HER2 Support Group Forums - View Single Post - Hermove website

Chelee · 10-04-2008, 12:45 AM

I was reluctant to reply to Joe's post about this website when I first ran across it. But now that Debbie was nice enough to open the door I'll jump right in. (Isn't that real big of me Debbie.) I'm ducking now and laying low...

I will say it is nicely put together and easy to navigate...but I've went there twice now to make sure I didn't miss anything and at present I do not feel any need to go back there. Maybe that is because I'm spoiled with the Her2support board. All the information you get on the Her2move site you get here and then some.

Now maybe if I was just dx and ran across the site it would be more interesting to me? I think some of the links there are very helpful...especially the one that sends them to the her2support board. But there is really nothing there that I can see would make me go back? Even the personal stories from the women on there I was disappointed that they didn't give more details about their dx. When I was first DX with her2...I wanted to find other women with my stage, er & pr status...& if they had neg or positive nodes? That was, & still is important to me. Their stories leave everything out.

And in all fairness to them it's new & it takes time to create a good website. It doesn't happen overnight. I think they need to narrow their focus on a few things verse's trying to cover too much ground.

For instance...we all love the her2support board and I know for me personally the message board, forums, articles of interest & cancer news it what brings me back. Plus I know if anything comes up I can pretty much find it on this site. I can't think of anything I can't get from this site that would make me check in on their site at present. (Not trying to be negative...but it's just the truth.) Plus a major factor is most of us are limited on our computer time so have to choose wisely. I can cover alot of ground right here.
So if the Her2move wants to stand out they are going to have to have something that draws you back...and I'm not sure what that would be? Once someone finds the her2support board I can't see what the draw would be to go back there? This board literally covers everything her2. The time I do have is spent is mainly here. They just need a little more time to center in on something that will make them unique. I will say it's set-up and design is very nice. Easy on the eyes and not cluttered up like so many websites I've ran across. Right now I think a newly dx women might find some interest there...but us old timers will be found here.

Chelee

10-04-2008, 12:45 AM	#4
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	I was reluctant to reply to Joe's post about this website when I first ran across it. But now that Debbie was nice enough to open the door I'll jump right in. (Isn't that real big of me Debbie.) I'm ducking now and laying low... I will say it is nicely put together and easy to navigate...but I've went there twice now to make sure I didn't miss anything and at present I do not feel any need to go back there. Maybe that is because I'm spoiled with the Her2support board. All the information you get on the Her2move site you get here and then some. Now maybe if I was just dx and ran across the site it would be more interesting to me? I think some of the links there are very helpful...especially the one that sends them to the her2support board. But there is really nothing there that I can see would make me go back? Even the personal stories from the women on there I was disappointed that they didn't give more details about their dx. When I was first DX with her2...I wanted to find other women with my stage, er & pr status...& if they had neg or positive nodes? That was, & still is important to me. Their stories leave everything out. And in all fairness to them it's new & it takes time to create a good website. It doesn't happen overnight. I think they need to narrow their focus on a few things verse's trying to cover too much ground. For instance...we all love the her2support board and I know for me personally the message board, forums, articles of interest & cancer news it what brings me back. Plus I know if anything comes up I can pretty much find it on this site. I can't think of anything I can't get from this site that would make me check in on their site at present. (Not trying to be negative...but it's just the truth.) Plus a major factor is most of us are limited on our computer time so have to choose wisely. I can cover alot of ground right here. So if the Her2move wants to stand out they are going to have to have something that draws you back...and I'm not sure what that would be? Once someone finds the her2support board I can't see what the draw would be to go back there? This board literally covers everything her2. The time I do have is spent is mainly here. They just need a little more time to center in on something that will make them unique. I will say it's set-up and design is very nice. Easy on the eyes and not cluttered up like so many websites I've ran across. Right now I think a newly dx women might find some interest there...but us old timers will be found here. Chelee __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options.