Feedback on treatment

A message for the site operators really…

Talking to some friends today and discussing (as you do) the effectiveness and/or side effects of the various treatments we follow - wouldn’t it be useful to have somewhere on the site where people can (b)log these effects? It might also be useful for medical/pharmaceutical groups as I imagine we amount to a fairly substantial sample of secondary cancer patients.
Starting a new chemo I always search through the posts to see how other women have experienced it and it’s such a help to get ‘real’ experiences rather than the bland, fairly generic information which comes with the drugs. An awful lot of posts are about just this topic - ‘I’ve just started x and …’
It could either be a blog following on the information page on each type of drug or even allow us to keep an updated record on our profile and make this searchable and visible to all.

Just a thought…

Thanks Manon

I have passed your request on to the relevant team.

Best wishes
Lucy

Think this is a really good idea Manon and would make it much easier to find the information yoy want when starting a new drug. I find other people’s experiences much more “informative” than what you read in the drug information or indeed what you are told at the hospital. Particularly useful to hear of how people have dealt with the side effects eg different creams that have worked for hand & foot syndrome with xeloda (my current problem!).

Hope BCC can arrange something.

Kay

Hi Manon

Bertie Bosredon, our Head of New Media has asked me to post this reply to you:

We are building a new website, please see this thread:

breastcancercare.org.uk/bcc-forum/discussion/16477/4/a-new-website-for-breast-cancer-care/#Item_5

We will give you tips on how to create a free blog and you will have the possibility to make your blog entries appear on your Breast Cancer Care profile.

Thanks,

Bertie

Excellent - but wouldn’t it be a good idea to poll the people who post on here and find out the most user-friendly way of getting this info. I personally would be delighted to search under treatment name and get all the relevant posts but realistically speaking would I, when following treatment be a…d to post what was happening to me on a day to day basis. However I probably would post a summary of what I had experienced. So would it be best to post on a personal blog or under a drug name. From talking to a few friends who work in building web-based databases I know this isn’t a simple matter but wouldn’t it be a good idea to find out what the demand is?
For example in my last chemo it would not have been worth keeping a daily - or even weekly blog as it was boringly uneventful (lucky me) so what is the best way to capture this information.

Hello out there - what do you think?

I agree with Manon: There have been several discussions about capecitabine (Xeloda) on the Secondary BC forum recently, and I’ve found myself repeatedly posting similar info about my experience of this drug to many different threads, because there was no way to refer anyone to this information in a more central location on the Forums. Whilst I’m not discounting the value of blogs, I think it would be easier and more relevant & useful for those of us wanting to know how any of our drugs, treatments and diagnostic tests impact on others to find this information in a section called “Xeloda” or “radiotherapy” or “tumour markers” than in individuals’ blogs.

Marilyn x

I agree with manon and Marilyn.

Jane

A database with info such as ER/Her2 status, primary staging, secondary staging, what treatments one has had, response, side effects and so on, would be fantastic. As I said to someone the other day, I almost cut and paste replies to people on some of these questions because I have typed out similar information sooo many times now.

So, very much agree with all of the above.

Jenny

I agree.

I’d find it really helpful to look up similar experiences for the same regime be it chemo, rads, hormone therapy etc particularly if split into individual drug types so you can get the information without doing a massive search through all the threads. I’ve directed newly diagnosed ladies to different threads but there’s often a lot of reading to be done to get the information you need and is relevant to you. A system where we have a menu down the side of the screen, like now, would direct someone straight to where they need to go.

Nicky