This little guy needs your help ..

A small help can be a life saver....     http://www.helpujjwal.com/

For Other Patients -- I know this is not the best portal to ask for help, but I want you to visit this website for another reasons:

1. Check the way they create this website If you are planning to go for some help related funds.. one of the best website I have seen so far (best example for the content they have used). 
2. Note they used CPAA (Cancer Patients AID Association - http://www.cpaaindia.org)  help .. in this way they have avoided giving direct account number and future Income tax issue

I shall try to collect more info how to go about these website.. please share if you have any.

MRD (minimum residual disease) test

MRD test is a new thing i heard in AML cases, yes it might be a common word for you, but at least this is not used in AIIMS

What is Minimum Residual Disease ( MRD ) test?

Progress in understanding DNA changes in AML has already provided a highly sensitive test for detecting the smallest amount of leukemia left after treatment (minimal residual disease), even when so few leukemia cells are present that they cannot be found by routine bone marrow tests.

The polymerase chain reaction (PCR) test can identify AML cells based on their gene translocations or rearrangements. This test can find one leukemia cell among a million normal cells. A PCR test can be useful in determining how completely the treatment has destroyed the AML cells.

Doctors are now trying to determine what effect minimal residual disease has on a patient's outlook, and how this might affect the need for further or more intensive treatment.

Source: http://www.cancer.org/Cancer/Leukemia-AcuteMyeloidAML/DetailedGuide/leukemia-acute-myeloid-myelogenous-new-research

When this test is done?

Immediately after your last chemotherapy ( before discharge )

Where it can help?

Well definitely a negative report means there is no Leukaemia cell is present in body, it means longer remission period..

but if it comes out Positive, then it definitely means lets prepare for BMT.

In some sense this test helps both doctor and patient to take a decision on Bone Marrow Test ( BMT )  

Cost of the Test In India?

Not know so far.

Estimate of whole treatment - MEDANTA HOSPITAL

Please Note: The below info is couple of year old now.. and rates must have been revised.
If you have latest info, feel free to share here .

Thank you Ashish Saxena * for sharing the info.

Medanta Medicity Hospital

Sector 38, Gurgaon.

The multi-speciality hospital (also known as Dr Trehan's hospital) is just about 2yrs old but already among the top hospitals in Delhi in terms of facilities as well as the renowned doctors on its panel. It has become the hospital of choice for many because of the following:

Heart Institute with Dr Naresh Trehan(world renowned cardiologist, http://www.medanta.org/DoctorProfile.aspx?Key=52)

Gastroentology Department with Dr Sud (renowned gastroentologist, http://www.medanta.org/DoctorProfile.aspx?Key=91)

Cancer Institute with Dr Ashok Vaid (renowned oncologist, http://www.medanta.org/DoctorProfile.aspx?Key=51)

Also, the team of doctors in each department have been handpicked from other good hospitals such as AIIMS, Ganga Ram, Max, Fortis, Rajiv Gandhi Cancer Instt. etc

Coming back to Cancer treatment, and more specifically Leukemia, the patient will be looked after by Dr Rahul Bhargava (ex-AIIMS SR) and Dr Ashok Vaid. (Dr Sachin, Dr Bhanu and Dr Jyoti will come into picture if the patient has cancerous growth /tumors etc). Each of the consultants in Dr Ashok Vaid's team are proven experts in their own field and highly competent. The Cancer Institute OPDs and patient ward is situated on the 10th floor.

Room costs (as of 1st Aug'11):  Rs 6000.00 per day for single room

                                               Rs 3500.00 for twin sharing room

All the medicines and non-consumables are provided in-house by the hospital and is made available by the nursing staff right in your room. So only one attendant is sufficient for the hospital stay. There is a couch and bedding(sheets, blanket and pillow) provided to the attendant as well. A Sony LCD TV is provided for each patient with 30+ channels to keep them busy! The rooms are cleaned 2-3 times a day and all of the hospital premises is very much clean and hygenic as per international standards(have been to hospitals in Melbourne and London, hence the comparison)

The formal visits by the team of doctors in each room happens 2 times a day and charges are Rs 600 per visit. So, Rs 1200 per day is the additional cost every patient has to inccur besides the room cost. The doctors also keep visiting informally just to see how patients are doing in case of high fever etc and other complications (at no extra cost) and as per my experience they are highly comitted towards their patients.. (surprise visits at midnight are quite common!)

The cost of treatment at Medanta depends upon complications during the treatment.

-------------------------------------------------------------------------------------------------

Below is a general estimate for an AML patient:

Minimum cost per chemo cycle will be around 2.8lacs (twin sharing room) and about 3.5lacs (single room).

So a minimum cost for 4 cycles of chemo will come to around 12-14lacs assuming all 4 chemo cycles go smooth with no infection, complications, no tumors etc

Note: the first chemo cycle will also have charges of the 2-3 cytogenic tests performed (each costing about 10k) plus the tests performed (CT scan, Xray etc) to look for other cancerous growths/abnormality) in the body, so add another 50-60k for this in addition to the cost of the chemo cycle.

-------------------------------------------------------------------------------------------------

Any infections/ complications can escalate the costs by atleast 50k or more and on an average of 1.5 -2lacs. So the patient and attendant should take all precautions necessary (masks, hand rub etc) to ward of infection (especially during the neutropenic period). Visits by relatives should be highly discouraged and avoided as far as possible.

For an AML patient there is a minimum of 20-22days of hospital stay per cycle. In case of infection and complications the stay is extended.

Bone marrow/ stem cell transplant at Medanta:

Medanta has a specialised transplant center on 11th floor where only related marrow transplants are carried out. Since, Medanta is still a new hospital so it is not yet authorised to do MUD (Matched Unrelated Donor) Transplants (as of 1st Aug'11). However, we have been told that within the next 6mths to 1yr, it will get this authority. However, the doctors here already have a wealth of expertise and experience to do the transplants (already being done for patients having related donor matches).

HLA profiling and typing at Medanta:

It is highly recommended to have the HLA profiling and matching done from Histogenetics USA (as per Shashank's earlier posts).

As per my experience, the HLA lab at Medanta is very expensive (10.5k for basic HLA matching between one sibling, another 10.5k for taking patient's sample for matching. So we spent about 21k just for finding whether I am a match for my brother and still had no complete HLA profile of my brother to initiate the search in international marrow registries).

Fund Raise & Estimate of whole treatment - I

Fund Raising & Cost Estimation of Total Treatment - I

This is the major issue during treatment of AML,

The approximately cost of treatment ( Set of 4 chemo's ) will cost you somewhere around 8-10 lakhs (depends upon the complications during chemo cycles.)
* Cost during treatment in AIIMS

In Private hospitals like Medanta, or Gangaram, BL Kapur the cost may rise to 12-15 lakhs
* I know a person who got treatment in Medanta, luckily the escape chemo on minimum antibiotic (FORCON)


If you are planning to go for Bone Marrow Transplant, then budget will depend upon whether you get a match  in your family or not.
 Lets assume if you get a match in your family (Sibling) then its the best case scenario where you can go for BMT  in less then 11 Lakhs ( in AIIMS with minimum complication), lets assume 20 Lakhs in private hospital.

 If you did not get match in your family, you can go for Unrelated Marrow Transplant (MUD - Transplant)
1) If you get a match in GERMANY - MUD will cost you 25-30 Lakhs in CMC Vellore (AIIMS is not doing MUD currently)
2) IF you get a match in US/CANADA/UK/AUSTRALIA - MUD will cost you around 50-60Lakhs.


In short Total expense would be close to

• Simple Chemo cycle - 10Lakhs
• Relapsed then Chemo Cycle --> 5-20Lakhs (cost us around 22Laks)
• BMT > Match in family > 10-15Laks                   ----- Total would be 10+10+60+5 = 85 Lakhs*
• BMT > MUD > Germany match > 25-30Lakhs   ----- Total would be 10+10+25+5 = 50 Lakhs*                                               
• BMT > MUD > Other then Germany > 60Lakhs  ----- Total would be 10+10+60+5 = 85 Lakhs*

Take approx 5 Lakhs rupees for accommodation, travelling, and other post transplant cost.

Usually people go for Donation and seeks people help.


People like Gaurav Tondon got nearly 1 crore as donation ( http://www.helpgaurav.com)
Please do get in touch with him, i am quite sure he will guide you in this process.


My another good friend (Ashish Saxena - email: ax.ash@gmail.com)  is also working on this for his brother.  


Other good link (will surely cover more on this)  - http://www.wikihow.com/Fundraise-for-Charity


Other Links: http://www.causes.com/campaigns/62194?cause_id=224871

Gaurav Tondon - Guideline for a Bone Marrow Transplant

Guideline for a Bone Marrow Transplant - from Day 1 (taken from gaurav's website - www.helpgaurav.com, the same doc can be downloaded in the Excel Format from here ( Download and take print out ***Highly recommended)


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.

People in Chennai - For Newly Diagnosed Patients call 'B Force'

Abstract from the article on Times of India - http://timesofindia.indiatimes.com/city/chennai/Help-comes-calling-for-families-of-cancer-patients/articleshow/7740305.cms


The helpline, which was launched on March 5, is yet to get a dedicated number. But people can call 9840024585 or 9884009693. "We'll put them in touch with clinical psychologists or doctors, depending on their needs," says Biju. 


 Over the last three years, B Force has conducted health camps across the state and funds the treatment of 11 people. 


We need more initiatives like this.. 

Sudarshan Kriya - Post Chemo Treatment

It’s been proven that anti-oxidant helps fighting cancer... now the major cause of relapse of cancer is, there is a chance that few cancer cells are still present in body (even after 4 round of chemo). Here is the latest research on Sudarshan Kriya by Dr Vinod Kochupillai (head of cancer center at AIIMS)

http://aolresearch.org/published_research.html

http://sudarshankriyaa.blogspot.com/2010/02/latest-research-on-sudarshan-kriya.html

Worth Trying.. 

                                                                                                                                                       

I like register my self as a bone marrow donor

I think, everyone related to a blood cancer patient asks this question, How can I register myself as a marrow donor?


Bone Marrow Transplant is the only effective curable treatment of Blood Cancer/ A-plastic anemia/ thalassemia.


Question: Can I become a donor?
Answer: You should be in good health and between 18 to 60 years of age. according to Dr.Beju George (CMC, Vellore), even if you suffering from hypertension or Sugar(Diabetes) you can become a donor provided your health is stable and disease is in controlled state.


Question: Whom to contact to become a stem cell donor?
Answer: I found this information of facebook group (http://www.facebook.com/groups/122781516547/)


According to its active member :  if you are in Mumbai you can register yourself free of cost with MARROW DONOR REGISTRY INDIA. We have collection centres at TATA HOSPITAL, PAREL, RAHEJA HOSPITAL, DR SUNIL PAREKH'S CLINIC,OPERA HOUSE. MDRI CONTACT NOs: 65152695, 9223586076.




If you are in PUNE then Firdosh is working on registry as well
you can contact him here: http://www.cellsource.in/donor_registration.asp


I'll keep update this article in future, for the meantime if you have any query or need any help, drop an email : shashank.chaturvedi@gmail.com

Buccal Swabs for HLA Test

Following is reply from Nezih Cereb from Histogentics, as per my knowledge, we still do not have any lab providing complete high resolution DNA typing. Datri (http://www.datriworld.org) is closely working with them. CMC vellore, TATA (mumbai) all sends blood samples to Histogenetic for DNA test.

Q: How can we send our sample(buccal swabs) to your lab in US from India?

You can get in touch with Mr.Raghu Rajagopal, CEO of DATRI, @ +91 98 40218667 

 He can direct and guide about the sample collection and shipment

Q: What are the charges for the high resolution test?

Histogenetic : Special India pricing is $200/sample

Rs.10000/- (Rupees Ten Thousand only) for A,B,C,DRB1,DQB1 high resolution. The payment should be made before sending samples to our lab. Please mail the check/dd to our Chennai office address as below.

            Histogenetics India Pvt. Ltd.

            #309-316, Ticel Bio Park

            Taramani Road, Taramani,

            Chennai – 600 113.

The check/dd should be in favour of  Dr. Nezih Vahid Cereb

Q: How much time does it takes to get the reports?

5 business days after receiving the sample at the lab

Please let me know if you have any questions.

Sincerely,

Nezih Cereb, MD

President

Histogeneitcs

nezih@histogenetics.com

Ayurvedic treatment after Chemo

I think Ayurvedic treatment should be a must once you achieve remission.(after all the cycles of chemotherapy) 
Siddhartha Mukherjee's award winning book  "The Emperor of all Maladies"  also shed some light on importance of Ayurvedic treament for cancer.


But the problem is whom to trust.. I spoke/met few center,
one of them is "Cancer Healer" in New Friends colony, New Delhi. 
Personally i feel its a fake center ..Rs5000 for 3 or 7 day medicines-No BILL, Center is not registered either. don't know how these kind of centers are running. 
So avoid spending too much on these kind of centers

Apart from them we took treatment from a center in Indore http://www.cowurine.com/index-2.html - treatment based on COW URINE

(Jain's Cow Urine Therapy Health Clinic) and baba ramdev's etc too.

I only place where i felt some confidence is in dehradun. We spoke to them they charge Rs80 for a week medicine, and only treat patients who are in remission. A must for AML M7 cancer patients.http://www.padaav.com/aboutus.html
http://timesofindia.indiatimes.com/home/sunday-toi/Cancer-and-the-science-of-alternative-therapies-/articleshow/37754095.cms

FOODS AND HERBS TO KEEP SUGAR IN CHECK

A good article found on http://www.1uponcancer.com/2011/05/09/3151/

"How does blood sugar tie in to cancer?

You eat something and it turns to blood glucose (sugar). Insulin carries the glucose from your blood into your tissue where it fuels your body. If you become insulin resistant, which can happen with diabetes, if you are overweight, or eat a lot of refined sugar and refined carbs, the glucose stays in the blood. Avoid refined carbs and refined sugar and you up your chance of beating breast and colon cancers, in particular, according to Keith Block, MD, who treats cancer patients and wrote a book called Life Over Cancer.

Among dozens of studies Dr. Block cites to plug for a low-sugar, low-refined carb diet are one where breast cancers survivors in remission with the lowest insulin levels were half as likely to have recurrence and one third as likely to develop metastases as women with higher levels (higher levels are prompted by high blood glucose). Cancer cells in general consume more glucose than healthy cells, and studies suggest controlling blood sugar and consequently controlling glucose can affect outcomes. [Journal of Bioenergetics & & Biomembranes 1997; 29 (4)].

Block and oncologists who plug the power of diet make these recommendations:

 Chose a whole food diet.

Eat a lot of cruciferous vegetables like broccoli, cauliflower and other green leafy vegetables.

Replace refined carbs like white potatoes with sweet potatoes and trade white bread for whole grain bread.

Other good alternative carbs are brown rice, buckwheat, wild rice, whole wheat pasta, and barley.

Avoid high-fructose corn syrup; it’s a natural sweetener in foods like cereal bars, spaghetti sauces, yogurts, and could be in about anything that would have sugar.

Avoid fat-free and low-fat foods; the fat is often replaced with sugar.

Adding herbs to the mix

If you’re interested in herbs, the American Association of Integrative Medicine recommends these products, all found in studies to lower blood glucose. 

• Aloe Vera
• Bitter melon -- also know as karela in INDIA 
• Cinnamon bark also know as "karuvapatta" or "KARIPATTA"
• Ginger - ADRAK in india
• Holy basil (hot basil) -- TULSI in india

.

Bone Marrow biopsy

Well we had bone marrow biopsy at the time of diagnose of the disease.
Doctors usually do two more bone marrow biopsy at the time of Induction Chemotherapy (First round of Chemo), this will be done on Day 14 and Day 28 (usually depends upon when is the blood counts improved)

The biopsy will be same procedure, but this time it will be done in the room itself done by a Senior Resident doctor (AIIMS) only .

You'll be needed 11G needle in both the cases, which might cost you Rs850 each time.

Question: Why a bone marrow biopsy on day 14?
Ans: Probably your doctor will explain this to you, usually we do this test to confirm that the counts are decreasing and the chemotherapy is working correctly.

Question: Why on day 28?
Ans: This is going to be very very important test, this will tell doctors whether cancer is in controlled state or not, we term it as Remission.

Question: What if Cancer is not in remission after Induction Chemotherapy?
Ans: Well don't panic, consult with your doctors, we have around 3 stages of chemotherapy. It can be bring down to remission next time if it is not this time.

Question: Cancer is in remission now!!! what next?
Ans: Once the cancer is in remission, doctors will give you another 3 rounds of chemotherapy.
High dose of Cytrabine usually. In my father case they gave 2 rounds of high dose of Cytrabine chemotherapy
considering his age factor.

Question: 2 rounds of chemotherapy is better or 3/4 rounds of chemotherapy?
Ans: Let the doctors decide this. You can always go for a second opinion (recommended).

A more on Bone Marrow Biopsy

How is the Weather Outside?

The hardest part of this treatment is that you have to stay in a hospital for almost 4 months. Isolated with outside world. The depression is the biggest problem we have to face this time.

Hard antibiotics + blood checkups + and same faces.. this could result into a depression.

I personally think Doctors and Nurses plays a major role here. I remember my father eagerly waits for Dr. Narender (SR Hematology) every morning, His calming smile and small talks always gives a confidence to my father that every thing going to be just fine.

 During my stay at AIIMS, we stayed at Second Floor, Third Floor and Fifth floor of Old Private Ward, and Third Floor of New Private Ward.

Books + TV + Movies + Video Games + Music + Talks , they all could be used to avoid depression. Take this time as holiday you spending your loved once.

"A smile on your face could be their reason to fight against Cancer"

Antibiotic & Anti-Fungal Medicines during chemotherapy

Assuming you are in day 8-10

by this time blood counts are started decreasing, doctors are keeping track of blood counts, kidney and liver function by doing test on MONDAY, WEDNESDAY and FRIDAY (Aiims schedule)

Doctors might start antibiotics if patient had small fever or infection.
>VFend is the most common drug which i observed.
Price: Depends upon dosage mg.

As per my knowledge the 50mg - 10 tablets cost you around Rs13000-Rs14500

Please try to negotiate its price.

2> Meropenam -  AstraZeneca with the brand names Merrem and Meronem








Lots of Indian companies are also coming up with their brands, most common is INTAS
Please consult your doctor before buying 


---------------------------------------------------------------------------------------------------------------------------------------------------------------
Updated Price of Voriconazole ( 6th November 2011 ) :
Realized lots of indian brands came up with Variconazole..


Voritek- CIPLA is available for approx  Rs1600+(MRP: Rs2800)  for 4 tablets
Voritrop-Intas is available for as low as Rs1100 (4tabs)
Tazarotene - Ranbaxy and Zydus Cadial also came up with medicine under Rs2000

Precaution while Chemotherapy - For attendant

I personally feel the real fight during chemotherapy cycle is from day5 to day 20(till the counts are recovered).

As a attendant we can take few precautions

1> Always wear face mask and if possible surgical cap too. ( Keep in mind a small sneeze can be life threatening for the patient as the counts are low.

Cost: Face Mask - Dispovan company mask usually cost you Rs175-Rs200 for 50pieces( 1 BOX)
and Johonson & Johonson face mask - Rs375 to 435 (20% discount on MRP minimum)
Separately Most of the medical shops sold Rs8/per mask hence prefer to go for a BOX


2> Try to wear fresh washed clothes and if possible keep separate cloths for inside and outside the room. We might have to go outside for medicines, water, food etc

3> Use separate room sleepers.

4> Do not allow any visitors specially Old. young kid and sick people to visit the patient. They can say hello from the gate. Remember a infection could be a end of fight.

5> Wash room every day, Use BASILOL spray ( ask for this spray from Senior Sister, it is not available in the market).

6> Keep Tiolet clean.

7> Most Importantly : Wash your hand with soap or Hand Sanitizer (Handrub from 3M company) every time you need to touch patient . In short keep yourself clean.


Sisters in OLD PRIVATE ward does not use mask regularly, do not hesitate to remind them to wear mask whenever they enter into the room

Important: HLA Test -- life saver

Assuming you are on day 10 and Induction Chemotherapy is completed.

This is the most critical phase of the treatment. Blood counts starts falling and need constant monitoring by the doctor,

What we(attendent) should do at this time?
1> Precaution for Attentdent:
Read my blog on Precautions for Attendent
But at this moment i am writing this post for taking future prospects, remeber this could be a life saver move. Please do not ignore or postpone HLA test.
2> Preparation for HLA Test for Bone Marrow Transplant(BMT)
- I will write about different types of BMT in future post.

HLA Test
Q: What is HLA?
A: HLA stands for human leukocyte antigen, a group of proteins present on the surface of all cells on the human body.

Each individual carries a particular combination of proteins in the HLA set. There are different types of HLA -- A, B, C, DP, DQ and DR. We all have 2 HLA molecules of each type, inherited from either parent. Therefore, the final HLA combination serves as a molecular identifier for an individual. The immune system of the body uses the HLA combination to identify each cell in the body as their own.

When ‘foreign cells’ in the form of organ or marrow transplants are placed inside an individual’s body, a mismatched HLA is recognized and the body may reject these cells or organs. The HLA sets of the donor and the recipient must be as close a match as possible for a successful transplant.

Identical twins have the same HLA set. Parents, siblings and even unrelated individuals may also have matching HLA. Lab tests can identify the HLA type of a person and test if another individual’s HLA matches it or not. HLA matching is an essential step before an allogeneic transplant

Q: Why should i think about Transplant at this point, i can be curable by chemotherapy?
Ans: I agree and probably most of the doctors in AIIMS might support you too. but please if the patient in younger than 60years and if you have the medical insurance or you are a government employee then there is no harm to go for this test at this time.
In case if doctors thinks about possiblities of Bone Marrow Transplant(BMT) then this you have to go through this process.
If patient is suffering from AML subtype M4, M5, M6 or M7 then this test is a must

Q: Ok,So how i should go about this Test? Does AIIMS have this facility? Any Private Lab?
Ans: Yes AIIMS have this facility, follow the following steps:
1> Your SR doc will fill a form and draw your family chart.
2> Take this form to Dept of Transplant Immunology and Immunogenetics just behind the director's office.
you will meet
Dr Uma Kanga
Senior Research Scientist
Dept of Transplant Immunology and Immunogenetics
All India Institute of Medical Sciences
Ansari Nagar, New Delhi-110029
Tel(O) 91 11 26594463, 26594638
Tel 9868397942 (mobile)
Fax 91 11 26588663
email : umakanga@hotmail.com

3> They will give you a date for the test - Probably it will be after 20days, Now for the patient, this test requires suffecient blood counts and no medicines in last 10days, after 20days we will be on day30th of chemotherapy, and the best time for this test. :-)

4> Who all going to be tested:
1> Patient
2> Patient Siblings : Best matching possiblities lies with them (25%)
3> Parents and Children: Depends upon your - chances are only (4%)
Note: In our case, we found the match with First Cousin (We have tested 15 people).
Please consult your family history with your doctor.
If you have any doubt please email me on shashank.chaturvedi@gmail.com

5> Price:
Each test will cost your Rs3,000 in AIIMS for intial Test and another Rs3,000 if you have a match.
In total keep around Rs20,000 for this test.


Want to be a donor? Read my blog: http://warwithbloodcancer.blogspot.com/2011/08/i-like-register-my-self-as-bone-marrow.html

Managing - Blood Donors and Platelet donors

Assuming you are on day 5 after hospitalization and Day 4 of Induction round of chemotherpay, by this time the blood counts are started falling,
RBC starts touching >3 and Hemogram stars droping to 8, platlet < 20K We need to arrange atleast 4 blood donor cards and 4 platelet donors, Only for First round of chemo, in total we need around 8-10 blood donors.
In All India Institute of Medical Science(AIIMS) we can get 3 units or RBC (blood)on a single donor card (we need to collect it back from the blood bank on the next day of transfusion - Timing: 11am-1pm and 2pm-4pm)

**IMPORTANT**
1> Keep in mind for SDP(single donor platelet) is a requirement based transfusion and your doctor probably give you 4-6hours to arrange a SDP, so keep your close relative or friends list with you who can come to AIIMS in short notice.

2> SDP is extracted in cell seperation room of C2 general ward, second floor.

3> Before SDP donation, donor need to be tested with Viral Marker and Hemogram test, This test need to be done on either a day before the donation or on the same day itself. This test can be done through external lab, Cell seperation incharge - Narender & Ominder ji can direct you to the LAB
Cost of the Test --- Rs1,000

4>SDP Kit: There are two kind of SDP Kit available, both are available only on Two shops near AIIMS
a) Impex India - Phone: 0-9910486274
b) Aark pharmaceuticals

Types of SDP Kit
a)Single Needle- This kit will take 1hour 10min to extract the SDP
Price: Rs6100-Rs6200
b) Double Needle - This will take 35minutes
Price: Rs 6,750 in Impex (last price update: 26th march 2011)

BEFORE TRANSFUION:
ALWAYS CHECK THE RBC IS OF YOUR BLOOD GROUP AND IRRADIATED

********Note*********
If a person donated Blood, he/she cannot donate blood or platelet for next 3 months,
but
A Person can redonate SDP (platelet) after 3 days and also can donate blood
So choose wisely who need to donate blood and platelet
*************************

Preparation with Mind and Medicines

Assuming by day 4 you get the room (blast in the peripheral blood > 50%)

We need to start preparing for the Chemotherapy, the general trend doctors in aiims follows, they gave to aroung 4-6 hours to get the medicines and prepare yourself for the chemo.

1> To get the medicines from the Market -- Keep in mind there is no medical shop inside the AIIMS campus, so you have to go to yusuf sarai market or gautam nagar or shops just outside the safdarjung hospital.

Also price of CYTOSAR 1gm (trade name of cytrabine)varies in every medicine shop. so choose wisely, i would recommend you to buy 6gm of cytosar for day 1 and then send some relative to survey the market.

36gm of cytosar and other induction chemo material usually cost you Rs40,000 - Rs 50,000.

Also mostly all the big medicines shops accept CREDIT CARD, but few small one can provide you medicines at cheaper rate if you have the cash in hand.

I will write a separate post on medicines shops around aiims, including there no. and rates of major medicines. if you need more info on the shops or cheapest price you can email me on shashank.chaturvedi@gmail.com


2> Peripheral intravenous line --- Usually by evening the on duty SR will come and starts the chemotherapy, the very first step is to implant a peripheral intravenous line in hand(assuming the patient is in normal health)
Question: Why this?
A: I would say this is the best thing to go with, you need to go through blood test on every Monday, Wednesday and Friday, plenty of antibiotics will go through your inter venous line, this line is painless and easy to manage.
Question: How to take care of this line?
Question: life of PIVC line?

Fight and Fight till the Lion(disease) becomes Lamb

Yes, that the word 'Fight',
We need to create a positive environment around the patient, we have to make sure he/she starts believing that they can fight with it, and can get through out of it.

By this time probably your fight is started now, (assuming you are day 2 )

TARGET 1: TO get a room.
you need to get a Private Room in the hospital or a Bed.

Usually AML cancer need to be treated aggressively { high dose of chemotherapy - 3gm per meter square = a 74KG man probably gets 36gm of CYTRABINE (CYTOSAR)}
This chemo kills all the blood cells includes cancer cells as well as healthy blood cells. Hence if it is possible try to go for a Private room.

In AIIMS private rooms are classified in two categories:
Class A -- room rent Rs1700/day + Rs 100 for meal
Class B -- room rent Rs1100/day + Rs 100 for meal

In total there are only 120 rooms (approx) including New Private Ward and Old Private Ward)

Keep in mind you are in the hospital for next 3months+
so choose your room wisely.

I will try to discuss Managing Money separately on a new post.

When the lightning strikes

Sarve bhavantu sukhinah (May all be happy);

Sarve santu niramayah (May all be healthy);

Sarve bhadrani pasyantu (May I see goodness in everybody);

Ma kascid dukhabhag bhavet (May misfortune never ever befall).

I started with this Geeta shalok in a hope that no one ever needs to suffer the pain with this disease. I am writing this blog  just for a sole purpose to provide as many as possible information on this disease under one roof. My experience with haematological department of  All India Medical Sciences (AIIMS) is last about 11 months, during my father Shri Harsh Chaturvedi treatement with AML M5 blood cancer.

Look at these people, all who died in these accidents never had a chance to fight for their life. At least we have. Lets start this journey of war with cancer with courage, with dignity. 

"We will get out of this to live our childhood dreams"