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Living with Multiple Myeloma in Hyderabad , India . Random musings .


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Recalling Memories of Dec 2011

memories

It has been 6 years since I underwent Stem Cell Transplant for Multiple Myeloma. It was in Dec 2011 when I was ushered into an isolated , sterilised , spic and span room where I would spend 15 days all alone.

A room where I would be reborn 🙂 , where my healthy Stem cells would be put back into my bloodstream which in turn would produce fresh and pure blood cells.

I spent Christmas (2011) and the New year(2012) in this room . I had the company of Doctors , Nurses and housekeeping staff who were like family and I would look forward to meet them and chat with them.

Felt too weak to sit by the huge glass window which overlooked the front porch of the building . I had to take the help of a nurse to take a short walk around the room.

Spent my waking hours watching my favorite shows on TV. I kept switching between Cooking , Travel and Religious channels .

Each morning my blood samples were taken and I eagerly looked forward to the reports which would arrive in a couple of hours . The counts of various blood cells would reveal how well my Stem cells were functioning.

A lot of yummy food would be served but it was difficult for me to swallow as my digestive system went on a strike 🙂

I patiently waited for each day to pass. My doctor promised me that he will send me home for Sankranti (a Hindu harvest festival which is celebrated around Mid of January every year ).

Since then , each year around December/Jan , I become nostalgic .

I made a lot of resolutions during those days 🙂 , all that I would do and not do. I have been quite successful with most of the do’s and don’ts 🙂

Feeling very blessed and grateful as another memorable year is passing.

 

 

 


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An update on my condition – Multiple Myeloma

It’s been 4 months since my Oncologist told me that I was ‘Technically Cured’of MM. ( I underwent Stem Cell Transplant also known as Bone Marrow Transplant in Jan 2012)
He had told me to meet him again after one year. I couldn’t believe what I heard. I had a question mark on my face and said ‘One year , Doctor ?’ and he repeated what he said.

Isn’t that the best thing to hear 🙂 .

I had got used to getting CBP, LFT and RFT tests done every month and sometimes once in three months in the last few years, along with a Bone Marrow test every 6 months.

And so, in the back of my head there was this question , what if something goes wrong during this one year. One year is a looong time . I expected he would tell me to get a few tests done regularly like CBP, LFT, RFT and to meet him only if any of the parameters were out of range. But he didn’t say any of that.

In my head I was telling myself that I will get these tests done anyway, even if my Oncologist didn’t tell me to.

So here I am , I just got these tests done after 4 months and the results are out.
Here are the current values of some of the important parameters :
Hb : 11.2 (11 – 16)
Creatinine : 1.0 (0.6 – 1.0)
Globulin Serum : 3.8 (1.8 – 3.6)
ESR : 60 (0-20)

I don’t intend to meet my Oncologist with the reports as I didn’t find too much abnormality in the reports nor any change in my general health condition.

I sent my reports via whatsapp to my Ayurvedic doctor. He felt the numbers were normal . I expressed my concern about ESR being high and was told that it will not reduce so soon. There were times when the ESR value was much lesser , around 30 sometimes. High ESR implies greater inflammation in the body. Will work on that.

He wanted to reduce my curcumin intake from 3 caps / 3 times a day to 2 caps / 3 times a day ( Each capsule contains 400 mg of curcumin) . This is actually good news. My doctor has more confidence on me than I have in myself . But , I was not ready and in no hurry to reduce the dosage  , so told him I would like to continue 3 caps/ 3 times a day for few more months. So glad he agreed 🙂 . I still feel like depending on Curcumin for some more time.

Some day I should be off Curcumin too and I am looking forward to the day when I will be 100% independent of any kind of support . The day when my mind and my body will be in sync :))

That’s all for now.
Will get the tests done again after another 4 months.

Life will go on while Fasting , Pranayama, Meditation , Diet , Exercise will continue to be a priority.

happiness

 

~Sarve Janaha Sukhino Bhavanthu ~

 


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Summary of my Journey with Multiple Myeloma

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Here is the write-up that I sent to Dr Nitin, my Ayurvedic doctor. He wanted to share my case with his students and others. It is a chronological summary of my journey with MM.

Age: 46

Gender: Female

Location: Hyderabad

Diagnosis: Diagnosed with Multiple Myeloma in Oct 2011

Jan 2012: Underwent Autologous Stem Cell Transplant (ASCT) at Apollo Hospital, Hyderabad. Started taking Thalix 50mg (Chemo)  initially and later increased to 100mg.

Dec 2014: My Plasma Cell count increased to 12% and my Oncologist advised that I should go for another round of Stem cell transplant after three months i.e. in Apr 2015

He also changed my medication to Lenolidamide 10mg (Chemo drug)

I did not want to undergo the second round of SCT. After desperately scouring the Internet I came across a blog by another MM patient , who was living with Smoldering Myeloma and was using Natural supplements to manage her condition successfully for a decade. I then started taking Ayurvedic Medication like Haridra, Ashwagandha, Shigru, Punarnava from ‘Himalaya’ brand . Many other bloggers too recommended Curcumin but because I did not know where to get it I began using Turmeric in the form of Haridra from ‘Himalaya’.

I was experimenting with the above. I also informed my Oncologist that I was taking the above medications and he did not have any objection.

In fact he himself had advised me to take Tinaspora cordifolia ( a herb) , after my transplant for improving my immunity.

In the next three months my blood counts and ESR levels were slowly showing improvement. That was a good sign.

Apr 2015: Was lucky to get introduced to Dr Nitin Kochar , Mumbai by Dr Gayatri ,MM patient from Delhi when I told her that I was using Turmeric. Met her via a social networking group named ‘Yoddhas’. Their website is Yoddhas.com. I Started taking Curcumin and Punarnava and followed diet given by Dr Nitin Kochar along with Lenolidamide. Finally I was in professional hands and it was a great relief.

May 2015: Bone marrow test was cartied out at the end of May 2015 which revealed that MM was in Remission. There was no mention about second time transplant 🙂 . My Oncologist obviously was surprised and happy too.

Oct 2015: Continued taking Curcumin along with Lenolidamide. Bone marrow test was done and my M Spike was zero. Yayyy !!

Feb 2016: My TLC count, neutrophils became very low. The counts were decreasing gradually over the past few months. Started experiencing several infections simultaneously. My Oncologist advised me to stop Lenolidamide. I continued  taking Curcumin , Ashwagandha and other herbs and followed the diet as per Dr Nitin’s advise.

May 2016: Bone marrow test revealed MM in remission. I have not been taking Lenolidamide for the last 3 months. No more Allopathy.

Currently taking Curcumin , Ashwagandha, Nimbodi, Bavchi during the last 3 months. Have been fasting once a week and taking diet as per Dr Nitins advice.

My Oncologist told me to take a break from medication for another 3 months.

Yayyyy !!

Hopefully this will be a permanent break 🙂

My experience with Fasting : I had never fasted all my life. I was nervous initially. I currently fast once a week. I am not supposed to eat anything till dinner time. I can take tea/coffee two or three times during the day. Only if my stomach rumbles and feel weak I am permitted to eat a fruit. I can manage with three servings of fruits . Only Luke warm water to be taken throughout the day. For dinner I am allowed to take vegetable soup and kichdi (single pot meal cooked with lentils, rice and veggies) . I eagerly look forward to eat the warm bowl of kichdi in the evening and feel grateful for the food. It is a great feeling . I am enjoying my days of fasting. Makes the body feel light. Makes the food during the rest of the days taste great.

I also did my own research on the Internet on the effect of fasting and read that Fasting makes the cells go into repair mode. This period of rest heals the cells and tissues in the body , which is very important for a healthy body. I am convinced and surely we can give up food for one day in a week for improving our health. The side effect of Fasting is better health 🙂

On other days too , I follow the Diet given by Dr Nitin. I have reduced consumption of Sugar, Maida , Milk , Wheat , tur dal and have included more of millets , Moong dal , chana dal , veggies , nuts in my diet  .

Feeling good , happy and quite comfortable now. Wish to share my miracle with as many as I can so they too can benefit from Ayurveda , Fasting and proper diet.

I feel happy sharing details of my experiences in this blog through my other posts.

 

~Sarve Janaha Sukhino Bhavanthu~