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


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Feeling Alive

Finally , I feel ALIVE .
After almost 3 and half years , I actually feel I am alive and kicking.
Its been 3.5 yrs since my diagnosis and I had been walking around like a dead person carrying out daily chores, going to work , going for checkups , doing my best for my son.
I shunned going to parties, family functions, shopping , movies .
The recent results of my Bone marrow test changed it all. Currently my M Spike is zero and Plasma cells are less than 1%. My Oncologist very happily shared the good news with us.
I suddenly began to feel light ,  everything around seems much brighter. i now feel like going to parties and weddings and other public events.
Attended a couple of events this week and i noticed the calm and peace within. I thoroughly enjoyed meeting and watching other beautifully dressed people.
I now feel like shopping for nice clothes and jewellery 🙂

There is a confident person inside of me now.


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My ‘Curcumin Regimen’ and other Natural supplements for Multiple Myeloma

I have been using the following Natural supplements since 2 months ,inspired by Margaret . Some i have included based on other research  . I am confident that these natural supplements are doing a great job .
1. Haridra (Circuma Longa/Turmeric) 400mg from Himalaya  – 2-3 times a day
2. ‘Flaxseed oil’ capsules 500mg from Sri Sri Ayurveda – along with Haridra
3. ‘Garlic oil’ capsules 500mg from Sri Sri ayurveda – 2 times a day ( self discovery . noticed that severe itching in my throat because of Lenalidomide subsides with Garlic)
4. ‘Ashwagandha’ capsules (Withania somnifera)  250mg from Himalaya – 2 times a day
5. ‘Guduchi’ capsules 250mg (Tinaspora cordifolia) from Himalaya – 2 times (advised by my Oncologist)
6. ‘Shigru’ capsules 250mg (Moringa pterygosperma) from Himalaya 250mg – 2 times a day
7. Amla candy (Goose Berry , rich in Vit C ) 4-5 pieces – 2 times a day .
8. Every morning i drink ginger (one inch piece)  decoction to which Lemon juice (quarter lemon) and turmeric powder (from my kitchen) is added.
9. At times i replace ginger decoction with decoction made with leaves of Simarouba Glauca (There is a post on this in my blog ) I add Turmeric powder (from the spice rack in my kitchen 🙂 ) and lemon juice.
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Apart from the above i continue to take the following Allopathic medications as per the advise of my Oncologist and Physician :
1. Renerve (Methylcobalamin ie B12)– One per day
2. Antoxid HC (Beta carotene,Selenium,Zinc Sulphate,Manganese , Copper– One per day
3. Calferon plus ( Calcium,D3 (Vit D) )- 2 times
4. Acivir (Anti viral)- 800mg (one every alternate day)
5. Lenangio (Lenalidomide) – 5mg ( one per day)
6. Dexorange (Hematinic syrup) – once or twice a day whenever my Hb count is below 11
7. Ecosprin 75mg (Aspirin) – One per day after lunch
Have been using the above for 2 months . I feel energetic, my constant muscle pains have disappeared , I feel less anxious.
My current results are M spike : Not seen and Plasma cells < 1% .


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M spike – Not seen !!

My Bone Marrow test results , 4 months after changing to Lenalidomide from Thalidomide , are out.

For 3 yrs prior to Dec 2014 , post Autologous Stem Cell transplant in Jan 2012 ,  i had been taking 50 mg and 100mg of Thalidomide.

My hubby , dad and I went to the hospital yesterday , to pick up the reports.

We were very apprehensive as to what the results would be. We opened the reports while walking towards the lift and saw the words ‘M spike – Not seen’ . Whatever that implied !!??

My Bone marrow aspiration was done exactly 5 days ago and that day i had asked my doctor about M spike ,what it meant and what should be the ideal value. He said that the value is ‘zero’ in a healthy individual.

When we showed the reports to my doctor , he said that the results are absolutely fantastic. ‘Not seen’ implies the M spike is ‘zero’ . He was extremely happy for us and we were very excited. The plasma cells too were less than 1% which was 10-12% 4 months ago ( a relapse)

I asked him if Lenalidomide is the reason, he replied ‘ you are responding very well to Lenalidomide’

In Dec 2014 my doc had said ‘ Sorry, you may have to be prepared for another round of SCT after 3 months’ and yesterday he said ‘No worry , we need not do the SCT now ,we can postpone till we reach 25 mg of Lenalidomide which is available in 5 mg , 10 mg, 15 mg, 20 mg and 25 mg and it may be 2 yrs or 5 yrs before we reach that dosage’

For now he told me to get back after 2 months with CBP , LFT and RFT reports.

Dad was so excited , he called up Mom and Sis and updated immediately.

Hubby immediately opened the first BMA report after 6 months of my transplant and showed us that the latest report is the best ever. The results even after the transplant were not as good as they are now 🙂

We thanked the doctor and the Almighty and came home.

We hadn’t mentioned the Alternative natural products that i had been using for the last 45 days.

I had discussed these during my visit last month when i went to show the CBP,LFT,RFT reports.

He had said i can go ahead with these products and that he is not against alternative treatments. His reply gave me a lot of relief.

I strongly believe that using natural supplements and immune boosting foods did have a major role in bringing down the M spike and plasma cells.

Will write all about my Ayurvedic protocol , inspired by Margaret , in detail in my next mail.

I am so excited that i wish to scream to the world about my Ayurvedic discovery and share with other patients suffering with Multiple Myeloma.

Here is an interesting article on Circumin( Turmeric) and Multiple Myeloma

http://www.myelomabeacon.com/news/2010/02/17/curcumin-and-multiple-myeloma-preclinical-and-early-clinical-studies-are-promising-still-awaiting-more-clinical-evidence/


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Visit to a farm near Sivanagar in Telangana – Simple pleasures of life.

Who wouldn’t love to go on a long drive to a place surrounded by lush greenery , away from the hustle bustle of the city life. This time it was a drive to Peddakanjerla, Amdoor , Sivanagar via Inole along with my sister, mom , a colleague and her hubby. The place is about 10 km from the Outer ring road in Hyderabad to the North of Patancheru . We had unusual rains for a few days last week though it is summer during this part of the year. These rains helped the grass grow and it was like a green carpet all over. We came across golden paddy fields which were ready to be harvested.

A garden caught our attention,  we saw lots of Bottle-gourds hanging from trellis . 2015-04-20 17.15.19 This was near Sivanagar . Our driver was speeding and i screamed STOP ! STOP ! STOP !! 🙂

We stopped outside the gate . We saw a small house behind the gate . We honked , hoping to see someone and a couple came out of the small house and stood behind the gate. We asked , from inside the car, if we can buy a few bottle-gourds. They nodded , went in and brought the key to the gate and let us in. We were thrilled. Why not !!? 🙂 we were lucky that the couple let us in .Who wouldn’t love to stroll around a field. As we stepped in we could smell the sweet flavours of Jackfruit and sapota/Chickoo. There were a few of these trees adjacent to the fence .

The woman quickly plucked a few roses from a nearby bush and handed one to each of us. That was a rosey welcome 🙂 We moved closer to the Bottle gourd plants and saw hundreds of them hanging from a trellis built at height of 7 feet from the ground. The plants were watered using Drip irrigation. See the black pipes at ground level in the pic below ?

2015-04-20 17.27.34

Felt good watching little chicken running around their mother in the field . The caretaker was highly enthusiastic and explained how the plants are grown.

2015-04-20 17.28.11

The couple plucked a few bottle-gourds , sapotas and curry leaves from the farm and packed them for us. When we asked how much we should pay , they hesitated and wanted us to pay whatever we wished . They were so eager to give us all the stuff 🙂

2015-04-20 17.40.21

They wanted us to go around the whole place . There were mango trees too and said we should visit again 🙂 We were a little curious as to how they make their living and they said that the owner gives a fixed amount at the beginning of the year along with some rice.

Felt so good to spend some time there and my feet refused to turn back.

This is the team that visited the farm.

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The caretakers were too shy to pose for the camera 🙂 but i insisted. That’s Mom, the caretaker and me.

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The sun was beginning to set , it was time to go back home and bid farewell to the smiling couple . 2015-04-20 17.47.44

As our vehicle got closer to the city , we got immersed in the noisy world of vehicles , concrete and pollution the greenery and simple people/life were left behind . I feel energized and the memories will continue to energize till we go on another drive.


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An informative website on Alternative/Natural treatments for Cancer

Came across this wonderful informative website and wanted to share.

http://thetruthaboutcancer.com/

Has lots of information on various alternative treatments and several success stories as well.

Mr Bollinger , the creator of this website has done an excellent job of compiling useful information from various sources.

It is a well known fact that the current chemo drugs have a lot of side effects. The treatment is not holistic . Most doctors do not prescribe any alternative/natural treatments along with chemo.

Thankfully with Internet and lots of wonderful people sharing their success stories , a lot of information is now accessible .

But let us also forward this information to the underprivileged people who do not have access to this information.


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My new Protocol for MM

Came across the blogs of two lovely people Margaret and Don who were diagnosed with MM around 8 to 10 years ago. They have recorded all their experiences in detail and have been successfully managing the disease all these years,

http://margaret.healthblogs.org

http://myelomahope.blogspot.in

They have been using a protocol comprised of natural products and have been stable since they started using these.

The regimen is as follows : – curcumin with bioperine – flaxseed oil or another beneficial oil. –

 Margaret also takes quercetin with her curcumin. Read the above blogs for more details.

I plan to start this regimen immediately. I will continue to use garlic along with the above. Turmeric contains Circumin . Black pepper contains Bioprerine . I plan to buy Flaxseed oil capsules . I will also be adding a capsule of Moringa powder. According to the following link ‘Moringa’ has 19 cancer preventative effects and 10 antitumor effects. It contains Quercetin ((a flavonoid known for its ability to neutralize free radicals and relieve inflammation) along with other anti-inflammatory agents.

http://www.cancertruth.net/moringa-miracle-tree/

I will be continuing Lenalidamide 5mg along with the above.


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Multiple Myeloma , Lenalidamide and relief from the associated nagging dry cough

For 3 years after my Autologous Stem Cell Transplant , i was on Thalidomide. My doctor changed the prescription 3 months ago due to a relapse.

While changing the medication , the doctor said ‘Sorry, let’s be prepared for another round of SCT after 3 months from now ‘
We were sad on hearing the news but also glad that we had an option for another round of SCT.

I am on Lenalidamide since 3 months. For 2 months i was using 10 mg . The counts were dropping , especially TLC count, and hence my doc decided to reduce the dosage to 5 mg.

During the third month i developed a persistent dry cough . The symptoms didn’t go away in spite of using anti allergic tabs and Antibiotics. Moreover the cough worsened. The insides of the throat were swollen , it was painful too.
I used to gargle using warm salt water, did steam inhalation , applied ‘Zinda tilismath'(a unani tincture) inside the throat but none helped.

Over the last two years I had been exploring alternative treatments like Ayurveda on the Internet. I also had been researching on various immunity boosting foods.

I zeroed in on Garlic and started consuming a couple of pods in the morning and evening. To my surprise i noticed that the symptoms reduced and my throat was quite comfortable as long i took the pods.

At the end of the 3rd cycle of Lenalidamide , i went for the routine blood and urine investigations ie CBP, LFT , RFT.
Me and my hubby were surprised to see that the TLC count had improved . The globulin level too remained at the same level as last month.

Met my doctor along with the reports and he too was surprised when he compared the current report with the previous month’s report.
He asked me if i changed ‘something’ . I smiled and said ‘yes’ 🙂 I am consuming garlic.

He said the situation is not alarming and we can continue the same medication for another month.
I was excited on getting an extension of one month. I decided i will continue to use garlic during this cycle too.
I am confident that the counts will stabilize and reach the normal range.

The smell of raw Garlic is unbearable, it is very spicy and makes the breath smell very bad.

Procedure i use to consume Garlic :
crush 2 pods . I use a small mortal and thistle.
Leave it for a minute.
Now add the crushed garlic to curd/yogurt ( 4-5 tsp) .
Mix it well and consume .

Here are some tips to get rid of bad breath because of garlic 🙂

11 Tips on How to Get Rid of Garlic Breath


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Reprogramming the DNA

Like most kids, it was in High school that I first learnt about DNA , during the Biology class . We learnt about the structure of a ‘cell’ , the various components of a ‘cell’ and also about the functions of these components. Most of us know that the most important part of a cell is its ‘DNA’ . That it contains the ‘code/program (set of instructions)’ which controls how a cell should behave. Due to various known/unknown reasons the code/program in the DNA gets corrupted. There have been several scientific studies which claim that the DNA of a cell can be reprogrammed. Ayurvedic experts too vouch for the fact that it is possible through Meditation. I now wish to refresh my knowledge about the cell and its contents . I wish to meditate on the cells in my Bone marrow and try to reprogram them, because the ‘program’ in my DNA is misbehaving. My plasma cells (one of the various types of cells in the blood) are going bonkers. They don’t do their job nor do they die. Whereas a normal healthy cell carries out its function ,multiplies and dies . These junk cells remain in the blood stream and block the filters in the kidneys.The job of kidneys is to filter blood by removing dead and toxic impurities/cells in the blood. In order to refresh my knowledge about cells , I spent some time reading a bit about them on the Internet. Here is a picture of the contents of a cell.

03-02_CellStructure

The various ‘cells’ which comprise our body are usually taken for granted . A cell is a microcosm in itself. The ‘cell’ in turn contains several organelles like mitochondria , Golgi apparatus , Ribosomes , Lysosomes  etc. Each of these components carries out a specific function within the cell.  The functionality of the cell is mind boggling. A ‘cell’ also has a ‘Nucleus’ which contains ‘chromosomes’. There are 23 pairs of chromosomes in each cell. Each of the chromosomes in a pair is received from each of the parents. It is these chromosomes which contain the DNA of the cell. cell-nucleus-diagram

“The nucleus is a highly specialized organelle that serves as the information and administrative center of the cell. This organelle has two major functions. It stores the cell’s hereditary material, or DNA, and it coordinates the cell’s activities, which include intermediary metabolism, growth, protein synthesis, and reproduction (cell division). “

The DNA is a double helix structure which comprises several ‘genes’.It is these genes which in turn contain the code which determines how various cells in various organs and various parts of the body should function. what-is-a-chromosome11 DNA

Now that the image of a cell and its details are imprinted on my mind , it would be easier to visualize and talk to it while I meditate and try to reprogram them. I had read that one has to visualize the DNA to be glowing with bluish light during Meditation. So, the prerequisite to doing this is to know how to Meditate. Will write about this in another post.


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Living with Multiple Myeloma since Jan 2012

Let’s rewind back to Jan 2012 .

11 Jan 2012 : The day I was discharged from the hospital after undergoing Autologous Stem Cell  Transplant for Multiple Myeloma.

The last 3 years have been full of ups and downs wrt the condition of my health. Had to deal with several infections (skin, eye , throat , stomach ) one after the other .

I had been using Thalix (Thalidomide ) for the last 3 years. Started with 50mg and increased to 100mg.

Side effects of this medication are muscle cramps in the calf’s and near the ribs , infection around the toe nails and numbness in the hands and feet (neuropathy)

All the other supplements namely Iron, B12, calcium ,antioxidant,  an immuno modulator (ayurvedic capsule advised by my doctor) ,  kept me propped up .

I had to do my bit to keep my Creatinine levels low by avoiding high Potassium foods (advised by my doctor) . A renal diet was ideal and i did my best to stick to it.

I had to go for a check up every 6 months where a ‘Bone marrow aspiration’ was carried out at the sternum and tested .

Last year i had to take 2 cycles of Bortozomib.

Life goes on….


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New Planters for the plants on my Balcony

It is Spring season here in India at this time of the year. It is so tempting to buy flowering plants ,especially when you pass by ‘plant nurseries’ which are brimming with a variety of them.

I had bought some flowering plants which were sold in plastic pouches. These are seasonal flowers and flower for 2-3 months during the year.

The plastic pouches are black in colour and have a dull look ,hence i wanted to place them in beautiful Planters.

I was browsing the net for ‘Pots and Planters’ that could be ordered online. Came across several websites selling varieties of Planters in plastic, ceramic and metal .

I had ordered a few from Fabfurnish.com . They have a fabulous collection .

The Planters have arrived and here they are 🙂

image

Aren’t they are lovely ?!

Once these plants stop flowering , i hope to replace them with other seasonal flowers.