Confused between treatment & medication therapy

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Offline Pratik

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Confused between treatment & medication therapy
« on: September 15, 2017, 10:35:39 AM »
Hi Andy,

As you know I was talking Dr. Ramanan's treatment since past 3 months. All was going well before I slipped into comma 3 times and got from a near death experience.

I believe the real culprit was thalidomide. I suspect it lowers my blood sugar at night. It's for example 400 mg/dl at night and around 3 AM puts me into hypoglycemia, somethings even comma.

Not sure what to do. Any other medicines I can try? Ramanan sir gave other boy different medicines to try so I'll ask him when I visit Pune next in October.

He is saying to go for BMT but isn't my age already passed for it? I'l 23 already. It can be fatal isn't it?

Can someone die in BMT? Wouldn't if it won't work it'll just reject it and turn into failure?

Looking for responses. Please help. :whyme
Every child is special.

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Offline Pratik

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Re: Confused between treatment & medication therapy
« Reply #1 on: September 17, 2017, 07:26:29 AM »
Hi Andy,

As you know I was talking Dr. Ramanan's treatment since past 3 months. All was going well before I slipped into comma 3 times and got from a near death experience.

I believe the real culprit was thalidomide. I suspect it lowers my blood sugar at night. It's for example 400 mg/dl at night and around 3 AM puts me into hypoglycemia, somethings even comma.

Not sure what to do. Any other medicines I can try? Ramanan sir gave other boy different medicines to try so I'll ask him when I visit Pune next in October.

He is saying to go for BMT but isn't my age already passed for it? I'l 23 already. It can be fatal isn't it?

Can someone die in BMT? Wouldn't if it won't work it'll just reject it and turn into failure?

Looking for responses. Please help. :whyme
someone please reply
Every child is special.

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Offline Parin

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Re: Confused between treatment & medication therapy
« Reply #2 on: September 18, 2017, 05:26:01 PM »
Pratik, I feel only doctors  or expert in this filed can answer your question as these are techinical questions. Here in USA doctor told me in next 2-3 years there would be more options for Thalassemia Patients.

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Offline zahra

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Re: Confused between treatment & medication therapy
« Reply #3 on: September 19, 2017, 06:28:19 PM »
Hi Pratik,

I'm sorry to hear you havent been well. My son recently had a bone marrow transplant and I asked his doctor some of the same questions which I am sharing with you.

I had read about some people saving their own bone marrow in case of transplant failure but my sons doctor was not in favour of it .
He said that because they are using reduced intensity conditioning if the transplant fails ( meaning donor marrow doesn't engraft ) then the patients own marrow grows back. This means in case of failure you would go back to being a thalassemia major patient.

I also specifically asked him about age for transplant. he said at Johns Hopkins they transplant upto 23 years age patients in pediatrics and after that age it can still be done ut in the adults section. Again the reason they are more confident with older patients is the reduced intensity conditioning.

I must mention here that they are doing haploidentical transplants so finding a donor isnt an issue. All parents and offspring and most siblings are at least half matched ( haplo ).

Another treatment I know of is of cassemia which I had started for my son but didnt complete as things for transplant worked out.
I dont know anyone who completed the course or who it worked for personally but I think it is worth a shot.

If you wish to follow this I can provide you the email of our transplant doctor or address from where to order cassemia.

Wishing you the best of health.



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Offline Pratik

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Re: Confused between treatment & medication therapy
« Reply #4 on: September 21, 2017, 03:31:19 AM »
Thanks I would love to order that.
Every child is special.

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Offline zahra

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Offline Pratik

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Re: Confused between treatment & medication therapy
« Reply #6 on: September 21, 2017, 06:10:05 PM »
I'd love that.
Every child is special.

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Offline Andy Battaglia

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Re: Confused between treatment & medication therapy
« Reply #7 on: September 23, 2017, 06:52:58 PM »
Some doctors will do BMT for older patients. David Levy was 33 when he had his BMT. Do you have a matching sibling?

I also advise waiting to see what the announcement about stem cells is that will be coming at the TIF conference. I believe it may relate to using one's own stem cells for BMT. It is supposed to be a major announcement two months from now.

And yes, you are right. Hypoglycemia and hyperglycemia are both possible side effects of thalidomide.
Andy

All we are saying is give thals a chance.

 

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