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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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Back to Curcumin from Turmeric

Went for a few routine tests namely CBP , LFT and RFT on 23rd Jan 2018 and noticed that my Globulin Serum had further increased from 3.8 (Nov 2017) to 4.0 . I was a little worried and expressed the same to Dr Nithin , my Ayurvedic Doctor who then changed my medication from Turmeric to Curcumin. I was advised to use Turmeric instead of Curcumin , for a few months during the later part of 2017.

I guess it was too early for me to make the change from Curcumin to Turmeric . Curcumin is an extract from Turmeric and hence more powerful. It is the Curcuminiods in Turmeric which are effective in the activation of Apoptosis (cell death) in the cells.

It is now one month since I changed back to Curcumin. Meanwhile I was down with Sore throat and took Antibiotics during first week of Feb 2018. I discussed with Dr Nithin and he decided to increase the dosage of Curcumin (500mg) from 3 caps / 3 times a day to 4 caps / 3 times a day . Ashwagandha (500mg) was also increased from 2 caps / 2 times a day to 2 caps / 3 times a day.

Its been a month since my last tests and hence went for the routine tests yesterday. The reports were very good. All parameters were normal .

Hb is 11.2

Creatinine is .9

ESR is 34 , not yet in the normal range (0 – 20) . Not too bad , it was 65 last month.

Globulin serum is back to the normal range (1.8 – 3.6) . Reduced from 4 to 3.6 .

This is great news 🙂 . This was something that was worrying me. Feeling very happy now 🙂

yayyy_by_x_yuuya_x-d3aocig
Dr Nithin also told me to do a test named Metabolic profile c .
Awaiting the results of this test.


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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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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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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~