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Clinical Trials Considering or participating in research studies

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  #1  
Old Wed May 1, 2013, 09:54 PM
Janice M. Janice M. is offline
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Curcumin/Gingerol Clinical Trial for MDS

There is a clinical trial being conducted at UMass Medical Center for low risk MDS patients.

Here is the link:
http://www.umassmed.edu/hema_oncolog...dgingerol.aspx

I just got back from my annual appointment with my MDS specialist in Toronto, Canada. Good news is that I remain stable so watch and wait continues! My doctor will refer me for this clinical trial but I will have to go there to participate. So, is anyone aware of this clinical trial or actually participating in it.
Does anyone know the particulars if I am accepted into the trial if I am a Canadian......

Thanks,
Janice
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Female, age 52 - Diagnosed May, 2011 Hypoplastic MDS. Cytogenetics showing 2 abnormalities on chromosome 15. Blasts<5%, IPSS of 1. All blood counts low, but no treatment; watch and wait. Registered for MUD; on Feb. 23/12 two donor matches found but returned since not needed yet!
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  #2  
Old Fri May 3, 2013, 04:11 PM
Birgitta-A Birgitta-A is offline
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Curcumin and Gingerol

Hi Janice,
I don't think anybody should participate in a trial, that not is listed in clin trials gov. I can't find this study there though there are many studies on curcumin.

2008 dr Raza reported about a similar study. Here are the results.
http://www.aacrmeetingabstracts.org/...l_Meeting/5528

Good that your counts are holding!
Kind regards
Birgitta-A
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  #3  
Old Fri May 3, 2013, 10:37 PM
Janice M. Janice M. is offline
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Curcumin/Gingerol Trial

Hello Brigitta-A,

I am an avid reader of Marrowforums but I have not yet required any treatment. As a result, I am unaware of certain aspects of this disease.
My husband just happened to see this clinical trial which is similar to the one you posted in your reply. I am not aware of how clinical trials are sanctioned, if I am even stating that correctly.

This trial is a great fit for me since it is designed for low risk MDS and it doesn't have toxic side effects. I am really interested in participating because I am hoping to stop any potential progression of my disease and alieveate the need for a BMT. I am interested in finding out if anyone knows of or is participating in this clinical trial. My MDS specialist is recommending me for this study. So, since I am Canadian, does anyone have knowledge of how a trial works in the US for a Canadian?

Thanks,

Janice
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Female, age 52 - Diagnosed May, 2011 Hypoplastic MDS. Cytogenetics showing 2 abnormalities on chromosome 15. Blasts<5%, IPSS of 1. All blood counts low, but no treatment; watch and wait. Registered for MUD; on Feb. 23/12 two donor matches found but returned since not needed yet!
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  #4  
Old Sat May 4, 2013, 06:19 AM
Birgitta-A Birgitta-A is offline
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Curcumin and gingerol

Hi Janice,
Curcumin seems to have many positive effects for cancer patients and is evaluated in more trials every year. As you wrote none of the drugs seem to have toxic effects. Curcumin is an iron chelator and that is often positive for MDS patients. Then it can decrease blood clotting but that is no problem for you if your platelets are OK.

You could contact the clinic and ask for info: http://www.umassmed.edu/Content.aspx?id=78804#clinical

Many patients take curcumin and/or gingerol without participating in a trial. Remember to choose curcumin combined with black pepper since that drug will have better effect.

Good luck!
Kind regards
Birgitta-A
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  #5  
Old Sat May 4, 2013, 10:32 PM
Janice M. Janice M. is offline
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Hi Birgitta-A,

Thanks for your sharing your wealth of knowledge.
My platelets are low at around 50 - 60, so I do experience bruising and so decreasing clotting further is not a good idea for me. I appreciate the contact information you have given me. Currently, I think I will wait to see if they contact me after they receive my information from my Doctor.

I will make further decisions after their contact. I may reach out to you again if I am not a candidate for this trial but would like to try curcumin on my own.

Thanks,
Janice
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Female, age 52 - Diagnosed May, 2011 Hypoplastic MDS. Cytogenetics showing 2 abnormalities on chromosome 15. Blasts<5%, IPSS of 1. All blood counts low, but no treatment; watch and wait. Registered for MUD; on Feb. 23/12 two donor matches found but returned since not needed yet!
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  #6  
Old Mon May 6, 2013, 01:42 PM
Lbrown Lbrown is offline
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Hi Janice,

I'm in Canada too.

I think curcumin is a weak immune stimulant, it activates the VDR (vitamin D receptor) which then regulates a lot of other genes. I am taking olmesartan which is a stronger VDR activator, so I've been told.

I would be interested in their theory about curcumin - is it the VDR that they are trying to target with it? Also the gingerol. I think you'd have to take pretty whopping large doses of curcumin.

You could try searching google or pubmed for curcumin + VDR agonist

Deb
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  #7  
Old Mon May 6, 2013, 04:12 PM
Birgitta-A Birgitta-A is offline
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Curcumin

Hi Deb,
Curcumin seems to be a drug that has a lot of effects. For MDS patients these two effects are important - it is supposed to be DNA hypomethylating like Vidaza and a histone deacetylase inhibitor (HDAC inhibitor) like Vorinostat.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3572185/
"A variety of molecular mechanisms have been proposed to mediate these effects, and other groups have reported that curcumin acts as a scavenger of free radicals, an inhibitor of NF-κB nuclear translocation, and a modulator of histone deacetylase (HDAC) and histone acetyltransferase (HAT) ......curcumin and its analogs may inhibit enzymatic activity of DNA methyltransferase."
Kind regards
Birgitta-A
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  #8  
Old Mon May 6, 2013, 11:05 PM
Janice M. Janice M. is offline
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Hi Deb and Birgitta,

I don't feel I know enough to answer your questions Deb. If you get the chance, please read over the clinical trial in my first post. I believe the curcumin and gingerol are given at very high doses through capsules given 4 times a day. I think it has more benefits than just being a VDR stimulant.

Birgitta, I am not knowledgeable enough to understand all the information you wrote about. Your quote does summarize some of the benefits of curcumin as outlined in the clinical trial I mentioned. Gingerol in high doses has an added benefit when used in conjunction with curcumin, according to the trial results thus far, in reducing the progression of the disease.

When I read the clinical trial I thought; I am stable but this protocol is non toxic so why not give it a try in order to prolong the need for further medication or even a BMT. Unfortunately my doctor would not follow the protocol outlined by UMass Medical so I am being referred. How easy is that if I live in Canada!

Your input is greatly appreciated.

Thanks,

Janice
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Female, age 52 - Diagnosed May, 2011 Hypoplastic MDS. Cytogenetics showing 2 abnormalities on chromosome 15. Blasts<5%, IPSS of 1. All blood counts low, but no treatment; watch and wait. Registered for MUD; on Feb. 23/12 two donor matches found but returned since not needed yet!
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  #9  
Old Tue May 7, 2013, 01:25 PM
Lbrown Lbrown is offline
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Hi Janice,

Why don't you call up UMass and ask them directly? Maybe you don't need a doctor's referral. My understanding of trials done at NIH was you just had to apply to the trial, but I may be wrong.

And yeah the other option is for you to do your own trial.

A Canadian study out of Montreal showed the VDR was responsible for affecting at least 913 human genes, including the innate immune system and many cancer genes.

Interesting stuff, let us know what you decide to do.

Deb
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  #10  
Old Wed May 8, 2013, 12:02 PM
tom30 tom30 is offline
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For what it is worth, I had asked my doctor about a similar trial about 3 years ago. At the time he had tentatively diagnosed me with early MDS now he leaning towards an unknown autoimmune issue. Anyway I asked him about the trial - his response was something like - Why would you want to do a trial when it could make your condition worse. I was going to call the doctor who was handling the trial but never did I looked at my old posts and it was a Azra Raza she pops up in MDS news from time to time in reference to trials with Turmeric and curcumin. I had bought a bottle of capsules but wound up tossing them after the expiration date.
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Tom- 59 yrs old, dx-eosinophilic fasciitis 2004, 1 yr prednisone resolves EF- now low counts, HGB has been ok... EF has been associated with MDS along with AA.
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  #11  
Old Wed May 8, 2013, 10:39 PM
Janice M. Janice M. is offline
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Hi Deb,

My thought was to give my doctor a few weeks to make the inital contact on my behalf and then if I don't hear anything then I will call them myself.

With the doctor making the referral I was hoping my medical information could be sent to UMass so they could determine if I am a candidate for this clinical trial and even perhaps reduce any of the tests prior to the trial that they might require.

Tom, since these drugs are non-toxic I am much more interested in participating because I don't believe it will cause my untreated condition to worsen. It is certainly a question to discuss before getting involved.

I am a high school teacher so I was hoping to be involved in this clinical trial over the summer when I have more free time.

If anyone else has any further information, I would still appreciate hearing about it. I will keep everyone updated if I end up participating in this trial.

Thanks,

Janice
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Female, age 52 - Diagnosed May, 2011 Hypoplastic MDS. Cytogenetics showing 2 abnormalities on chromosome 15. Blasts<5%, IPSS of 1. All blood counts low, but no treatment; watch and wait. Registered for MUD; on Feb. 23/12 two donor matches found but returned since not needed yet!
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  #12  
Old Wed May 8, 2013, 11:12 PM
Chirley Chirley is offline
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Hi Janice, can I ask what your chromosome 15 abnormality is? I have a deletion on chromosome 15 too and I was told that they had not seen it before associated with MDS.

I have seen some chromosome 15 deletions associated with AML but they were quite distal q deletions.

Regards

Chirley
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  #13  
Old Fri May 10, 2013, 10:45 PM
Janice M. Janice M. is offline
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Hi Chirley,

I have two abnormalities; it is translocation involving chromosome 15, as well as monosomy of chromosome 15. My bone marrow showed marked hyoplasia with cellularity being judged to be about 10%. My blasts are less than 5%.

Janice
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Female, age 52 - Diagnosed May, 2011 Hypoplastic MDS. Cytogenetics showing 2 abnormalities on chromosome 15. Blasts<5%, IPSS of 1. All blood counts low, but no treatment; watch and wait. Registered for MUD; on Feb. 23/12 two donor matches found but returned since not needed yet!
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  #14  
Old Mon May 13, 2013, 11:03 AM
lfeinsmith lfeinsmith is offline
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Dr Raza

Quote:
Originally Posted by tom30 View Post
For what it is worth, I had asked my doctor about a similar trial about 3 years ago. At the time he had tentatively diagnosed me with early MDS now he leaning towards an unknown autoimmune issue. Anyway I asked him about the trial - his response was something like - Why would you want to do a trial when it could make your condition worse. I was going to call the doctor who was handling the trial but never did I looked at my old posts and it was a Azra Raza she pops up in MDS news from time to time in reference to trials with Turmeric and curcumin. I had bought a bottle of capsules but wound up tossing them after the expiration date.
Yes she is doing some studies on alternative rx as all of you noted .She is currently at columbia Presbyterian in nyc
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