Info: Dont know if this has been posted or not

Has anyone visited the site: www.oncologystat.com?

I am by no means promoting it, however, it seems like a lot of good information and updates can be received from there. Its an oncology site and all the latest updates are "revealed"

I joined it today. How I heard of it, is my friend who has NHL got an update and received info that the drug trial she was in had just been found out to have been detrimental. Fortunately she got the info to tell her primary doctor. etc.etc.

I know there are alot of facilities, centers, groups out there but I wonder why nobody says these words:
" Ok...you have just been dx, this is what you need to do and this is what you need to know, so you can advocate for yourself."

First on "my list" (mom dx ext . sclc Sept 9, 2009) would be this.

1) Get second opinion
2) Pull sample to go to testing (lab ie..rational theraputics etc)
3) Get consultation for radiofrequency ablation; radioembolization or selective internal radiation therapy;
4) join Inspire.com :) , oncologystat.com, lung cancer association, other recommended websites for info/updates (are there others besides that oncology one?)
5) monitor blood markers (do they do this for small cell? my moms dr. said they dont)
6)keep daily journal of all medicines and appointments (my mom's last ct appointment wasnt scheduled and we had to wait three extra days to get it done as the dr office dropped the ball, it took me doing it.)
7)Make sure, confirm that patient is aware of the cancer society etc and services that are available to them. (mom tried driving her self home from chemo and had to wait for family to come rescue her. family was working and mom had to wait for them to pick her up...point is...the cancer center right there, would have taken her home.)
8) Contact your Dr. re: diet and vitamins before taking new/other diets. There is alot on the internet and not all supplements are good for all types of cancer. ( i think a good start would be no sugars...no whites etc..) Consult your physician!
9) List of recommended books that have the most information of what to expect from chemo, pamphlets to give to family members etc...
10) Financial advisor information to include; ssi/ssa, fmla,retirements, job information, mortgage reduction information ( with all the new mortgage bills out there are programs to reduce mortgage payments.) http://makinghomeaffordable.gov/ Also, check all the non profit organizations in " the area".

Also, when someone goes into the hospital, the hospital has a social worker that is available to help with all of this. There seems to be a need for the "social worker" type person with this list etc in the general community. Someone to call the patient each week or help advocate medical info between the dr and the patient. Maybe its out there and I dont know it since I am not going to the dr appts etc.

Whew! I feel better for posting that. This is all information that I have been piecing together.

I almost forgot. For dehydration; is anyone taking Demeclocycline to help keep the sodium levels up? Her sodium levels have been super low and I had found the info on the internet. I dont know if it is widely known or not. However...my mom was trying to make me feel better by saying that "I found the medicine and the dr. and everyone else at the center are now using it" sniff..sniff...If only I could do that much good! I think she was just trying to make me feel better since I am far away. All I can do is research.

Anyways...if any of the items in my list are wrong, off base, anyone wanting to add to them etc please feel free and maybe we can come up with a master list.

Thoughts and Prayers to everyone.

L