseases including the leukemias, aplastic anemia, severe combined immune
  deficiency, sickle cell anemia and radiation poisoning are treated by marrow transplant.

What are the actual chances of finding a suitable marrow or stem cell donor?

• The odds are 1 in 20,000 to 1 in a 100,000 in identifying an unrelated compatible marrow donor… much higher, however, for patients of minority heritage. YOU could be that special life-giving person!

Are donors matched only against American patients?

• No, the patient could be anywhere in the world. Many American patients have found donors from International donor sources.

Who can become a marrow / stem cell donor?

• You must be between 18 and 60 years old, have no history of hepatitis, heart disease,
  cancer or AIDS, and sign a consent form allowing the Registry to include your HLA tissue type in its confidential files for future matching. See following NMPD link for details: Donor information (NMDP) and Donor Eligibility Guidelines

And it only takes a simple blood test to get started?

• Once the consent form is signed, YES, it's that simple. The remaining sample is frozen
  to be used for second level testing if you should match at the first level. Of course, your
  consent to do so would be obtained.

Where is the blood drawn?

• The blood is drawn at a laboratory in your community, or by your personal physician.
  Complete instructions are included with the kit. If you attend a community sponsored event, a licensed phlebotomist will be responsible for drawing your blood sample.

How do I know if I am a match?

• If you are found to be a possible match with a patient, the center in which you tested and/or the NMDP will contact you immediately and give you the option of proceeding to the next level/s of testing to insure final HLA compatibility with the patient.
  
  Proteins called antigens are found on the surface of the white blood cells and other body tissue. Particular antigens, named HLA-A, HLA-B and HLA-DR are essential to the success of stem cell transplants. These antigens are used to "match" a patient with a donor. When looking for a match it's important to remember that people of the same race and ethnic groups are more likely to match each other. The odds of matching another person vary widely depending on the rarity of your tissue type. This means many volunteers may never be called. However, if you are identified as a match for someone, you may be the only person who can provide life-saving stem cells for that patient

Who pays for these tests?

• Not you - the patient or his/her medical insurance does.

What happens if I am a match?

• If the match is confirmed the transplant can be scheduled but only with your legal consent after in-depth counseling and a thorough physical examination.

Okay, now tell me how my marrow is collected?

• Two procedures are available for stem cell collection:
  
  1. Peripheral blood stem cell collection (MOST current and common method)…..You are given small injections of Neupogen/Filgrastin for 3 to 5 days to force your marrow to overproduce marrow or stem cells which are then released into your circulating blood. The stem cells are collected by removing blood from a vein in your arm, passing it through a filter system which collects the stem cells and returns the remaining blood to you…a 2 to 3 hour procedure.
  2. Marrow harvest ….You are given light general anesthesia so that you feel nothing during the procedure. Only 2% to 3% of your marrow is withdrawn from the large crest of your hip bone through special sterile needles .. a 60 minute procedure. You may go home the same day.

Are there any risks or side effects?

• Peripheral blood stem cell collection (PBSC) .....You might experience some flu- like symptoms, slight bone pain, or a feeling of heaviness during the injections. These discomforts usually disappear soon after the collection is completed. This will be discussed in detail with you.
• Marrow harvest.....Other than the remote chance of a reaction to anesthesia or an infection the risks are minimal. This will be explained to you in detail. You may experience some soreness in the lower back.

Can I withdraw as a donor any time I want to?

• Up until the time you provide us with your final, legal consent to proceed to harvest. Yes,
  but we hope that you would not want to change your mind as too much is at stake for the patient needing your help, and because you are a educated, committed donor.

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