Shutterbug's Blog

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


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My Journey through 2018

As I successfully complete 7yrs after my Stem Cell Transplant (In December 2011) for Multiple Myeloma , I feel blessed and would like to summarize my journey through 2018.

One of the best things to happen this year is that I just had one bout of severe cough and cold and that was the only time I took Antibiotics during the whole year. There were a few times when a cough had just begun and thanks to my Ayurvedic Doctor who gave me a powder which instantly controlled the cough. He advised me to never ever take Antibiotics for a cough. Hitherto I was meeting the ENT Specialist once every few months and I was popping Antibiotics each time. Am sure my ENT Doctor is missing me and wondering what happened to me :)). I have also begun using a mask when I venture out , especially Malls, Supermarkets etc . These masks are a boon. I have also written a post about my adventures with the Mask in this Blog :)

A few months ago I had severe pain and swelling in my right knee . I was advised to take pain killers and antibiotics by an orthopedic. When I discussed with my Ayurvedic Doctor , he gave me Wokvel and said this will prevent any further issue in my knees. My knees are doing great now. I do a few exercises and also give a little oil massage to my knees before sleeping. So far so good.

Visited my Grannys Village near Nellore twice this year. I always look forward to visiting this tiny village.

A wish to visit Pondicherry and Kanchipuram was fulfilled. Didn’t expect to visit Chidambaram and also go on a boat ride among the Mangroves in Pichavaram .

My Uric acid levels have been within the limits but are on the higher side. Currently drinking lots of water, eating cucumbers and gave up meat and eggs.

A Biannual visit to my Oncologist is pending . Did a few blood tests recently and my Globulin Serum levels are well within the normal range.

On the advise of some beautiful people I have incorporated a few activities in my daily routine. I now recite the ‘Vishnu Sahasranamam’ every morning . Takes 25 minutes each morning. The vibrations generated by chanting are supposed to help the body and mind.

I also started doing a ‘Colour Meditation’ advised by my Mentor in my MM journey . This 15 minute guided Meditation by Brahma Kumaris (Youtube) has become an important part of my daily routine in the Morning and Evening. Meditation helps in healing .

Pranayama twice a day is a must. Takes 20 minutes each time. I walk for 10 minutes a few times a week. Some popular Yoga Masters claim that a few hours of Bhastrika and Anulom Vilom Pranayama twice a day can stop Cancer as Cancer cells cannot survive in an Oxygen rich environment. I strongly advise all Survivors to do anything and everything to put a check on the cells.

Having a comfortable time at work which keeps me busy for 9 hours everyday. Thanks to my wonderful colleagues.

Met a lot of friends from school and college all through the year. Attended several events hosted by family and friends like Weddings, house warming , Baby Showers etc.

My spiritual journey continues and I am glad to have come across Sri Aurobindo and The Mother, thanks to our recent trip to Pondicherry. I had bought a few books from the library in Aurobindo Ashram on Healing.
Started reading these books and found great insights into how the Mind/Thoughts can heal a person. Very minute details are discussed which are very practical and can be implemented easily so as to get healed. Through these books am able to appreciate the Spiritual teachings  of Sri Aurobindo and The Mother.
‘Intergrated Healing’ is one book which I will review once I am done reading.

Nice to see that the hits on my Blog are increasing. I get visitors from small unknown countries too. This motivates me to post more and hopefully the posts motivate more people.

Wishing all the readers of my Blog a Healthy and Peaceful 2019 !!


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To Reveal or not to Reveal

Having been diagnosed with MM in Oct 2011 and come a long way ,  a thought often arises in my mind as to whether I should reveal/discuss my condition with whom I spend a considerable amount of time.

A lot of people around me , at work , friends and relatives already know to some extent. They may not know exactly what I have been through. However my observation is that no one ever asks me any direct questions. Many of them come to know through various channels but prefer not to talk about it. 

Either they dread talking about this topic or they feel they shouldn’t cross a certain limit as health is supposed be a private matter or they don’t start the topic because I don’t encourage such a discussion or people are engrossed with their own stuff.

Whatever be the reason , I am quite comfortable with the way things are happening around me….ignorance is bliss 🙂

I myself have been through similar situations in the past , much before I was diagnosed, when I came across people who were diagnosed with Cancer and I would be terrified to even look at them. So , here I am , having survived Multiple Myeloma and writing from the other side :).

hmmm , what goes around comes around !!  

When someone asks me how I am doing , I give a big smile and tell them ‘I am doing well, thank you’. There are a few confidantes at work, with whom I share information about my tests, my medications etc . I also update my Boss who has a lot of interest in matters related to health / Alternative treatments and gives me some advise too.

There are a few online friends from school and college with whom I feel happy to share the status of my health.

Apart from my parents, brother and sister I do not discuss with any others in the extended family. Of course , hubby is a constant support 🙂

There are times when I feel tempted to share the link to my Blog with everyone at work, extended family and with all my classmates  from school and college. I guess I am not yet ready to openly declare…maybe some other time. I can already sense that a few are staying away from me and it is ok. 

I shouldn’t be thinking too much about who knows and who doesn’t and concentrate more on enjoying the present moment. 

The best part of this blog is I can let out all my feelings and share my MM journey and other random events in my life.

So glad I am finally stable. 

A few readers (MM patients/caregivers) of my Blog get in touch with me and I am more than willing to listen and encourage them. Gives me immense happiness to know that I have made a difference to them. I hope to get more opportunities to do my bit to humanity.

 

Life seems much more meaningful now.

 


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Update on my Bone Marrow Biopsy – M Band not seen !! 23 June 2018

It is one year since I got a Bone Marrow test done.

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I was diagnosed with MM in Oct 2011 and underwent Stem Cell Transplant in Jan 2012. Since then I have been doing the  Bone Marrow Test every six months. In June last year ie June 2017 ,  my Oncologist told me to come back for the test after a year !!. Once a patient crosses five years after a Stem Cell Transplant , the Bone Marrow Test is done once a year. That was the second best thing that happened to me. The best thing to have happened was in Feb 2016 when my Oncologist said I could stop taking Chemo Medications 🙂 .

I have been taking Ayurvedic medications since more than three years and the results are good.

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The Bone marrow sample was taken last week. Reports usually take around 5-6 days . I had been a little nervous while I was waiting for the Reports , though I was confident that all will be fine.

While I was in touch with the Hospital to check if the BMA Reports were ready , I was surprised to see a whatsapp message from my Oncologist after 5 days.

He sent me the Report via whatsapp !! There was no comment from him.

I opened the pdf document and quickly scanned for the words ” M Band ” or ” M Spike”, while my heart was racing. I did find the words ” M Band not seen ” .

Yayyy !!

There was a BIG smile on my face and I immediately called Dr Suresh.

He said ‘Everything is OK’ .

I said ‘Thank You Doctor , when can I meet you’.

He said ” what for ?”

I said ‘I would like to meet you’ 🙂

I then shared the Report via whatsapp with Dr Nitin , Ayurveda . He immediately called me.

He was very happy with what the Reports said.

Met Dr Suresh this morning .

He said ‘we don’t need to do the Bone Marrow Test from now on’. 

That is the greatest thing anyone like me would love to hear 🙂

I blurted ‘What Doctor, how can we stop?!!’

He said ‘just do the Electrophoresis test once every six months. As long as there is no M Band , there is no need to do a Bone Marrow Test’

I was happy with that advise.

Wow , no more piercing of my Sternum. 🙂

He then asked me if I had any other problems.

I asked him if Neuropathy is permanent and was happy to hear that it is reversible and no where it is written that it is permanent.

Sounds good but there has not been any improvement in my condition in all these years.

To alleviate my Neuropathy he recommended Pregabalin instead of Renerve which was advised by a Physician. Renerve does help but my B12 levels are exceeding the limits which not good either. Will try the Pregabalin tablets.

He then told me there are four new drugs for managing MM , with lesser side effects , one of them being Neuropathy. He also said that Bortizomib , the drug that I used , causes Neuropathy. This is good news . 

Its more than three years since I started taking Ayurvedic Medication from Dr Nitin and almost two and half years since I stopped taking Chemo medications. Dr Nitin now wants to reduce my curcumin dosage . However I don’t wish to hurry and plan to reduce gradually.

I also sent my report to Dr Gayatri, who was diagnosed with MM way back in 2002 . She has been a guiding and inspirational force for me since last three years. She had introduced Dr Nitin , Ayurveda to me. She hasn’t been taking Allopathy nor Ayurvedic medications since last several years and is doing well.

When I asked her how she Manages , she tells me that regular Pranayama , Yoga and Meditation do help in healing.

Felt so good talking to the Brave lady who oozes a lot of Energy. She is a God send.

Dr Nitin too had reiterated that Exercise, Pranayama, Yoga and Meditation can correct DNA problems. He insisted that I should be consistent with these practices.

Right now my highest priority is Pranayama, Yoga and Meditation along with Ayurvedic medication , proper diet and regular fasting.

Time to celebrate !!


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Bone Marrow Biopsy (after a year) – 14 June 2018

Been a year since I had the Bone Marrow Test.

I took the test once every six months since 2012. However, last year in June ,my Oncologist Dr Suresh said I can meet him after a year. This test is done once every six months during the first five years after a Stem Cell Transplant and from then on it is done once a year as per the protocol. My Oncologist , being an Optimist and a Crusader told me last year that I am ‘Technically Cured’. Sounds wonderful isn’t it !!? 🙂

I have been using Curcumin , Ashwagandha and other herbal medicines since last three years. I get these Medications from Dr Nitin, Ayurveda . Since last two years , on the advise of Dr Suresh , I stopped taking chemo tablets.

The past year has been quite smooth ,  except for the Sore throat infection a couple of times. My Vitamin D levels were low and I am taking supplements to improve the levels.

The day has finally arrived.

After the Bone Marrow Aspiration procedure was completed , my Oncologist asked me if I was comfortable. Yes, he does the bone Marrow aspiration. I said , I am comfortable and he smiled and said I am his only patient who doesn’t crib or complain :). He must be kidding. He is definitely the best , he completes the process in a jiffy. It is all over in a couple of minutes , all through he would be chatting . I can’t imagine anyone else doing the procedure .

Blood samples were taken for the following tests : Immuno globulin , Electrophoresis , Bone Marrow aspiration, Chem 20.

Will have to wait for a week before the Reports are out.

Till then I plan to watch a few movies on Amazon Prime 🙂

 

as you wish

 

Take Care !!

 

 


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7th year after my Stem Cell Transplant for Multiple Myeloma

The last six years have been the longest years in my life. Extremely grateful for being given a second chance to tread our lovely blue planet .

Been living each day with gratitude and lots of hope. Doing my best to share my experience with Alternative treatment via this blog. Have been able to manage my condition (Multiple Myeloma) successfully. It’s been 2 years since I stopped Chemo. So far so good. Was able to help and guide other patients with MM who came across my blog and got in touch with me . Gives me immense happiness.

Learnt a lot about the importance of diet , fasting etc for preventing and treating Cancer. Most importantly , I have experienced the Miraculous healing properties of Curcumin , for managing my condition. Curcumin has powerful healing properties which can treat several diseases.

Nothing else in this world is more important than being alive. Everything else is a bonus 🙂 . Yes, it does sound like I am selfish 🙂 . Take utmost care of your health and love yourself a lot. Be healthy so you don’t have to trouble your near and dear ones if you fall sick.

I am so thankful to my Doctors , family , friends , colleagues and other well wishers who have been supporting me throughout.

happy


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Back to Curcumin from Turmeric

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

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

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

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

Hb is 11.2

Creatinine is .9

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

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

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

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


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Status update on my MM : 23 Jan 2018

Been a while since I updated my status wrt MM.

Got the CBP , LFT and RFT tests done a couple of days ago.

All renal parameters are fine. Potassium , Glucose , TLC are also within normal ranges.

ESR : 51 ( This is expected , 0-20 is the normal range)

Hb : 10.6 (was 11 in November 2017 )

Globulin Serum : 4.0 (increased from 3.8 in November, normal values are between 1.8 and 3.6 )

This is a cause of concern.

Spoke to my Ayurvedic Doctor who felt there is nothing to be worried about. However I am not comfortable and asked him if I can increase the dosage to 3 capsules three times a day. He actually wants to reduce my dosage if possible. But I am not yet comfortable reducing the dosage right now.

I have been observing a little dip in my energy levels and was also feeling cranky during the last one month.

I had been taking 3 caps of Curcumin for almost 2 and half years since May 2015. All was well during this period and hence a few months back I was put on Turmeric. But the tests in November 2017 revealed that Globulin Serum increased to 3.8 . I was back on Curcumin 500mg 2 Capsules three times a day in December 2017. With the latest reports I feel the dosage of Curcumin has to be further increased .

Glad he agreed and I am back to my original dosage of 3 capsules of Curcumin 500mg three times a day. I will continue to take Ashwagandha , Tinospora Cordifolia , Satavari along with Curcumin . I am hopefull that my counts will jump back to normal very soon.

I shared the reports of my results with a confidante at work. She knows a lot about me and my style of working and feels that I have been exerting myself at work and it is better that I slow down a bit 🙂 . Will do something about this .

In my next set of tests after a month I will be including tests for Vit D , B12 , Uric acid and Calcium levels.

That’s all for now.

Time to take loong deeep breaths and relax :))