Stem Cell Donation

I have been reading tweets & RT from a number of people mainly Dilip about the requests for Stem cell for a friend of his.

Whilst, I have no objection to spreading the word around by way of tweets and FB requests, my question was – Will this help Nalini in the timeframe required?

Coincidentally, I met Dilip yesterday evening & raised the question to him. Fortunately, there were other people also around who agreed, that it was possible to quickly organise a camp, which may be a way to help Nalini and some others too.

Dilip has been kind enough to provide details that may be the first step.

Dear all of you good folks,

Good to chat this evening!

I’m appending an appeal I’m sending out about Nalini Ambady. It covers most of what this is about. There’s some stuff that people should be fully aware of before signing up. Forgive me if you’ve already seen this.

But about a drive: I’m all for it. I have some 250 kits with me, I’ll be glad to bring them along and get the swabs done. Give me some thoughts on a place/time. Thanks!

yours,
dilip.

Some of Nalini’s good friends here in India are trying to push this effort any way we can. (I’ve known her for 25 years, her husband Raj was my buddy in school). A few days ago we ran across a nearly identical effort for a Karthik Shankaran in Chennai. I don’t know Karthik, but the need is just as urgent for him. I’ve been in touch with him, because I thought we should try to pool our efforts.

Please read what’s below carefully and you should have a good idea of what’s involved. Below the appeal is a short note on a drug you’ll have to take and the donation itself (i.e. both things, only if you’re a match and you’re called in to actually donate). Of course, let me know if I can answer anything else. You can call me, 022-2642-7793 or 098-1913-8001.

(http://www.swab4karthik.com/faqs/ and http://marrowdrives.org/bone_marrow_donor_myths_faqs.html also have info)

If you think you are willing to sign up in the database — AFTER reading what’s below! — give me a call or just come over and do the swab.

My good friend Nalini Ambady, prof at Stanford U, needs your help. See the web site www.helpnalininow.org and Facebook page of same namewww.facebook.com/HelpNaliniNow — it will tell you about her, her situation and what ‘s been done so far. Short version: she needs a stem cell transfer and she has failed in efforts to find a donor in the US. So we’re now trying here in India. Both to find a match and to get people to sign up with Indian stem cell databases so that the chance of a match increases. (In nearly the identical predicament is Karthik Shankaran,swab4karthik.com).

There is an age restriction: donors must be between 18 and 50.

There are two databases of donors I know about in India: DATRI (www.datriworld.org) and MDRI (www.mdrindia.org). Somewhere on the DATRI site you can sign up to have a kit sent to you, you use the enclosed swabs to do a cheek swab and send the result back to them with a Rs 2500 fee. Simple. (There are some resources available to cover that fee for those who cannot pay).

===> NOTE: To make things simpler, I have ordered 300 of those kits from DATRI so I can hand one or more over to you. (More, if you take on the responsibility of getting that many more people to sign up).

Alternatively, you can sign up for free with the MDRI database (unless you want to donate only to a specified person, like Nalini, in which case they charge you Rs 10,000). You can do so by walking into one of several hospitals in Bombay, e.g. Raheja at Mahim, Holy Family in Bandra, Nanavati in Vile Parle, etc (see this page http://mdrindia.org/Website/Contact%20Us.htm). Apparently the procedure of forms and taking a blood sample will take 15 minutes or so. MDRI is run by the Tata Memorial Hospital, so your data will be sent to them by whichever hospital you sign up at.

I hope you’ll consider signing up. Time is of the essence. The cell transfer is really the only option she (and Karthik) has left and we have to find her a matching donor in the next 2 months.

I want to emphasize that while I’m of course concerned about Nalini’s and Karthik’s health, this whole drive has a much wider goal in mind — to increase the number of Indian people signed up in the Indian and foreign registries so that there’s a better chance of a match for others of Indian extract (and of course more generally). There are only about 50,000 names in the Indian databases. Worldwide, there are about 20 million names (i.e. all ethnicities) in the various databases, but Indians are very poorly represented. For example, while a Caucasian has about a 75% chance of a match in the US databases, an Indian like Nalini has only a 3-5% chance.

So in whatever way we can, we want to use this as an opportunity to get more names into these registries so anybody, anywhere, who gets cancer has a better chance of a match, and therefore a better chance at life.

If you sign up, thanks! Please give a thought to whether you know others in the 18-50 age range who can sign up too.

Thanks!

yours,
dilip.

Here’s a short note on the drug filgrastim that a potential donor has to take in preparing to donate — i.e. only if you’re a match and are asked to donate — culled from various online sources. Please circulate to whoever wants to know and is asking folks to donate.

There are two types of donation: PBSC and Marrow. PBSC: non-surgical and outpatient. Marrow: surgical procedure, usually outpatient.

Your stem cells may be obtained from your Bone marrow (under general anesthesia) by aspiration from the hip bones. Anesthesia is essential to minimize the pain during the procedure. Alternatively, your stem cells could be collected from the peripheral blood (from the veins in your elbow) using a cell separator machine (Apheresis Technology).This procedure is known as PBSC harvesting.

A PBSC donation involves taking the drug filgrastim for five days leading up to donation in order to increase the Donor’s needed blood-forming cells. On the fifth day, blood is taken from the Donor through one arm, passed through a machine that separates out the blood-forming cells, and returned through the Donor’s other arm.

Filgrastim stimulates the blood system (bone marrow) to make white blood cells, helping you fight infections. It is given to those whose ability to make white blood cells has been reduced. Filgrastim (also known as G-CSF, or granulocyte colony stimulating factor) is a man-made version of a certain natural substance found in the body. It is produced using a certain bacteria.

Aching in the bones and muscles may occur. Taking a non-aspirin pain reliever such as acetaminophen may help with this pain. Nosebleeds or injection site reactions such as redness, swelling, itching, lumps or bruising may also occur. Many people using this medication do not have serious side effects. But these rare but very serious side effects may occur: easy bleeding/bruising, bloody urine, bloody vomit, fast/irregular heartbeat, fever, muscle pain, joint pain, fast breathing, trouble breathing. Rarely, possibly fatal damage to the spleen may occur. Seek immediate medical attention if you experience the following side effects: stomach/abdominal pain, and/or shoulder pain. A very serious allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction may include: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing. This is not a complete list of possible side effects.

Filgrastim should not be used in patients with known hypersensitivity to E. coli-derived proteins.

Again: after taking filgrastim in preparation to donate for a BMT, donors may have symptoms such as bone or muscle pain or fatigue in the five days leading up to donation. These symptoms nearly always disappear one or two days after donating, and the Donor is back to normal. Marrow Donors can expect to feel fatigue, some soreness or pressure in their lower back and perhaps some discomfort walking. Marrow Donors can expect to be back to work, school and other activities within one to seven days. The average time for all symptoms to disappear is 21 days.

Besides him, other twitter stalwarts Netra B50 Dina Sachin Kalbag Calamur Manisha Lakhe Shubhashish have also kindly agreed to support in their personal capacity.

My question on this is –

1) Between all of us we may have a couple of lac friends/acquaintances/ followers across different platforms. How difficult would it to get the first 250?

2) Have we become so blase that we would just Tweet and forget about it.

AND it is NO. I have had more faith in Twitter over the years, in fact it is my go to place over google also. It is with this confidence, I request all of you to spread the word, join hands with us & let’s do this for Nalini, Karthik and others, for Tomorrow it may be US.

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