New Tool - Medivizor

[rhondalea]

AnnMarie Ciccarella had a blog post the other day about Medivizor:

http://chemo-brain.blogspot.com/2013...concierge.html

I signed up for an account, and in less than an hour I received my invitation. The site is in beta, but the site owners are eager to grow and responsive to suggestions.

I encourage all of you to give it a try.

[NEDenise]

Rhonda
What does the site do exactly?
Denise
ps-so glad your computer problems are fixed! I missed you!

[rhondalea]

I missed you too, Denise. (But I thought good thoughts in your direction--and in several other directions--even as I engaged in epic battle with Microsoft--and believe me, they were the only good thoughts I was having right about then. Sheesh!)

Medivizor provides information specific to the condition or diagnosis you input. That's the good news. The bad news is that, being still in beta, there gaps in the information flow. For example, I tried to be really specific and chose "HER2-receptor positive breast cancer" as my condition. Medivizor apologized and advised me that it had no information at this time. When I went back in and chose "breast cancer" instead, I was then given the option to input hormone-receptor and HER2-receptor, as well as the specific type of cancer I have.

As time goes on, however, the site will be able to provide filtered information about treatments, trials, self-care--you name it. At present, the information provided is relatively basic (although the quality is high). To some extent, at least part of it is similar to the filtered newsfeeds we receive on this site, but the goal is to make it even more individualized and complete (e.g., the clinical trial information).

Bottom line, for you and me, it's not especially useful at this time, so I'm still stuck reading Science Daily, Medical News Today, Eureka Alerts and so on, etc., ad nauseum (can I stop now?) every single day. On the other hand, if people like us are participating, the site will improve for us and for those who are diagnosed in the future. For newbies, on the other hand, even the current information flow will be useful.

You can also contact Medivizor directly. In the comments to the AnnMarie's blog post, a Medivizor rep responded to my remarks and left his email address for future questions and suggestions.

Hope that helps. I'm not sure how coherent I am right now. I can handle the big stuff but the little bitty stuff just knocks me on my butt. Not logical, but that's what happens. My grandson rolled down the rear window on my car, and it won't go back up. After dropping him off at his dad's, I drove the half hour home with cold air blowing through the car. I was just outside (sans gloves) "installing" a plastic contractor bag (perfect size) with duct tape. My fingers are still tingling, and I want a nap. It's just ridiculous. (And I looked pretty ridiculous struggling with a long strip of duct tape dancing in high wind. Next time I'll get pictures so we all can laugh.)

[Joanne S]

Rhonda, Thanks for sharing! I'm going to try it out! Jo

[rhondalea]

I hope it's helpful to you, Joanne.

Medivizor just added the information about "tamoxifen for 10 years" and "lumpectomy vs. mastectomy survival" to my feed. One came from the Lancet and the other from the New England Journal of Medicine, so it appears that they're paying for the more expensive sources.

The nice thing about it is that it doesn't take much time to provide the information, and for now, at least, it's free. One hopes that if (but more likely when) a pay model goes into effect, they will learn the lesson of other startups and reward those who endured the the beta with a continuing free account. (This mention of a pay model is purely my speculation based on what I've seen in the past; it could be that they'll decide to rely on advertising revenue instead. It's just one more question I'll put to them when I complete my list.)

[rhondalea]

In just the last couple of days, Medivizor has sent me excellent material about chemobrain (picture of Debbie Ganz included, so I knew it had to be good), survival rates linked to insulin levels and to radiation therapy. No abstracts--it's all full studies and reviews from top sources.

I'd sent a note mentioning that they needed to make an entry for "chemobrain" in the conditions. Shortly thereafter, the chemobrain results started to appear in my feed.

I'm just so impressed.

[NEDenise]

Rhonda,
I just now had a chance to catch up on this thread...I would have paid money to see your car repair episode...I'm giggling now, and I didn't even see it!

I'm definitely going to check out medivizor...on your recommendation alone...that's good enough for me. I'm worried though...I wonder...are the things on Medivizor as difficult to understand as the feeds and abstracts that get posted here? I'm a fairly bright girl...really, I am...but sometimes I feel so lost when I read those study results. Is it all like that, or are there also articles that are more like journal articles?

Hope your window is fixed by now, and that you got little or no snow last night. (we got about 3 inches here.)

Be well!
Denise

[rhondalea]

Hi Denise,

Yeah, the car repair...my grandson got in the car the other day, and he asked me what happened to the window. I used it as a teaching moment to explain why it is sometimes better to ask before touching, that it's not enough to know how to do something--sometimes you need to know why you're doing it and if it's okay to do.

Maybe he got it. As for me, at least I didn't get frostbite, but I think it was close.

We got five inches of snow. Moments ago, I went outside in robe and flip-flops (!) to measure it just so I could tell you with precision. Fortunately, what's on the car window is a contractor bag secured with duct tape, so it'll take worse than Nemo for snow to get inside my car. (I haven't gotten it fixed yet because I've been running around like a loon doing other stupid stuff. I don't think I've told my almost-dead cat story yet, but it's a piece of drama that dates to the day I flew to San Antonio for SABCS. Funny in the end, thankfully, but an object lesson about flea prevention and keeping pets indoors.)

And now, three paragraphs later, the point of this reply. Medivizor provides both the original paper AND a simple interpretation written in plain English, so if you want to scour the original, you can, but if not, you have a concise synopsis that is much more useful than the usual abstract you find in PubMed. I put that in bold so anyone who doesn't want to know about my daily inconveniences will be able to find the answer to the question without any trouble.

You sound so much better now, so I hope that means your recovery proceeds apace. I also hope that your lawyer has gotten your crazy HR creature under control. I thought I had employers from hell (when I was still working), but you really hit the jackpot in the worst possible way. Sheesh.

[NEDenise]

Rhonda,
You crack me up! Flip flops ...in the snow! When I read that aloud, Ted and the boys laughed out loud too!

Sorry to hear your cat was sick, but glad you described the incident as ALMOST dead. Yikes!

I am feeling better phyisically. Emotionally...not as much. My lawyer says I have to meet with HR and tell them the full stage IV truth so I can file for LT disability AGAIN, and so be able to take the time off I'm going to need for chemo and testing for the rest of this year. So...Ted and I have a meeting with Satan's Spawn on Monday afternoon, during which I will totally place my professional future in her hands.

Translation: I have probably seen my classroom for the last time, and will never have another classroom of my own again. But I will still have a job (albeit as a sub)...same pay, same benefits. Sad? oh yeah. End of the world? not even close...I refuse to give Satan, or his spawn that sort of power over my life and happiness!

I'll do what I have to. My main jobs are to stay alive, and be the best wife and mom I can be, for as long as I possibly can. The hell with anything that tries to get in the way of that!

Sorry to hijack your thread with that tale of woe. Medivizor sounds like just what I need.
Thanks my friend!
Denise

[rhondalea]

I've turned into a wuss. I used to go out in the snow with bare feet.

I *will* tell the cat story later, because it's pretty funny since we got a happy ending. He had a little IV catheter , so he had to wear one of those collars that you usually only see on dogs. Poor pathetic kitty, and he really made the most of it.

I will be thinking of you all afternoon tomorrow and sending strength and hope. I know how much you want to keep your class, and it would be wrong if you could not. The HR woman is a witch--I like the "Satan's Spawn" label you've given her--but I will hope as hard as I can that she has a moment of empathy for you. I believe you're going to be around for a long time, so it would be best if you could do what you enjoy. Please come back after your meeting and tell me what happened. I'll be on edge until I know that it has all worked out for you.

I love thread hijacks. (And I have earned the right to have my threads hijacked because I do it so often.) Over the years it has seemed to me that wonderful interactions occur because of thread hijackings, so please feel free to hijack mine any chance you get.

On the actual topic, the COO of Medivizor sent me an email asking to talk about the site and what they're trying to do. If anyone has signed up and has some suggestions that I can pass along, it would be extremely helpful. Also, if anyone reading this could pass it on to their friends who have serious illnesses, it would be great. There's so much information out there about breast cancer, but having tried to navigate it all in the last two years, I know just how confusing and overwhelming it can be. Medivizor promises to be an answer to that if it is able to recruit sufficient users and to get good, implementable suggestions about what it should offer. Patients and their caregivers need to be better informed about their disease and their options, and Medivizor is perfect for the purpose.