3 Months after transplant

She has survived! Yes, yes, she has.
It was long winding road of 3 months as things did not go as planned.

Instead of 4 weeks of hospital stay, she stayed in ICU for 7 weeks. Her counts never got better in hospital and she succumbed to couple of infections which were almost life threatening. Overall she got 14 units of platelets and numerous blood units transfused.

After 3 months now, her platelets and lymphocytes are still low but they are growing. She is able to produce enough to keep going and they are improving.

I am thankful to Dr. Srinivas Bacchu, American Oncology Institute at Citizens Hospital and their nursing staff for all their support.

It is quite important that you get caring nurse and staff and we were blessed the best team! We are immensely thankful to nurses Suguna, Rani, Naga Lakshmi, Pooja, Priya, Vajra Kumari and staff Devendar, Sowbhagya, Veeresh and many more people. Special thanks to blood bank team, lab team and billing department.

The technology team at AOI is awesome, they gave us high speed wifi which helped me stay and work!

Natural medicines for Cancer in India

I found several natural medicines that are available in India. I am not sure how much they help but they could be worth considering as alternative or supplemental medicine. I have not tried any of these and hence cannot provide details on the benefits of them.

1. Sri Narsipura Subbaiah Narayana Murthy-Medicine Man in Shimoga
1. Details: http://www.cancer-forums.net/ayurvedic-medicine-in-shimoga-karnataka-t30323.html
2. Check the video
2. Dr Yeshi Dhonden
1. http://liveayurved.com/dr-yeshi-dhonden-cancer-treatment-clinic-dharamshala.shtml
2. A friend's father has recovered from his treatment at age of 71.
3. Soursop
1. http://www.ehow.com/way_5445641_soursop-cancer-cures.html
2. I was told you can get it at in Hyderabad - http://natureschemocare.com/buy-soursop.html

Also in India, you will get lot of SMS and forwarded emails about "Imitinef Mercilet" being free and is available for everyone. Please read http://www.hoax-slayer.com/free-blood-cancer-medicine.shtml before you get too excited. 

Transplant day - Day 0

We were happy that all chemo's of regimen are done and it's now time to bring back the stem cells back to home. The day was very busy. It took about 3 hours to infuse the cells. Since the cells are in -170 degrees, they need to be thawed and properly infused in very short window.

There is something wrong with stem cells preservatives, they make you sick, very sick. 

Bone Marrow Transplant - Day -2

Today's chemo is about Melephalan. Amongst the chemo's given so far (R-CHOP, Etopoiside etc), this was very toxic to the body. I wish it was easy on the gastric. One of the side effects of Melephalan is mucositis. Eating ice chips during infusion reduces the mucositis.
We made ice cubes in fridge and then crushed them using kitchen's mortar and pestle to make ice chips.

Bone Marrow Transplant - Day -5

After 6 cycles of chemos according to Nordic protocol, we are counting down towards stem cells transplant day. The stem cells were collected couple of weeks back and were stored in remote facility in Hyderabad. I was told they are stored at -ve 180 degree C.

Hygienic patient food has been a major issue. We been lucky, the hospital has allowed us to bring food from home. I also got several items from U.S. and been helpful so far

• Organic Porridge
• Grits
• Zone protein bars
• Ensure
• Gerber yogurt blends and squeezes
• Dry roasted edamame
• Honest organic juices

Diagnosis - how did we find it

A little fatigue, a little weight loss, was all that she was going through. She discussed with our family doctor and she took the advice to get her blood vital tested out. Soon we found that her Hemoglobin was 3.9. Series of tests, CT scans, ultra sounds, TB tests, bone marrow aspiration and we knew something was going wrong. She was diagnosed with Chronic Lympocytic Leukemia (CLL). However with Cyclin D1 test it was for sure - Mantle.

This whole process of figuring out took about 2 weeks form the time her first blood tests were done. I probably have spoken to 10 doctors, posted reports online and shared with distant doctors, sent reports on whatsapp etc. The road to figuring out was very windy, very disturbing and myraid of options on way. I was betting it could be a simple TB, but no, fate was not keen on making it simple.

Now, to talk about India. India is way advanced in medical tests field related to Oncology. All the standard tests like FISH, PET are available in India. There are numerous hospital in Hyderabad where you can get most of the tests done. The bone marrow aspiration test is painful, expensive (about Rs 15,000) and is performed at many major hospitals now. Make sure you discuss with your doctor about how to cope up with pain during the test - use local or general anesthesia etc.

Now that I have mentioned Hyderabad, we had our tests at KIMS. There are several major Cancer specialty hospitals in town and I have listed few below

• American Oncology Institute at Citizens Hospital 
• Indo American (Baswa Tarakama) 
• KIMS
• Omega
• Am sure Apollo, Care and several others have full fledged Oncology departments

By the time we were sure about the diagnosis we had spent over Rs. One lakh. 

The news of yellow thing.

What! Cancer! Is it end of the world? Why us? !$??!@$#^#@!?? is the first reaction when you hear that someone you know and love have been diagnosed with any type of cancer. Pandemonium across your thoughts and hope. You go into such a panic that you forget that you are in 21st century and medical field has advanced light years. The gut hurts, you stay sleepless at nights and try to seek questions on why it happens, why it happened, pray that you are in a bad dream, wish it was mis-diagnosed, scream to God why he is so ruthless...

In Apr 2014, my mother was diagnosed with Mantle Cell Lymphoma and this blog is dedicated to her fight against this super strong lymphoma in India.

Why write another blog? There are several people who have documented their fight, their outcome, their feelings, their path to cure etc. Well, though there are numerous blogs, I could not find anyone writing their experiences of how to get it treated in India. The treatment, medicines, medical sophistication, doctors, expertise, resources in India are on par (and beyond in some things) with the western world but I am attempting to document how it all plays in India.

Today, when I am writing this blog, I am not aware what would be the outcome of my mother, how her treatment will go, how long she will be able to cope up or even as a matter of fact, how long she would live! But this blog should help if any one else is diagnosed with this hard-to-die lymphoma, and tell them that there was someone else who did not let it daunt her and that she stood up the ground to decimate it.