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

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Feeling inspired by a ‘Yoddha’.

Met Mani , a Yoddha (‘Yoddha’ means ‘a warrior’ , in this case , a warrior fighting against Cancer ) on a whatsapp group comprising of ‘Yoddhas’ . This group was created by Mr Rahul the founder of yoddhas.com.
I was sharing my good news with other Yoddhas and mentioned that I am yet to start consuming Curcumin when i saw a message from a person named Mani (name changed) who said that I can get Curcumin from an ayurvedic doctor in Mumbai.
She gave me Dr Nitin’s emailid and phone number.
But before I talked to Dr Nitin I wanted to talk to Mani and know more about her condition.
Called her and heard the voice of a very strong and bold woman who lives in Delhi.
Her story is very inspiring and I was spellbound listening to all that she went through in the last 15yrs.

Mani had an Autologous stem cell Transplant in 2001 and a partial Allogenic stem cell transplant in 2003 (Bone marrow from a donor ,her brother). She had to undergo several minor surgeries because she had lesions in various parts of the body. She later came across Dr Nipun and started using the ayurvedic medication prescribed by him.
Her condition started improving and for the last few years she hasn’t been taking any medication.
I was stunned and simultaneously excited listening to her success story.
Mani said I should talk to Dr Nitin and can also refer her name when i speak to him.
I sent a mail to Dr Nitin mentioning my condition and also listed out my concoction of self medication inspired by Margaret.
I received a prompt reply from him , suggesting I add ‘Punarnava’ to my list and also wanted me to give him feedback after a month.
Thanks Rahul , for creating the group ‘Yoddhas’

I have ordered Curcumin from BIOVEA.com and eagerly waiting for the parcel 🙂


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My ‘Curcumin Regimen’ and other Natural supplements for Multiple Myeloma

I have been using the following Natural supplements since 2 months ,inspired by Margaret . Some i have included based on other research  . I am confident that these natural supplements are doing a great job .
1. Haridra (Circuma Longa/Turmeric) 400mg from Himalaya  – 2-3 times a day
2. ‘Flaxseed oil’ capsules 500mg from Sri Sri Ayurveda – along with Haridra
3. ‘Garlic oil’ capsules 500mg from Sri Sri ayurveda – 2 times a day ( self discovery . noticed that severe itching in my throat because of Lenalidomide subsides with Garlic)
4. ‘Ashwagandha’ capsules (Withania somnifera)  250mg from Himalaya – 2 times a day
5. ‘Guduchi’ capsules 250mg (Tinaspora cordifolia) from Himalaya – 2 times (advised by my Oncologist)
6. ‘Shigru’ capsules 250mg (Moringa pterygosperma) from Himalaya 250mg – 2 times a day
7. Amla candy (Goose Berry , rich in Vit C ) 4-5 pieces – 2 times a day .
8. Every morning i drink ginger (one inch piece)  decoction to which Lemon juice (quarter lemon) and turmeric powder (from my kitchen) is added.
9. At times i replace ginger decoction with decoction made with leaves of Simarouba Glauca (There is a post on this in my blog ) I add Turmeric powder (from the spice rack in my kitchen 🙂 ) and lemon juice.
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Apart from the above i continue to take the following Allopathic medications as per the advise of my Oncologist and Physician :
1. Renerve (Methylcobalamin ie B12)– One per day
2. Antoxid HC (Beta carotene,Selenium,Zinc Sulphate,Manganese , Copper) – One per day
3. Calferon plus ( Calcium,D3 (Vit D) )- 2 times
4. Acivir (Anti viral)- 800mg (one every alternate day)
5. Lenangio (Lenalidomide) – 5mg ( one per day)
6. Dexorange (Hematinic syrup) – once or twice a day whenever my Hb count is below 11
7. Ecosprin 75mg (Aspirin) – One per day after lunch
Have been using the above for 2 months . I feel energetic, my constant muscle pains have disappeared , I feel less anxious.
My current results are M spike : Not seen and Plasma cells < 1% .


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M spike – Not seen !!

My Bone Marrow test results , 4 months after changing to Lenalidomide from Thalidomide , are out.

For 3 yrs prior to Dec 2014 , post Autologous Stem Cell transplant in Jan 2012 ,  i had been taking 50 mg and 100mg of Thalidomide.

My hubby , dad and I went to the hospital yesterday , to pick up the reports.

We were very apprehensive as to what the results would be. We opened the reports while walking towards the lift and saw the words ‘M spike – Not seen’ . Whatever that implied !!??

My Bone marrow aspiration was done exactly 5 days ago and that day i had asked my doctor about M spike ,what it meant and what should be the ideal value. He said that the value is ‘zero’ in a healthy individual.

When we showed the reports to my doctor , he said that the results are absolutely fantastic. ‘Not seen’ implies the M spike is ‘zero’ . He was extremely happy for us and we were very excited. The plasma cells too were less than 1% which was 10-12% 4 months ago ( a relapse)

I asked him if Lenalidomide is the reason, he replied ‘ you are responding very well to Lenalidomide’

In Dec 2014 my doc had said ‘ Sorry, you may have to be prepared for another round of SCT after 3 months’ and yesterday he said ‘No worry , we need not do the SCT now ,we can postpone till we reach 25 mg of Lenalidomide which is available in 5 mg , 10 mg, 15 mg, 20 mg and 25 mg and it may be 2 yrs or 5 yrs before we reach that dosage’

For now he told me to get back after 2 months with CBP , LFT and RFT reports.

Dad was so excited , he called up Mom and Sis and updated immediately.

Hubby immediately opened the first BMA report after 6 months of my transplant and showed us that the latest report is the best ever. The results even after the transplant were not as good as they are now 🙂

We thanked the doctor and the Almighty and came home.

We hadn’t mentioned the Alternative natural products that i had been using for the last 45 days.

I had discussed these during my visit last month when i went to show the CBP,LFT,RFT reports.

He had said i can go ahead with these products and that he is not against alternative treatments. His reply gave me a lot of relief.

I strongly believe that using natural supplements and immune boosting foods did have a major role in bringing down the M spike and plasma cells.

Will write all about my Ayurvedic protocol , inspired by Margaret , in detail in my next mail.

I am so excited that i wish to scream to the world about my Ayurvedic discovery and share with other patients suffering with Multiple Myeloma.

Here is an interesting article on Circumin( Turmeric) and Multiple Myeloma

http://www.myelomabeacon.com/news/2010/02/17/curcumin-and-multiple-myeloma-preclinical-and-early-clinical-studies-are-promising-still-awaiting-more-clinical-evidence/