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


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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.

~Sarve Janaha Sukhino Bhavanthu~

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My BMA results

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My Serum Protein Electrophoresis and Beta 2 microglobulin serum results are out.
‘No M band is seen’ in the Electrophoresis test . Yayyy … On seeing these words I immediately say a little prayer thanking Almighty.

The Kappa parameter is on the higher side while the Kappa Lambda ratio is in the normal range.Not to worry as I am confident that Kappa too will be normal soon.
My Oncologist expressed his happiness and we were all ears to listen to what he had to say next.
Said I can take a break from Lenolidamide for another three months. Yayy .
It’s been 3 months since I was told to stop lenolidamide and I need not take it for another three months. I was patiently waiting for exactly this kind of news and had this wish for a long time. Hopefully I will never ever have to take it again.

Every month for the last 16 months I was getting the CBC , LFT AND RFT tests and meeting my Ocologist with the reports. He was closely monitoring me since the relapse in Dec 14 and i was advised to go for a second Stem cell transplant after 3 months. However there was no need to go for it as my M spike was zero in the subsequent tests after the relapse.
This 3 months break is such great news and a great relief.
I feel like screaming and shouting and telling the whole world.
My confidence and belief that my condition can be reversed has come true and quite quickly too.

Informed Dr Nitin , my Ayurvedic doctor , about the results and he too was glad and wanted me to do a writeup on my experience and progress with Ayurvedic medication and Fasting so he can share with his students and others who can benefit.

Will post the writeup here soon.


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Alternative Treatments for Cancer

 

miracle ahead

People with chronic diseases go for various treatments depending on the faith they have in a particular treatment.  Most use allopathy by default, as the duration of treatment is the fastest ,success rate is highest and the results are quick. Some follow a different treatment based on the experiences of their near and dear ones or when Allopathy has no solution or as a last resort.

But usually for cancers Allopathy is the first and foremost treatment that one opts for as the diagnosis itself happens in the third or fourth stage wherein the disease would have progressed to a large extent and Allopathy would be the best treatment. .

I didnt think of Alternative treatments for two years after I was diagnosed with Multiple Myeloma . I started experiencing side effects of Chemotherapy in the third year and I began scouring the internet for other treatments.

Internet is full of articles on Alternative Treatments . Initially I didnt believe all that was written on various websites and was being said on youtube videos by patients. I found them ridiculous too. Always wondered how it was possible that people are getting cured of Cancer which is not curable . Not just ‘managing’ but they were getting ‘cured’ and have been living for decades without any Allopathic treatment. I felt that these people were just exaggerating , that they wanted people to watch their videos , knowing that many would be looking up , that they were just uploading these videos to get a lot of views/hits. There were websites which talked a lot about a cure but at the end of the page there is a link to a book with a price or some secret methods which confirmed my fears that people only wanted to make money by luring desperate patients.

I wanted to believe all this was true , that there is a way , but was not convinced.

I came across various articles on the reasons for cancer and a cure. Juicing, diet, exercise, detox , supplements, antioxidants , various high frequency protocols, immunotherapy , Ph therapy, effect of yoga and meditation for curing the disease and the reasons for cancer varied from DNA mutations to microbes to lack of Vitamin D , poor diet , stress etc. These are a few of the topics that I was reading and trying to digest . All the information was baffling.

Just when I relapsed , at the end of the third year after my Bone Marrow Transplant for Multiple Myeloma, I came across a blog written by Margaret , a patient with Smouldering Multiple Myeloma. She was using natural supplements and has been successfully ‘managing’ the disease for more than a decade. After reading her blog , all the information and videos that I had seen suddenly flashed across my mind and I began believing all that I had read and seen. Suddenly all of it made sense. I was desperate for an alternative solution.

I talked to my Oncologist if he could recommend any Ayurvedic doctor but he was unaware of any specialist in Ayurveda. Ayurveda is an ancient Indian mode of treatment  which uses natural herbs for curing various ailments. He didnt discourage me from using any alternative treatment and advised me to use ‘Tinaspora Cordifolia’ , a natural immunity boosting supplement.

I recommend everyone to do their own research. Once convinced one has to start incorporating one or more methodologies as per their faith and convenience. One needs to have faith in the treatment and should go all the way and follow the methodologies scrupulously.

I have almost given up food products made with sugar , milk , all purpose flour , rice and also reduced salt intake .All of these comprise a bad diet. These are the five white poisons that Ayurveda recommends to avoid.
I also read that cancer cells feed on sugar. I initially started taking supplements like Curcumin (in the form of turmeric) suggested in Margarets blog , started doing Pranayama and meditation , I also started taking ashwagandha , shigru , punarnava , garlic , had ginger decoction in the morning, eliminated most acidic foods  and lo and behold within three months my MSpike was down to Zero !!

It is nothing short of a miracle.

I was later referred to an Ayurvedic Doctor by another MM survivor and since then I have been using Curcumin and other natural supplements since last one year. Fasting is also part of my regimen. I have been encouraging the use of Curcumin to whomsoever I come across. Curcumin is an extract from turmeric .Turmeric is a spice that is extensively used in South Indian cooking and as a medicine in India for various ailments.

It is one year and 3 months since I started following the new regimen and my M-Spike is in control.

Talk to other patients and their caregivers who follow Alternative treatments make your own decision.

If there is a will to survive , a solution will appear out of the blue. Never give up !!

Have patience and the Miracle will happen.


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Results of my Bone marrow test

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It has been 6 months since I had my Bone marrow test done.The previous test was during the end of April this year. In April , for the first time since my diagnosis in 2011 , my M-spike was ‘not seen’. That was the greatest news ever.

I have been taking Circumin and other ayurvedic supplements since January this year. Along with these I am also on a fasting regimen since one month.
I have been avoiding foods made with all purpose flour(maida), sugar , milk and curds.

All the above has definitely helped me in keeping the M-spike in control and this time too the ‘M-spike’ is ‘not seen’.

However , my hemoglobin level is at 9.7 and I need to work on this.

In spite of Hb being low I feel much more energetic than ever. It feels so good to be so active. I have never been this active in a long long time. I am able to concentrate and perform well at work too.

Incidentally today is ‘Dhanvantari jayanti’ along with ‘Dhanteras’.
Dhanvantari is the God/father of Ayurveda.
My heartfelt thanks to my Ayurvedic doctor who has been treating me remotely from Mumbai.

I feel blessed and hope to have a bright and beautiful Diwali.

Happy Diwali !!


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My Diet on fasting and non-fasting days

I am sincerely following the advise of my ayurvedic doctor since last 6 months.
It is now time to change my diet and incorporate ‘Fasting’ along with his medication.

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Diet prescribed by my Ayurvedic doctor for 2 weeks is as follows :

Monday,Friday : Fasting ( i can eat 2 or 3 fruits maximum during the day if feeling very hungry , i can have tea 2 or 3 times. For dinner I can have vegetable soup )
Tuesday, Wednesday, Thursday, Saturday
Breakfast : idli/dosa/upma with 2 egg whites
Lunch : rotis made of jowar/Bajra/Ragi flour with vegetable curry and Dal
Snacks during Tea time : dry fruits/fruit/poha with tea
Dinner : vegetable soup and kichdi (moong dal) before 8 pm and papaya along with a few black raisins before sleeping.

Following foods to be avoided :
-white polished rice
-curd (butermilk is allowed)
-fried food
-all purpose flour/maida
-sugar
-Toor dal
-wheat
-Non veg

Following foods are allowed: Urad , Moong and chana dal, Brown rice

Being a South Indian , basically from Hyderabad my typical breakfast consists of Idli/, dosa/upma with coconut/groundnut chutney on weekdays . On Sundays it is Puris/chapati/pesarattu . My lunch/dinner usually consists of Rice with vegetable dal curry , vegetable fry , vegetable chutney, curd or rasam .

With the new diet breakfast is not a major problem.
I bought Jowar , Bajra and Ragi flour from the supermarket . Thankfully all are available . What next ?!. My cook nor I have never prepared rotis with these flours. Started watching youtube videos (my favourite pastime) on how to make rotis with these flours. After watching a few videos , it was time to get moving….Oh no ..we failed miserably…the process requires experienced hands to roll the rotis .
What next !?
I was beginning to get worried. What would i eat for lunch ?? 😦
I am allowed to eat Brown rice but nooo i dont like Brown rice. 😦

I remembered watching a video on making ragi dosa ..yesss… i searched for ragi dosa again . I then got an idea. If one can make Ragi Dosa surely there would be recipes for jowar dosa and bajra dosa too….yayyy….i did find a few videos…wowww what a relief.. phew .
But dosas would require oil whereas rotis can be made without using oil. I have no choice and decided to use olive oil to make the dosas. My cook and I made Jowar/Bajra/Ragi Dosas for 2 weeks 🙂

Coming to Soup for Dinner.. I never prepare soup at home. But when we go to restaurants we always order soup.
So it was time to look up some videos on youtube. Found a simple recipe and felt happy.
Kichdi is no big deal and not a problem.

I successfully incorporated this diet for 2 weeks.

On the first day of fasting ie Monday ,I had one cup coffee and 2 cups of Tea. I also had 3 fruits during the day. I was so hungry end of the first day that as soon as i went home after work i directly went to the kitchen and started prepare vegetable soup.

Aaah the first spoonful of the veggies in the soup tasted so yummy. I finished off the big bowl of soup in no time. Felt full and so good.

The second day of fasting was on Friday and i went home a bit early , relaxed for a while before i made the soup.I had one cup coffee, and 2 cups of Tea. I had 3 fruits during the day. Had vegetable soup for dinner.

The soup consisted of cabbage , carrot, capsicum , baby corn and spinach. Will write about the soup in my next post.

Fasting during the second week was not very difficult. I was able to manage with 2 fruits and 3 cups of coffee/tea 🙂 This time i tried a different method of making soup. Turned out yummy too. I didnt feel too hungry and i guess my body understood what i am upto and is beginning to help me 🙂

Will post recipes on my dosas/soups soon.

I am so glad i could successfully complete 2 weeks of the new diet and am confident that i can continue if required.
Anything to improve my health and to forever change and strengthen the cells in my body.
This diet is recommended for all Cancer patients but only under the strict supervision of an Ayurvedic doctor.


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Curing diseases by Fasting ?!!

I am currently taking ayurvedic medication along with Lenalidamide 5mg for Multiple Myeloma.
My ayurvedic doctor has advised me to fast twice a week on Monday and Friday.
I have been fasting since last week and today is the second day in this week.
I can sip warm water through out the day. I can also take tea/coffee( 2 or 3 times) and fruits ( 2 or 3 ) if i feel very hungry. I am allowed to take vegetable soup for dinner. I started fasting without asking any questions.

This is my food for the day.
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I have never fasted in all my life and always wondered why people fast , especially when it is linked to religion and rituals.

I have been able to manage last week and this week but a lot of questions have been popping up in my head.
What if i become too weak in the process? what if my immune system weakens further? What will my Oncologist say if i tell him about my fasting? Can i take allopathy medicines during fasting? Am i doing the right thing ?

My ayurvedic doctor has been asking me for the feedback as to how i feel during and after the fast and i did express my concerns this morning.
He told me to read an article on ‘fasting before chemotherapy’ in the ‘Biomed journal’ . Googled for these words and found a few links .
Read the information in one of the links http://www.biomedcentral.com/1471-2407/15/652 . Found the article too technical for me but got a gist of what was being researched. Seemed interesting. The cells which get damaged due to chemotherapy recover faster if a patient has been fasting prior to chemotherapy.
Also protects normal cells from the side effects of chemo.
Came across articles where people got cured of gall stones , cancer after fasting.
Other articles suggest when the body is on a fast all the cells go into a ‘repair’ mode . The DNA repairs itself and the result is a stronger immune system. Fasting enhances the functioning of cells and kills the cancerous cells.

Wowww sounds great !!

While reading this my mind wandered to know more about Ayurveda and fasting. Googled and found some interesting information. Ayurveda mentions cleansing the body of toxic wastes that have accumulated in the body, balancing of doshas , improving the digestive system etc.

I am now convinced that fasting is a must.Fasting has always been a part of life for the devout and intrinsic to most religions , although common man fasts with an intention of salvation rather than for health, which is a side effect of fasting anyway :).

“The best of all medicines are rest and fasting.” – Benjamin Franklin.