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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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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 dietician 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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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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Update on my condition – Multiple Myeloma

Its been a while since I updated my status wrt Multiple Myeloma. Got the BMA, Electrophoresis and Microglobulin tests done about 10 days ago. The samples are  sent to a lab in Mumbai and it takes 7-10 days for the results to be declared.

Went to the counter in the hospital yesterday, where the Reports are to be collected. The person at the counter took almost half an hour to trace my reports. I was already tense for the last 10 days and the tension was mounting. The moment my Reports were found and handed to us , I quickly grabbed the papers and began scanning for the words ‘M Spike’ or ‘M Band’ . Found the words ‘No M Band is seen’ and heaved a sigh of relief. Quickly thanked the Almighty and then proceeded to meet my Oncologist. He took some time to read all the statistics on my reports and exclaimed ‘Wonderful !!” . Told me to meet after 3 months with my CBP,LFT and RFT reports .

What a relief !!

It’s been 5 years since I underwent an Autologous Stem Cell Transplant.

I sent a msg to my Ayurvedic doctor while we (Hubby and Dad) sat in the hospital canteen.

He was happy and congratulated me .He too had been eagerly waiting for my results.

I am off chemo since last 10 months and taking Ayurvedic medication for the last one and half years. All the credit goes to Dr Nitin for treating me and following up closely on my progress. While he feels that my faith in Ayurveda and following the protocol religiously is helping me. Yes ,ultimately it has to work both ways along with God’s grace  :))

top-of-the-world

Yayy ..time to celebrate !! :)) with a cake :))

 

 

 


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Health , Nutrition and South Indian Recipes with Korralu (Foxtail Millets)

Rice is a staple food of a majority of South Indians. Most of us cannot imagine life without rice . Craving for rice begins after 24 hours of not eating rice:)) . I too belong to South India 🙂 and a major part of my diet used to comprise of rice. Rice is an ingredient in our Breakfast, lunch and dinner.

The kind of rice that is usually available in most stores is highly polished and hence deprived of nutrients and is left with carbs. After learning about how cancer cells feed on sugars and carbs , I started my research on ways to minimize consumption of rice . Rice is an ingredient in several traditional South Indian dishes like Dosa , Idli , pongal , pulihora etc. Plain rice is eaten with other ‘curries’.

I came across ‘millets’ a couple of years ago and gradually started incorporating these in my diet.

Millets are a group of food grains grown in semi arid areas. These are ancient grains which have not undergone selective breeding.There are several varieties of Milliets . Pearl, Foxtail,Finger, Sorghum etc. Millets are gluten free, are alkaline,have low GI and anti-inflammatory. Inflammation is the major cause of a lot of chronic diseases in the body. Millets are usually not attacked by pests and hence are relatively free of pesticides. Millets have higher amounts of minerals and fiber than wheat and rice. Good for putting a check on Diabetes, cholesterol etc

I will be focussing on Foxtail Millets in this post. They are called ‘Korralu’ in Telugu.
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These are a very close substitute to rice and can be used in the preparation of a variety of traditional South Indian dishes.

Korralu (whole grain) can be cooked just the way we cook rice.Replace rice with korralu , for rice preparations like Pulihora, Kichdi,sweet pongal etc.
Batter for idli and dosa is prepared by substituting rice with foxtail millets. Brown rice, foxtail millets and Urad Dal  can be added in equal proportions to make a batter for Idli and dosa.

Korralu ravva is also available in a few supermarkets and organic stores. Idli can be made using this ravva. Upma too can be made with this ravva.

You might have to experiment a bit with the quantities. The taste , colour , texture might differ slightly from what you are normally used to . The idlis may be harder than the usual stuff  when you make them for the first time with millets. The texture of dosas  too might vary.Think of the nutrition rather than the look ,feel and taste. With experience you will be able to do a better job 🙂

Add cooked Foxtail millets to your favourite salad too,instead of quinoa.Also add foxtail millets in moong dal dosa.Get creative and adventurous !!

Lots of recipes are available on youtube.Check them out !

 

 

 

 


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My ‘Life Support System’

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I wouldn’t be treading this beautiful planet if it weren’t for some special people in my life to whom I will be forever indebted.

My Oncologist , a thorough  gentleman always positive and encouraging . When I had questions he would patiently explain in detail. Made the ASCT ( Autologous Stem Cell Transplant) process appear very simple which helped me go ahead with confidence. I completely surrendered to him He continues to support me while I try alternative therapies.
My parents who had sleepless nights and helped me recover from the terrible after effects of chemo. At times I would be so irritated with the discomfort that I would push away the glass of drink that my dad offered to me.
I am so sorry Nanna.
Love you Amma , Nanna .

Hubby makes sure I have all the medicines at all times …reminds me when I am due for the blood tests,fixes an appointment with the doctor. I don’t have to think when my next blood tests are due. Took care of me like a baby , feeding and giving medications on time when I was admitted in the hospital before and after the Transplant. His highly disciplined military style ensures that everything happens on dot 🙂  Nurses can relax  when he is around 🙂 He has been very patient all the while and continues to bear with my grumpiness till date.My son too bears with my erratic behavior .

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I am so grateful to my organisation that bore all the expenses for the Transplant.
My colleagues at work have been super accommodating. I would go to work but did not have the energy to take up any tasks…they just patiently waited for me to bounce back.Initially it was very difficult for me to sit for 10 hrs every day including travelling. No one ever made me feel that I was sick. They didn’t shun me nor avoided me, which is what I had expected. I was part of all the events and occasions. Such wonderful people they are.Once I had  bounced back I started volunteering for more assignments and now I am also made responsible for some important tasks in the organisation.

I also have good domestic help to take care of the household chores. To take care of cooking and cleaning and to drive me to work everyday. May God bless them.

I am also being taken care of by Mother nature which is nourishing me through the various leaves, seeds and roots of medicinal plants. I have also surrendered myself to my Ayurvedic doctor who is treating me with various herbs.

There are also a few good online friends who keep me going with their encouraging words.

How can I not mention the invisible spiritual guidance which is supporting me all the while. Without which I would have given up the fight long ago.

A disease like Cancer requires hell of a lot of support from all directions and from within.

How many are blessed with this kind of support system. It pains me a lot to see the suffering that people are going through and are giving up due to various reasons. A lot more has to be done quickly by  medical research. Oncologists and hospitals should treat patients with a holistic approach by including counselling sessions to the patients and  their caregivers.Alternative therapies should be a part of the treatment.

Feeling blessed.

  ~~Lokaan Samasthaan Sukhino Bhavanthu~~