Shutterbug's Blog

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


Leave a comment

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 !!


Leave a comment

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 :))

 

 

 


10 Comments

Summary of my Journey with Multiple Myeloma

 image

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~


Leave a comment

Alternative Treatments for Cancer

 

miracle ahead

People with chronic diseases go for various treatments depending on the faith they have in a particular treatment.  Most use allopathy by default, as the duration of treatment is the fastest ,success rate is highest and the results are quick. Some follow a different treatment based on the experiences of their near and dear ones or when Allopathy has no solution or as a last resort.

But usually for cancers Allopathy is the first and foremost treatment that one opts for as the diagnosis itself happens in the third or fourth stage wherein the disease would have progressed to a large extent and Allopathy would be the best treatment. .

I didnt think of Alternative treatments for two years after I was diagnosed with Multiple Myeloma . I started experiencing side effects of Chemotherapy in the third year and I began scouring the internet for other treatments.

Internet is full of articles on Alternative Treatments . Initially I didnt believe all that was written on various websites and was being said on youtube videos by patients. I found them ridiculous too. Always wondered how it was possible that people are getting cured of Cancer which is not curable . Not just ‘managing’ but they were getting ‘cured’ and have been living for decades without any Allopathic treatment. I felt that these people were just exaggerating , that they wanted people to watch their videos , knowing that many would be looking up , that they were just uploading these videos to get a lot of views/hits. There were websites which talked a lot about a cure but at the end of the page there is a link to a book with a price or some secret methods which confirmed my fears that people only wanted to make money by luring desperate patients.

I wanted to believe all this was true , that there is a way , but was not convinced.

I came across various articles on the reasons for cancer and a cure. Juicing, diet, exercise, detox , supplements, antioxidants , various high frequency protocols, immunotherapy , Ph therapy, effect of yoga and meditation for curing the disease and the reasons for cancer varied from DNA mutations to microbes to lack of Vitamin D , poor diet , stress etc. These are a few of the topics that I was reading and trying to digest . All the information was baffling.

Just when I relapsed , at the end of the third year after my Bone Marrow Transplant for Multiple Myeloma, I came across a blog written by Margaret , a patient with Smouldering Multiple Myeloma. She was using natural supplements and has been successfully ‘managing’ the disease for more than a decade. After reading her blog , all the information and videos that I had seen suddenly flashed across my mind and I began believing all that I had read and seen. Suddenly all of it made sense. I was desperate for an alternative solution.

I talked to my Oncologist if he could recommend any Ayurvedic doctor but he was unaware of any specialist in Ayurveda. Ayurveda is an ancient Indian mode of treatment  which uses natural herbs for curing various ailments. He didnt discourage me from using any alternative treatment and advised me to use ‘Tinaspora Cordifolia’ , a natural immunity boosting supplement.

I recommend everyone to do their own research. Once convinced one has to start incorporating one or more methodologies as per their faith and convenience. One needs to have faith in the treatment and should go all the way and follow the methodologies scrupulously.

I have almost given up food products made with sugar , milk , all purpose flour , rice and also reduced salt intake .All of these comprise a bad diet. These are the five white poisons that Ayurveda recommends to avoid.
I also read that cancer cells feed on sugar. I initially started taking supplements like Curcumin (in the form of turmeric) suggested in Margarets blog , started doing Pranayama and meditation , I also started taking ashwagandha , shigru , punarnava , garlic , had ginger decoction in the morning, eliminated most acidic foods  and lo and behold within three months my MSpike was down to Zero !!

It is nothing short of a miracle.

I was later referred to an Ayurvedic Doctor by another MM survivor and since then I have been using Curcumin and other natural supplements since last one year. Fasting is also part of my regimen. I have been encouraging the use of Curcumin to whomsoever I come across. Curcumin is an extract from turmeric .Turmeric is a spice that is extensively used in South Indian cooking and as a medicine in India for various ailments.

It is one year and 3 months since I started following the new regimen and my M-Spike is in control.

Talk to other patients and their caregivers who follow Alternative treatments make your own decision.

If there is a will to survive , a solution will appear out of the blue. Never give up !!

Have patience and the Miracle will happen.


Leave a comment

Update on my break from Lenolidamide

image

I have been taking Lenolidamide 5mg since Dec 2014 as there was a relapse of Multiple Myeloma.

Thanks to Lenolidamide and Alternative medication , my M spike was zero during two consecutive bone marrow tests done in 2015.

However I started experiencing side effects of Lenolidamide in the form of a drastic drop in the counts of TLC and Neutrophils in Jan 2016.
I also had several infections simultaneously. Sore throat ,stomach upset ( diarrhoea ) , asthma attack, eye infection and UTI.
My oncologist told me to stop lenolidamide for one month. During this one month , ie Feb 2016 , I continued taking Curcumin and other immunity boosting tablets.

Went for the CBP LFT AND RFT tests after one month at the end of Feb 2016. All the counts were back to normal. Got a test done for Vitamin D too and the result was normal .
Met my Oncologist with the reports. He was happy with the counts and told me to come back after 3 weeks with new reports. Told me to discontinue Lenolidamide for this period too.

I am currently taking three 500mg capsules of curcumin three times a day and other immunity boosting tablets two times a day prescribed by my Ayurvedic doctor .

I have been off chemo medication for almost 2 months now. Hope to stay away from chemo forever.

Will go for the next routine test in the last week of March 2016.

Keeping my fingers crossed.


Leave a comment

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.
———————————-
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% .


Leave a comment

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/