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


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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.

————————————————————————————————————————————

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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) .

 

 


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My new possessions : Traditional Indian cookware

Time to display a few cute things from my kitchen…..my new Possessions….I find them cute and beautiful … these are the Traditional Indian Cookware that I have been collecting since a year .

After a lot of googling on the Internet as to why to use Traditional cookware , where to buy, what to look for and how to use them , I finally decided to buy some stuff and experiment. I bought a few online . I purchased one from a local Organic Market and also bought another one from a local potter too. The micro nutrients from the materials used in making these cookware, make the food tasty and these nutrients are also required for a healthy body. Food gets cooked faster in these cookware.

Here they are:

My Cast Iron cuties :

Appa Chatti This is the cutest one. Quite heavy .

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This one is actually used for making Appams but I cook everything except Appams in this :). I use it to cook a small quantity of veggies for making chutneys (roti pachchadi). It also comes in very handy for preparing Tadka . I stir fry some soaked beans/lentils for a quick evening snack. I sometimes use it for making a small quantity of Aloo fry , Okra fry brinjal fry  etc as the size is small.

Dosa Pan Love the pan . It now has a smooth finish just like a non-stick pan. Requires very less oil for making dosas. Dosas cook quite fast and are tasty too compared to those cooked in a non stick pan.

Skillet This one is also equally heavy  .

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Am yet to start using this one. I see myself preparing curries , vegetable fries and maybe chicken fry too. This is being seasoned right now.

All of these are very heavy and have to be handled like lil babies, so as not to drop them on the floor or on your feet 🙂 . Cast iron products are brittle and can break if dropped on hard surfaces and in turn break your floor too and also the bones in your feet :). Got to be very careful.

Clayware :

Clay Pot : I have been cooking almost everyday in this pot, on a gas stove top.

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Usually , in rural India , these pots are used for cooking using firewood as fuel. After reading several reviews about using them on a Gas stove top , I went ahead and bought this one at an Organic Farmers market in the City. Very useful for cooking Dals ,Sambhar and Pulusu. 

Kadai : Once I started using the Clay pot and got the confidence I started eyeing one potter by the road side, close to my place of work. This woman had a variety of clay utensils. Water Jugs , Curd pots, Pots for curries in different sizes,  a flat thick  pan with holes for making Phulkas , kadais . I bought this Kadai.

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A kadai is much deeper than the Appa chatti . I have been cooking all varieties of  vegetable fries using this.

This type of Clayware is very light in weight and have to be handled carefully. They will break into pieces if dropped on a hard floor.

Stoneware: 

Kal chatti : 

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This is my latest possession. In the process of seasoning.

I have started bragging about my possessions and experiments with recipes to my family , friends and colleagues.

Cooking using Non-stickware , Ceramic ware,  Stainless Steel or Aluminium is no big deal. But when it comes to using traditional cookware one should first appreciate the benefits of cooking in these types of cookware and fall in love with them 🙂 . Next step is to learn how to season these types of cookware . Once the pots and pans are seasoned ,you are ready to start cooking . This is not the end of the story 🙂 . One should also know how to clean and store them so they last long and are ready for the next recipe. The only downside is that these have to be handled carefully.

I bought the appa chatti , the skillet and Kal chatti  online from villagefair.com and peacockcolours.com .

Go ahead and revive the traditional way of cooking. Eat tasty food and also stay healthy.

Happy cooking !!

 


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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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What to expect during and after a BMT (Bone Marrow Transplant) or Stem Cell Transplant

I get to talk/chat with caregivers/patients with Multiple Myeloma . Each one of them has a different set of queries.

One such patient, who was advised to go for a BMT by my Oncologist , was preparing to get admitted to the hospital and called me a few days ago.

I  first met him when he was just diagnosed and wanted to know about my condition in general.He was not ready to go for the BMT then. My Oncologist had suggested he speak to me and gave him my phone number.

The second time , he called me and he was more specific and wanted to know what to expect during the BMT ,while he is in the sterile ward .During the BMT process the patient is in a sterile and isolated room for approximately 15 days. This is a must as the patients immunity would be at the lowest and hence prone to infections.

He was worried whether there would be unbearable pains in the body, severe burning sensation in the stomach , whether he would be able to walk and other details.

This post is specifically to provide details as to what actually happens during the two weeks in the sterile room and precautions to be taken after the patient is discharged.

After the Stem cells of the patient are harvested from the patient (for an autologous transplant), the patient is moved to the sterile room. A high dose of chemo is administered to the patient via the ‘Chemo port’. All parameters are monitored every morning, which includes blood tests. For a few days the patient feels very normal and is given normal food. Around 4th day they start experiencing tingling sensations in the legs. The feet feel heavy , numb and restless. These are the symptoms of ‘Neuropathy’ (The fine nerve endings in body are affected, a side effect of chemo ). The mouth begins to feel dry and there is a mild sore feeling in the mouth. The patient is unable to eat spicy food. The digestive system gets affected as the lining in the esophagus  ,stomach and intestines become sore due to the chemo dose. Medications are given to soothe the digestive system.

During the first week , the patient’s blood counts go on  reducing , the WBC count becomes zero. Meanwhile the patient is given platelets and blood transfusions as the body is not yet in a position to generate its own cells. The patients own harvested stem cells ( our very own fresh and healthy new babies ) are given back to the patient via the port. These cells reach the Bone marrow and divide to form all the various other blood cells like Red blood cells, White Blood cells,  Platelets , Neutrophills etc .

During this period the patient is unable to eat any solid food. Food is given in the form of Fluids. A dietitian visits almost every day and based on the patients condition/feedback the diet is changed.

Around the 7th or 8th day the patient’s own WBC count begins to increase. This is an indication that the Stem cells have started doing their job.By the end of the second week , the counts of all other blood cells like platelets, RBC , Neutrophils etc increase and reach almost normal levels.

The patient will begin to experience loose watery stools, nausea and vomiting.

Not to worry much.Go with the flow :))

There were times when I would be frustrated and irritated with the nurses for no fault of theirs. When they took longer time to retrieve by blood samples or did not attend to me immediately when I give a buzz etc . At one point the Air Conditioning was faulty and I created a big scene and informed that I wanted to meet the Hospital Admin staff. But they kept calm and handled me well :))

Patient feels weak and may not be able to move around the room without the help of a nurse.

It is advised to get out of the bed and walk around the room as often as possible with the help of nursing staff.

At the end of two weeks , once all counts get back to normal the patient would be able to walk on their own without any help.

A day starts with blood samples being drawn. The patient is given a bath ,dried , moisturizing cream is applied to the body and dressed. Allow the nursing staff to do whatever they would like to do. Just hand over your body to them and cooperate.They treat you like a baby. Enjoy the pampering :))

Breakfast is served . Time for medication. All medications are given through the chemo port. Lunch is served. One can watch TV. The cleaning staff do their job. Time for a visit by the doctors . Depending on the patients condition, several doctors will visit and at times they might disturb your precious sleep :).  A dietician does a followup. Watch more TV. The patient may puke a few times and visits the washroom a few times 🙂 Watch all your favourite programs and channels during these days .

I would watch Travel shows, Discovery channel , National Geographic, Cookery shows on various channels ,Bhakti channels , NDTV Goodtimes. I was least interested in knowing what was happening around the world wrt current news. There will be short naps now and then. My Oncologist said that I could use my smartphone/tablet/laptop but I had no interest in being in touch with anyone. Most of the time an IV bottle is connected and hence difficult to move.

At times I would request the nurses to stay with me and we would chat and watch TV together.There were 6 nurses in shifts and we would share our stories. I frequently wanted my feet to be massaged and the nurses would gladly do it.

The skin colour becomes darker by a few shades due to the chemo. This is when we realize that being alive is more important than the colour of the skin or the appearance :))

There was a huuuge window in my room on the 3rd floor which overlooked the entrance to the hospital. The window covered  3/4th of the wall. I would watch people go by and wonder why the world is so complex when all that matters is to be alive. Being alive itself is a reason for celebration and happiness , and everything else is a bonus :)) .

You are permitted to talk to your near and dear ones on the phone. They may be allowed to visit once or twice.

On one of the days I was allowed to  see them through a small window in the nursing station once my counts began to increase.

My family would be waiting outside the Main door of the isolated ward most of the time during the day . They would be busy arranging blood donors from family , friends and colleagues and eagerly look forward to listen to what the doctors had to say on my progress.

Every day they would see my plate of food arriving and going back without being eaten. I would feel like eating different stuff but when it was brought I was unable to take even a few bites . There is no saliva in the mouth and it becomes very difficult to chew/swallow.

I would be worried that I was unable to eat. How would my cells multiple if I dont eat ??!!

But they do , so don’t worry about it :)) . Relax 🙂

There are no pains because of the Chemo nor any other burning sensation in any part of the body.

When you are ready to be moved out the sterile ward , you can actually walk out on your own but do sit down in the wheelchair and enjoy the ride to a normal ward . It is a great feeling to be finally out in the world  :).

You will be in the normal ward for a couple of days. These few days seem like ages :)). Every hour seems like eternity. Finally it is time to go home … the sweetest place on earth 🙂

The next one month is going to be difficult when it comes to eating food. The nausea and vomiting continues . You will be given medication to reduce nausea. Continue to take fluids and protein supplements prescribed by the dietician. Ensure you meet the dietician before you are discharged.

Have patience ..a lot of patience is expected from the patient as well as the caregivers.

you-have-come-this-far-dont-give-up-now-patience-quote

The patient feels very weak . The bones are very tender and some effort is required to even turn your body on the bed. But that’s okay . Things will improve . Do a few exercises while lying on the bed. A physiotherapist will guide you during your stay in the hospital.

Take all your medications without fail. Feel free to talk to your doctor as and when you experience any problem or have a doubt.

Drink lots of water.

Do not venture out of your house for a couple of months. Since the patients immunity is low they will be susceptible to infections. Need not worry even if there are any infections. Just go ahead and get the medications. Stomach , throat , eye , respiratory , skin infections are some of the common issues that one might face.

Have patience . This too shall pass !!

this too shall pass

In a few weeks you would want to eat all kinds of stuff , but go slow as the digestive system is not yet strong .

In a few months you will be back to normal and you can go back to doing whatever you were doing.

This is also the right time to look up for information on alternative therapies on the Internet. Do you own research and you will definitely find a way to stay healthy and beat the BIG C forever.

Best Wishes !!