Shutterbug's Blog

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


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To Reveal or not to Reveal

Having been diagnosed with MM in Oct 2011 and come a long way ,  a thought often arises in my mind as to whether I should reveal/discuss my condition with whom I spend a considerable amount of time.

A lot of people around me , at work , friends and relatives already know to some extent. They may not know exactly what I have been through. However my observation is that no one ever asks me any direct questions. Many of them come to know through various channels but prefer not to talk about it. 

Either they dread talking about this topic or they feel they shouldn’t cross a certain limit as health is supposed be a private matter or they don’t start the topic because I don’t encourage such a discussion or people are engrossed with their own stuff.

Whatever be the reason , I am quite comfortable with the way things are happening around me….ignorance is bliss 🙂

I myself have been through similar situations in the past , much before I was diagnosed, when I came across people who were diagnosed with Cancer and I would be terrified to even look at them. So , here I am , having survived Multiple Myeloma and writing from the other side :).

hmmm , what goes around comes around !!  

When someone asks me how I am doing , I give a big smile and tell them ‘I am doing well, thank you’. There are a few confidantes at work, with whom I share information about my tests, my medications etc . I also update my Boss who has a lot of interest in matters related to health / Alternative treatments and gives me some advise too.

There are a few online friends from school and college with whom I feel happy to share the status of my health.

Apart from my parents, brother and sister I do not discuss with any others in the extended family. Of course , hubby is a constant support 🙂

There are times when I feel tempted to share the link to my Blog with everyone at work, extended family and with all my classmates  from school and college. I guess I am not yet ready to openly declare…maybe some other time. I can already sense that a few are staying away from me and it is ok. 

I shouldn’t be thinking too much about who knows and who doesn’t and concentrate more on enjoying the present moment. 

The best part of this blog is I can let out all my feelings and share my MM journey and other random events in my life.

So glad I am finally stable. 

A few readers (MM patients/caregivers) of my Blog get in touch with me and I am more than willing to listen and encourage them. Gives me immense happiness to know that I have made a difference to them. I hope to get more opportunities to do my bit to humanity.

 

Life seems much more meaningful now.

 


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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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Bone Marrow Biopsy (after a year) – 14 June 2018

Been a year since I had the Bone Marrow Test.

I took the test once every six months since 2012. However, last year in June ,my Oncologist Dr Suresh said I can meet him after a year. This test is done once every six months during the first five years after a Stem Cell Transplant and from then on it is done once a year as per the protocol. My Oncologist , being an Optimist and a Crusader told me last year that I am ‘Technically Cured’. Sounds wonderful isn’t it !!? 🙂

I have been using Curcumin , Ashwagandha and other herbal medicines since last three years. I get these Medications from Dr Nitin, Ayurveda . Since last two years , on the advise of Dr Suresh , I stopped taking chemo tablets.

The past year has been quite smooth ,  except for the Sore throat infection a couple of times. My Vitamin D levels were low and I am taking supplements to improve the levels.

The day has finally arrived.

After the Bone Marrow Aspiration procedure was completed , my Oncologist asked me if I was comfortable. Yes, he does the bone Marrow aspiration. I said , I am comfortable and he smiled and said I am his only patient who doesn’t crib or complain :). He must be kidding. He is definitely the best , he completes the process in a jiffy. It is all over in a couple of minutes , all through he would be chatting . I can’t imagine anyone else doing the procedure .

Blood samples were taken for the following tests : Immuno globulin , Electrophoresis , Bone Marrow aspiration, Chem 20.

Will have to wait for a week before the Reports are out.

Till then I plan to watch a few movies on Amazon Prime 🙂

 

as you wish

 

Take Care !!

 

 


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7th year after my Stem Cell Transplant for Multiple Myeloma

The last six years have been the longest years in my life. Extremely grateful for being given a second chance to tread our lovely blue planet .

Been living each day with gratitude and lots of hope. Doing my best to share my experience with Alternative treatment via this blog. Have been able to manage my condition (Multiple Myeloma) successfully. It’s been 2 years since I stopped Chemo. So far so good. Was able to help and guide other patients with MM who came across my blog and got in touch with me . Gives me immense happiness.

Learnt a lot about the importance of diet , fasting etc for preventing and treating Cancer. Most importantly , I have experienced the Miraculous healing properties of Curcumin , for managing my condition. Curcumin has powerful healing properties which can treat several diseases.

Nothing else in this world is more important than being alive. Everything else is a bonus 🙂 . Yes, it does sound like I am selfish 🙂 . Take utmost care of your health and love yourself a lot. Be healthy so you don’t have to trouble your near and dear ones if you fall sick.

I am so thankful to my Doctors , family , friends , colleagues and other well wishers who have been supporting me throughout.

happy


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Herbal tea for prevention of Cold , Cough , Asthma

Here is the recipe for preparing Herbal Tea for preventing Cold , Cough and Asthma. The Tea can be taken every day.

Check out my previous post on how one can prevent/manage Cold , Cough and Asthma without having to take Antibiotics.

Cough , Cold , Allergy , Asthma : Ayurveda for Prevention and Treatment

Recipe for Herbal Tea

Ingredients:

  • Turmeric powder – 1/4 tsp , Raw turmeric root can also be used (1/2 inch piece)
  • Cinnamon – one inch piece or 1/4tsp cinnamon powder
  • Cloves – 4
  • Peppercorns – 10 or use 2-3 pinches of pepper powder
  • Coriander seeds – 1/2tsp or Corainder powder 1/4tsp
  • Cumin seeds – 1/4 tsp (optional)
  • Basil leaves (Tulsi)- 10 leaves
  • Ginger – one inch piece
  • Salt – one pinch
  • One glass of water

Not to worry if one or two of the above ingredients are not available at any point of time. Go ahead with whatever you have on hand.

Procedure:

Crush the ginger and raw Turmeric .

Add all the ingredients to the water and boil for 5-10 mins.

 

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Drink this tea on an empty stomach.

During Summer , reduce the quantity of Pepper and Ginger as these increase the body heat.


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Cough , Cold , Allergy , Asthma : Ayurveda for Prevention and Treatment

I am one of those  who are highly allergic to all kinds of dust and frequently end up with a Sore Throat followed by Bronchitis. A visit to the Doc , followed by Antibiotics and Nebulization … a ritual that was inevitable. 

I was able to successfully get over a recent episode with Ayurvedic Medication and no Antibiotics. I am extremely happy that I can now manage my problem without Antibiotics. Thanks to Dr Nithin, Ayurveda.

However, I still did not get an answer as to why only some people are affected by dust and pollution. Millions of people around us are unaffected and continue to live/work in highly polluted environments. How are they managing ?

Here is a beautiful article that explains  how and why a person ends up with Cough/Cold/Asthma. Understanding ‘Cockroach Theory’ will help in understanding how the Immune System works in our body .

https://www.practo.com/healthfeed/ayurveda-treatment-for-allergies-asthma-29041/post

This article is written by Dr Nithin ,Ayurveda .

I had to read this article a few times before I fully understood the how and why and what has to be done to prevent an occurrence of Sore Throat and Asthma.

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Here is a summary of what I learnt from that article –

Cockroach Theory : A panic reaction to a situation , whereas the solution is to respond in a calm and composed manner. An example : Customers in a restaurant get panicky and react clumsily on seeing a cockroach whereas the waiter , on whom the cockroach finally lands , stays still , is able to catch hold of the cockroach and throws it out.

The above theory will help us understand how the Immune cells in some bodies overreact instead of responding , when rogue viruses/bacteria enter our body. This overreaction results in excessive production of mucus which clogs the respiratory system. The body then tries to expel this mucus by coughing resulting in a Sore throat. The reason for this kind of reaction by the body is ‘Aggravated Pitta’ .

‘Pitta’ has to be reduced by the following methods (from the article):

  • Recipes like sesame seeds boiled in milk or pumpkin pulp roasted in homemade ghee or almond porridge, halwa etc can be taken.
  • Liberal use of turmeric either in milk or dal to be encouraged as Turmeric reduces inflammation and also breaks rigid bonds of thick mucus which can be expelled easily.
  • All asthmatic and allergic rhinitis patients should take herbal tea of ginger, black pepper, Tulsi leaves, clove, and coriander seeds.  
  • They should eat less of wheat and rice and should consume more of millet like Jwari or Bajri .
  • Once in a week all asthmatic should take Kulthi (Horse gram) dal.
  • Patients of allergic rashes can try having mixed powder of black pepper- 1 or 2 pills + ginger 1/4th teaspoon and candy sugar one teaspoon, once or twice a day.  
  • All of them should strictly avoid all kinds of fast or junk food, pickle, sauces, milkshakes .
  • They should not consume curd, non vegetarian food, heavy , fried food  at night time.
  • All asthma, allergic rhinitis and urticaria patients should religiously do pranayam, as deep breathing will reduce hyper activity and will relax smooth muscles of the air ways, thereby reducing spasms in the air ways and reduction in the episodes of Asthma. Plus deep breathing also helps in reducing inflammation in blood vessels thereby reducing allergic rashes. 

 

My Plan of Action :

I have started consuming Herbal Tea (ingredients mentioned above) . Will write a post on how I prepare this Herbal Tea.

I just bought Horse gram and looking for recipes on the Internet.

I have to further reduce intake of rice. I rarely consume wheat.

I include Turmeric in the Herbal Tea.

I avoid junk food and don’t consume curd/non-veg at night.

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ayur

 

 

 


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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) .