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


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Multiple Myeloma, Symptoms

Multiple Myeloma is a condition when Plasma cells in the blood start misbehaving. These cells form antibodies , which fight infections. When these plasma cells undergo mutation in the DNA, they develop into antibodies which do not perform their job well and on top of that they do not die. They are supposed to die after doing their job well. This is called apoptosis. Every cell in the body dies after doing its job. When they don”t die and start accumulating in the blood  and inside the Bone marrow the condition is called Multiple Myeloma.

  • Low immunity
  • Anemia
  • Back pain
  • Pain in the feet and legs in general
  • Pain in the lower ribs and also just below the lowest part of the ribs on either side of the body
  • Feeling weak and lethargic
  • Always feeling sleepy or wanting to rest . Waking up early is difficult.
  • Suffering from frequent infections in the throat, stomach etc

These are the usual symptoms and were my symptoms as well , before I was detected with MM.

I always felt very weak. I would find it very difficult to wake up and get out of bed. I always wanted to sleep. I kept dragging myself to work . I was unable to stand for more than 10 minutes while I cooked. My feet would begin to ache and I had to sit down every 10 mins. I met several physicians in the last few decades. I also went for a complete health check up too. All of them recommended Iron supplements for my perennially low Hb count. I always took the course and felt good for a while and soon my symptoms were back. The cycle would repeat.

I frequently suffered from throat infections since I was a child and had to pop in a lot of antibiotics too. I also suffered from bronchitis as I am allergic to dust. This too could be due to low immunity. I kept telling my doctors that I frequently fall ill but none of them suggested any further investigations.

Many times I would be told to get a chest X-ray done as they suspected TB, but the result was always -ve.

I had also met an Ayurvedic doctor who checked my pulse . It is called ‘Nadi pariksha’. He prescribed a lot of medications too and said I was highly stressed and that I should do pranayama and meditate regularly.

My actual problem went undetected for decades.

I suffered a lot when I had my periods. They would always arrive early. Severe cramps ensured that I take a pain killer and was unable to go to work. I hated myself for being a girl :((

One day in 2011 , I slipped on the stairs and had an L5 compression fracture in my spine. My bones had become very weak. A normal healthy individual would not have been affected by that kind of a fall. Don’t know how and why the Orthopedic doctor did not suspect that something else could be wrong. He could have at least told me to get a test for calcium and Vitamin D done. I was told to use a cross shaped device for 3 months to heal my fracture.

Just after I recovered from my fracture , I collapsed and fell sick . I suffered from viral fever, throat and stomach infection simultaneously , started experiencing chills with fever in the evenings. A physician who had a clinic where we lived suggested I get blood transfusion as my Hb was 6 . We then decided to go to Apollo and get a second opinion. The Physician there suspected MM after a few preliminary tests.

A few tests like LFT, RFT and CBP can help in pointing towards MM.

A high ESR because of inflammation in the body. CBC Report gives the ESR value.

A high Serum Creatinine in RFT report.

Serum Globulin in LFT would also be beyond the limit.

Hb would also be low as per CBC report.

These are some of the parameters that can give away MM to a discerning physician.

Further tests including Bome marrow tests Electrophoresis will be done to confirm.

Thanks to Allopathy and Alternative treatments for giving me a second chance. I am actually living a healthier , productive and happier life after my Stem Cell Transplant followed by Ayurvedic treatment and proper diet.

So glad I got a second chance to tread this beautiful planet.

You too can !!

Have faith in the treatments and in yourself.


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Update on my Condition – Multiple Myeloma

It is 3 months since I had my Bone marrow test .My results were -ve , No M-spike was seen.However , my Oncologist wanted me to be back with my CBP , LFT and RPT reports after 3 months. I actually expected he would say  I can come back after one year 🙂 but he didn’t want to take any risk. So I complied. I remember him saying that after 5 years of having the Transplant (Bone marrow Transplant) , I will have to take the Bone Marrow Test once every year. For the past 5 years I have been doing the test every 6 months .

My Hb touched 11 for the first time in decades. The range for a healthy woman as per my report is 11-14. This is an achievement !! A record break !!

Yayyyy !!

My Globulin Serum too is 34 which is well within the range. A bigger achievement !!

He was very happy on seeing the reports 🙂  and exclaimed ‘you are off all medication isn’t it ?!!’.

I said “Yes Doctor, but I am continuing to take Curcumin and I am sure it is helping me “.

It is one year since I stopped chemo and taking only Ayurvedic medication.

He then asked me , “Do you think  people should go for a Bone Marrow Transplant”.

I was confused.

I immediately said “yes,  there is no other option “.

I then reminded him about the advise he gave me , after my Bone Marrow Transplant (in Jan 2011)  , about using “Tinaspora Cordifolia” , to improve my immunity. Later on , it was this advise that motivated me to look for alternative treatments and I finally found the way.

Having started using Curcumin 2 years ago ,followed by good results , I had been very eager to push Curcumin  and I wanted my Oncologist to prescribe Curcumin along with Tinaspora Cordifolia to all his other patients.In fact, I started using Curcumin, two years ago, just when I was advised to go for a second Bone marrow transplant .

The right time had arrived and I blurted out ” Doctor , you can also recommend Curcumin to other patients. I have read a lot on the Internet and it prevents and treats all types of cancers.My ayurvedic doctor gives me Tinaspora Cordifolia too ,along with Curcumin and some other herbs”

He nodded and  I felt relieved that I finally said what I wanted to say :))

It is a delicate situation wherein a patient suggests an Allopathic Doctor to prescribe Ayurvedic Medication to his other patients . I am so glad that my Oncologist is open to try out other forms of treatment and encourages his patients.

Hopefully more patients will benefit and will be encouraged to try ayurveda , the way I did.

My sincere thanks to Dr Kochar, Ayurveda and Dr Suresh , Oncologist.

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My current regimen for Multiple Myeloma

I was diagnosed with Multiple Myeloma in Oct 2011. I Underwent Autologous Stem Cell Transplant in Dec 2011.

I was on Thalidomide from June 2012 to Dec 2014.

In Dec 2014 my plasma cells started increasing and my Oncologist suggested that I go for another Transplant. I was put on Lenolidamide.

After some research on the Internet I started taking Ayurvedic medication. After three months my condition improved.  I met Dr Kochar in Apr 2015 and started taking his medication along with Lenolidamide.

On the advise of my Oncologist , I stopped Lenolidamide in Feb 2016 , as I was in remission.

That was the most miraculous moment in my life 🙂

I continue to take Ayurvedic medication prescribed by Dr Nitin Kochar, Mumbai.

I am currently taking the following Ayurvedic medicines :

Curcumin                                                                                                                                         Ashwagandha                                                                                                                             Tinaspora cordifolia                                                                                                                     Satavari                                                                                                                                           I also take another tablet which is a mix of several herbs.

I also take allopathic supplements like Renerve (Mecobalamin), Antoxid HC (Selenium+Copper+ zinc ) , and a tablet whenever my uric acid levels are on the higher side. I also take Folvite daily.

I fast one day every week.

Exercise is always recommended but I was unable to do any form of exercise all these years as I felt weak. I now feel strong enough to go for a walk . I started going for walks since one month and I am enjoying. I currently walk a distance of 1km in 15 mins, straight after work before I go home.

I do pranayama and meditation along with few simple yogasanas in the morning before I go to work.

I also follow the diet prescribed by Dr Kochar.

keep-smiling

Dr Kochar has put a smile back on my face.

Thank you , Doctor !!


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Book Review – ‘Dying to be me’ by Anita Moorjani

A colleague recommended the book ‘Dying to be me’ by Anita Moorjani.

anita-moorjani

It is the true story of Anita, who had a Near Death Experience when she was almost on the verge of dying from Cancer,went into coma but recovered completely in a few weeks after that experience.A miracle by all standards.

I have come across people who have been managing quite well and living for several years. I recently learnt about a woman who was diagnosed with Multiple Myeloma 23 years ago.She meditates regularly and is doing fine.

While reading the book ,I was nodding at every point that was mentioned by Anita. About how we restrict our true feelings for the sake of society, about how we feel inadequate , how we give the least priority to ourselves etc.

Her experience during NDE about feeling one with all the beings in the universe , about realising that we are made up of love , about experiencing past present and future simultaneously , feeling love for all beings etc are all the same stuff that all spiritual masters have been saying all along and is written in various biographies and scriptures of hinduism and possibly other religions too.

I picked up the following from another link.

Things Anita Moorjani learned from her Stage Four Cancer & Ensuing NDE:

1. You attract what you fear.

2. If you’re sick, don’t fight it. Embrace it. Love where you are now. Only when you approach your health challenges from a point of love can you overcome the fear.

3. Sometimes less information is better. When it comes to illness, more information does not necessarily equal more power (too much research can actually add to the fear and symptoms).

4. Through your illness, your body is giving you a message. Work to understand and be with what is.

5. Everything comes from within.

6. Ask yourself, “What brings me joy?” And do more of that.

7. Don’t obsess and make your life about the illness.  

8. Love yourself unconditionally.

9. Positive thinking can only help to a certain extent. It’s more about being yourself and loving yourself – regardless of what you are going through.

10. Stop judging yourself.

11. Express yourself fully. Ask yourself: “Am I allowing myself to express who I am?  Am I being this person because I want to be accepted, or because it is who I am?”

12. Be centered in your true essence. From the place of pure centeredness, miracles are possible.  It’s about being, not doing.  When you are in the space of being, miracles are possible.

13. The only thing that limits you is your own beliefs.

14. The best way to get our of a fear state is to do something that brings you into a state of joy.  Find something that changes your state completely.  Whatever it is – music or art or going out in nature. Do something completely different. Or meditate.  If we can be still, we can go into a different reality.

15. Stay totally open. Get into a defused state in which all of the possibilities lie before you and you haven’t locked into any one.  

16. Follow your bliss and do what you love. We tend to do what we think we should do, rather than what our heart tells us to do.  We don’t do what makes our heart sing.

17. You are your own guru. All your answers are inside you.

18. Nobody is better than (or less than) you. We are all equal.

19. Focus on your feelings more than your thoughts. Make your everyday choices based on what makes you FEEL good, rather than what you THINK you should do or what others think you should do.

20. Don’t let a fear of failing or displeasing others run your life.

21. Realize your own MAGNIFICENCE!

Each of the above points has a deep significance and meaning. It is easier to read but practising is not that easy. Surely all of us have experienced and also accept a few of the above points. We should also incorporate the other points and also ponder on them as much as we can so that we can realise the benefits .

I shall read these beautiful words of Anita every day.

Very thankful to my colleague for recommending this wonderful book.

~Lokaan samasthaan sukhino bhavanthu~


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Increase in Globulin Serum…an Ayurvedic Decoction to put a check on it.

decoction

Its been 6 months since i stopped using Lenangio on the advise of my Oncologist. What a relief that was. Something that i prayed for and was longing for . My Gobulin Serum was normal and MSpike was zero at that time but TLC, Neutrophils were very low and i was beginning to get all infections.

For three months , after stopping Lenangio , my Globulin Serum was in the normal range but for the last three months it has been increasing by .1 every month.

Recently , met my Oncologist with my CBC, LFT and RFT reports and as expected he wanted to start Thalix 50mg. I had this apprehension even before i met my Oncologist. I mentioned the same to my Ayurvedic doctor before i met my Oncologist. My Ayurvedic doctor wanted me to request and take one month time from my Oncologist. He would be giving me another medication which will control those villains in my body.

I expressed the same to my Oncologist and got an extension for one more month. I also told him that my Ayurvedic doctor wanted one month time.

I told my Ayurvedic doctor that i am ready to do anything for stopping Thalix . I also told him that i am ready to go on a fast twice a week. He has now sent me two new medications. One of them to be taken in the form of a decoction.

Keeping my fingers crossed as i have begun the daily ritual of preparing a decoction, from a powder which is a combination several herbs, and consume it before sleeping. The liquid is very very bitter and i have something sweet immediately after gulping the liquid. My ayurvedic doctor tells me that the best way to consume an ayurvedic medication is in the form of a decocotion. Though i would love to pop a pill or capsule any day.

Meanwhile i also came across a lady who is 73 years now and was diagnosed with MM when she was 50yrs. I was curious to know of any tips that she was following and learnt that she meditates a lot.

I have resumed meditation. Have also started going a bit slow at work . I  observed that i was getting anxious at home and work. Am now conscious of the speed and intensity of my thoughts.

I am sure that my next results will reflect lower Levels of Globulin serum and i will surprise my Oncologist 🙂 .

 

 

 


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Moringa Oleifera (Drumstick) Vs Cancer

My Ayurvedic doctor has now included another herb , Moringa Oleifera , popularly known as Drumstick.I will be using Moringa along with other natural herbs to help me combat Multiple Myeloma.

moringa-oleifera-leaves-and-pods

Drumstick is one of the regular veggies used in South Indian cooking. Frequently used in Sambhar and avial 🙂 . Also made into pickle.Tastes yummy once cooked but has a repulsive odour when raw. The leaves too are used in several recipes.

But not many know the powerful medicinal values of this tree. All parts of the tree including leaves, flowers, fruits, bark, roots, gum have medicinal properties.

 

moringa

 

There have been several studies to show the effectiveness of Moringa in killing cancer cells.

Here are a few interesting articles that I found

Want to Stay Cancer Free?
Let This Food do the fighting!

https://www.themoringa.com/articles/cancer-prevention-supporting-treatment

https://www.themoringa.com/articles/cancer-treatment

So , along with Curcumin , Ashwagandha and Neem I am now armed with Moringa to fight and kill the villains in my body 🙂

Do include more Moringa in your diet.

 

~Sarve Janaha Sukhino Bhavantu~

 

 


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Counselling a caregiver and a patient with Multiple Myeloma

image

I received a phone call from the Personal Secretary of my Oncologist who asked me if I was willing to talk to a patient with Multiple Myeloma. The patient was supposedly hesitating to undergo SCT (Stem Cell Transplant).

I didn’t mind talking. In fact i was more than eager to help anyone by sharing my experiences.

I receive a phone call from a guy whose father is the patient.
He asked me a lot of questions.
How I was detected with MM.
How many years since I underwent SCT..
The side effects of chemo.
About losing hair.
Skin turning dark after SCT.
The number of days i spent in the hospital.
How long it would be before the patient can resume normal activities.
Whether i follow any alternative treatment.

Since last one year I have been quite comfortable about sharing my experiences on this blog and other forums.

The guy wanted to meet me personally along with his mom and uncle. For a moment I did feel a little uncomfortable about meeting a patient/caregiver face to face. However, I met them at the hospital and went there after work.

At the cafe in the hospital more questions followed and I learnt more about the condition of the patient. A 61 year old with problem in lungs, liver, backbone and kidneys.  My Oncologist recommended SCT to the patient.Surely the doc is confident and I have the confidence in him. The caregivers asked me about alternative treatment and I said I have been using since a year .
I advised them not to think about alternative treatment at this stage. That they should go for SCT and later they can plan for alternative treatments along with Allopathy. They felt the same way.

They did take a second opinion and SCT was advised by the other doctor too..

I cautioned them about following proper diet and to follow the Diet given at the hospital during discharge.That the patient restrict his movements outside home and use a mask for a few months till his immunity improves because one is prone to infections at this stage.

I also informed them that each patient is different and the experiences may not be the same and cannot be compared.I told them to make the patient feel comfortable and assure him that everything will be fine and to be cheerful around him which is a very important part in healing ,that actually works.

After a while they asked me if I was willing to meet the patient. They wanted me to tell their dad about the importance of diet.I saw a lot of visitors waiting to meet their dad .He was an ex politician .The patient did appear weak and was recovering from a recent lung infection. I told him to be strong and take care of his diet.

I told the guy to inform all the visitors that all will be well. That they are in the best Hospital and with the best doctor who is also a cancer crusader.

~ Sarve Janaha Sukhino Bhavanthu ~