Changes Are Coming !!!! Need Input - Page 2

Lolly · 01-29-2007, 09:32 PM

THANKS JOE!!! I'll print some out to take in this week when I go for Herceptin

<3 Lolly

Catherine · 01-29-2007, 10:37 PM

All of your ideas are wonderful. Joe and everyone: Thank you for sharing your time and expertise. I do not know enough about computers to make a suggestion. I am very thankful to have been directed to this site by Tricia Keegan from the Komen site. I really did not understand HER2 until I got here.

Let's keep on Truckin....now that shows my age.
Catherine in Oregon

MCS · 01-29-2007, 10:43 PM

Joe,

Tell Christine that you are hot stuff!!! and we are so thankful for your talent and effort.

I think its' great to have someone to explain the medical jargon, a nurse maybe.

Also some data base of herceptin symptoms, similar to the personal database of the members would be useful. also post herceptin treatment side effects would be great- this is really the unknown, right!

Aslo is we could have data on the age, dx etc and be able to download or sort by category so that I could know ladies in my profile.

we are so spoiled having you... and blessed too

You go Christine!!!!

thank you

Maria ( mcs)

rinaina · 01-30-2007, 04:42 PM

I was surprised that my onc nurses and onc had not heard of this site. I had copied one of the threads about a specific topic to bring to them but now this pamphlet will shed more light on the forum. I will bring it to them this Thursday...time for another herceptin treatment. Thanks Joe.

Angela · 01-30-2007, 06:44 PM

Thanks so much for all ya'll do. This site has been a blessing for me for the past 3 years.

The only suggestion I have is I would love to see a page where prayer requests can be posted and viewed. If they were all together it would be easier when I have my prayer time to remember everyone's individual request. Just a thought.

Thanks again for this wonderful site!

01-30-2007, 07:02 PM

Dear Joe, <o></o>

It’s a wonderful site with lots of great features but since you ask.  <o></o>

Some standardized forms with respect to diagnosis, treatment, reactions to treatments, etc. could be helpful. I’m thinking of the thread started by Lani with respect to herceptin side effects and the possible benefit in organizing such information into a report format to insure that the information can be easily collected and used. For example, the often-cited side effect of blurry vision with herceptin might be sent to the drug company for its review. It would be great to have some standardized forms for members to fill out (only if they wish) so that the site has a record of the different types of HER2 cancers associated with its members (someone already mentioned this). Such reports, although not controlled as in a clinical trial, would make the website more difficult to manage but over time the information might be very helpful to its members. <o></o>

A section on alternative and natural products might be helpful as well. I’m looking right now at the various herbs and vitamins I’m taking, including ground flax seed, olive leaf, Vitamin E, Evening Primrose Oil, all specifically for HER2, and lots others besides.

I was struck in reading through a large number of threads how much useful information is here that is not available anywhere else. Of course, the emotional support provided by the site should still remain its main purpose.
 <o></o>
But whatever you do, I’m very grateful that the site is here. It’s helped me a lot.

 <o></o>

chrislmelb · 01-30-2007, 11:50 PM

and very easy to use. All i can say is SPELL CHECK, please.
Christine

Chelee · 01-31-2007, 02:13 AM

I am pleased to hear you are going to have a medical resident student on board. That will be a major plus for many of us. As a few mentioned I too would like a spell check. After chemo, my brain sometimes doesn't work. lol

Also I do believe someone mentioned some how making it easy for us to find other women that have a DX that is similar to ours. That would be nice if there is an easy way to do that?

Thanks so much for all the hard work you and Christine put into this board for all us women. I swear I was never given any hope when I was DX at the place I am going too...had I not found this board I don't know where I would be right now. I've learned nothing from the cancer center I go too...everything I've learned has been from this board and the wonderful women here. Thank YOU BOTH so much for all the hard work you've put into this for all of us. There are no words that can truly thank you enough.

Chelee

tricia keegan · 01-31-2007, 02:28 PM

joe thats great news and personally having someone to interpret and explain some of the abstracts and complex articles will be a Godsend for me as I find the subjects really interesting but often just can't follow it!

Thanks a million for a brilliant site and so much support.
Tricia

Debra · 01-31-2007, 05:53 PM

Joe and others -

I have to say, being fairly new to this site, I can't really think of any changes so I will leave that up to those that have been around for awhile!
I do want to say that I really feel this site has become my "lifeline". The information is accurate and the people posting and replying are "top-notch" in my book. I wish I would have came to this site sooner right after diagnosis but I was so "scared" of learning something I didn't want to! I have since learned that is not the case and just want to thank everyone out there for your great posts! So my input is this, do whatever changes you feel necessary, but don't ever do away with this site!!!

Sherryg683 · 01-31-2007, 06:31 PM

AWESOME! I love this site!!..sherryg683

R.B. · 02-01-2007, 02:18 AM

Congratulations on your acheivement and HUGE respect for all the hard work that must have gone into securing funding organising etc.

YOU REALLY HAVE ACHEIVED SOMETHING WORTHWHILE

A series of sub threads titles please. For example Diet - Supplements - curcumin
so when I post a thread I can also put it under sub headings which would make it easier when referring to previous posts - eg look under omega three.

And maybe a wikipedia style summary post with key facts for that thread that sat at the top of the subject as a header.

Things would still be accessible through the search engine but there would be some more permenant background.

RB

Kimberly Lewis · 02-01-2007, 02:10 PM

Perhaps a place where we could post face-to-face support groups we attend so others could join. Or a local get togethers for people to organize? I don't know how to say it - just that it looks like fun to meet people in real life that we chat with regularly when you post pics from the big meetings you go to. It would make me happy I know... not that I don't have a life, but more that I don't have any friends with BC.