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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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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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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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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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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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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 !!


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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 .