CML DNA Research
Posted 30 September 2011 - 03:29 PM
I sent my "spit" in yesterday! Can't decide if I want to know my predisposition to a couple thousand other diseases and syndromes, though; CML is quite enough, thank you.
I mentioned on that discussion board that my local onc asked me to take part in a data study sponsored by BMS. This will be done world-wide with 200 sites for data collection. The data is collected for 5 years beginning with the first TKI, what ever it may have been. So, I only have about 2.25 years to go in this study.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 30 September 2011 - 03:36 PM
Although I am personally neutral about this, folks should understand that this is a company that makes money by providing personal DNA and genome analysis for a fee. This is not a clinical trial, and has no government sponsorship. It also requires participants to provide quite a lot of personal information to the company, along with some spit. I am sure the company will use the study data to enhance its DNA analysis processes, but it is unclear whether the data will be shared with researchers, whether free or at a cost. Not that I oppose this -- just wanted to point out some info.
Here is review written about the company's services by a paying customer:
Posted 30 September 2011 - 03:54 PM
I thought this would be a good idea for me as I am already a patient at Stanford Hospital where this research will be taking place.
I think others should think about participating in this as well but that's just my opinion
Posted 03 October 2011 - 08:35 AM
I checked it out and figured "what the heck" so I signed up to have them send me a kit.
Posted 03 October 2011 - 01:20 PM
Although it is a pay service, if you have CML, they will give you a free membership in return for your spit. I wouldn't call it a trial or necessarily even a study, but they are doing a project for people with Myeloproliferative disorders and that is why we get the free kit. As with anything, read the fine print about how they can use your data. Like anything else you are sharing your personal data with these people so make sure it is something you want to do.
In the altruistic sense, the project should collect data about people with diseases like CML and maybe turn up something useful that could be used towards a cure or ealry detection or prevention. In reality it will likely just end up being data the company can sell to researchers.
Posted 13 October 2011 - 11:57 PM
Just got my results back and I can say I'm delighted with my DNA
But I already knew that...
I will be sharing the higher increase risk results with my MD.
Posted 20 October 2011 - 06:41 AM
Can anyone tell me what is the abreviation for blast cells? I'm asking because I'm having some results here but I cannot see any blast cells. Or is it a sepparate test?
Posted 20 October 2011 - 08:29 AM
Blast cells means immature white blood cell or basophils, it won't die off when reaches it time. Normally white blood cells will die off call apotosis process when it time is reach. Normally one could use a microscope to differentiate these immature cells compared to the matured cells. The % of immature cells compared to the matured cells is % of blast cells. If CML progress to advance stage will be > 5%. In a normal person, the % of immature cells is < 1%.
Posted 20 October 2011 - 08:36 AM
The question is, should I look for a specific abreviation or notation or something? Because I can see nowhere something related to "blast" or "immature" or so on.
Posted 20 October 2011 - 09:00 AM
No abbreviation. Otherwise, sorry to say, VC's explanation is pretty bad, so I would ignore it.
Posted 20 October 2011 - 09:00 AM
Pls check above link for explaination. The below is one of the cut out from the dictionary
Blast cells are immature precursors of either lymphocytes (lymphoblasts), or granulocytes (myeloblasts). They do not normally appear in peripheral blood. When they do, they can be recognized by their large size, and primitive nuclei (ie the nuclei contain nucleoli), as in the picture. When present in the blood, they often signify ACUTE LEUKEMIA. This particular case demonstrates the presence of an Auer Rod, which is pathognomonic for Acute Myeloid Leukemia. Otherwise, special stains and surface marker techniques are needed to identify the lineage of the cells.
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users