Shutterbug's Blog

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


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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 :))


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A write-up on ‘Evidence Based Ayurveda Treatment & Diet for Cancer’ by Dr Nitin Kochar, M.D , Ayurveda

Here is an informative write-up by Dr Nitin , M.D. Ayurveda . I have been consulting Dr Nitin and taking his Medication since more than two and half years for Multiple Myeloma.

Thanks to his advise and medication I am free from Chemo since one and half year.

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Here is the link to the article :

https://www.practo.com/healthfeed/evidence-based-ayurveda-treatment-diet-for-cancer-30780/post

In the writeup , Dr Nitin has written all about the root cause of Cancer and how Ayurveda can help in combating the disease. He also answers some of the FAQs on Chemotherapy  Vs Ayurveda.

Here it is –

Frequently asked queries ?

1Are there any steroids in the Herbal medicines – No, we do not do such kind of unscrupulous or non ethical practice. My drugs can be tested and subjected to any kind of test for that matter. 

2) Are these drugs safe during Chemotherapy- There are certain reports, published in good journals, which has proven good effect of chemotherapy when combined with herbal treatment. ( Care to be taken that herbal treatment should be of standardized quality and should not be given on the day of injectable chemotherapy, rest it can be given. It also depends of stage and type of the cancer, so final decision to be taken only after discussing every pros and cons) . There are various clinical studies indicating that if standardized herbal preparations of Curcumin, Ashwagandha are given along with chemotherapy, results are better. Many chemo resistant cancers respond very well when supplemented with Curcumin , Ashwagandha & Tinospora cordifolia. 

3) Can herbal therapy replace or avoid chemotherapy– No, one should follow complete modern protocol as it is. Herbal treatment is mainly given to as chemo adjuvant to improve the immunity and mitochondrial function as stated above.

4) Can Ayurveda treatment avoid surgery and radiation- All of you will be surprised to read the fact that, in Ayurveda, which was written 3000 years B.C., it is clearly mentioned that, first line of treatment of Cancer is to surgically remove it and then to ” Burn” the margins, this concept is similar to today’s modern protocol of Surgery followed by Radiation. So any tumor , if operable, should be removed promptly by an expert Onco-Surgeon. 

5) What is Chemo prevention ?  This term was coined by Dr Michel Sporm, in 1976. Chemopreventives are the drugs, natural or Synthetic , which have potential to Reverse , Suppress and or Prevent further growth of cancer. I advise various such Chemopreventive herbs and ways to many normal people and also to cancer patients.

 

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I am extremely grateful to Dr Nitin and wish that many more will benefit from his expertise.

In my Blog I have chronicled my journey , experience and progress with Alternative Treatment.

 

~~ Have a good Day !!