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Re: How necessary is a stem cell transplant?
Good luck and best wishes for your transplant, Dean! Hope you're comfortable through the process and that it works well.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: How necessary is a stem cell transplant?
Thanks, Mike, for your kind words.
Regards, Dean.
Regards, Dean.
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
Re: How necessary is a stem cell transplant?
Hello Dean:
First, bet of luck on your transplant, I hope you "skate" through it.
Secondly, you raise a very interesting point, I thought I would comment on with respect to your doctors comments that the drug approval in the UK is a year or two behind, but their survival statistics are comparable, and they tend to use more transplant to make up for the drugs that are not yet available in the UK.
I think that is a very insightful comment, and I have heard versions of the conversation before. I would like to point out that the survival statistics are by necessity backward looking. The group in the US that publishes that data is the NIH, in a database called SEER:
http://seer.cancer.gov/statfacts/html/mulmy.html
The last update was Nov 2015, for 2014 data. The median overall survival (which of course includes the older and frail patients) is about 5 years, and for sure somewhat longer for younger transplant eligible patients (that is not broken out). So the data is for newly diagnosed patients in the 2008 to 2010 timeframe. At that time, there was no significant gap in the drugs between the US and the UK. In the past about 3 years or so, there has been somewhat better drugs available in the use for the newly diagnosed setting, and the "salvage" setting. I believe that down the road, the data will probably reflect that gap, but maybe not for another at least two to three years.
If a gap opens up in the US data over other countries (as I suspect it will), the only way that it would continue would be for pace of new drug approvals in the US to continue. I was looking to see what new drugs we would get in 2016, after 5 in 2015, however, we have not seen any, but there has been work on "rolling out" those recently approved drugs.
Again, good luck in your transplant.
First, bet of luck on your transplant, I hope you "skate" through it.
Secondly, you raise a very interesting point, I thought I would comment on with respect to your doctors comments that the drug approval in the UK is a year or two behind, but their survival statistics are comparable, and they tend to use more transplant to make up for the drugs that are not yet available in the UK.
I think that is a very insightful comment, and I have heard versions of the conversation before. I would like to point out that the survival statistics are by necessity backward looking. The group in the US that publishes that data is the NIH, in a database called SEER:
http://seer.cancer.gov/statfacts/html/mulmy.html
The last update was Nov 2015, for 2014 data. The median overall survival (which of course includes the older and frail patients) is about 5 years, and for sure somewhat longer for younger transplant eligible patients (that is not broken out). So the data is for newly diagnosed patients in the 2008 to 2010 timeframe. At that time, there was no significant gap in the drugs between the US and the UK. In the past about 3 years or so, there has been somewhat better drugs available in the use for the newly diagnosed setting, and the "salvage" setting. I believe that down the road, the data will probably reflect that gap, but maybe not for another at least two to three years.
If a gap opens up in the US data over other countries (as I suspect it will), the only way that it would continue would be for pace of new drug approvals in the US to continue. I was looking to see what new drugs we would get in 2016, after 5 in 2015, however, we have not seen any, but there has been work on "rolling out" those recently approved drugs.
Again, good luck in your transplant.
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JPC - Name: JPC
Re: How necessary is a stem cell transplant?
Hi Dean,
Just want to say I am thinking of you. Best wishes for you with lots of positive energy. I have been following your post since you joined here. I wish you be home in a very good condition for Christmas with your girls, hanging there, this too shall pass.
Just want to say I am thinking of you. Best wishes for you with lots of positive energy. I have been following your post since you joined here. I wish you be home in a very good condition for Christmas with your girls, hanging there, this too shall pass.
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Mojbahar - Name: M
- Who do you know with myeloma?: Self mgus
- When were you/they diagnosed?: Jully 2016
- Age at diagnosis: 48
Re: How necessary is a stem cell transplant?
Hi Dean,
Best wishes for a smooth and successful auto transplant experience. When you're up to it, please keep us posted on how things are going for you.
Mike
Best wishes for a smooth and successful auto transplant experience. When you're up to it, please keep us posted on how things are going for you.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: How necessary is a stem cell transplant?
Thank you Mo and Mike.
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Will definitely keep you all updated. I got my Hickmanl line fitted but was then sent home due to no beds available. Not the news I wanted. I have to play every day by ear, which is a nightmare, as it could be tomorrow or next week.
Regards, Dean
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Will definitely keep you all updated. I got my Hickmanl line fitted but was then sent home due to no beds available. Not the news I wanted. I have to play every day by ear, which is a nightmare, as it could be tomorrow or next week.
Regards, Dean
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Dean UK - Name: Dean
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: April 2016
- Age at diagnosis: 41
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