Shutterbug's Blog

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


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Status update on my MM : 23 Jan 2018

Been a while since I updated my status wrt MM.

Got the CBP , LFT and RFT tests done a couple of days ago.

All renal parameters are fine. Potassium , Glucose , TLC are also within normal ranges.

ESR : 51 ( This is expected , 0-20 is the normal range)

Hb : 10.6 (was 11 in November 2017 )

Globulin Serum : 4.0 (increased from 3.8 in November, normal values are between 1.8 and 3.6 )

This is a cause of concern.

Spoke to my Ayurvedic Doctor who felt there is nothing to be worried about. However I am not comfortable and asked him if I can increase the dosage to 3 capsules three times a day. He actually wants to reduce my dosage if possible. But I am not yet comfortable reducing the dosage right now.

I have been observing a little dip in my energy levels and was also feeling cranky during the last one month.

I had been taking 3 caps of Curcumin for almost 2 and half years since May 2015. All was well during this period and hence a few months back I was put on Turmeric. But the tests in November 2017 revealed that Globulin Serum increased to 3.8 . I was back on Curcumin 500mg 2 Capsules three times a day in December 2017. With the latest reports I feel the dosage of Curcumin has to be further increased .

Glad he agreed and I am back to my original dosage of 3 capsules of Curcumin 500mg three times a day. I will continue to take Ashwagandha , Tinospora Cordifolia , Satavari along with Curcumin . I am hopefull that my counts will jump back to normal very soon.

I shared the reports of my results with a confidante at work. She knows a lot about me and my style of working and feels that I have been exerting myself at work and it is better that I slow down a bit 🙂 . Will do something about this .

In my next set of tests after a month I will be including tests for Vit D , B12 , Uric acid and Calcium levels.

That’s all for now.

Time to take loong deeep breaths and relax :))


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Raw Turmeric Vs Turmeric powder

I am in love with Turmeric, the Golden spice. A lot of research has been done on the health benefits of Turmeric and a lot of people the world over are experiencing positive results.

My being alive on this planet is primarily due to Turmeric.

Turmeric is widely being used to treat several illnesses from minor to major chronic illnesses of the body and the mind. There is a lot of information on the Internet.

Everyone is aware that prevention is better than cure but how many actually take the effort to be healthy.  We don’t even know what to do to prevent illnesses. With the kind of diet and pollution levels ,most people should be worried about ending up with some kind of illness, but are clueless as to how to prevent.

By consuming Turmeric we can greatly reduce and even delay the probability of occurrence of illnesses.

Almost all Indians consume Turmeric via their food . Turmeric powder is one of the key ingredients in most Indian recipes. However , the quantity and quality of the Turmeric powder that is used should be increased so as to get the maximum benefit.

Turmeric can be used in the form of a powder or as raw turmeric. It is preferable to use Raw Turmeric .

The store bought powders may be adulterated. It is best to prepare the powder at home using dried Turmeric root. First crush the root into smaller pieces and then grind it in your mixer grinder.

It is best if you can get hold of raw Turmeric root. You can also grow it in your garden.

Here is a link that tells you why –

https://www.turmericforhealth.com/turmeric-queries/7-reasons-why-raw-turmeric-maybe-better-than-powder#rawturmeric

This website has a lot of information on the health benefits of Turmeric.

Hope you too will benefit from this Golden spice.


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Recalling Memories of Dec 2011

memories

It has been 6 years since I underwent Stem Cell Transplant for Multiple Myeloma. It was in Dec 2011 when I was ushered into an isolated , sterilised , spic and span room where I would spend 15 days all alone.

A room where I would be reborn 🙂 , where my healthy Stem cells would be put back into my bloodstream which in turn would produce fresh and pure blood cells.

I spent Christmas (2011) and the New year(2012) in this room . I had the company of Doctors , Nurses and housekeeping staff who were like family and I would look forward to meet them and chat with them.

Felt too weak to sit by the huge glass window which overlooked the front porch of the building . I had to take the help of a nurse to take a short walk around the room.

Spent my waking hours watching my favorite shows on TV. I kept switching between Cooking , Travel and Religious channels .

Each morning my blood samples were taken and I eagerly looked forward to the reports which would arrive in a couple of hours . The counts of various blood cells would reveal how well my Stem cells were functioning.

A lot of yummy food would be served but it was difficult for me to swallow as my digestive system went on a strike 🙂

I patiently waited for each day to pass. My doctor promised me that he will send me home for Sankranti (a Hindu harvest festival which is celebrated around Mid of January every year ).

Since then , each year around December/Jan , I become nostalgic .

I made a lot of resolutions during those days 🙂 , all that I would do and not do. I have been quite successful with most of the do’s and don’ts 🙂

Feeling very blessed and grateful as another memorable year is passing.

 

 

 


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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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Change in Complexion of the skin due to Chemotherapy 

A young woman from Kerala, India , came across my blog a few months ago. Her Mom is taking Chemotherapy along with Ayurvedic Medication , for Multiple Myeloma. I had received a private message from her and we exchanged information over the phone.

A few days ago she messaged me on whatsapp and asked if my complexion had changed because of taking Ayurvedic medication. We had discussed about my Ayurvedic Medication too during our previous chats.

I then told her that the change is not because of Ayurvedic Medication but due to Chemo.

Here is my own experience :

After my Bone Marrow Transplant for Multiple Myeloma  in Jan 2012, I came home and looked at myself in a full length mirror. I just couldn’t believe what I saw . I was horrified. I almost felt ashamed of my appearance. I lost 10 kgs weight and my skin was much darker. I was definitely glad and excited to be back home , alive 🙂 . None of my family members including my little nieces and nephews , uttered a word about my appearance :). I still wonder why they didn’t . Poor things would not have even recognized me. I was bald , wearing a scarf , with a dark complexion and had lost a lot of weight. 

There was a small mirror in my room at the hospital but somehow I didn’t notice that the skin was turning darker day by day. I was in the hospital for 20 days and the other side effects overpowered this effect on my skin 🙂 . 

During the next visit to my Oncologist I asked about my complexion too, among many other queries. I was told that I should not be surprised if my nails start turning black very soon. He told me that my skin is reacting to UV light and I can try and avoid being in places with lot of light. Whereas I wanted to get some Vitamin D by exposing  my skin to the Sun . This was more important to me for strengthening my bones. The complexion thing was a very minor issue among the other issues that I was experiencing just after the BMT.  I just wanted to be alive.

Over a few months the complexion lightened just a bit . The whole nail did not grow to  a dark shade but I had one or two stripes of a dark shade on the nails . The nails slowly got back to normalcy but I can still see a pale grey stripe on a couple of nails even now.

It was only after I stopped all Chemo and started Ayurvedic Medication that my complexion slowly got lighter. I stopped Chemo in Feb 2016 . I guess I am 50% back to my original complexion now.

I really don’t know if everyone who takes Chemo for Multiple Myeloma has this side effect.

 

Finally , it is important to be grateful that one is alive and nothing else matters . Work towards improving your Health , mentally and physically. Have patience and read success stories of  other patients , yes there are several of them all over the world. 

the secret

 

 

 

 


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A Success Story : A Fighter who Conquered Multiple Myeloma !!

Here is the success story of Dr Gayatri , who has beat Multiple Myeloma with grit and determination.She has been my mentor for almost two years and has inspired me and guided me to take on the fight with courage and hope.She counsels many patients and advises them about the hospitals and Doctors in the country for getting treatment for MM.

Hopefully , this story will inspire many more just the way she has inspired me.

This write-up is by Dr Gayatri herself.

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BOUQUET OF HOPE

(My fight against cancer, written in October2002)

There is a very special reason why I would like to share my story with all of you who would be reading this .The word Cancer still evokes a lot of fear and despair and people are still petrified of being identified with cancer. Even in today’s modern times, you will be surprised as to how ignorant most of us are about cancer. Most lay people associate cancer with death, a painful end. And it is for these and many others who would read this book that I as a cancer survivor would like to share my experience with.

In this era of modern medicine, there are so many who have bravely and courageously fought their personal battle with cancer and many have been successful at getting rid of it. There are those who continue to fight, never wanting to give up. Don’t you think their efforts need to be appreciated? Life is a wonderful gift to each one of us and many of us take it for granted. But when one is struck with a life threatening condition like cancer, every moment of life suddenly becomes so precious that you want to savour every moment spent with near and dear ones. There is a hidden strength in each one of us that may have not surfaced otherwise but when a calamity strikes, you will be surprised at your own display of courage and fortitude.

When I was first diagnosed as having cancer in November2001, I was surprised as to how little I as a doctor knew about my cancer. Being a paediatrician my medical school knowledge about cancer was limited and my husband and me had to do a lot of reading and Internet surfing to help us understand my cancer. Also I was fortunate that we had many friends who would bring us articles and any information they could gather about cancer. About few years ago, it was thought best not to let a cancer patient know much about his or her condition. But I feel, it is very important for each and every cancer patient to understand his cancer, the available modalities of treatment and try and avail the best that is available to you. If one decides to nothing is impossible. The idea is to never give up. 

So here, I share my experience with cancer. 

It all began in the autumn of 2001. There was no warning, for my life was to change forever.

I am a doctor by profession, married to an Air Force pilot for the last 12yrs. It was oct2001 and I was reflecting on the joys of life, thanking God for a loving husband and two beautiful daughters aged eight and six years. I had a career that I enjoyed. Life was good, quite fulfilling.  I was so much at peace with myself. Little did I know that a while from now my life was going to change in a major way.

In the month of dec 2002 I was diagnosed as a case of Multifocal plasmacytomas, a variant of multiple myeloma. Multiple myeloma is a cancer of plasma cells. In myeloma, a single defective plasma cell (myeloma cell) gives rise to the much larger number of myeloma cells which build up in the bone marrow .

Diagnoses was’nt easy, I had  a surgery for a lytic bone lesion(initially diagnosed as osteoclastoma) on my left leg (tibia) on 8thNov 2001 and biopsy reported it as “Non Hodgkins Lymphoma” at Base hospital Delhi. A sample sent to Tata Memorial reported the tumour as Plasmacytoma. Further investigations confirmed diagnoses as Multiple Plasmacytomas. Over a period of 5 months I received 6 cycles of chemotherapy. I was immobile because after surgery my leg bone had not healed ( Non United Fracture). I was still not in remission after chemotherapy and so I went through an autologous bone marrow transplant on the 3rd of sept 2002 at Army Hospital( R&R),N- Delhi. I was admitted for a total of 20days and kept in isolation in a BMT centre. This transplant according to my doctors was a chance to buy time for me to fight this cancer, which has no cure.  The key thing here is the marrow you get is your own so there is no problem of graft-versus-host disease. The experience of a transplant was very painful for me. I could’nt swallow, my throat hurt, I had no saliva and I was bone tired. I was nauseous and vomited every sip of water I tried to swallow. For about a week I  totally gave up trying to even swallow liquids. I felt lousy and had no strength to talk. I used to watch a little bit of TV  but used to tire easily. I felt I would never get out of that room. My husband kept telling me I was going to make it and kept encouraging me. My family, my parents and in-laws have been a source of immense strength to me, I could never have got through this ordeal without them.

Today 3 months after my transplant I am in remission and will have to go through another transplant,( mini allogenic transplant) very soon at CMCH Vellore, maybe in the next one month. This transplant will be my chance for a cure and I am going for it! It is so strange that there was a time when I was worried about how I would fair during one transplant and here I am going for another!

The last one year has been a real testing time for me and my family. I have been through  series of misdiagnosis and long period of immobility.  We have gone through so much. I say “we” because I believe, as much as I have suffered, my family has endured much more. It is true, love can endure all things, that marriage and commitment go beyond the good days of youth and good health. It is love alone which has helped me to understand that the vows of marriage, promising to stand by each other “in sickness, in health, in good times and in bad”, is for keeps. My sickness also showed me the spiritual path and I gathered a lot of strength and courage in meditation and in the readings of Sri Sri Paramahans  Yogananda. His teachings gave me an inner calmness and the belief that I was going to survive. Come what may, I was going to fight this cancer till the very end.  From the day that I knew I had cancer, a strange calm came over me. Of course I was very distressed in the beginning but not once have I ever questioned God as to why me?

I believe, God knew I could take this pain and I was brave enough to go through this ordeal, and also I had a very caring family, which is why he gave this to me. I have no complaints, if I was destined to suffer this pain then so be it! God knew I was strong and wanted to show great things through me. And I know He has many more great things in store for me, so I like to look positively at that.

( The following extract is a summary of the period post my allogenic BMT at CMC vellore in Jan 2003 , till 2010)

There have been setbacks after setback, relapses which never seemed to leave me. I had an allogenic transplant soon after my autologous, at CMC Vellore under one of the best doctors in the country. But I relapsed six mnths later and a DLI was done( donor lymphocyte infusion). Thereafter I developed acute GVHD and was followed few mnths later by chronic GVHD, in the form of scleroderma and hypothyroidism. Scleroderma was another testing time, that landed me with ILD(interstitial lung disease). Pranayam helped me along with Rajyoga, a healing meditation technique by the Brahmakumaris, to come out of the effects of scleroderma.It took three years to counter these effects, and in the midst of all this I also had osteomyelitis of left tibial lesion. I was advised above knee amputation but somehow I felt, my leg could be saved. So started another round of trips to TMH Mumbai and a series of surgeries after which the oncosurgeon told me he would do an amputation if i agreed. He gave me one last option of trying to get the bone united and clear it of osteomyelitis by using the illizarov technique.So Iwent for it and after two years of repeated surgeries for debridement I could save my leg, though with shortening. The period post my allogenic transplant till 2009, Oct , I used to walk with help of a walker.

After the DLI, I still did not go into remission and had a bad relapse in 2007. It was a near death experience for me then, but my trust in the Almighty saw  me through this phase too , leaving behind peripheral neuropathy as a reminder.  

My message to the many who will hopefully read this piece is, Cancer is something, which any of us can be afflicted with, but that is not the end of life. Today medical science is so advanced and a lot of research is on to find better modalities of treatment.

By strong will power we can overcome disease, but the will vibration must be stronger than the vibration of physical or mental disease. More severe the disease, more stronger should our will be to fight it. Remember, beyond every cloud there is a silver lining….I have finally reached mine….and so will you!

By              

Dr Gayatri Bhat  (MBBS, DCH)

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Dr Gayatri’s experience is one of the most complicated cases one could ever come across.

If she can then we all can.

Lets prove to the world that nothing can beat Will Power.

Thanks to her , I got the courage to chronicle my experiences too via this blog.

Thank you Ma’am .


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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.

I feel happy sharing details of my experiences in this blog through my other posts.

 

~Sarve Janaha Sukhino Bhavanthu~