Gaurav - "
* These guidelines are based on my experience. Not to be taken as a formal medical advice. Consult your doctor for the same. Please feel free to contact me if you have any doubts. Gaurav Tandon +91-9586550304(M) email: reply_gt@yahoo.com www.helpgaurav.com
You have chronic fatigue, unexplained fever, frequent infections, difficulty in blood clotting, weight loss. These may be symptoms of a serious underlying blood disease.
Day 0
Your CBC test/Bone Marrow tests Reveals that you have Blood Disease (AML/CML/ALL/CLL, etc). It could be a New case or Relapse.
You need Chemotherapy. In many cases it cures you, but in many others it'll just buy you time till further treatment like transplant.
Which Hospital / Doctor? Take a day or two to decide. Do a quick homework on which is the best hospital/doc. It's not necessary to ??
go with the same oncologist/haematologist who detected it.
Day 1
Send your bone marrow/blood slides for Cytogenetic Report. These are chromosome level details to help the doctors decide if you need a transplant (FISH & Conventional Reports)
Many doctors don't do this step immediately.
Day 2
Start your Chemo cycles. Be brave & positive. You are lucky to have the chance to fight for your life unlike many who don't.
Family also needs to be equally strong & positive. Truly these days the chemo drugs & their side-effects are quite manageable.
Don't wait for Cytogenetic report (takes 10-15 days). Go for 6-Factor HLA test for yourself and that of your blood relatives. It costs around Rs 6000 per person.
Here again, many doctors don't tell you clearly if you need a transplant or not based on cyto reports. Ask them clearly. You must take 2nd / 3rd opinion from other onco/haematologists.
Day 13
Doctors confirm that you need transplant (based on cytogenetic report)
Is it Autologous Transplant (your own bone marrow transplanted to you)? If yes, then discuss with the doc the possibility of quick transplant without completing all chemo cycles.
Since you are the donor yourself, you need around 8-10 Lacs for this. There are many good hospital which do it in India. A word of caution, chances of relapse even after Auto transplants are very high in my view.
But complications and cost are lowest here.
If not Autologous then it's Allogenic (someone else's bone marrow to you). Now whose bone marrow? Related persons or Unrelated persons (MUD)?
By this time your 6-Factor HLA reports must have come.
Is there is sibling match (6/6 or 5/6 factors or Half)? If Yes, then again discuss the possibility of a quick transplant without first going through all chemo cycles. Since you have a
donor (your relative), you need around 10-15 Lacs for this. There are many good hospital which do it in India.
Day 15
If No, then you need a Matched Unrelated Donor (MUD) Transplant. Very expensive & complicated but safest bet for a cure amongst the three (in my opinion).
Now you have two things to take care of. Number 1 is "finding the donor who is willing and fit to donate" and Number 2 is "collecting money". Both these activities must be carried out in parallel from today.
Immediately, with the help of your doctor, send your blood (DNA sample) to Histogenetics Lab in the USA for a 10-Factor HLA report. It'll cost you around Rs 12000-15000 (including courier charges). A word of advice, get your 10-factor HLA report even if doctors say you DON'T need a transplant. It costs only Rs 12-15000 but will help you tremendously incase the doctors are wrong in predicting and you DO need a transplant a few months down the line. Insist that the doctors also do primary search with NMDP but they MAY not agree. It's still OK.
It'll take around 10-15 days to get 10-Factor HLA report.
Approach CPAA, ICRA, etc to put up your profile on their website for people to be able to donate funds. Make your blog on blogger/blogspot. Put all the necessary details (ref to helpgaurav.com). Blogs are free. You can like it to facebook, twitter, orkut, etc. More on fund raising a little later.
Your 10-Factor HLA report has come (A, B, C, DRB1, DBQ1).
Now you'll have to start the process of decide on which transplant center, TC (CMC Vellore is my 1st choice today) to go to for MUD. Have they done MUD before, if yes how many, what's the success rate?
Parallely speak to organisations like SAMAR, AADP etc in USA for conducting donor drives to increase your chances of finding a matched donor.
They'll put your profile on their website after doing some necessary paper work and conduct drives for you. Trust me it's worth the effort.
Day 25-30
It's one of the most difficult decisions. You need lots of time & data to arrive at the answer.
Like what's the amount I can raise before the transplant is carried out?
Apart from money, emotional & family support and logistical ease are the most important aspects during & post transplant. Keep this in mind when deciding.
For transplant alone, going to UK or Israel or Australia will cost you a minimum of 1Cr to 1.5 Cr. USA will cost you a minimum of 2.5 Cr. CMC will cost you around Rs 50Lacs (if no complications)
Also keep in mind post transplant followups. It's very difficult to go abroad for regular checkups. And if you do post check-ups with a local doctor in India, the chances of mis-communication go up.
The other important things is to consider Haplo transplant (ONLY if there is a half-matched related donor available AND a MUD is not an option due to time / money/donor constraints)
Haplo's are not very successful in India. Only doctor which I know of is Dr Shimon Slavin in Israel. He's very good. But go there only if there is no option.The final option is to consider Cord Blood transplant (ONLY if a MUD is not an option due to time / money/donor constraints)
Cord Blood is safer than Haplo's and more successful in young adults. Apollo Chennai has done it. Chances of getting cord blood match are also higher.
With your 10-Factor report, your TC doctors would have got a Primary search report from NMDP, USA. It shows the no. of people who match 10/10 or 9/10 or 8/10.
There are more than 13 Million donors listed with NMDP, globally. You can check with Tata Memorial and Dhatri.org also (but in parallel with NMDP search).
Day 35
Your TC doctors (you have no role to play here but only to keep checking with your doctor) will consult with NMDP and decide the "best matches" and ask NMDP to carry out further testing on those 1 or 2 individuals.
If money is not a constraint but time-to-transplant is then ask your doctor to carry out more no. of matched probable donors so that we don't lose time incase the donor is found unsuitable.
Testing of each proabable donor cost you around Rs 5 Lacs AND a couple of Months! So you decide what's more important here.
Your chemo cycles must be going on at this time.
You must be also doing fund raising activites in parallel. You have a minimum of 2-3 months from today for raising funds (if you are lucky to get the donor who is willing and fit to donate bone marrow / stem cells)
Assuming you reach and stay in remission for this period and before you hit the transplant center.
In these 2-3 months, while money & donor is getting arranged, you have awindow of opportunity to take care of your health. Eat well and take lots of rest and be mentally and physically as fit as you can for the upcoming transplant.
During this period of maximum uncertainity, it's very natural that you feel impatient & dis-satisfied with the slow progress on donor search & finalization. Your anxiety levels will go up. You'll bug your doctors for "any news?" Try to resist / minimise this as even the doctors have limited say in expediting this process. Apprecite their tight schedule and trust them.
Here, explore the chances of taking remaining chemo sessions, if any at the transplant center. It has it's benefits like the doctors know your pre-transplant history and this will help you in transplant treatment.
Day 60-150
You've found the donor (fit & willing). Doctors decide on Date of Transplant with the help of NMDP and your health and money readiness. Assume it's a month from now.
Day 120
You travel to the city of transplant. Find the rental appartment with atleast 1 AC room for the patient with a separate bathroom, a TV, fridge, cooking gas, buy utensils, grocery, kitchen/bedroom/etc stuff
(assume)
At Vellore you can get a decent 2 bedroom flat at Rs 9000-12000 per month with all facilities like AC/TV/Fridge/cots/Gas/bottled water. Expect your stay of atleast 6 months. The total cost would
be around 2-3 lacs including occasional travel to your hometown.
Day 150
Your date of Transplant! Your new birthday!
(assume)
Day -7 ( 7 days prior to DoT) you'll be admitted for all round tests ENT, Eyes, hearing, heart, lungs, teeth, etc and given clean chit by respective doctors.
Also your pre-transplant myeloablative chemo & radiation will be carried out now. This will wipe out your 'sick' bone marrow completely so that the donor's new marrow can be transplanted.
You'll have to stay in a completely isolated unit (BMT Unit) for atleast 20 days (depending on how fast your blood counts improve and other complications).
This is one of most challenging period but certainly not the worst time. One of your relative can meet you for a couple of hours every day (ofcourse with proper sterilizated clothes etc)
Day 175
You are taken out of BMTU into a HIPAA filtered room (but not isolated like BMTU) for further treatment of GVHD, infections, etc
This will be one of the most challenging periods. It usually is for a period of 50-75 days. There will be innumerable x-rays, blood tests, etc. From day 150 you'll be on "food packets" till necessary. No oral food. You'll have to drink lots of water to avoid kidney complications during the entire transplant treatment.
Day 225-250
You are discharged from the hospital ! You can go to your "home" in the same city. Slowly you are back on track in terms of eating/sleeping walking in open sky, listening to birds and watching sunrise & sun-sets!
You need to go to hospital twice a week for dressing of "hickman's catheter" and blood tests.
Day 251
You can go back to your true home! And need to come back for monthly checkup at the TC and local weekly test at your city.
You look very different now. Bony, dark, bald and very weak. You're building watchman might not allow you inside (happened with me!)
You've won the initial battle. You still are not completely out of woods (danger) till 1st two years. You've to take care of Chronic GVHD & Infections and resultant complications. Also the chances of a relapse are high in this period. Let's accept it. There are many people who have undergone two or more transplants!
Limit the people who come to meet you. Don't be close to children and people with infections, markets, dust, pollens, humidity, etc. Wear face mask when ever you step out of house of meet people
Avoid raw fruits/vegetables/eggs etc. Expect your sleeping patters to remain heavily upset due to steroids etc. Keep track of your daily medication and take it religiously.
Depending on the complications, your monthly medical bills and travel cost will be Rs 50,000 -1lac per month on an average (including frequent hospitalization at your city or at TC) for 1st year atleast.
This entire experience will certainly bring a huge 'transformation' in your life! A positive one. You'll appreciate small things and put the 'usual' problems in their rightful place.
It's a very difficult battle but by no means unsurmountable! There are many more who win it today than ever before.
