Singapore, I want to do whatever I can for my dad
 

This is Alvin, me and my family live in Singapore.

My dad will be 70 come Nov this year. I just came to know exactly his sickness what is MDS since 2010, he kept it a secret until last year,

His symptom become apparent since last year.
Situation got worsen this year, and he has had several blood transfusion already and latest last week when he experiences high fever,
it was virus inflection, god bless with antibiotics situation is stable now.

Given his age and (heart by-pass 10 years ago) the doctor we consulted in the hospital say he cannot do much for him other than continue with the blood transfusion to keep him alive and maintain high hygiene is Key.

Of course we were all very sad to see him getting weaker and weaker as time went by and he no longer have the strength to walk since June.

I make the decision instead of just allowing the situation to take its naturally course, I want to do whatever I can do to cure or at the very least a few more good year that he can be with his 2 children and grand children. Me, my mum and my sis love him too much to let him go now.

What can I do....
I hope to find strength and advise here....

Thanks

alvinlee332211,

I'm sorry to hear about your dad's state of health.

The Singapore public health system is well-respected, but MDS is a rare disease, so to find out more about what can be done for your dad, you might have to seek out specialists who understand the disease.

Even without knowing more about MDS yourself, you could try to arrange a consultation with the doctors in Singapore who have the most experience with bone marrow failure diseases, if you can identify them. According to the MDS Foundation, Dr. Aloysius Y. Ho at Singapore General Hospital is one such expert.

You can also help your dad by learning more about MDS, so you can ask the right questions. I suggest finding out what MDS "subtype" your dad has, and getting a copy of his blood test results to see which blood counts are low, and how low. You might also try to find out what his bone marrow "blast count" is, since that's one measure of risk.

Once you have information like the above, it might become clear whether your dad is eligible for drug treatment. Asking for treatment recommendations is one of the primary reasons to get a second opinion.

Make sure you talk to your dad about all of this, and that he knows you are there to support him. He may have strong opinions about the kind of care he receives, but chances are that you'll be better able to gather information than he will.

Dear Neil

Thank you for the invaluable advice.
I shall proceed to explore as per your suggestion ASAP and shall post the progress in the forum to be informed and for support

Yours sincerely
Alvin

Dear Neil and all,
At the end of my wits, since September when the report was out dad was found to be @ immediate II.
The only options available according to Dr Ho, here in SGH SINGAPORE. Aside from the blood transfusion which he needs every 2 weeks now. It will be azacitidine which Dr Ho recommend 7 cycle at 4 week interval. Each cycle is $10K.
That is beyond our financial means and it only stand at 40% success rate.
He is too fragile for a HSCTWHICH is even beyond our means.

Any one or group that I can still reached out to share? Or
Perhaps even someone reading this forums from Singapore/Malaysia?

I have had call to the local University Hospital....there maybe clinical trials but so far to no avail as in my dad eligibility.
Tried Traditional Chinese medicine...did not help and these treatment seems only for supportive care.

Again, I really hope someone here I can reached out......we have too much love for our dad which is 70 years old. To give up

Alvin

Hi - Sorry you and your father are having such a hard time.

Have you tried contacting Celgene - the manufacturer of Vidaza? Their website has a patient support page and makes reference to a free drug program - perhaps they will be able to provide the medication for free or reduced costs.

http://www.celgene.com/patients/celg...tient-support/

Good luck and Best wishes,
Paul

70 is not old. Your father would normally have many years ahead. You are doing the right thing trying to find out what you can do to help him. God bless and guide you.

Dear Paul, Cheryl & all,

You must take very good care of yourself too.
In this difficult times, all of us need all the support we can get....
God bless and never give up.

I do the same for dad, and is trying with Celgene and hope there is some response and help for some needy folks over here is Asia.

Any more thinkers ? appreciate and thanks
Alvin

Generic azacitidine/Decitabine
 

In India, we have the generic form of Vidaza, azacitidine, which is at a very much lower cost. You can try to import the medicine from India. It's manufactured by a company called Intas. Decitabine, known as Dacogen, a drug similar to Vidaza is also available here in its generic version.

All the best for your Dad!!

Vidaza is azacitidine, azacitidine is Vidaza. I don't believe there is a "generic" form. It costs the same whether called Vidaza or azacitidine. Sometimes there are special discounts presented by Celgene that produces the product. I (my insurance)pay about $2,500 per dose for seven days in a row.

Generic forms
 

Bailie,

In India, many medicines are available in generic form and therefore at far lower prices than their international counterparts. Vidaza is brand name for Azacitidine manufactured by Celegne. You can google Azacitidine and Decitabine in India, you will find relevant information. It may be of no use to you, but people in Singapore can have access to these drugs available in India.
azacitidine was launched in India only about a year back, prior to that Decitabine was the only option. I don't have first hand information but I believe a cycle of azacitidine is about $1000. It's still very high cost for us in India.
My mother continues to be on transfusions, but I try to keep myself updated of whatever treatment possibilities exist, if and when needed. We have no clinical trials happening in India for any MDS related drugs.
Wish you good health.

You are correct. Sandoz-Novartis is producing the generic version of Vidaza.

http://www.specialtypharmajournal.co...ogy&Itemid=556

Generic Azacitidine now approved in Singapore
 

Dear Friends,

Generic Azacitidine is now approved in Singapore. Please check with your doctor for them. They are as effective as Vidaza. They are approved by Health Sciences Authority (HSA), Singapore. This will reduce the total cost of treatment by 1/2.

But it looks like doctors have reluctance to use Generic versions in Singapore, for non-obvious reasons.

I asked this questions before to my father’s haematology doctor at One of Singapore Hospitals and the Dr said better not to use the Generic Medicine on this disease because this Generic Medicine there is no Study Case that can Prove the Medicine is working.

The generic Azacitidine worked for me.
My insurance pays for generic only.
I was diagnosed MDS at age 65 in September 2017 with bone marrow blast 15 to 20%, hemoglobin 5.6. My doc put me on generic Azacitidine immediately. I finished sixth/last cycle early March 2018. Both my doc and I are surprised my remission came so quickly. Have been transfusion free for six months. My energy level is pre MDS.

That's good to know, Diana. Thanks for posting it. I'll be 65 at the end of Dec and I'm sure whatever medicare drug coverage I end up with will only pay for generic drugs.