Hermove website - Comments

[Joe]

Have you visited www.hermove.com (http://www.hermove.com) website yet? I am curious if any one has any comments. Our group spent considerable time working with GSK in designing this site to fill the needs of breast cancer survivors.

Don't know if you noticed but there is little advertising.



Regards
Joe

[caya]

Hi Joe,

I was one of the the members of our group involved in the site design. I did take a quick look at it last night, and I think they have a done a good job. As you say, there is not a lot of advertising, and the focus there is really on lifestyle, moving forward etc. I will definitely go back and fill in some of the surveys etc.

all the best
caya

[dlaxague]

Hi Joe and all,

Okay, I looked around. It's simple and pretty and nicely done, as far as it goes. But I'm not sure there's much there to keep people coming back, if that's their intent.

Encouraging a healthy lifestyle is certainly a good goal. I'm just not sure that I see a need for such a broad effort - they try to go beyond the "moving" piece and end up spreading themselves kind of thin. For example, there's already a community here, and stories here. There are many other sites to get information about HER2neu+ breast cancer (again, here is one of them). I think that if they focused just on lifestyle changes, with something new each week (exercise, centering, and diet), they might get more interest.

I do think that their intro to lifestyle changes is a good start. Now maybe they could feature weekly "special updates" with a short story of someone who found support from, for example, yoga - and then they could offer links to more information about yoga (books, websites, classes, etc). And the next week, focus on journaling. Etc. That might keep people coming back.

I didn't read everything on the site but this paragraph bothered me:

"<HER2neu+> tumors are faster growing, more aggressive and less sensitive to chemotherapy and hormone therapy."

I don't think that HER2neu+ cancers are exactly less sensitive to chemotherapy although I guess that might depend in part upon the definition of sensitive. I'm sure what they mean is that it's more likely (than some ERPR+ HER2- cancers) to return after the same adjuvant treatment (or was, before Herceptin and Tykerb) but that's not necessarily because chemo worked better for less aggressive cancers. It just seems a little misleading and unnecessarily scary for newcomers. Plus, after that scary statement, they don't even MENTION the existence of Herceptin and Tykerb. In their PDF of questions to ask your doctor (which is well done), they encourage questions about treatment options, one of them being "is there an oral treatment available?". Hmm, I wonder what they're getting at ...

"A normal breast cell might have 20,000 HER2 receptors, whereas a breast cancer cell could have as many as 1.5 million."

Ah, that explains Dennis Slamon's preference for saying "HER2 normal" rather than "HER2 negative". I had not heard that explained so clearly.

Anyway, it's not all bad. They have a comprehensive page of links to more information. I think that a link page to financial assistance (and not just to pay for Tykerb but for all possible assistance including transportation which is becoming a large issue) would be helpful.

Bottom line from me is that I think that there is an overwhelming array of places on the internet to get breast cancer information and if they keep their focus too broad, they are going to be just one more site. I think that they could best carve out a niche if they narrow it a little and offer interesting and inspiring content about lifestyle. But that of course would not be limited just to HER2neu cancer. After all, most of the issues of a breast cancer diagnosis are pretty global and not limited to HER2neu+ cancers. Apart from a few esoteric and unproven dietary things, the separate issues for HER2neu+ cancers are only in the area of treatment.

I was going to keep quiet since my comments were not all of praise. But you asked again. You don't have to forward these to GSK if you'd rather not. Do you want us to comment on the HER2support website? That would be more positive (smile).

Debbie Laxague
PS: One more thing they could do is post full text articles about the latest HER2neu research. Preferably not just as it applies to Tykerb.

[Chelee]

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

[StephN]

Hi -
good comments so far.

I was also one of the people who was involved in the online "comment committee."

The main thing that the Her Move site wants to do to set itself apart from the SUPPORT oriented websites is to be more of a LIFESTYLE site for specific women. They feel that women who have been through a HER2 diagnosis and treatment could benefit from a site that is targeted to this subsection of breast cancer patients.

They also want to have areas of the site that anyone could get something out of such as the travel and cooking areas.

Their focus is on having a forum for anyone who is completing treatment and is wanting to change modes and get on track for the REST of their life.

MOVING ON is what the Her Move site wants to be about.
Hope this helps to put the new site in perspective.

[tricia keegan]

I checked it briefly and would have signed up for more info and updates but was disappointed to find I was unable to as I live outside the States. Kinda put me off going back:(

[caya]

tricia - You are right about this, I just tried to "join the movement" and could not fill out the state and zip code boxes as I am Canadian.
Too bad, I specifically recall mentioning that the site should apply to Canada and other countries besides the US when we did the on-line call.

all the best
caya

[freyja]

I checked it out, thought it was a bit generic, not offering a whole lot of useful info that you don't get from your basic living with cancer handout. Also, some of the recommendations are a bit on the spendy side, what about for people who are really financially suffering through this? They need to find ways to live a good life, too.

[tricia keegan]

Caya maybe if enough of us who live outside the States comment they may look at changing this.
Bump!

[Diana1993]

Caya and Trisha,
I have also reached the road block at the box for zip code. I have almost given up my quest on trying to get Tykerb (lapatinib) approved in Canada. I've run around in circles trying to get someone to listen. I have had two responses from Health Canada, which have lead to a dead end. GSK in Canada offers no information or help, but I did speak with a nurse at the American GSK and she informed there is a foreign program and my onc. has to inquire. My onc. has more or less said "No". So after a brief break and with climbing tumour numbers I will keep my eyes open on this site hoping for a solution.
I want to follow in Andi's footsteps and look withing for solutions. I know it's there, I just have to tap into it.
Hugs,
Diana.

[tricia keegan]

Diana I'm sorry I can't help with advice for you but maybe someone else on the board or Joe may have some idea's you could try.
Tykerb is approved here now in Ireland, one of our member's chose to move her family here just to get it as it was'nt approved in Scotland. If all else fails there's an idea lol....(just bring a brolly,you'll need it!).

[caya]

Diana - I did not know Tykerb was not approved yet here in Canada - I do know that Herceptin got approved because one woman went to one of the national papers (I think the Globe and Mail) with her story that Herceptin could be her 'cure" and how it should be approved here. Lo and behold, it was...
If you have all the facts about Tykerb - (how many countries have approved it, success rates, costs etc.) you might aproach the Canadian Breast Cancer Foundation and/or the Canadian Cancer Society to take up this cause with the government/press.

all the best
caya