Collecting kidney cancer information from Kidney cancer patients

Texas_wedge said:

SEER site
birdiequeen, that's just great! Thank you so much. I was a bit surprised no-one had done this but I hadn't found it. Can't wait to go there and look up Michigan. We have some small amount of data in the UK but not much I'm aware of. It will certainly address Alice's question of looking for possible hints on carcinogenic environmental factors, even if she's disappointed that it's not broken down per golf course

While you're visiting here, what do you think about the idea of a more permanent reference database of topics for RCC?

Texas_wedge said:

wooden spoon
Am I addressing Ms. Holzlöffel?

That was a very informative and useful posting for which many thanks, bq.

Before getting to the more serious stuff, here'e the deal on spoons. The wooden spoon as a booby prize goes back hundreds of years in England. Wikipedia has an interesting entry about it. It's particularly apposite in golf because of the UK practice of playing competitions for either medals, as prizes for winning a competition, or SILVER spoons. So, a wooden spoon is in marked contrast to a silver one and goes to the person who came in last. Our Club professional photographed all prize-winners on Friday night, including me. Our wooden spoon is huge and I endeavoured to hide my face behind the bowl, with only partial success. I was going to adopt it as my new picture but my Wife has embargoed that on the grounds that it's too much my Christopher LLoyd look (movie "Back to the Future").

Thanks for your insight on the personal threads lists. It appears as though they are generated for each individual from threads originated by the individual's 'friends'. There must be a space constraint because I don't have one for Fox - e.g. MDX-1106.

Many of the forums are like the EC in being ruined by people constantly and unnecessarily starting new threads. That's fine as regards ephemera but infuriating for the meatier stuff that one would like to keep tabs on. Your suggestions are illuminating in demonstrating that I have not explained myself as well as I should have done. I don't want to start a new reference thread and I don't want to go outside, as Fishie mentioned as a possibility. Nor do I want to trench on the individual-focused message side of our community. So, let me have another attempt at summarising my 'vision'.

Depending on the spec of the software package template the CSN Webmaster is using, we might have some space available in place of the threads list, or perhaps lower down, below 'friends' in the brown/blue/white sidebar which appears with Discussion Boards and also with Kidney Cancer and the individual threads - i.e. it's permanently on display.

I see something like my list going there. Hitting a topic heading could then lead into a sub-menu system, the composition of which is up for discussion. This is the same as clicking on "Discussion Boards" and getting to the cancers sub-menu and thence, after clicking on "Kidney Cancer" getting to the next sub-level of our threads.

This would thus be separate from the ongoing and ever-lengthening list of threads, where the community and personal aspects would continue as usual, unabated. It would also be distinct from, and an adjunct to, the useful information and facilities listed under the brown and blue boxes. The latter contain reference materials of a general nature, useful to, in particular, newcomers to this world.

What Alice and I see as needed are specific pigeonholes for new permanent information that will be easily 'drilled down to' via the new predetermined list of topics. This could be invaluable as an archive for newcomers here, old-timers here, researchers, clinicians and drug companies. It would not contain the sort of social information, humour etc we have in our threads and it would not be for housing the sort of well-established information available on the major information sites (or via the blue sidebar here). However, I suggested that the first item of my proposed main menu "General" could be a place where we would list authoritative general sources and top information websites.

It might be clearer if I give an example or two. Fox is maybe going to unearth (Fox, 'going to earth' ) an article he mentioned. I asked him for the reference. He could send me a private email but, because the article would interest lots of us here, it would be better for him to put it in a message on the thread. If my plan were implemented he could also add it to a thread where it could be found by drilling down from the new list - maybe under “General” where we could build in a sub-menu item , “Immune system” or perhaps we could usefully have a main menu item headed "Immune system". This sort of issue is why I think we would need to thrash out an optimal menu structure at the outset.

Another example might be me pursuing information on the side-effects of Votrient. I can go to plenty of sites for that and I can look at the manufacturer's leaflet. But I really want the low-down on what fellow patients here have found out the hard way, and any tips they have on the best ways they found to cope with the side-effects. So, I'd come here, find 8. on my suggested list "Drug treatments" --> a sub-menu of "Targeted therapies" --> "Votrient/pazopanib and maybe even down another level --> "Side-effects". That way I could almost immediately get to exactly the sort of information I'm wanting, always assuming someone had posted something there!

Simillarly, on metastatic sarcomatoid chromophobe RCC, someone could go to the new thread I've just started, which will probably very soon drop off the first page of KC threads and disappear without trace without ever having attracted a reply. Anyone who might be interested in the topic will probably never find that thread. Alternatively, an investigator could go to 2. RCC sub-types, or 3. Modifications (depending on the way we've set up the menu structure) and drill down, e.g: RCC sub-types --> Chromophobe --> sarcomatoid --> metastatic. That would take a matter of moments. If they then found there was nothing there, they could draw their own conclusions. They might also want to make a posting there (e.g. 'I knew someone who had that but he died.')

As an example of indirect value to us, it could be a great source for clinicians and drug companies to keep an eye on the major side-effects and the ways of managing them that appear to be most favoured by us.

Texas_wedge said:

Problems?
bq - who says Germans don't have a sense of humour?!

I value your feedback and so I wonder if you could illustrate with an example of a prospective problem. I've suggested how someone wanting to tell about their experience of side-effects from Votrient might choose where to make such a posting - go to list at left and choose --> Drug treatments --> Targeted therapies --> Votrient --> Side-effects or, depending on whether the final structure contained a first-level option of "Side-effects", go to Side-effects --> drugs --> Votrient. If eager to draw everyone's attention to somethingimportant, the poster might want to put a short message on a current thread, saying 'I've just posted about the horrible side-effects I've been having on V. - see via the main drugs thread/side-effects thread.

My idea is that a whole structure of menus and sub-menus would be thrashed out between all here who care to pitch in. It could be adjusted in light of experience over a sensible period of time. if well conceived it should be easy for someone to decide where to look for info. and, equally, where to post it.

Obviously a message of an entirely personal nature directed to a specific person, particularly if close to being a phatic communication, should go only on to the regular threads, as at present. The choice of where to post would be made by the poster in exactly the same way as we do now.

No additional issue of authority would arise since the postings would still be essentially just the posters narrating their own experioences - factual.

I'm not clear what you mean by "how would it be filtered". What roadblocks do you foresee? The sooner we can identify major problems the better.

Texas_wedge said:

Problems?
bq - who says Germans don't have a sense of humour?!

I value your feedback and so I wonder if you could illustrate with an example of a prospective problem. I've suggested how someone wanting to tell about their experience of side-effects from Votrient might choose where to make such a posting - go to list at left and choose --> Drug treatments --> Targeted therapies --> Votrient --> Side-effects or, depending on whether the final structure contained a first-level option of "Side-effects", go to Side-effects --> drugs --> Votrient. If eager to draw everyone's attention to somethingimportant, the poster might want to put a short message on a current thread, saying 'I've just posted about the horrible side-effects I've been having on V. - see via the main drugs thread/side-effects thread.

My idea is that a whole structure of menus and sub-menus would be thrashed out between all here who care to pitch in. It could be adjusted in light of experience over a sensible period of time. if well conceived it should be easy for someone to decide where to look for info. and, equally, where to post it.

Obviously a message of an entirely personal nature directed to a specific person, particularly if close to being a phatic communication, should go only on to the regular threads, as at present. The choice of where to post would be made by the poster in exactly the same way as we do now.

No additional issue of authority would arise since the postings would still be essentially just the posters narrating their own experioences - factual.

I'm not clear what you mean by "how would it be filtered". What roadblocks do you foresee? The sooner we can identify major problems the better.

birdiequeen said:

Well maybe spoon wood
Yes, I was Ms. Loeffelholz before getting married.

It's hard to hear that the wooden spoon is a booby prize dating back hundreds of years. I probably shouldn't tell my husband, he may feel slighted that he ended up with the wooden spoon.

I like your vision, but I get hung up on the implementation. Who would decide what belonged there, how would it be filtered....I see a host of road blocks to that in my mind. But, there is certainly room for improvements on the discussion boards and those are very good ideas.

Texas_wedge said:

Organisation of information
Alice, i hope there's a turn for the better for you and John in the next couple of weeks.

Meanwhile, I've just had a charming and encouraging response from the CSN team about the development we'd like to see, so watch this space, as they say!

jtebo1955 said:

Kidney cancer and esophageal cancer
Just dropped in here to see if anyone here has had esophageal cancer. I had kidney cancer in 2008, accidental finding..long story. Anyway right kidney was removed and was told it was contained not to worry. Had CT scans every 6 months 18 months after scan showed "thickening of the esophagus" had barium swallow. Dr says just reflex. 6 months later stage 3 esophageal cancer. Anyway, I joined the EC message board and have seen several people with both. 2 different cancers, I would strongly suggest getting esophagus checked, there might just be a connection.

Judy
2008 kidney cancer
2010 esophageal cancer

jtebo1955 said:

Kidney cancer and esophageal cancer
Just dropped in here to see if anyone here has had esophageal cancer. I had kidney cancer in 2008, accidental finding..long story. Anyway right kidney was removed and was told it was contained not to worry. Had CT scans every 6 months 18 months after scan showed "thickening of the esophagus" had barium swallow. Dr says just reflex. 6 months later stage 3 esophageal cancer. Anyway, I joined the EC message board and have seen several people with both. 2 different cancers, I would strongly suggest getting esophagus checked, there might just be a connection.

Judy
2008 kidney cancer
2010 esophageal cancer