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


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Came across this article where a 67 year old woman from UK has successfully tamed Multiple Myeloma.

Dieneke Ferguson, the founder and CEO of https://www.hiddenartshop.co.uk learnt about Curcumin through Margaret’s Blog .

I was very excited when I read that Dieneke Ferguson too , just like me , was also inspired by Margaret’s Blog and started using Curcumin.

Here is the whole story :

How our CEO Dieneke Ferguson beat her incurable cancer through curcumin

Hopefully this news will inspire many others to believe that there is hope and not to give up.

 

 

 

 


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‘Technically cured’ of Multiple Myeloma

I was due for a Bone Marrow Test and it was more than 6 months since I got the last one done. Was busy with several activities  and the test got delayed by one month.When I called my Oncologist for an appointment , he suggested that I also get a General Health Check up done along with the Bone Marrow Test. Been a while since I went for a Health check up.
The package consisted of Cardiac tests, ultra sound of the abdomen, Chem 20 , Urine , Thyroid , Lipid profile ,Bone Mass Density ,  Hepatitis B and C etc

The tests along with the Bone Marrow Test were done last week and the results were out today.

Went directly to the Hospital after work. My Oncologist gave an appointment at 4.30pm. Hubby was already at the Hospital and had picked up all the reports. I quickly opened the Bone Marrow Test report and scanned through the report looking for something like ‘M- spike not seen’ or ‘M-Spike negative’ , but I see ‘Impression:Consistent with Normal marrow’. I deduce that all is Normal and we rush to meet my Oncologist , as it was 4.35pm. I quickly thanked the Almighty.

My Oncologist goes through all the reports and finally says ‘ Meet me after One year’ .

I stare at him as if I wanted him to repeat those precious words again. He then says ‘Its been 5 years since you had the SCT, so Technically you are cured’ .

Woww , these were the words that I was longing to hear.

All the other Reports too were normal except for Osteopoenia.

On our way back hubby was showing me some remedies for Osteopoenia and Strength training is one of them.

Time to do something about this.

Today is one of the most happiest days in my life 🙂

I also sent pics of the Reports to my Ayurvedic Doctor, who was also very eager to know the results. He is very happy too. I would not be in this condition without his medication and treatment.

Thanks to Mother Nature for healing me through Ayurveda.

Feel like sharing my happiness with all my well wishers 🙂

Incidentally, today I also received a Promotion/Elevation at work. It was tough as only 30% of the eligible candidates got selected. The selection is based on the score in the appraisals and the performance in the Interview.

So glad I made it 🙂 .

I need to watch out and not get too stressed at work.Got to continue to follow a healthy diet too , along with exercise.

Love you Zindagi…..


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Treat Cancer – Yes, you can !

I had been diagnosed with Multiple Myeloma ( a form of Blood Cancer) Five and half years ago.

I have come across many articles on how to ‘Manage’ the condition.

Here is nice compilation that I received from a WhatsApp group .

I do believe and have been practicing most of what is recommended in this compilation and hence wanted to share.

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AFTER YEARS OF TELLING PEOPLE CHEMOTHERAPY IS THE ONLY WAY TO TRY (‘TRY’, BEING THE KEY WORD) TO ELIMINATE CANCER, JOHNS HOPKINS IS FINALLY STARTING TO TELL YOU THERE IS AN ALTERNATIVE WAY .. 
Cancer Update from Johns Hopkins: 

1. Every person has cancer cells in the body.. These cancer cells do not show up in the standard tests until they have multiplied to a few billion. When doctors tell cancer patients that there are no more cancer cells in their bodies after treatment, it just means the tests are unable to detect the cancer cells because they have not reached the detectable size. 

2. Cancer cells occur between 6 to more than 10 times in a person’s lifetime. 

3. When the person’s immune system is strong the cancer cells will be destroyed and prevented from multiplying and forming tumors. 

4. When a person has cancer it indicates the person has nutritional deficiencies. These could be due to genetic, but also to environmental, food and lifestyle factors. 

5. To overcome the multiple nutritional deficiencies, changing diet to eat more adequately and healthy, 4-5 times/day and by including supplements will strengthen the immune system. 

6. Chemotherapy involves poisoning the rapidly-growing cancer cells and also destroys rapidly-growing healthy cells in the bone marrow, gastrointestinal tract etc., and can cause organ damage, like liver, kidneys, heart, lungs etc. 

7. Radiation while destroying cancer cells also burns, scars and damages healthy cells, tissues and organs. 

8. Initial treatment with chemotherapy and radiation will often reduce tumor size.However prolonged use of chemotherapy and radiation do not result in more tumor destruction. 

9. When the body has too much toxic burden from chemotherapy and radiation the immune system is either compromised or destroyed, hence the person can succumb to various kinds of infections and complications. 

10. Chemotherapy and radiation can cause cancer cells to mutate and become resistant and difficult to destroy. Surgery can also cause cancer cells to spread to other sites.

11. An effective way to battle cancer is to starve the cancer cells by not feeding it with the foods it needs to multiply. 
*CANCER CELLS FEED ON: 
a. Sugar substitutes like NutraSweet, Equal, Spoonful, etc. are made with Aspartame and it is harmful. A better natural substitute would be Manuka honey or molasses, but only in very small amounts. Table salt has a chemical added to make it white in color . Better alternative is Bragg’s aminos or sea salt. 
b. Milk causes the body to produce mucus, especially in the gastro-intestinal tract. Cancer feeds on mucus.. By cutting off milk and substituting with unsweetened soy milk, cancer cells are being starved. 
c. Cancer cells thrive in an acid environment. A meat-based diet is acidic. Meat also contains livestock antibiotics, growth hormones and parasites, which are all harmful, especially to people with cancer. 
d.. A diet made of 80% fresh vegetables and juice, whole grains, seeds, nuts and a little fruits help put the body into an alkaline environment. About 20% can be from cooked food including beans. Fresh vegetable juices provide live enzymes that are easily absorbed and reach down to cellular levels within 15 minutes to nourish and enhance growth of healthy cells. To obtain live enzymes for building healthy cells try and drink fresh vegetable juice (most vegetables including bean sprouts) and eat some raw vegetables 2 or 3 times a day. Enzymes are destroyed at temperatures of 104 degrees F (40 degrees C).. 
e. Avoid coffee, tea, and chocolate, which have high caffeine. Green tea is a better alternative and has cancer fighting properties. Water-best to drink purified water, or filtered, to avoid known toxins and heavy metals in tap water. Distilled water is acidic, avoid it. 

12. Meat protein is difficult to digest and requires a lot of digestive enzymes. Undigested meat remaining in the intestines becomes putrefied and leads to more toxic buildup. 

13. Cancer cell walls have a tough protein covering. By refraining from meat it frees more enzymes to attack the protein walls of cancer cells and allows the body’s killer cells to destroy the cancer cells. 

14. Some supplements build up the immune system.

(IP6, Flor-essence , Essiac, anti-oxidants, vitamins, minerals, EFAs etc.) to enable the body’s own killer cells to destroy cancer cells.. Other supplements like vitamin E are known to cause apoptosis, or programmed cell death, the body’s normal method of disposing of damaged, unwanted, or unneeded cells. 
15. Cancer is a disease of the mind, body, and spirit.A proactive and positive spirit will help the cancer warrior be a survivor.Anger, unforgiveness and bitterness put the body into a stressful and acidic environment. Be a forgiving spirit. Learn to relax and enjoy life.

16. Cancer cells cannot thrive in an oxygenated environment. Exercising daily, and deep breathing help to get more oxygen down to the cellular level. Oxygen therapy is another means employed to destroy cancer cells.

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Please share the above with those who can benefit.


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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 !!