Multiple Myeloma - Survival Rate Statistics by Hospital
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Multiple Myeloma Survival  in India by Priya Menon and Gary Petersen

7/29/2013

148 Comments

 

India has 1.24 billion people, or a population that is nearly 4 times greater than the USA.  The USA has nearly 22,000 newly diagnosed patients with multiple myeloma, and the best information I could find is that each year 16,000 are newly diagnosed in India.  This would indicate that the incidence rate in India is much lower than that in the US.  I have not found a good explanation for this significant difference.  Difference in diet, life expectancy, rural vs. urban population, industrialization, use of chemicals and pesticides, under-reporting, genetics, all could have an impact; however it would be great to know why people from India are 5 to 6 times less likely to be diagnosed with multiple myeloma.

Priya lives in India and provided the following outline of how their health care system provides services to myeloma patients in India:  

Even though India is the largest generic medicine exporter, healthcare policies of India fall short of saving the needy. Recent years have seen some progress with regard to publicly funded care in India, but this is in its nascent stages. This could be the reason why spending for health is one of the leading causes of poverty in India with over 63 million individuals pushed to shell out their last earnings by healthcare expenditures. India’s urbane population has gradually begun to opt for health insurance which until now had existed only as part of basic life insurance policies or as part of overall benefit package of employees.

In order to understand the scope of myeloma treatment in India, I had connected up with a few hospitals and oncologists here. What I came to understand is that treatments offered for myeloma is good but there are drugs that are not yet available here and tests like FISH that are not available at all treatment centers. However, clinical trials are not very common and participation is less. Moreover, the money involved, from an Indian perspective, continue to be very high. You can read one of the conversations I had with Dr. Lalit Kumar from All India Institute of Medical Science (AIIMS) which is funded by the central government. Dr. Kumar provides an overview of myeloma treatment in India and the costs involved.

Quoting Dr. Kumar:

In a government hospital like AIIMS, (funding by central govt) the cost of transplant comes to less than 3 lacs rupees (approx. 6000 US $). Private hospital charges approx. 8 lacs (approx. 16000 US $). Thalidomide would cost 3000 INR per month; Lenalidomide is about 15000 INR per month and bortezomib 20,000 INR per month. Zoledronic acid (injections) costs about 1500 INR per month. 

So, for a person on Lenalidomide + dexa and Zoledronic acid cost would come about 20,000.00 INR (approx. 370 US $) per month. 

CLICK HERE to read Dr. Lalit Kumar’s interview. (http://trialx.com/curetalk/2013/03/myeloma-in-india-curetalk-in-conversation-with-dr-lalit-kumar-professor-of-medical-oncology-all-india-institute-of-medical-sciences-aiims-delhi-india/)

Given below is a list of hospitals which offer some of the best treatments for myeloma patients in India:

-       Post Graduate Institute of Medical Research,   Chandigarh 

-       AII India Institute of Medical Sciences, New Delhi

-       Tata Memorial, Mumbai

-       CMC, Vellore

-       Manipal Hospital, Mangalore

-       Tata Medical Center, Kolkata

-       Apollo Hospital, Chennai

And for transplants, you can find a list of CIMBCR approved centers in India at the link: http://www.cibmtr.org/About/WhoWeAre/Centers/Pages/index.aspx?country=India

So it would seem that if you can get into a state subsidized hospital you can get the standard of care for low risk multiple myeloma of Rd, transplant, and one year of Rd  maintenance for approximately $10,400 US.  However the average family in India earns just $6100/year, and this is usually without insurance and in a pay for service system. This is care at a state subsided facility, and the cost in the private sector is greater. 
  For a US citizen to understand what this would mean, it would be equivalent to spending $86,000 of your own money out of pocket. However the true cost in the USA for a US citizen without insurance would be much closer to $500,000.  So even though the cost of care is far less in India, it is just as painful financially to the average citizen of India.


For all of the international myeloma patients, we hope that the last few posts have provided some help with your myeloma journey.  We will continue to look for ideas that will benefit all of the multiple myeloma patient population.  


By Priya Menon and Gary Petersen 


For more information on multiple myeloma go to the web site www.myelomasurvival.com or you can follow me on twitter at: https://twitter.com/grpetersen1
148 Comments
Neeraj kamra
7/30/2013 09:15:45 am

Hey Gary,
M so surprised dat how close u hav written d treatment of a myeloma patients of india.
Well my father is on lenom,lenalidomide.
Exactly d same amount.
But now days bortezoimb is bit cheap, one injection cost us 4000 INR ×4 =16000INR a month.
I need advice from u, can u plz give me ur e mail id.thanxxx

Reply
Gary Petersen link
7/30/2013 03:13:21 pm

Neeraj, Happy to help. You can email me at [email protected]

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Neeraj
8/1/2013 12:47:58 am

Sir,
Can u plz mail or msg me ur cell number,
My email id is [email protected]
Cell no is +919414635934.
My father n myself both r myeloma patients, desperately need ur help.
Thanxx

Gary Petersen link
8/17/2013 02:37:38 am

Neeraj and I have had a few email contacts and he has chosen to get a second opinion in the USA with one of the Multiple Myeloma specialists listed on this site with the best survival rates. To me he is doing the single best thing a myeloma patient can do to improved their multiple myeloma survival prognosis. Anyone can get a second opinion from a multiple myeloma specialist no matter where in the world they live on line on the web site,

https://2nd.md/disease/multiplemyeloma

God Bless your Myeloma Journey/ Gary Petersen

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VIKAS SOOD
3/8/2014 04:51:51 am

Sir, my mother is diagnosed with MM. Her KAPPA/LAMBDA ratio is 6.88. Please help to get further details on MM and how it can be treated best.

Best Regards

Vikas Sood

+91-9099020161

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Gary Petersen link
3/9/2014 12:11:25 am

Vikas, If you go to the home page of www.myelomasurvival.com you will find a lot of information, and if you go through the myeloma blog page on the site you will find a number of articles that would help. Two of the most helpful would be:

http://www.myelomasurvival.com/1/post/2013/08/beat-the-multiple-myeloma-life-expectancy-prognosis-how-to-educate-yourself-byjenny-ahlstrom-and-gary-petersen.html

http://www.myelomasurvival.com/1/post/2014/01/improved-multiple-myeloma-life-expectancy-in-five-easy-steps.html

At the bottom of the home page there are a number of other links you should find of value. Best Regards and may God Bless your families myeloma journey. Gary

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Priya Sundaram link
11/15/2014 09:14:49 pm

Hi Gary,

Thanks for the info provided on this page. My dad is 70 years old and has been diagnosed with Multiple Myeloma the day before yesterday. He lives in India and I live in the UK. We are considering various treatment options at the moment. Though I live in the UK, I have no idea about Multiple Myeloma treatment in the UK and if getting him to the UK for treatment will help. I am not sure about the cost of treatment for this in the UK. He has a medical insurance in India and it wouldn't equate to much in UK money. So, if I have an idea about the best care available in the UK and how much it would cost, it will help me decide.

Any guidance and information in this regard would help.

Thanks in advance for your information.

Regards,
Priya

Reply
Mary Eliowitz
1/18/2015 02:36:26 am

The residents of India regularly consume turmeric, and curcumin, its active ingredient, is a potent anti-inflammatory.
See: Curcumin May Reduce Free Light Chains In Patients With ...
www.myelomabeacon.com › News
The Myeloma Beacon
Loading...
Mar 7, 2012 - Results of a small Australian study show that patients with the ... Free light chains are proteins in the blood that are known to be linked to myeloma cell activity. ... The Role Of Curcumin In MGUS And Smoldering Myeloma.

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dr deepak bansal
4/19/2015 01:07:00 am

Can u plz guide me what the best hospital for myeloma treatment in india
my father can be started with botezumab, decxa and cyclophosphomide

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Gary Petersen link
4/19/2015 01:57:30 am

Dr. Bansai, I do not have a lot of information on myeloma specialists in India. I do know that Dr. Lalit Kumar - All India Institute of Medical Sciences - New Delhi, India has an excellent reputation. Gary

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nikunj
3/14/2016 06:12:54 am

Dr. S H Adavani gives a best treatment and the right opinion..he is available at jaslok hospital,SL Raheja hospital at mumbai
.

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achal pande
5/7/2015 03:50:12 am

My mother has a very high esr and low hb. She has a lot of weakness. Does she have myloema

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Gary Petersen link
7/11/2015 04:10:07 am

Achal, More tests would need to be taken to determine a myeloma diagnosis. Myeloma patients often have fatigue and low hemoglobin counts, however this may be caused by many other ailments. You local doctor can have a M spike test, and a light chain test to determine if myeloma can be rules in or out. If high M spike or high light chains will determine if she should have a bone marrow biopsy to confirm a myeloma diagnosis. Gary

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sanjay kumar saini
7/9/2015 10:12:01 pm

sir ,
my father is diagnosed with multipal myeloma in 10 years. can you information best doctor in mm in india.mob 09829881847

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Gary Petersen link
7/11/2015 04:16:07 am

Sanjay, The listing of locations on this post is the only and best information I have on locations in India which are well know and good at treating myeloma in India. Sorry that I do not have more data about India. You may want to email [email protected]. Gary

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Dilip kumar jain
7/24/2015 02:05:48 am

my father (age 67 years) is diagnosed with multiple myeloma, he is suffering with low back pain, dr. is already started chemotherapy,i would like to need some advice pls let me know should i share his reports and treatment plan.

Regards
Dilip Kr Jain
+971508431802

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Gagandeep Singh
6/13/2019 12:56:34 pm

Hey Dalip,Hope your dad fight with myeloma going very well. My dad is also suffering with multiple myeloma from last ten years. Doctors are suggesting for Stem Cell transplant. Do you think this is good idea?

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Sara
8/4/2015 02:50:14 pm

Sir,

My father (70 yrs old) has been diagnosed with MM (affected in 3 places) and getting treatment in Chennai, India from last week. But, the doctor said that can give guarantee up to 15 yrs from now. And added that surgery would not get success since his age is 70. Is it correct ? Is it not curable 100% ? I am ready to go for the treatment anywhere in the world, where my father get cured 100%. Please advice and give the life to my Father. Thanks.

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Gary Petersen link
8/5/2015 01:12:46 am

Sara,so sorry to hear of your fathers myeloma. I am not a doctor, but a knowledgeable patient advocate and can provide incite from that perspective. It can be cured but also it can be treated as well as a chronic illness. The location with the best cure rate that I am aware of is UAMS in Little Rock Arkansas which will have cure for 50% or patients if they are low risk myeloma. If high risk then there are few who can provide a cure of more than 5% or so, and clinical trials are the best bet for a longer life. University of Chicago is using KRd with SCT in a clinical trial and has some great results for high risk patients who are about 15% of all patients. Chances are you father is low risk(85% of patients), but this would have to be confirmed by FISH analysis or gene expression profiling. I do not know what type of surgery they are talking about, because usually treatment will help bone lesions or radiation is used in some cases. If you father is infirm and fragile some doctors will prefer the less intense control route, but if relatively healthy they will go for a more intense treatment with stem cell transplant(SCT), consolidation, and maintenance. Good Luck and may God Bless your family's myeloma journey. Gary

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Arijit Nag
8/16/2015 05:08:53 am

Hi Gary,
Keep up the good work. But it is sad to note that you have left out Institute of Hematology and Transfusion Medicine, Kolkatan that caters to a huge bulk of myeloma patients from the entire Eastern part of India. It is a Govenment Hospital and is one of the best equipped centres to deal with patients with hematologic malignancies.
Regards,
Arijit

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Ratheesh
10/13/2015 01:20:17 am

Sir
my sister age 38, has been diagnosed with multiple myeloma,kappa chain, stage 3 B, renal failure.Now 4 dyalisis already done.please reply me that is it curable.what is opinion about further treatment.bone marrow transplant iseffective or not.cost of bone marrow transplant.survival rate
Regards
Ratheesh

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Preetika Chandna
11/21/2019 05:20:24 pm

I was diagnosed at 36, I'm 39 years now. I was treated with a stem cell transplant at Max Hospital, Saket under Dr Rahul Naithani. I'm on maintenance therapy now.

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Gary Petersen link
10/14/2015 09:35:50 am

Ratheesh, your sister is so young, but young patients tend to live longer. Dialysis dependent kidney failure tends to be a negative prognostic indicator. My doctor Dr. Barlogie believes early treatment with Velcade and stem cell transplant can improve the kidney function. It would be very important to see a myeloma specialist like Dr. Lalit Kumar. Best Regards/Gary Petersen

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Rojalina Das
2/8/2016 05:32:10 am

My mother( age 53) diagnosed with multiple myeloma 7 months before.She has completed her 6 months cycle with(bortezimb +dexamethazone+Thalidomide) and now continuing with Zometa(for bone pain).suggest me If I go for autologus transplant.How much it will affect the life expectancy.As she is not ready for the transplant(she is not disclosed the disease) ,If it will be okay,we start it after 6-7 months

Reply
Gary Petersen link
2/24/2016 08:19:43 am

Rajalina, so sorry for the delay in answer your questions. My web site was not publishing comments and just got it to work. Yes at 53 she should have a autologus transplant if she is low risk by FISH test. In the US induction(she just had), transplant with RVd TVd or VTD-PACE, Consolidation, and Maintenance(Rd, RVd, or RVd is the gold standard of current treatment philosophy if low risk and fit. Early vs. Late transplant is still being debated, however it is more important just to have one. Good luck and God Bless your myeloma journey/Gary

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Shoib
3/17/2016 05:57:50 am

My uncle 57 has been recently diagonosed for MM. I would like to know about the best treatment places for MM in India, Cost and life expectancy. His legs are paralysed due to spine compressive , please let me know if such patients can get back to his/her legs after treatments. Further his kidney have also suffered some serious damage, Can it be reversed.

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Gary Petersen link
3/18/2016 07:31:35 am

Shoib, so sorry to hear of your uncles myeloma. He is quite young. I am not a doctor but just an informed myeloma advocate. I do not have any specific information other than what is on this blog post about locations and costs. Each person presents differently, however if a low risk patient(85% of patients), people can live for many years and spine damage can be repaired and Velcade and SCT(I had end stage renal failure and now am off of dyalysis) can help to reverse kidney damage. Dr. Kumar at AIIM New Delhi is one doctor who is highly thought of, and given your uncles condition, I would say getting to a myeloma specialist is critical and there is no time to wait. Good luck and God Bless your families myeloma journey/Gary

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Tuli
3/19/2016 10:48:39 am

My father is 55 years old and has been suffering from myeloma from the past 2 and a half years.Initially his ISS stage was 1 but now it has become 3 (relapse).He has Pancytopenia ,Hypercalcemia and some kidney problems of infection.He has bevome resistant to cyclophosphamide.He already took 24 bortezomib in the beginning.He has 17p deletion.He is being given bortezomib again.Can you please guide me about what needs to be done now for a second opinion?

Reply
Gary Petersen link
3/27/2016 04:33:44 pm

Tuli, sorry to hear about your father, I am not a doctor so I can point you to a blog post of mine on how to get a second opinion. That blog post is at the link: http://myelomasurvival.com/myeloma-blog/next-step-how-to-get-a-second-opinion-for-multiple-myeloma-treatment
A friend has 17P deletion and has been in two clinical trials with Dr. Asher Channan-Kahn of Mayo Jacksonville. One was with Ninlaro, and the most recent was ABT-199, both of which put the patient into remission. If these are available in India, I would look into one of them. Good Luck and God Bless your families myeloma journey.

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Mahesh Meena
3/21/2016 08:57:06 pm

Hello Gary my father (Age 50) is diagnosed with MM. Normocellular marrow with 11% plasma cells and 25% lymphocytes. NE:E ratio is 8:1. We are starting treatment from tomorrow in Mumbai with bortezimb +dexamethazone+Thalidomide. Is it curable. What is the life expectancy for him.

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Gary Petersen link
3/27/2016 05:02:01 pm

Mehesh, I am not a doctor but an informed myeloma patient advocate. Some doctors believe it is curable in 15 to 40% or patients, but this depends on the doctor. A big if is whether the patient is high or low risk, and the Fish test would determine risk. If low risk(85% of patients) the general consensus is to have induction, transplant, consolidation, and then maintenance treatment. The single most important choice is to find a myeloma specialist and get that doctor on your team. The list on this post would be a good place to go to find a specialist in India. A low risk patient will live 5 years to all the way to cure, depending on the skill of the specialist. For high risk patients the outlook is not that good with the current average of 2 years, and some doctors would recommend targeted clinical trials based on the Fish test results, or an allo transplant. Good luck and God Bless your families myeloma journey.

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Kunal
3/31/2016 11:20:52 am

Dear Gary,

My father has been diagnosed with Multiple Myelome yesterday and his M Band is 19.6 and is 73 now with diabetic background since last 20+ odd years.

Appreciate if you can suggest the best treatment and doctors available in India !!

Reply
Gary R Petersen link
4/5/2016 07:43:14 am

Dr. Lalit Kumar, Professor of Medical Oncology, All India Institute of Medical Sciences (AIIMS), Delhi, India is the only myeloma specialist I know of, but that is because I am not that familiar with the doctors in India. Those locations listed in this article would be good places to call and find out from them who there best myeloma doctor is and how many patients he sees each year. Good luck and God Bless your families myeloma journey. Gary

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Saikat link
4/11/2016 04:25:13 am

Kunal, have you done all the test before detecting MM of your father

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MANUEL
5/2/2016 02:34:21 am

Hello Gary,
Nice blog you got here. My brother in law has recently been diagnosed MM at the age of 42. He is presently lying in the hospital in Cameroon and he already has a kidney failure and can rarely sleep at night due to harsh back pain. I am presently studying in Hyderabad- India and considering the option of bringing him to India for treatment. Please, can you give me an advice if you can?

Best regards
Manuel

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Gary R. Petersen link
5/7/2016 11:33:39 am

I do think you have the right idea if your brother is strong enough for travel. India has the equivalent of RVd, and can do SCT very economically. Velcade and SCT have shown an ability to reverse some kidney issues. I had high cutoff hemodialysis and do not know if it is available in India. You can find some of the best hospitals in India on this blog post and you can call them to see if they can get your brother into treatment. Good luck and God Bless your families myeloma journey. Gary

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BRIJ NANDAN KUMAR
5/11/2016 09:29:10 pm

My father in law recently in march 2016 received autologous transplant in CMC hospital Vellore. He is 52 and doing well now. Doctors told his rate of recovery was better than average. He was admitted for 21days in can er ward. One evening when he was being given some injections,I put about more than 2 Trays of ice cubes in his mouth one by one in 25min approx... Just after 3rdor 4th day after autologous stem cell transplant ,his plateles count was low for 4to 5 days. And he usually vomitted for 10 days.. But slowly he recovered... He had infection in throat. He used to spit cough quite often. Now he is going office daily in Ranchi . Doctors have called him after months to view the progress.

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Prasanna Tambe
5/26/2016 08:13:22 am

My wife has been diagnosed with multiple myeloma and has undergone Bone marrow transplant at Jaslok hospital Mumbai recently which was covered in Mediclaim insurance. She is on maintenance therapy with lenalidomide & zoledronic acid injection through IV in day care center. I am trying to check if current treatment can be covered in Mediclaim insurance but I am getting negative answer. Can I get mail id of Priya Menon who may guide in this matter.

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Neeraj
6/6/2016 06:19:47 pm

Hi Prasanna,

I am a Mm patient considering Jaslok for Auto SCT, would like to discuss your experience. Could you Pl sent me a mail [email protected] or call me on +918527495309. or share your details I will calcontact you.

Thanks, neeraj

Reply
Dilipkumar Mevada link
7/10/2017 06:27:42 pm

Dear Prassnna
Autologus bone marrow transplant (ABMT) and Autologus stem cell transplant(ASCT) are both same.
If in discharge card doctor and hospital had mentioned ASCT then hour mediclaim will not get sanctioned. It is because of stem cell treatment is for genes and any genetical disorder is not covered by any of the mediclaim provider companies.
So request your doctors to reissue discharge summary with ABMT only and resubmit it.

Since I was made aware by my insurance agent before my transplant in April 2010 for MM and got the claim.

If you need further information please contact me on my cell no. +91 9867338814 or contact on [email protected].
We have also started a NOG called Myeloma friends charitable trust in Mumbai.

Regards
Dilipkumar Mevada

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Vikram
3/29/2018 12:47:31 pm

My father has been diagnosed with multiple myeloma with 52.4% plasma cells... His spine shows partial collapse of D3 VERTEBRA and fracture if the upper endplate of D7 vertebra.

we have started his chemotherapy dose with Velcade. Kindly inform what can be done to cure this.

Neeraj
5/31/2016 11:15:17 am

Hi Prasanna,

I am a Mm patient considering Jaslok for Auto SCT, would like to discuss your experience. Could you Pl sent me a mail [email protected] or call me on +918527495309. or share your details I will calcontact you.

Thanks, nee raj

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Neeraj
5/31/2016 11:25:16 am

Hi Gary,
Nice blog going, would be helpful to a lot of MM patients, thanks

Hi All,

For all those who are asking abt MM specialist, I am myself a MM patient and have gone thought this journey in last 5 months, below is what I can share :-

- DR Sh Advani Mumbai
- Dr Rakes Chopra Gurgaon
- Dr Lalit Kumar Delhi
I am sure there are a lot others in Apolo & Cmc vellore....

Manuel - Dr Rakesh Chopra has dealt with MM cases with Kidney failure case I am personally aware of, you should get in touch with him to start with. Google him & drop a mail . Else visit his hospital in Gurgaon .

Thanks,
Neeraj

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Amit
5/22/2018 01:44:17 am

can you provide me the mail id of Dr Rakes Chopra ?

Thanks.

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Suraj
6/5/2016 03:44:51 am

Sir my father has been diagnosed with mm yesterday ,his age is 53 . And i am totally worried about the right treatment as i am from northeast so I want your precious advice as which would be the best hospital ..tata kolkata or tata mumbai or aiims delhi ...plz advice me
.thanks

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kapil joshi
6/8/2016 07:08:59 pm

suraj you can also reach to "CIVIL HOSPITAL"AHEMDABAD,

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Deepa
6/26/2016 10:25:18 am

Sir, my mother-in-law is diagnosed with Multiple Myeloma. Her Free KAPPA (Light Chain), Serum is 7.9, Free LAMBDA (Light Chain), Serum ratio is 327.2 and Free KAPPA/LAMBDA Ration, Serum is 0.0. Can you please let me know how it can be treated best in Mumbai.

Best Regards,

Deepa Wadhwani
9890593787

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Gary Petersen link
6/26/2016 11:33:51 am

Deepa, I am so sorry to hear about your mother-in=law. I am a patient advocate and not a doctor, but from information in the blog post and what a recent patient posted on the blog, Dr. Sh Advani of the Tata Memorial Center, Mumbai comes up as a myeloma specialist. A myeloma specialist who sees 100 or more myeloma patients a year is what you need for your mother-in-law. If not Dr. Advani, then a trip to Delhi to see Dr Lalit Kumar at AIIM would be a great specialist to see. Good luck and may God bless your families myeloma journey/Gary

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Ankur Agarwal
7/14/2016 12:39:20 pm

Hi Gary, my brother is 35 years and diagnosed with multiple myeloma.His crytenine level was high but now in control.He is going through Chemotherapy with combination of bortezomib. He is under supervision of dr. Isha Kaul from Jaypee Hospital at Noida, India. She is suggesting auto BMT after 3 cycles of 28 days. But it was told that it may come back from 36-60 months. So, I want to take second openion from another good doctor. Please suggest any good doctor in Delhi or noida.

Thanks,
Ankur

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Gary Petersen link
7/15/2016 10:29:32 am

Ankur, a great consult in Deli would be Dr Lalit Kumar Delhi.

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Himanshu
1/21/2018 06:51:20 pm

Hi Ankur

I hope your brother is doing well. My mother has been diagonesd with AL and is also going to start treatment under Dr Isha. My forst impression of her is that she is quite knowledgeable in her field. What has been your experience.

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Rakesh Pal
8/6/2016 10:50:14 am

Sir, My Father(age 58) has diagnosed with multiple myeloma over the 8 months ago, currently doctor giving chemo therapy, is my father can be cured from the same desease please help me.

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Gary Petersen link
8/11/2016 04:17:21 pm

Rajesh, If you go to a myeloma specialist and your father is low risk, 85% of patients then there is a good chance he can live a long life of 10 to 20 years..

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VIKAS SOOD
8/17/2016 02:57:35 am

Hi Gary, My mother is taking treatment at DMRC Ludhiana . Recently she visited me at Vadodara and I have taken a second opinion from Dr. Lohar. He has suggested some test and results are as under :

free Kappa Light Chain @ 1159.63 mg/L
free Lambda Light Chain @ 5.50 mg/L
Ratio @ 210.84
Cretinine : 0.6
Beta 2 Microglobulin @ 5180

She is taking below medicines : Lenome 20 mg 21 days cycle+dexona
m-spike 1.23

Pl suggest should be show her to some other hospital or take some other opinion ...

Regards

Vikas Sood
9099020161

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Gary Petersen link
8/23/2016 02:26:25 pm

Vikas, I am not a doctor, but the treatment seems to be Len dex, which is a treatment used my Mayo for older frail patients. I do not see any FISH or GEP(gene expression profile). This would tell if she is hi or low risk, and the treatment plan would be adjusted based on the risk. A summary of what Mayo recommends is at the web site https://www.msmart.org/about.html A second opinion at one of the hospitals listed in this blog post would be a good idea. If you google search "Dr Lalit Kumar multiple myeloma" you will find he is very active whereas if you do the same thing for "Dr. Lohar multiple myeloma" you find very little. Good luck and may God bless your families myeloma journey.

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Nancy
10/10/2016 09:02:07 am

Thanks Gary and Priya for this blog.
Hello all from India. I am Nancy singh from Delhi. My husband dr M P has been a multiple myeloma patient since 2012. He has relapsed 2nd time since then . I think we in India lack some patient to patient contact ,it certainly helps in coping up in facing the challenge which our dear ones face. Also , in India new drugs like corfizomib or polmidamide and other drugs are not available which leave us with fever options of treatment and have to continue with the old regimen of treatment . Can something be done regarding this. I think we all should have a patient to patient or caregiver interaction.
Thanks
Nancy
[email protected]

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Nihal
10/26/2016 09:01:14 am

Please reply to my query, its very urgent:

My father age 71Y, diagnosed with multiple myeloma stage 3. below is the data of his medical test reports. please suggest what does it indicate
1. Kappa Free Light Chain
(at diagnose): 42.70, after Six chemo cycles: 789; after Ten chemo cycles: 1470
2. Lambda Free light chain
(at diagnose): 11.30, after Six chemo cycles: 10.20; after Ten chemo cycles: 7.74

3. Kappa/Lambda ratio
(at diagnose): 3.8, after Six chemo cycles: 77.35; after Ten chemo cycles: 189

4. Immunoglobulin IgG, Serum: 469 (Current value)
5. Immunoglobulin IgM, Serum: 28 (Current value)
6. Immunoglobulin IgA, Serum: 593 (Current value)

7. Protein Electrophoresis Serum (M-Spike)
(at diagnose): 2.43, after Six chemo cycles: 0.71; after Ten chemo cycles: 0.75

8. CBC/KFT is almost in normal values
9. treatment given so far is dexa, endoxan, bortozemib in 10 cycles

Reply
Gary Petersen link
10/26/2016 09:36:38 am

Nihal, I am not a doctor, just a patient advocate, and this question is best answered by a myeloma specialist. The treatment is called Cybord in the USA, or Cytoxin, Velcade, dex, and has been a standard of care. I will cc a specialist I know and if he can be of assistance he will contact you. A great resource for any patient is the Mayo mSmart guidelines you can find at mSMART.org. Good Luck and may Good Bless your families myeloma journey. Gary

Reply
Nihal
10/27/2016 01:23:59 am

Hi Gary, Thanks very much for the help. I replied on my e-mail. sorry for the delay in my reply.

ramesh chandra shukla link
10/27/2016 09:44:43 pm


I am suffering from mm my financial condition in poor current in going treatment from cmc vellore t.n.

Reply
Shashi Bhushan Pandey
11/20/2016 11:13:12 pm

Sir, my mother in law aged 62 is recently diagnosed for multiple myeloma. Kindly suggest better hosp for treatment. Regards

Reply
Gary Petersen link
11/23/2016 08:24:11 am

Shashi, in the blog post above you will find 7 facilities in India, also some of the comments include some recommendations as well. Neeraj has a comment with some of his recommendations. Good Luck and may God Bless you families myeloma journey. Gary

Reply
Raj Gupta link
1/2/2017 02:30:32 am

Dear Doctor. Please help us. My father suffer Multiple myeloma. According to Tata memorial hospital my father taken 36 keemothreaphy in a year but now they say he is in Advance stage of Cancer. I m so depressed now. I beg to you please help me.

Reply
Gary Petersen link
1/3/2017 02:14:56 pm

Raj, I am not a doctor, but am a patient advocate. My first thought would be to go after a second opinion. You do not state if he has had myeloma for one year or a very long time. You do not say if he has had 36 treatments with the same or many different drug combinations. From your IP address it looks like you are in Lucknow India and if so Dr. Lalit Kumar - All India Institute of Medical Sciences - New Delhi, India is who I would choose first for a second opinion. You can look at mSmart.org to see how he would be treated at Mayo Clinic in the USA, which is an exceptional myeloma center of excellence. Good luck and God Bless you families myeloma journey. Gary

Reply
Milee Agrawal
4/14/2017 02:49:38 am

Hope your father's health is good now. Also feel free to join "The Support group of Indian Patients being run by Yoddhas : https://www.facebook.com/groups/yoddhathewarrior/?ref=group_cover " You can discuss your queries to our oncologists and also help other patients by sharing your experiences.
Thank you

Reply
surendra p
1/10/2017 02:04:03 am

Hi Sir,

My father has taken 4 cycles(16 injections) chemotherapy and taken the biossys test last month. In the test shown 4 % plasma cells, could you please advise how to proceed now.

Thanks & Regards
surendra

Reply
Gary Petersen link
1/11/2017 06:20:19 am

Surendra, So sorry to hear your familiy must deal with myeloma. I think a great first step is to educate yourself about myeloma, and you can make the first step by going to www.myelomasurvival.com and go through the listed blog posts and go to some of the resources at the bottom of the first page. Another excellent source on treatments is the Mayo Clinic recommendations shown at the link www.mSmart.org

You state your father has 4% plasma cells, and normal bone marrow can have up to 5% plasma cells, a person is not considered to have low level smoldering myeloma if the plasma cells are below 10%. What was the level at diagnosis? Mine was 90%. The questions I would have would include.

Is your dad high risk or low risk by FISH test or GEP(gene expression profiling)

What are his light chain test levels, M spike, does he have CRAB symptoms? (High Calcium in the blood, renal problems, anemia, or bone problems)

Given his risk profile(which chromosomes are abnormal if any), what treatment is listed on the mSmart program and is your father getting that treatment?

But most of all make sure he is being seen by a myeloma specialist, because someone who sees 100 myeloma patients a year will live 3 times as long as one who go to a local oncologist. Go to the link http://myelomasurvival.com/myeloma-blog/multiple-myeloma-the-only-answer-until-there-is-a-cure to find out why a specialist is of most importance. Good luck and may God Bless your families myeloma journey.

Reply
Myeloma India
1/12/2017 12:03:42 am

Consensus management of myeloma in India
http://rdcu.be/ogbA

Reply
shabnam negi
2/17/2017 09:52:11 pm

Hi Sir,
My father is 49 yr old and had autologus stem cell transplant at the end of july 2016. I am concerned about recent test which shows kappa light chain and kappa lambda ratio bit high.

kappa light chain 70.80 mg/l
lambda light chain 21.10 mg/l
kappa lambda ratio 3.360
is multiple myeloma active again?

Thanks & Regard,
Shabnam negi

Reply
Gary Petersen link
2/19/2017 07:33:26 pm

Shabnam, You should discuss this with your doctor. I am a myeloma patient advocate and not a doctor, and if your doctor does not provide an adequate answer, I would find a new doctor.

Reply
Sudip
4/2/2017 09:37:48 pm

After One cycle of Chemotherapy, My father presently having all parameters in normal condition. My infection happening frequently. Doctor said survival of 5 years.

Reply
Sanya
4/13/2017 03:30:28 pm

Discuss about your problems with doctors and survivors and help patients with your experience and suggestions. Join https://www.facebook.com/groups/yoddhathewarrior/
Also get yourself added to our whatsapp groups.

Reply
Myeloma India
5/9/2017 08:17:01 am

Daratumumab and generic pomalidomide available in India now

Reply
Virender
11/28/2017 01:54:39 am

There is any substitute of Darzalex (daratumumab) available in india??
Doctor recommended to start a daratumumab doses

Reply
Myeloma India
12/23/2017 07:22:27 am

Not at present. It is a patented drug and unlikely to be available in generic version for few years.

Deepak
5/23/2017 06:37:52 am

What is the cost for daratumumab in india and good private doctor in delhi

Reply
Myeloma India
5/26/2017 10:32:04 am

Daratumumab 400 mg approx INR 63000

Reply
SHYAM
6/19/2017 11:32:20 am

Gary sir
My father is suffered with MM. In initial stage .where in india is best place to cure ?
And also suggest me that if any precautions about his meal.
Mob no. +91 8340673853

Reply
PRABUDDHA
6/19/2017 12:28:12 pm

hi, i am from west bengal, india. recently my mother , age of 56 yrs is suffering from severe spine and neck pain , she can't sleep at night for acute body pain. now after MRI, xray etc , advised by doctor, report showing multiple myeloma. she is now suffering from body pain, fatigues, weakness , anemia, often with high fever, left eye paralysis. could you please give suggestion about place of better treatment or good doctor in kolkata or in India as there is no such good health care center near about my hometown where she can get some relief from this intolerable pain.

Reply
Gary Petersen link
6/30/2017 08:32:57 pm

Praduddha, the list which is presented on this post is the best info I have for India. Also a reader listed the following in the comments.

- DR Sh Advani Mumbai
- Dr Rakes Chopra Gurgaon
- Dr Lalit Kumar Delhi

Good luck and may God Bless your families myeloma journey/Gary

Reply
Mukhtar Seraj
7/13/2017 08:12:22 pm

Hi sir my father is suffering from multiple myeloma relapsed. I am from J&K sir.He is suffering from multiple myeloma from last 4years. Sir i have any sources so that my father will get treated.

Reply
Gary Petersen link
7/25/2017 08:25:11 am

Mukhtar, Sorry to hear about your fathers relapse. Often if he has been off of treatment for some time and the prior treatment was successful, myeloma experts will return to what worked before. If not a good source for the next line of treatment is the mSmart program from Mayo Clinic and you will find it at the link www.mSmart.org. As far as resources in India I have little knowledge of what may be available their. Good luck and may God Bless your families myeloma journey. Gary

Reply
Mukhtar Ahmad Shah
9/21/2017 06:20:01 am

Thanks GARY for providing information...

Myeloma India
7/24/2017 04:54:51 am

Great news for Myeloma patients in India. Besides Pomalidomide & Daratumumab; two other drugs Carfilzomib and Panobinostat also available now.

Reply
Nihal
8/31/2017 03:27:22 am

Dear Gary
My father (Age 72Y) suffering from multiple myeloma. currently he become very weak, not able to eat since 2 month. only few teaspoons of juices etc. he is taking. Current Hemoglobin level is 6.
details are as below. please suggest what we can do now.

Pain in body started in Jan 2016
Multiple Myleoma Diagnosed in: Jun 2016

Treatments:
1. Eleven cycles of chemos using Dexa, Bortezomib, Endoxan (from Jun 2016 to Oct 2016)
2. Eleven cycles of Velcade 2mg + Zoldronate (alongwith Lenangio 25 mg 21/28 days and weekly dexa 20mg) (from Nov 2016 to Jun 2017)
3. Off medication for one month in Jul 17
4. One Injection Daratamub 800 mg + some tabs of Polidomide in Aug 2017


Clinical Tests
1.Bone Marrow
at diagnose(Jun 16): 45% plasma cells
after first set of 11 chemo cycles (Nov 16): 15% plasma cells
after second set of 11 Velcade cycles (Aug 17): 90% plasma cells

2. Serum Free Light chain (mg/L) and M-Band (g/dl). (ref range: Kappa:3.30-19.40,Lambda:5.71-26.30,Kappa/Lambda ratio:0.26-1.65)
at diagnose (Jun 16): Kappa - 42.70, Lambda - 11.30, Kappa/Lambda ratio - 3.779, M-Band 2.43
after Six chemo cycles (Aug 16): Kappa - 791, Lambda - 10.60, Kappa/Lambda ratio - 74.623, M-Band 1.00
after Ten chemo cycles (Oct 16): Kappa - 1470, Lambda - 7.74, Kappa/Lambda ratio - 189.922, M-Band 0.75
after one month of dexa (Dec 16): Kappa - 574.00, Lambda - 6.78, Kappa/Lambda ratio - 84.661, M-Band 0.65
after eight doses of velcade (May 17): Kappa - 351.00, Lambda - 8.61, Kappa/Lambda ratio - 40.767, M-Band 0.35
after One dose of Datatumub and Polimodimide (Aug 17): Kappa - 16.60, Lambda - 4.96, Kappa/Lambda ratio - 3.347, M-Band 3.55

3. Fish Panel (Nov 16): Negative

4. Immunoglobulin Profile, Serum (mg/dl. ref range:IgG:700-1600, IgM:40-230, IgA:70-400)
Oct 16: IgG - 469, IgM - 28, IgA - 593
Dec 16: IgG - 445, IgM - 21, IgA - 383
May 17: IgG - 423, IgM - <20, IgA - 243
Aug 17: IgG - 238, IgM - 24, IgA - 2557

5. Beta 2 Microglobulin, Serum (ng/ml, Ref Range: 609-2366)
Jun 16: 5660
Jun 17: 5152
Aug 17: 6393

Reply
Gary Petersen link
9/2/2017 09:44:56 am

Nihal, I am not a doctor, just a somewhat informed patient advocate. I see he started out with Cybord which was a standard of care in the USA for low risk patients(those with good FISH results), however, now the standard of care for is RVd for low risk patients based on the Mayo mSmart program at the link: www.mSmart.org
The biggest thing I notice is the very low hemoglobin, and when I was at 8 I was given blood to bring it back up. For a male 13 is normal so no wonder he is tired and lethargic, his body is starving for oxygen. Many doctors are now looking at RVdD Revlimid, Velcade, dex, and Daratumumab as the best future first line therapy. I would find a myeloma specialist if you do not already have one to get a second opinion. Best Regards/Gary

Reply
Nihal
9/2/2017 10:10:00 am

Thanks Gary. It would be a great help if you could arrange for the second opinion. I would valso request other viewers who could make a comment on his condition.

Reply
Gary Petersen link
9/3/2017 08:19:57 am

Nihal the web ste for a second opinion at Dana Farber is at the link: http://www.dana-farber.org/Dana-Farber-s-Online-Second-Opinion-Program.aspx. It provides the contact information and I would see if you can obtain the second opinion from Dr Ghobrial, Dr Richardson, or Dr Anderson. The cost is $750, and is not covered by insurance. Best Regards/Gary

Mukhtar
9/8/2017 10:58:58 pm

Sir, i am from J&K.My father is suffering from multiple myeloma relapsed free light chain disease from last 5 years and has been treated two times so for.Now doctors say that your father needs Corfilzomib therapy.But i have no sources of money to treat my father by Corfilzomib. Can anyone help me.Please tell me who is the best oncologist in india for multiple myeloma free light chain disease.

Reply
Gagandeep Singh
6/13/2019 01:42:25 pm

Can you share your email address and mob number?

Reply
Japi
9/30/2017 11:02:54 pm

Hi Gary/Priya,
Daratumumab is available in India for mulitple myeloma. It has been approved by US FDA for patients that have had at least one prior therapy. Where can I find information on whether it can be administered to new diagnosed multiple myeloma patients in India or not?
Best,
J

Reply
Harish Shah
11/6/2017 11:11:42 am

Hello Garry,
Dr. Informed that my Mother 71 years is suffering from MM. She already had fracture in spine bone and bed ridden since last 45 days. Can you guide me best MM specialist at Mumbai, India ?

Reply
Gary Petersen link
11/6/2017 06:34:57 pm

Harish, Dr. S. H. Advani is well known and in Mumbai. Contact info at the link: https://www.jaslokhospital.net/fad.aspx?di=165. Good
luck and God Bless you families myeloma journey/Gary

Reply
DHIRAJ CHHABRA
1/12/2018 10:45:42 am

Hello Sir,

I am from India.My father(age 51) is suffering from Multiple Myeloma(ISS Stage III) and he is getting treatment from Sir Ganga Ram Hospital, New Delhi.
We found the disease on Dec 7, 2017.The Doctor started the treatment on the same day.He's been receiving the combination of few drugs including the Velcade(specifically Bortezomib) since that day.He has been injected with five injections of bortezomib till date(on Dec 7,11,15,18,30).The doctor found out the disease by the bone marrow test.
The disease started showing symptoms a month ago before the disease was found.He was feeling weakness, diarrhea, burning sensation and blockage in urine.As a result, the Kidney function test and complete blood count test were done.Many parameters were out of the range in those tests.And then he was tested with the bone marrow test.
Please give your advice on the treatment.

Reply
Gary Petersen link
1/14/2018 03:15:26 pm

I am not a doctor, just a somewhat informed patient advocate. I see he started out with VD which was used in the USA for low risk patients(those with good FISH results), however, now the standard of care for is RVd for low risk patients based on the Mayo mSmart program at the link: www.mSmart.org with a stem cell transplant and maintenance Rd. If you go to the mSmart.org link you will see what Mayo Clinic in the US would recommend. Many doctors are now looking at RVdD Revlimid, Velcade, dex, and Daratumumab as the best future first line therapy. I would find a myeloma specialist if you do not already have one to get a second opinion. Best Regards/Gary

Reply
DHIRAJ CHHABRA
1/15/2018 02:51:32 am

Yes I need a second opinion.How can I get one?

Gary Petersen link
1/15/2018 10:42:54 am

I had a blog post on how to get a second opinion, but it covers US doctors. That link is: Next Step, How to Get a Second Opinion for Multiple Myeloma Treatment?

Next Step, How to Get a Second Opinion for Multiple Myeloma Treatment?
Now if you agree on getting a second opinion, how do you go about doing it? I did a little checking and know that there can be a wide variation in the cost and time for a second opinion. Much...




In New Delhi, Lalit Kumar, MD - All India Institute of Medical Sciences is an excellent myeloma specialist. His contact information is: Lalit Kumar, Department of Medical Oncology, Room 234, IRCH Building, All India Institute of Medical Sciences, New Delhi 110029, India. Tel (+91)11 2659 3405, Fax (+91) 11 2658 8663. E Mail : [email protected]

Good luck and may God Bless you families myeloma journey/Gary Petersen

Reply
MUKHTAR AHMAD SHAH
1/25/2018 02:05:02 am

Sir, is fish panel important in multiple myeloma.

Reply
Gary Petersen link
2/3/2018 04:53:42 pm

Mukhtar, the FISH panel and GEP(gene expression profiling) is used by many myeloma specialsits to determine what treatment plan they will use. Mayo Clinic, one of the world’s best cancer treatment centers, uses it as the core to there mSmart treatmnent template. You can see this at www.mSmart.org. Good luck and may God Bless your myeloma journey/Gary Petersen

Reply
Swati
2/16/2018 03:02:27 am

My dad has been suffering from mm since 2016 , he is under the treatment of Dr Mammen Chandy, Tata memorial hospital, Kolkata. Dr Chandy is a renowned hematologist from Vellore chennai. Anyone in kolkata needing myeloma treatment can surely refer to him.

Reply
KAARI
2/16/2018 03:42:46 am

Hi Gary, am Kenya Aged 42 with Mm SINCE Aug. 2016, want through 14 cycles of chemo in Delhi at Max Hospiital. i had Cell transplant in Jan. 2017. & after 4month i was at remission.& under botzmib which had much side effect. after 6month i got the relapse, with the fluid in my berry & chest.am now under Pomalidomide 4mg /day.& since i have been having blood transfusion in 1 or 2 months and immune booster. in the last 2week have been experiencing a on and off pain on my left side waist and fullness in the stomach plus lots of gas. Does it mean the disease is worsening? where can i get a second opinion.

KAARI

Reply
Gary Petersen link
2/23/2018 10:11:17 am

KAARI, Pomalyst has many side effects which could be part of what you are experiencing. The following link lists some of them: https://www.themmrf.org/multiple-myeloma-knowledge-center/myeloma-drugs-guide/pomalyst/pomalyst-side-effects/
A bit of a concern to an patient advocate would be the early relapse after SCT, which soften means the cancer may be more aggressive. The FISH test or GEP(gene expresssion profile) should give you a ideal of if you are high or low risk. If high risk a second opinion would be a great idea. If I were in Delhi I would choose Dr. Lalit Kumar from All India Institute of Medical Science (AIIMS). Good luck and God Bliss your myeloma journey/Gary Petersen

Reply
Mukhtar Ahmad Shah
3/19/2018 05:49:45 am

Hello Gary, Sir my father is suffering from Multiple Myeloma with Renal Failure.I am from Kashmir.My father was early treated with Bortezomib+Dexamethasone in march 2014.He was stable for one year(2015).But Myeloma became active in 2016 again, and then he was treated with Bortezomib+Dexamethasone and Thalidomide.He was comfortable again for 9 months in 2016.But in 2017 Multiple Myeloma became active in 2017 again.He was given VAD but not tolerated.Then i bring my father to New Delhi.Dr. Lalit Kumar treated my father there with Lenalidomide and Dexamethasone.But after three cycles my father suffered a worsened Kidney Failure, Creatinine was 9 and Urea was 256.Then Dr. Lalit Kumar cancelled Lenalidomide and Dexamethasone after 3 cycles.Now in 2018 he treated my father again with Bortezomib and Dexamethasone and so far my father has recieved only two injections of Bortezomib.He has weakness and Haemoglobin is very low 5.0.Sir, we are very poor.Sir please give me some advice so that we can treat our father in a best way.And also tell me, What is the life span of Myeloma patient.Sir i am only 17 years of age.
Thanks

Reply
Gary Petersen link
3/19/2018 06:27:58 pm

Mukhtar I am not a doctor, just a somewhat knowledgeable patient advocate. Dr. Lalit Kumar is a myeloma specialist and I have heard good things about him. I had renal failure and my kidney doctor gave me Cytoxin as a drug to help the kidneys. My doctors at Mayo also put me on high cutoff hemodialysis for 5 days to remove the light chains witch were clogging my kidneys. Mayo also put me on Cytoxin, Thalamide and dex, and that combination worked well for me and knocked my disease down a lot. I then went to UAMS where my doctor had research which showed Velcade and stem cell transplants helped to improve kidney function. I went through a kidney modified program of induction with VTd-ACE, two transplants, and consolidation with VTd-ACE. They didn not give me Revlimid because they thought it could hurt what kidney function I had left. After treatment, I was in CR(complete response), and I was able to get off of dialysis. This is what worked for me. You can also look at the treatment template which Mayo Clinic(one of the best in the world) uses for their patients. It includes Daratumumab for the second and third relapse and you can find it at the link www.mSmart.org. Good luck and God Bless your families myeloma journey/Gary Petersen

Reply
Rahul kumar
4/6/2018 08:48:49 am

Sir ,my relative is diagnosed by mm .....he is having treatment in PGI ,Lucknow is it right decision... Plz reply

Reply
Gary Petersen link
4/8/2018 01:39:21 pm

Rahul, I am a myeloma patient advocate, and not a doctor. Recently the IMAGe group was developed in India and a number of centers joined this group to provide a consensus for myeloma treatment in India, One of those locations was PGI, Lucknow, and the person representing them was Dr. Soniya Nityanand, SGPGI, Lucknow. The group provided the following template for treatment in India at the link: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5280871/ At the end of this link is a listing of all of the members of this IMAGe group. These members show look to be the leaders in myeloma treatment in India. Good luck and God Bless your families myeloma journey/Gary Petersen

Reply
Namandeep Singh
11/4/2019 07:52:43 am

Hi Rahul,
My father is also getting treated in SGPGI, Lucknow. Can we connect if do not mind?

[email protected]

Thanks,
Namandeep

Reply
MUKHTAR ULFAT
4/7/2018 08:01:16 pm

Thank you very much Gary for providing this information about MULTIPLE MYELOMA.
Thanks and Regards
MUKHTAR ULFAT

Reply
Manoj Kumar
4/28/2018 04:18:03 am

My mother age 48 is suffering from MM with kidney disease she is on dialysis she was treated with bortezomib & dexa for 2 months but Mm relapse now she is treated with kyprolis now by Dr Nitin Sud in Medanta hospital gurgaon is it a right option

Reply
Bharath Bushan Garapaty
6/29/2018 03:01:49 pm

Hi,

My father got diagnosed with Multiple Myeloma Lambda in July 2017 and the initial induction with velcade became toxic leading to severe LV dysfunction. Then he was on Lenalidomide induction followed by Auto-sct and Lenalidomide maintenance. Within 7months of Transplant he relapsed. -unfortunately very early relapse. Now, Doctor suggested a new regime of daratumumab, pomalidomide and dexa. But we're completely exhausted economically after the Transplant.. Now, daratumumab costs too much. Are there any options like financial assistance for daratumumab in India? Or any affordable rates where we can buy daratumumab.

Reply
Preetika Chandna
11/21/2019 05:25:19 pm

Hi there,

I have received daratumumab or dsrzslex as it is commercially known for 2 years. The drug is provided by Jsnssen in India and costs 1.4 lac per dose. It is highly effective and I recommend you go for it.

Reply
Rahul vats
8/17/2020 10:21:24 am

How many doses are of this injection ma'am....our finicial condition is not good because 8 months ago we had transplant of my mother...in 8 months myeloma replase .

Gary Petersen link
7/1/2018 08:15:46 pm

Bharath, I am no familiar with drug prices in India or in the quality of some of the bio similars. You should google Daratumumab. I did and from Jansen it is $11000 per dose, but there is a bio similar for much less in the $100’s.

Reply
Bharath Bushan Garapaty
7/5/2018 05:46:16 pm

Hi Mr Gary Peterson,

Thank you for the reply. What's the name of the biosimilar?

Reply
Gary Petersen link
8/5/2018 11:01:01 am

Bharath, Looks like it goes by the generic name of Daratumumab. If you Google it you will find the information. Best Regards/Gary

Preetika Chandna
3/16/2020 11:26:30 pm

Hi,
At present, daratumumab costs 1.4 lac per dose. I received treatment with daratumumab for 2 years so I know. As for biosimilars, they are yet to hit the market because the patent period for darzalez is still running.
Best,
Preetika

Reply
Bhagwat Kadam
1/1/2021 08:24:47 pm

Please provide your email ID.i want to know about Bone marrow transplant

Preetika Chandna
1/3/2021 12:20:02 am

My email id is [email protected].

Mukhtar Shah
8/11/2018 09:16:37 pm

Hello dear Gary sir, how long Bortezomib 2 mg maintenance therapy works for Relapsed Multiple Myeloma with Renal failure

Reply
Basu
10/22/2018 12:18:21 am

Dear Gary, my father is MM patient. He was diagnosed in December 2009 with M Band 7.1. The firstline therapy used was cytoxan-thalidomide-dex and achieved complete remission (no M Band and bone marrow plasma cell less than 4%) in 4 months. Then he was put in thalidomide maintenance therapy with 24 cycles of monthly zoledronic acid. He relapsed in Jan 2014 (after 4yrs from diagnosis) and was given Cytoxan-Bortezomib-Dex for 8 months (VGPR M Band 0.4) and then on monthly Bortezomib maintenance. The 2nd relapse occurred in October 2015 and started Lenalidomide(15mg)-Dex. In 4 months achieved complete remission (no M Band) and was put in 5mg Len maintenance. Started showing disease progression after 6 months maintenance and again lenalidomide dosage was increased to 15mg to control progression. He relapsed 3rd time in January 2018, and started taking Pomalid 3mg but couldn't achieve a very good response (lowest M Band 1.6). Now his M band is 2.2 and he's feeling highly fatigued all the time. I'm about to see the Oncologist but wanted to check with you on the viable options left. I m from Kolkata India, and my father is undergoing the treatment here in Kolkata only since diagnosis. Will be greatful to you if you can please help.

Thanks
Basu

Reply
Karan Singh Parihar
11/4/2018 04:39:36 am

Hello sir my father 54 years old .has been diagnosed mm .and getting treatment in AIIMS delhi under the DR.lalit .... so
Is this disease prevention.Might be possible

Reply
Jane Finbow
6/10/2019 07:05:48 am

Thank you for this thread Gary, it is very interesting. As a UK patient dependent on the NHS which doesn't pay for maintenance, I am investigating Indian generic drugs. I'd it known what average survival rates are in India amongst patients who are treated? (Are there PFS & OS survival rates published in countries outside the western world?)

Reply
Lakshmi Nair
9/1/2019 05:57:43 pm

My husband 59 years old has been diagnosed with MM 2 months ago. We live in New Zealand, so managed to get in to a research trial. Carfilzomib, Dex and Cyclophosphamide of 5 cycles, followed by ASCT and consolidation. Even though he is in stage 1 as per ISS, because of high risk cytogenetics t(14:16) he should be stage 2 as per R-ISS. I know that only 4% of MM patients worldwide have this translocation, so would like to know if anyone else in this forum has it or knows someone

Reply
Gary Petersen link
9/12/2019 05:27:37 pm

Lakshmi, you may what to join the myeloma Health Tree where they have a history of all the patients who participate and you will be able to view other patients with the same genetic abnormalities. The link is: https://www.healthtree.org/
Good Luck and God Bless your families myeloma journey/Gary

Reply
Arnab Das
9/6/2019 10:42:06 am

Hi,my father is suffering from multiple myeloma and he is in stage 3, diagnosed yesterday.I brought my father from Kolkata to Manipal, Bangalore but financially it's impossible to do the full course of chemotherapy here and his condition is also not so good to travel back to Kolkata as he can't be able to sit for a 2 hours.My mother also had come and she is taking care of him but she is already mentally and physically weak.It's hard to see both of my parents.I don't know what to do.I can't do anything.

Reply
Gary Petersen link
9/12/2019 05:08:27 pm

Arnab, other than what I have written on this blog post, I do not have any more knowledge about treatment options in India, nor the finatial help which can be obtained there. Sorry I can not be more helpful. Gary

Reply
GOPAL SHARMA
10/14/2019 12:43:47 am

Dear All,
My mother age 70 had been diagnosed with MM can any one suggest suitable doctor in Ahmedabad

Gary Petersen link
10/20/2019 06:47:33 pm

Gopal, I have no direct knowledge, but Dr. Sandeep Shah, GCRI, Ahmedabad. Was noted as a contributor in the rolling major publication. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5280871/#!po=79.5455

Reply
Preetika
11/5/2019 08:22:00 am

Hi Gary,

I am an MM patient. I had an autologous stem cell transplant 2 years back followed by 2 years of daratumumab maintenance. Just letting you know that daratumumab is highly effective even in refractory cases such as mine. P.S. thalidomide, birtexomib,,cyclophosphamide and doxil did not work for me !

Regards,
Dr. Preetika Chandna

Reply
Sne
6/29/2020 04:56:49 am

Dr. Preethika,
My dad 65 years of age (extremely active business man) was diagnosed with MM in Feb. He's on bortezomib lenalidomide and dexamethasone. We have two weeks to decide about going ahead with ASCT.
Could you please share your transplant experience - where did you get the transplant? how was isolation? How tolerable were the side effects? How many months does it take to recover and be active again?
How necessary is ASCT in your opinion - because remission is not guaranteed anyway!

Thank you
Sne

Reply
Rahul vats
8/17/2020 10:18:17 am

Hi sne ,there is lots of problems after going bone marrow transplant .we have also going to transplant of my mother in October 2019.after that approximately in 6 months she get recovered by transplant ...bt in August 2020 she has again relapse myeloma..now dr said she has only 6 months of her life .

Reena
11/21/2019 09:55:08 am

Gary,
I am researching the options for my husband, we live in USA and diagnosed for 2 years. He is on a study, so the drug cost is covered at present. We have commercial insurance and he has qualified for medicare now. Unfortunately I am not able to find out how much the treatment will cost us once he is off the study. Could you please give me some pointers in this regard. Thank you in advance.

Reply
Preetika Chandna
3/16/2020 11:21:28 pm

Hi, I am a MM patient. which drugs are you talking about? I can provide the cost of treatment because I have undergone treatment with many drugs so far in India.
Best,
Preetika

Reply
Gary Petersen link
11/22/2019 01:34:04 pm

Read both of the attached and you should have all costs covered!
http://myelomasurvival.com/myeloma-blog/how-to-pay-for-your-myeloma-treatment-part-2-you-have-private-insurance-or-no-insurance

http://myelomasurvival.com/myeloma-blog/how-to-pay-for-your-myeloma-treatment

Good Luck and God Bless your families myeloma journey/Gary

Reply
Arpit Kapdi
1/17/2020 05:23:38 pm

Hi Gary,

My father is recently diagnosed with MM along with Tuberculosis. Below are the parameters at diagnosis:

1. M-band - 2.38
2. 15% plasma cells in bone marrow
3. 1q amplification and 13q deletion - High Risk (FISH test)
4. bone lesion 11th rib (left side)
5. Haemoglobin and calcium levels in control
6. Creatinine - 1.44

I wanted your advice regarding the complications that could arise as a result of TB and high-risk cytogenetics in MM. Also, can stem cell transplantation work for high-risk patients?

It would great if you could advice us on the same.

Thank you

Reply
Ajai
4/23/2020 08:28:24 am

Preetika Chandana,
Ma.am, Can I have your mail address please? I am Colonel Ajai Singh Dabas. My father has been diagnosed with IgG lambda MM Two months back.
My contact is
. 9418080530 (whatsApp)
. [email protected]
Thank you

Reply
Preetika
4/24/2020 07:04:01 pm

Please check your mail for a reply.

Best,

Preetika

Reply
Akhilesh Kumar link
5/17/2020 12:26:28 am

Please talk to me about best doctor in Lucknow of multiple myeloma treatment

Reply
Vidhi Yadav
10/10/2020 02:57:24 pm

Hello Akhilesh,

I am also looking for a multiple myeloma specialist in Lucknow for my mother. Can I please have you email id?

Thank you,
Vidhi

Reply
Gary Petersern link
5/20/2020 06:56:17 pm

A number of myeloma specialsits in India put together a Consensus paper on myeloma treatment in India. The link is https://www.readcube.com/articles/10.1007%2Fs12288-016-0773-9?author_access_token=XRdVMjsEKlxPEf0ZNZwlDfe4RwlQNchNByi7wbcMAY5DEgQa8B4Xdf7cDCr0PD7-Q2gUfwkhUhne6SfLUgZMvPfOEAGyu0nq9c0RobVqxh_-s_uH9jsd4vsQKOSQiDmbEVyZDYQl62Y8rNa0phHvXA==

One of the doctors listed was A.K.Tripathi, KGMU, Lucknow.

Best Regards/Gary

Reply
Sne ki
6/29/2020 04:49:21 am

Hello Gary and Priya,
First, thank you for doing this and
Dear Gary,
My dad aged 65 was diagnosed with low risk multiple myeloma in Feb after a T7 compression fracture. He underwent kyphoplasty for the same due to extreme pain. After the surgery, he was started on chemotherapy with bortezomib, lenalidomide and dexamethasone. Due to the risk of covid-19 transmission, injection bortezomib was discontinued for one month in April. It has been restarted now. The repeat electrophoresis test results show positive outcomes - he has responded well to the chemo.
The doc recommended stem cell transplant for consolidation. Lenalidomide has been replaced with thalidomide for this purpose. We have another 2 weeks to make our decision. As a family, we are not ready to see him go through isolation and side effects of transplant especially during these covid 19 times. He's very active socially and single handedly manages to run his 40 year old business (his first child). So, he's anxious about the few months of recovery period that stem cell transplant will require.

Our questions are - how important is stem cell transplant (as remission is not guaranteed anyway)? Are there any patients who opted out of transplant and is doing well without a relapse? Also, how tough is the transplant on the patient?

Thank you!

Reply
Preetika link
7/2/2020 03:10:51 am

Hi Sne,
I have undergone a stem cell transplant for myeloma. A stem cell transplant is as hard on the patient as his attitude, the complete isolation and serious side effects do take a toll but are tolerable if you stay distracted and connected to family. Of course, the COVID problem creates a further risk factor. Ultimately, things may go well or they may go south unexpectedly,but stem cell transplant does offer many concrete benefits.
Regards,
Preetika

Reply
Taji
8/9/2020 12:22:26 pm

Hi Gary, My father aged 64 has been diagnosed with MM , 5 months back. Came to know when is shoulder got fractured in an accident. Went for MRI, PET SCAN, Mprotien & Bone marrow. Post which he has went under VRD + daratumumab . After 4 cycles Mprotien is NIL & bone marrow is less than 1%. But due to covid doctor is not suggesting to go for ASCT & rather is recommending to carry on this cycle for 12- 18 months. Just need to know. Has any one got similar suggestion or Should I take another advice.

Reply
Preetika Chandna
8/10/2020 10:30:28 am

Hi Taji,

Daratumumab is a highly targeted antibody and is highly effective for MM. I received it for 2 years. In light hitting f the Covid situation, it seems best to avoid asct for now.
Regards,
Preetika

Reply
Sunil
9/7/2020 09:24:53 pm

My father is under treatment with Darzalex. We taken all treatment from AIMS delhi even from dr lalit also.For sure he is a good doc in case of Mm.But problem is they are giving date once month.Even in between something happen it is impossible to get opinion from AIMS.My father condition become worse due to this resaon.Cancer medicines are very costly.Bortezombie injection MRP is around 16k and actual whole sale price is only 1500 inr.What is feel is it is big racket of looting poor peoples.Current situation we are taking Darzalex for my father same price as mentioned earlier blog.We tried every where but first they are asking patient name and doc name and after that they say same price.I think these medicines mafia have their commision set with doc also.And we are suffery all this.This is the situation in india....

Reply
Rahul Gupta
10/1/2021 11:55:42 am

The reason is dara gener is not yet available anywhere .....like len and kyprolis

Reply
Arun Yadav
1/29/2021 04:11:19 am

hello sir,my mom is sufferring from multiple myleoma so i want to know the asct price off all good hospital like tata memorial,aiims,jaslok hospital.please tell me as soon as possible.

Reply
RAGA
9/30/2021 03:22:27 pm

Hi,

Can you also let us know the cost for NINLARO(IXAZOMIB), CARFILZOMIB, KRYPROLIS, DARA for an 80 KGS person in INDIA as they are the next line of treatment ....

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