After ASCO 6/2011,this is what I will do as a patient.
- This topic has 7 replies, 5 voices, and was last updated 13 years, 6 months ago by
.
-
Posts
-
Hi,Susan,
Thanks for your compliment.
The truth is,I have no choice,I am a patient and I do want to live if He allows me to do so.
All the things I do here on this board are not as demanding and emotional exhausted as for the all the caregivers who take care of their love ones like you before;knowing that the odd are slim in finding a cure or prolonging the life of your love ones.But all of you have to try your best to be a secretary,a cheer leader,a dietician, a driver,a nurse and doctor besides handling your daily responsibilities, working full time or being a mom or husband,or son and daughters.
It is very difficulty to keep calm while deep down in your hearts ,all of you are suffering and many are beyond tears.,By the way I am sorry for the loss of your husband.Susan.
But one thing I can say to all of you is that ,as a patient,no matter how tough some of us may appeared and how unappreciated we may be in front of the caregivers at times; deep down in our HEARTS,we appreciated beyond words that the courage and endurance that our caregivers have in caring for us.
God bless.Percy…a big thanks for your hard work. NCI sponsored tissue repository banks have been established for (I believe) all major cancers. When tissue (including blood) is retrieved the patient has lost the rights of ownership. The institution becomes the rightful owner of the sample. Due to various reasons it is the general rule for the institution to basically hold on to it for its own research rather than sharing it with researchers nationwide and beyond. In order to further research anyone having good cause and credentials should be able to access this tissue. Now, this is a broad statement because various guidelines must be in place and of course, a scientific oversight has to be in place.
I am a strong believer that in order to find cures for diseases researchers must have the opportunity to obtain research material. It should not be unobtainable to them. The present system hinders just that. But, things are about to change.
All my best wishes,
MarionHi,Marion,
I think NCI should develop the guideline as soon as possible to catch up the needs of the patients.
The following is what I found after reading Lesley info.
I called
1. M.D. Anderson molecular diagnostic pathology lab.(1-713-794-4780 or you can fax them at 1-713-794-4773 or email to clewing@mdanderson.org).
2. Mayo clinic molecular genetics laboratory at 1-800-533-1710;international 507-266-5700 ;they are on call 24/7.
3.Massachusetts General Pathology services(which include diagnostic molecular pathology) 1-617-726-2967 ;fax#617-726-7474.I talked to all of them including their supervisors;(again,this is a very common and good practice to go the top to get the info. provided you ask them nicely;just politely ask them to transfer you to talk to their supervisor of the department head.
-The result- No body can suggested a time frame for the slides using for testing.Besides molecular pathology, there are also metabolite and enzyme assays available from Mayo in case you need them but they are expensive.for example KRAS mutation costs 1247. and EGFR mutation panel costs 2300 compare to the one I got from the ASCO 2011 conference From China,the whole colorectal panel is 900 and the lung panel,which included EGFR mutation costs about 1100. Of course the quality and the insurance reimbursement are other matters you have to consider too.
The following web site will provide additional info. with regard to tissue sample
and blood sample specimen requirements from one hospital.http://www.mdanderson.org/…/core-facilities-and-services/molecular-diagnostics-lab/how-to-submit-a-sample/
and then go to the top left hand corner type in how to submit a tissue sample;then click the first item on the next screen and it will show you the info.God bless
May I add that method and procedure guidelines are being established by the NCI within this year. This will assure for the tissue samples to be handled appropriately making it eligible for futher studies. The question then becomes as to where you will store your tissue and who will conduct the research on said sample. Presently, the NCI has established Tissue Repository Banks however, HCC and CC are not included. This is something we are looking into.
All my best wishes,
MarionPCL-
I had molecular testing done. Apparently the tissue samples sent were not sensitive to any of the standard chemo drugs.
The testing cannot give results for all chemo drugs as it works only on certain proteins (so I was told).
I gave the report to my Onc. and he glanced at it and returned it to me.
Didn’t even enter it into my chart.What I am about to write is of the utmost importance.***********
The tumor bloc/specimen MUST be fresh. You must INSIST prior to surgery
that the tumor bloc NOT be frozen until a good size portion is kept separate and untreated.It seems to be standard procedure to ‘treat/freeze’ the specimen automatically as soon as possible and I was not given a choice in the matter.
Consequently, the opportunity for very precise testings was forfeit.Lesley
Hi,
From what I learn so far from the ASCO 2011 conference as a PATIENT,I will make sure and remember where (which hospital) I got my biopsy or resection done ;so that I can retrieve my tissue sample from the FFPE -the slide from the pathology lab that make my CC diagnosis-.This will be very useful for future biomarkers assay to improve the treatment outcome if needed.
(most hospitals in U.S. will keep your FFPE for 5-10 years. ) ;AS far as I know,only M.D.Anderson and Massachusetts General will automatic perform this kind of test for cancer patients.
There are a lot of companies will perform the tests for you if your doctors requested for you.The diagnostic companies will do all the work for you but you have to know where your FFPE were.Most of the time the laboratory in your hospital will coordinate the whole thing for you because some of tests may require serum or blood samples instead of tissue from the FFPE slide.Inostics from Hamburg,Germany;Surexam from Guangzhou,China;Panagene from Daeieon,Korea;Quest diagnostics and bioTheranostics in US to name a few.
If the insurance companies won’t pay for it; Most of them will accept your private payment.I check with one company just for info.A colorectal cancer biomarkers Assay which included TYMS mRNA,ERCC1mRNA.VEGFR1 mRNA, VEGFR2mRNA, KRAS mutation,BRAF mutation,P13K mutation and UGT1A1 SNP costs under 900 U.S. dollars. The tests will tell you whether you will be resistant to platium-based chemo or sensitive to Avastin/sorafenib/cetuximab/irinotecan and 5FU.
Of course,the quality of each lab which perform the tests will be different and require careful selection; but the future of personalized medicine is already here and as patients, we should prepare accordingly to increase the odds of our survival now.
Please read the article”ASCO 2011-the challenge and progress of the genomic eara” provided by our Gavin under the” web site forum ” on this CC web site.
- The forum ‘General Discussion’ is closed to new topics and replies.