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


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Lock-Down Dairies – 22 May 2020 : Update on my Multiple Myeloma, my Curry leaves harvest

Been a while since I updated on my Multiple Myeloma.

This is the 9th year after my Stem Cell Transplant. I have been taking only Ayurvedic Medication for the last 4 years.

There are other detailed posts in the past where I wrote all about in detail.

I am continuing to take Circumin, Ashwagandha , Satavari , Tinaspora Cordifolia as per the advise of my Ayurveda Doctor.

I also take few Allopathy medications like Folvite ( for better absorption of Iron), Renerve (for peripheral Neuropathy), Antoxid HC (Multivitamins) and Feburic 20 (to regulate Uric acid) .

Apart from the above , I also have been following the lifestyle prescribed by ‘Natural Lifestyle’ , since 4 months. I have lost some weight due to the restricted diet. I do feel healthy otherwise. Just that I can’t physically exert myself a lot. Able to manage quite well even during the lock-down period doing all household chores with support from hubby and son 🙂

I did the routine Blood tests 2 months ago (just before the lock-down) and the reports say that all is well.

However, it is 1 year 4 months since I did the Bone Marrow test. I feel it may not be necessary as I feel good and my routine tests including Serum Globulin levels were normal in the recent tests.

I am also back to work in spite of all the restrictions and risks.

I am dependent on my driver whenever . Doing my best to ensure that my Driver is also healthy. Provided Masks, Face Shield, Sanitizer , Liquid soap and gave him instructions on maintaining social distance and washing hands frequently.

Getting used to co-exist with the C-virus. With a little care and attention it should be possible to deal with it.

Harvesting curry leaves in my tiny garden :

I was all the while assuming that the curry leaf plant should be allowed to grow as much as possible before we start harvesting the leaves. I recently learnt that the branches should be cut frequently so as to encourage further growth of new stems.

So, I decided to cut off one of the biggest stems today. Here it is-

I then separated all the leaves, washed them well and dried them well.

This is usually how i prepare curry leaves before i pack them in an airtight container and store them in the refrigerator.

These leaves are going to last me more than a week. Feels so good to be able to grow your own food ,that too organically grown 🙂

~ Stay safe ~


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Lock-Down Dairies – 7 May 20 : My ‘Natural Lifestyle’ – Cotton Patti , Non-violent Enema , Surya Snaan (Part – 2)

Was happy to know that Acharya Mohan ji said I should go ahead with their prescribed diet. It was already one month since I had started following their diet.

Along with the diet they recommend wearing a ‘Cotton Patti’ . I was using some towels at home for this purpose. This consists of wetting and wearing a coarse cloth around the stomach , the neck and the head. One can order this set of cloth pieces from their organisation and I finally decided to order. This process increases the blood circulation in the body.

They also recommend non-violent enema twice a day. After reading and watching several videos on this ,I decided to order one . They insist on enema as they believe that unclean bowels are one of the main causes of all diseases.

I continued the diet .I was losing weight. I lost 2kgs in one month. My colleagues noticed and commented. I explained what I was upto.Surely they would have concluded that I was messing with my body 🙂 .I tried convincing them that what I was doing is right. But who would want to give up all the yummy food and start eating all the bland food that I was eating :). We would all have lunch together and they did notice what I was eating.

I was into the second month and one day received the patti set and the enema set. The patti was comfortable and I started using them twice a day. After a few days I got the courage to use the enema kit. It did feel clumsy for a couple of days and I soon got used to it.

They also recommend ‘Surya snaan’ every morning. One has to wear minimum clothes and spend some time exposed to the early morning sun rays . I was unable to do this and all I could do was to spend a little time in the Sun after I went to my office.

I now felt that I am following the complete Natural lifestyle as advocated by Acharya ji.

I successfully completed two months and lost 2 more kilos. My energy levels were normal. I was able to manage work and home with the help of my maid ,cook and driver.

My body was feeling much cooler than it ever was and also lighter.

Around the mid of 3rd month of starting this diet I felt that I should do my routine blood tests like LFT, CBP, RFT , Thyroid, ESR, HB, Uric acid, B12 etc. It was also one year since I did the Bone Marrow test. Last year in Jan 19 my Oncologist said I can do it after one year. I wanted to first do the routine tests and then go for the actual test.

The Thyrocare guy came home and took the blood samples.

….to be continued


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Update on my Bone Marrow Biopsy – M Band not seen !! 23 June 2018

It is one year since I got a Bone Marrow test done.

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I was diagnosed with MM in Oct 2011 and underwent Stem Cell Transplant in Jan 2012. Since then I have been doing the  Bone Marrow Test every six months. In June last year ie June 2017 ,  my Oncologist told me to come back for the test after a year !!. Once a patient crosses five years after a Stem Cell Transplant , the Bone Marrow Test is done once a year. That was the second best thing that happened to me. The best thing to have happened was in Feb 2016 when my Oncologist said I could stop taking Chemo Medications 🙂 .

I have been taking Ayurvedic medications since more than three years and the results are good.

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The Bone marrow sample was taken last week. Reports usually take around 5-6 days . I had been a little nervous while I was waiting for the Reports , though I was confident that all will be fine.

While I was in touch with the Hospital to check if the BMA Reports were ready , I was surprised to see a whatsapp message from my Oncologist after 5 days.

He sent me the Report via whatsapp !! There was no comment from him.

I opened the pdf document and quickly scanned for the words ” M Band ” or ” M Spike”, while my heart was racing. I did find the words ” M Band not seen ” .

Yayyy !!

There was a BIG smile on my face and I immediately called Dr Suresh.

He said ‘Everything is OK’ .

I said ‘Thank You Doctor , when can I meet you’.

He said ” what for ?”

I said ‘I would like to meet you’ 🙂

I then shared the Report via whatsapp with Dr Nitin , Ayurveda . He immediately called me.

He was very happy with what the Reports said.

Met Dr Suresh this morning .

He said ‘we don’t need to do the Bone Marrow Test from now on’. 

That is the greatest thing anyone like me would love to hear 🙂

I blurted ‘What Doctor, how can we stop?!!’

He said ‘just do the Electrophoresis test once every six months. As long as there is no M Band , there is no need to do a Bone Marrow Test’

I was happy with that advise.

Wow , no more piercing of my Sternum. 🙂

He then asked me if I had any other problems.

I asked him if Neuropathy is permanent and was happy to hear that it is reversible and no where it is written that it is permanent.

Sounds good but there has not been any improvement in my condition in all these years.

To alleviate my Neuropathy he recommended Pregabalin instead of Renerve which was advised by a Physician. Renerve does help but my B12 levels are exceeding the limits which not good either. Will try the Pregabalin tablets.

He then told me there are four new drugs for managing MM , with lesser side effects , one of them being Neuropathy. He also said that Bortizomib , the drug that I used , causes Neuropathy. This is good news . 

Its more than three years since I started taking Ayurvedic Medication from Dr Nitin and almost two and half years since I stopped taking Chemo medications. Dr Nitin now wants to reduce my curcumin dosage . However I don’t wish to hurry and plan to reduce gradually.

I also sent my report to Dr Gayatri, who was diagnosed with MM way back in 2002 . She has been a guiding and inspirational force for me since last three years. She had introduced Dr Nitin , Ayurveda to me. She hasn’t been taking Allopathy nor Ayurvedic medications since last several years and is doing well.

When I asked her how she Manages , she tells me that regular Pranayama , Yoga and Meditation do help in healing.

Felt so good talking to the Brave lady who oozes a lot of Energy. She is a God send.

Dr Nitin too had reiterated that Exercise, Pranayama, Yoga and Meditation can correct DNA problems. He insisted that I should be consistent with these practices.

Right now my highest priority is Pranayama, Yoga and Meditation along with Ayurvedic medication , proper diet and regular fasting.

Time to celebrate !!


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Metabolic Profile C – Test/Reports

It’s been three years since I started consulting Dr Nithin, Ayurveda and began taking Ayurvedic Medication for Multiple Myeloma.

He recently advised me to get a test named ‘Metabolic Profile C’ done.

This was the first time I was hearing about this test. 

Checked on the Internet and learnt that it is a package of 137 tests. Here is a link.

https://www.icliniq.com/en_IN/lab-tests-at-home/metabolic/metabolic-profile-c/PROJ1009076

I glanced through the information and guessed/concluded that it is a comprehensive test to check the levels of all the various Minerals and Vitamins in the body.

This test is offered only at Thyrocare diagnostic centers in India.

At the lab , three fasting blood samples were collected and it took 2 days for the reports to be ready. I was surprised to see the bunch of printouts . The Report had 24 pages in all 🙂

Started turning the pages one by one to find status of parameters like Magnesium, copper, Iron, Zinc, Vitamin K , Vitamin A , lipid profile, Glucose , B Vitamins , Vitamin D etc etc .

Almost all the parameters were in the Normal range except for B12 and Total Cholesterol which were just a wee bit more than the normal range. ESR was high as usual.

Sent the scanned copies of the reports by mail to Dr Nithin .  He said that almost all the parameters are normal. 

He also said there is no trace of any cancer. Yayyy !!!

But what are the parameters in this test that help in detecting Cancer ??!

When I checked the above link once again , I also learnt that the test reveals the levels of Amino acids in the body. There are around 20 Amino acids in all . The levels of Amino acids indicates the Metabolism in the body. It is the Mitochondria inside the cells which produce several of these Amino acids . The Protein in our diet is broken down into Amino acids in the gut . Mitochondria is one of the important Organelles inside the Cell and it is the Powerhouse of the cell. Only healthy Mitochondria can produce sufficient Amino acids to maintain a Healthy body. Amino acids are required for each and every function in the body.

Unhealthy Mitochondria are unable to produce sufficient quantities of Amino acids and also release lots of metabolic waste which is the initial stage of Cancer. 

Is there a way to  improve the function of Mitochondria ?

Yes, by Exercise, Intermittent Fasting , exposure to the Sun , reducing consumption of Sugar etc.

Here is what Dr Nithin has to say about the ‘Metabolic Profile test’ , in his own words –

Metabolomics is the latest in understanding the process of Cancer.

Metabolic profile is for detecting the defect in Metabolism by Mitochondria, a powerhouse of the cell , which becomes dysfunctional and causes fermentation on glucose instead of oxidation, causes release of lots of metabolic waste , which is the most initial step in cancer.

If these levels are normal , it indicates good functioning of Mitochondria. Which can be further inferred that Cancer process is being stopped or arrested. “

That was a revelation !!

As per my report , all the Amino acids are within the normal range.

My B12 level is a wee bit on the higher side. I was taking one capsule of Methylcobalamin (a form of B12) every day. Was advised to stop for 6 months.

I will be continuing to take Curcumin, Ashwagandha etc.

 

 

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Celebrated the good news by going to a restaurant and ordered Molten Chocolate cake 🙂 . I usually  avoid eating cakes as the main ingredient is all purpose flour (Maida) .