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Side Effects Threads

Phoenix Rising's picture
Phoenix Rising
Posts: 151
Joined: Jul 2012

Hey Kids,
Max Power mentioned that it would be great if doctors would give us a better idea of what side effects we might expect from various medications, so we don't have to Google everything to find out what's going on.

Well today I was interested in learning more about splinter hemorrhages and why they form with Votrient-- so I Googled it.

Lo and behold, the first Google entry that came up was a post in THIS site, where I mentioned splinter hemorrhages in the Surgery/IL2/Votrient post.

So I said to myself, "Self, maybe we could all list our side effects in one place for the other Googlers like us."

I suggest something like a post where the subject says, "Votrient Side Effects I Experienced,"
and each poster could make a simple bullet list. Another post would say, "Sutent Side Effects I Experienced," and Sutent patients could list....

What do you think?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Phoenix, if you can be bothered to read what follows (and, knowing you, I believe you will) you won't be surprised that I think that's a great idea.

I have actually been trying for months to have changes made to CSN that would enable such organised storage of information across all major topics and across all cancer threads. Ironically, I illustrated this, many months ago, with the topic of Votrient side-effects! I've been engaged in lengthy dialogue with the CSN management team which has yielded nothing so far but may do so in the mid, if not short term. Alice had much the same thoughts as mine and we have a thread, started by Alice, entitled

“Collecting kidney cancer information from Kidney cancer patients”

which is at:

http://csn.cancer.org/node/238444

The very fact that this thread has become totally lost***, as newbies start new threads all the time, usually re-inventing the wheel, and the likes of iceman and GaryM have to trot out a fresh version of the same old information time after time, illustrates powerfully why I want change here. [*** as i write, that thread is now 7 pages back and you'd have to go back 341 threads to find it.]

[Looking at the above noted thread again, I think I'll bring it alive so that any interested newbies can read it because my convictions continue in that vein and I imagine that goes for Alice too. If I'm around for a bit longer, I'll resume pursuing it as soon as my next operation permits. I know we're pushing against a half-open door and only time and financial resources are holding back progress.]

It may be worthwhile copying here a small part of my correspondence with CSN top brass to show you the sort of thing Alice and I had in mind:-

Greta,

I can't tell you how delighted I am to receive your reply!

I take it you are a PR expert, fielding my submission on behalf of the geekier people behind the CSN forums who will evaluate requirements and suggestions and decide how best to go forward?

My feeling is that the present CSN offering is very attractive and performing an invaluable function (but if your people can see ways of making it even better, then great).

For what it's worth, I think you have put your finger on the key improvement - better load balancing, studying diurnal patterns and reducing downtime. Improvements there will be welcomed wholeheartedly by the mass of enthusiasts on the kidney cancer forum (which is extremely active for one of the less common cancers) and, I'm sure, all the other forums on CSN.

The other way in which a big improvement can be made is in content management and that is the issue I'm addressing. It's not an issue for the software technos so much as the end users who can do the requirements capture and specification. As I've said, I believe this can be accomplished very easily from the set-up you already have, as follows.

In the side bar to the left of the Discussion Boards Lists (and of the forum lists and of the threads lists and of the message lists) we presently have a brown list of 10 links under the heading "CSN" and a blue list of 18 items under "cancer.org". Below that is a white space which contains a list of threads and of 'friends' peculiar to each individual user. I am simply suggesting putting in a new list (say, in green) which would have about a dozen or so headings, such as those I suggested in the thread "Collecting kidney cancer information from kidney cancer patients" in my message dated April 10 2012.

This would provide top-level pigeonholes in which posters could place messages containing real information (as opposed to the good luck and such-like messages, which would stay in the usual list of threads as they operate at present).

We already have nested menus: click on "Discussion Boards" --> list of cancers; click on "Kidney cancer" --> list of topics; click on a topic --> the list of messages. If we had an intelligently designed set of head list + sub-menus, it would be a cinch for users to post messages at the bottom level, thus enabling others to find that info. by 'drilling-down'. A theoretical example would be for me to find highly specialised info. by going to "RCC sub-types" in the green menu --> list of sub-types, click on "chromophobe" --> 2 options (viz. with or without sarcomatoid de-differentiation) click on "with sarcomatoid variation" --> message list devoted entirely to sarcomatoid, chromophobe RCC!

That structure would be of enormous value not only to patients but also to doctors, researchers and drug companies. For instance, all of those categories of users would find it of value to easily home in on side-effects of treatment, e.g. click on "Side-effects" --> "Drug treatments" --> "Adjuvant therapies" --> "Targeted agents" --> "Votrient (aka pazopanib)" --> messages posted.

At present, information on patients' experiences of the side-effects of the drug Votrient are scattered irretrievably throughout arbitrarily headed messages in innumerable threads with often uselessly opaque titles.

I can illustrate this: - the best I can do, at present, to try to discover such information is to do a 'search' for "Votrient side-effects" and this yields a list of 7 threads entitled:

[HERE, THE LIMITS OF OUR S/W LOSE THE ORIGINAL FORMATTING WHICH READERS COULD CHECK BY PERFORMING THE SEARCH I'VE SUGGESTED.]

Title Author Replies Last Reply
Pazopanib trial for recurrence prevention KGField 5 02/15/2012 - 05:28
nexavar side effects starting adobe 17 03/02/2012 - 18:38
Need Advice - RCC Stage 3 - Adjuvant therapy - Clinical Trial - Pazopanib v/s Active Monitoring - Any Vaccines ? Options livealive 52 04/06/2012 - 03:15
ct tomorrow adobe 17 03/10/2012 - 11:35
Second Cycle of Nexavar adobe 6 03/20/2012 - 16:47
Collecting kidney cancer information from Kidney cancer patients alice124 31 04/22/2012 - 10:05
:)

If I go to the fifth of these "Second Cycle of Nexavar", and look I find only one reference to Votrient and that does not give any information at all about side-effects of that drug!

Just think about the two scenarios, if a drug company, or a doctor, or a patient wants to know what the problems are with that drug. Under my envisaged structure they can quickly find all the messages where patients have detailed their experiences of the side-effects. Without that, it is virtually a complete waste of time and effort, looking for a needle that may not be in the haystacks you're trying to pick your way through.

Please bounce this plan off your tech experts. I hope they can confirm that it would be very easy for them to make this very valuable addition. If so, then I would be very happy to organise arriving at a good list of menu and sub-menu items under which users can post hard information that will be of potential use to everyone using these excellent forums.

Very sincerely,

T()

From: "CSNCommunity.Specialist@cancer.org"
To:
Sent: Wednesday, 2 May 2012, 12:03
Subject: Re: ACS CSN kidney cancer forum

Dear T()
Thank you so much for your thoughtful ideas and suggestions. I apologize for my delayed reply.

I did read the thread and understood some of it. ;-) My expertise is not in web design or the technical aspects of functionality, but understand the broader concept of your desire for a better way of organizing and eliciting information from other CSN members...and increasing the number of members participating in the kidney cancer forum. Your ideas are timely in that we are in the process of designing a formal evaluation of CSN that will include opportunities for members to provide feedback such as yours.

I'm not able to say what kinds of site changes may be made to the site in the near term. Whatever ultimately is done will be driven by the findings of the evaluation. However, I can tell you that we are also working on steps required upgrade our software application which will change a few things in terms of appearance and functionality. Most importantly the upgrade should improve overall site performance to reduce load time and number of outages.

On a final note, please be assured that all of your suggestions, and others who contributed to the thread you sent, will be seriously considered.

Best regards,
Greta

Your CSN Staff
American Cancer Society Cancer Survivors Network®

This is a small part of the correspondence which I shall endeavour to follow up on soon (Deo volente). I think I can safely conclude that you would lend your support to this initiative?

Phoenix Rising's picture
Phoenix Rising
Posts: 151
Joined: Jul 2012

T_W, I've been on this discussion board for just a few weeks, and already-- you know me. So of course I read your entire post, word for word, and I am about to read the thread you bumped to the top of the list.

I was trying to make lemonade with lemons but I see you all invented the wheel and started designing a Cadillac.

This site is already very valuable but it could be SO much more!

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Enjoy!

Max Power's picture
Max Power
Posts: 60
Joined: Sep 2012

I have read this and the other thread and a couple of thots arose:

1) What we are talking about is a Reference. This distinguishes it from most of the existing threads here which become rapidly obsolete with time, and for which the current format is ideal.

However, to distinguish it from reference info that we can easily Google , or get from doctors, this is a Personal Experience Reference.

2) We are not talking about a relative database. We cannot hope to gather any statistically relevant info from this. For example, in no way can the detailed type of RCC be linked to symptoms or treatments, it is just too much to ask. Nor can we attempt to try to discern environmental causes etc, as this would not be close to a random/blind study.

I have done similar data accumulations when I worked in Quality Control. (Which products fail, for what reasons and what are we doing about it?) What I have learned is that simplicity is key, otherwise it gets out of hand very quickly. Someone will go into the RCC thread and start putting in side-effect info, instead of going to the side-effect thread - guaranteed.

To me, more important than even listing the side-effects of, say, Sutent, is what people have been doing to ameliorate them. To be used as a reference, we would want to use links such as Treatements -> Sutent -> Side-Effects -> Fatigue. (Side-effects can't be a main heading, I think.) Also, if we leave off the last item, then we would again find ourselves having to wade through many entries to find what people are doing about fatigue.

A question is, can we allow the thread structure to shape itself or do we have to write up the tree first and then let it fill? The latter I fear.

So my understanding is the status is wait and see what CSN says. ?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Correct. They have acknowledged the validity of all that I have said to them, intend to try to accommodate same and have asked for forebearance since they are amidst major changes and have finite resources.

Thanks for taking the trouble to read the two threads - I've put a lot of work into it that has not been generally seen and I'm disappointed by the lack of progress since many here have agreed that this (and the many other ACS CSN forums) could have far greater value if the sort of structure I've outlined could be implemented.

I'm glad to hear that you agree with my proposition that it's essential that the tree (or other) structure is generated first, even if it's a modifiable work-in-progress.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

No further word from CSN for a while. One very simple proposal I've made recently is that the software should respond, whenever someone is about to start a new thread, by putting out a prompt advising them to look first for a suitable existing thread to post on (and telling them how to search for one) before starting a new thread which could just be re-inventing the wheel. This would stop new threads from proliferating like cancer cells. Many newthreads are ephemeral and die off but have, meantime, pushed more important threads down and out of sight.

Another advantage of keeping material on the same topic together on one or two threads, rather than constant new ones, is that it enables one to see progress across time, e.g. in changes in the admin and care for IL2, the adjustment of dosages of Votrient, the management of side-effects of Sutent. If this is just scattered across randomly titled threads, constantly started in an arbitrary fashion, we lose many of the potential benefits of forums like this.

Max Power's picture
Max Power
Posts: 60
Joined: Sep 2012

Looks like if we use the existing structure we are limited to 2 levels of branching, total. The first level is the title of the thread, the next is the indenting found in each thread. Not very deep for referencing.

So, for example, we could start a thread called Votrient, and the first item could be "Uses, Clinical Studies, dosages" and the next could be "Side Effects", etc. This hopefully allows people to quickly skip to their sub-thread of choice.

That would probaby be better than having a thread called Side Effects, and have Votrient under that. Someone who is taking Votrient would then have to go to several threads to learn about the drug.

Because of the limitations, I can't see a thread title called Treatments - the sub threads would just be too busy.

I've seen that indenting under the first entry doesn't really indent, though secondary indenting is more obvious. That's a problem to deal with.

The good news is if the author of a posting has more to add, he can edit the posting.

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