I had my last chemo on November 15 2011.
I was down from DX of 8.9 M spike and 80% marrow to 0.1 M spike and 2%. On December 15th 2011 I was still at 0.1 M spike. IGA was 350
Due to lack of funds my transplant has been pushed back many times. I was tested on January 31st and my marrow was still under 5% (they would not tell me what % exactly, they said "Anything under 5% we just say under 5%). So I am not sure if it has risen from 2% or is still 2%. Kind of frustrating. My M spike has risen to 0.76. Which made me sad. My IGA is now 1100.
I now have to go back on at least 6 weeks of chemo to clean back up before they will do the transplant.
What worries me is how fast my numbers jumped up after only a few months off chemo. My Marrow biopsy was only 2% yet the numbers, in my opinion, jumped up very quickly for the small amount of cancer in my marrow. This scares me.
Anywho, as to the question on Curcumin. I currently use 665mg 95% and was taking 2 morning, 2 afternoon, 2 evening. I have picked up some Doctors Best Best Curcumin C3 Complex with BioPerine 500mg which is supposed to help with absorption. So now I am taking 2/2/2 of the Dr's Best and 1/1/1 of the normal curcumin for a total of 3 pills 3 times a day.
Chris
Forums
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
Hey Chris
Forgive my ignorance. Are you saying that you take over 4000 mg of Curcumin per day? I just want to be sure I am understanding properly. So, if so am I under dosing at 1000 mg per day?
Thanks
Art
Forgive my ignorance. Are you saying that you take over 4000 mg of Curcumin per day? I just want to be sure I am understanding properly. So, if so am I under dosing at 1000 mg per day?
Thanks
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
Believe it or not, the recommended dosing by Dr. Aggarwal (at the Department of Experimental Therapeutics at MD Anderson), who is probably the leading researcher in the use of curcumin to treat cancer, is eight (8) grams a day -- a lot more than the typical dose. While Aggarwal suggests 2 gms 4X a day, I take 4 gms in the morning and 4 gms before bed (better on an empty stomach according to Aggarwal).
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Dan D
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
I take 6 500mg of Dr Best Curcumin and 3 665mg so 5000MG per day or 5 grams.
-Chris
-Chris
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
Re: the curcumin - my husband is taking 8 - 12 grams daily, per his doctor at MD Anderson. He was taking about 4 grams to start with, then the doc said it wasn't nearly enough. He started taking that much in December. It's a lot, but he spaces it out throughout the day.
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Jenn - Name: Jenn
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September 2011
- Age at diagnosis: 45
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
Jenn wrote:
> Re: the curcumin - my husband is taking 8 - 12 grams daily, per his doctor
> at MD Anderson. He was taking about 4 grams to start with, then the doc
> said it wasn't nearly enough. He started taking that much in December.
> It's a lot, but he spaces it out throughout the day.
Yeah, that gets expensive quick. Cheaper than chemo but not cheap. I may start to ramp mine up as well.
-Chris
> Re: the curcumin - my husband is taking 8 - 12 grams daily, per his doctor
> at MD Anderson. He was taking about 4 grams to start with, then the doc
> said it wasn't nearly enough. He started taking that much in December.
> It's a lot, but he spaces it out throughout the day.
Yeah, that gets expensive quick. Cheaper than chemo but not cheap. I may start to ramp mine up as well.
-Chris
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
I'm a 65 year old male that has been fighting multiple myeloma since 2009. I'm currently in remission and next month(March) will be my 2 year anniversary since my SCT. I consider myself very lucky so far, and my doctors feel the same way about my progress since my SCT. I've been on 5mg of Revlimid as maintenance since, and my numbers have been very good.
I really did not post this message to talk about myself, but I figured I should start this post with a little information about myself before getting to the point of my post. I keep reading that the average age that people are when they develop multiple myeloma is 65 years old. That puts me in the ball park range.
What really bothers me is that so many people with multiple myeloma that post or reply to someone elses post are in their 40's. For a disease that's considered rare, and pretty much a disease many people get when in their 60's, it's very sad to see so many younger people developing multiple myeloma when they are in their 40's. That's way too young and it's a lot for these youngsters to go through.
God bless these brave people, that in spite of their early development of multiple myeloma, find the time to share information with the rest of us, I have yet to read a post by any of these younger multiple myeloma patients feeling sorry for themselves. I have yet to read any post by an multiple myeloma patient in their 40's asking "why me".
I know that there has been much progress in the treatment of multiple myeloma in the last 10 years, but there is still a long way to go for a cure. I pray for all of these multiple myeloma patients that really got a tough break. I hope that new and better treatments are not far away, or perhaps maybe even a cure to spare the multiple myeloma patients that I really call kids, can be spared the experience that they will be going through while their doctors try what ever they can to extend their lives.
Although the average lifespan has been increasing with the use of many of the drugs being used today, The treatments are taking so much away from the quality of life.
God bless all of you brave souls. Keep the faith ! Somewhere out there right now there is a very bright bunch of future doctors, that will soon find the answer, that will put an end to all this pain and suffering.
JP
I really did not post this message to talk about myself, but I figured I should start this post with a little information about myself before getting to the point of my post. I keep reading that the average age that people are when they develop multiple myeloma is 65 years old. That puts me in the ball park range.
What really bothers me is that so many people with multiple myeloma that post or reply to someone elses post are in their 40's. For a disease that's considered rare, and pretty much a disease many people get when in their 60's, it's very sad to see so many younger people developing multiple myeloma when they are in their 40's. That's way too young and it's a lot for these youngsters to go through.
God bless these brave people, that in spite of their early development of multiple myeloma, find the time to share information with the rest of us, I have yet to read a post by any of these younger multiple myeloma patients feeling sorry for themselves. I have yet to read any post by an multiple myeloma patient in their 40's asking "why me".
I know that there has been much progress in the treatment of multiple myeloma in the last 10 years, but there is still a long way to go for a cure. I pray for all of these multiple myeloma patients that really got a tough break. I hope that new and better treatments are not far away, or perhaps maybe even a cure to spare the multiple myeloma patients that I really call kids, can be spared the experience that they will be going through while their doctors try what ever they can to extend their lives.
Although the average lifespan has been increasing with the use of many of the drugs being used today, The treatments are taking so much away from the quality of life.
God bless all of you brave souls. Keep the faith ! Somewhere out there right now there is a very bright bunch of future doctors, that will soon find the answer, that will put an end to all this pain and suffering.
JP
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John Pampillonia
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
I meant to add this to my other post. I have not seen a post by Pat Killingworth in a long time. Has anyone heard from him ? Does anyone know how he is doing ? I know he had some unforseen issues after, and before his SCT.
I pray he is alright. I miss his posts. Could he be posting somewhere else ?
Anyone out there with any information about Pat, please let us know. I feel like I know him my whole life and yet I think I only posted to him 1 or 2 times. I did always read his posts and not seeing anything posted by him for the past few months is not like Pat.
Would love to hear he is doing fine wherever he is.
JP
I pray he is alright. I miss his posts. Could he be posting somewhere else ?
Anyone out there with any information about Pat, please let us know. I feel like I know him my whole life and yet I think I only posted to him 1 or 2 times. I did always read his posts and not seeing anything posted by him for the past few months is not like Pat.
Would love to hear he is doing fine wherever he is.
JP
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John Pampillonia
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
Hi John,
No need to worry ... Pat is still going strong. He switched late last year to a monthly schedule for his column here at The Beacon. You can find all his columns here:
https://myelomabeacon.org/author/pat-killingsworth/
Pat also posts updates about how he is doing on his myeloma-related site,
http://multiplemyelomablog.blogspot.com/
No need to worry ... Pat is still going strong. He switched late last year to a monthly schedule for his column here at The Beacon. You can find all his columns here:
https://myelomabeacon.org/author/pat-killingsworth/
Pat also posts updates about how he is doing on his myeloma-related site,
http://multiplemyelomablog.blogspot.com/
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