HER2 Support Group Forums - View Single Post - Hermove website

dlaxague · 10-03-2008, 07:56 AM

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.

10-03-2008, 07:56 AM	#3
dlaxague Senior Member Join Date: May 2006 Posts: 221	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.