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CSN update

greta's picture
greta
Posts: 241
Joined: Jun 2000

I apologize to everyone for not having communicated sooner. You have been more than patient under the circumstances.

At this point, all of the content that was missing following the upgrade has been restored with the exception of private messages. There has been an ongoing investigation for several weeks that has yielded variable findings. But to make a long story short, it appears that it will be possible to restore at least some messages. That is all that can be reported at the moment because the investigation is not finished. I just wanted to let you know that the level of effort being devoted to it has in no way diminished. It is well-understood how important the private messages are to you, and you can be assured that there is a strong commitment to reach the best possible outcome.

Another ongoing effort is improvement of site performance. The consensus seems to be that, overall, it is better now than it was prior to the upgrade. However, steps are being taken to further improve it in the next couple of weeks.

In the interim, other technical issues are being addressed as they are identified, and ways to improve responsiveness to technical concerns and better meet your needs in the future are being discussed. Additionally, we are planning a formal evaluation of CSN this year.

Thank you again for your patience.

Warmly,
Greta
(aka Your CSN staff)

p.s. The man in the picture is my father. He was in his late 70s when this photo was taken in a Texas cotton field.

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

That's very encouraging news and well worth waiting for.  Knowing a little about the game, I congratulate the CSN team for battling on through all the problems of the upgrade which is often a harrowing process with a lot of mid-night oil burnt.  It will be great if we can have some/all of our pms restored and will be a major relief if the investment that's being made gives us greater consistency and faster performance - all fingers crossed here.

For anyone who hasn't read Greta's personal profile, PLEASE click on her pic (well, her Father's actually!!) and read it.  It not only shows how truly she is one of us but it's one of the most helpful personal stories you're ever likely to read about handling the human reactions to this disease and coming to terms with the family difficulties it can cause.

Even more, it's a memorable reminder of how good it is to live in the present moment, to look for all that's good about our life and appreciate every blessing we have - even when times are hard.

NewDay's picture
NewDay
Posts: 200
Joined: May 2012

Is anyone else having problems scrolling long threads?  I need to update my "Unclassified" thread, but as I scroll down, It starts scrunching everything.  Any ideas?

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

Hi Kathy, so good to hear your news from NIH and the almost certain exclusion of translocation xp11.2, even though you remain the mystery woman.  You've certainly left no stone unturned since we were recommending that you get a second opinion and send your slides on.  I hope Emory will oblige soon. 

You remain unequivocally in our 'specials' club.  Mutation of the SDHC gene appears to lead to surprising revelations, like the lady who had carotid body tumor at 42, Clear cell RCC at 68 and then Papillary RCC at 69!  It's will be interesting to see what emerges about the relationship between ccRCC and pRCC with the speculation about a  possible new shared pathogenesis pathway - seems surprising since, if I remember correctly, pRCC is significantly different from the main other subtypes in being less hyper-vascular.  Still, everything about RCC is so complex that such simplistic observations are probably meaningless.    Anyway, don't you go being as interesting a case as that, but by all means stay with being your unique self! 

How are you feeling?  and how is Checkers?  Maybe our friend Neil, fast becoming a nutritional guru, can come up with some helpful thoughts on dietary modifications that might help your gastric problem.  How is your bodyweight now?

I've dropped Greta a line about the indentation problem and hope she can refer it to the developer soon so that you can more conveniently post your latest news on your UNCLASSIFIED RCC thread without it being squeezed down to one word per line!

NanoSecond's picture
NanoSecond
Posts: 656
Joined: Oct 2012

Hi Kathy,

I have taken the liberty of emailing you the guide to the science and rationale behind my "proper" diet and use of "appropriate" supplements.

As I mentioned in that email, you definitely should consider eliminating all the wheat and see if it has any bearing.  There are lots of "issues" with wheat aside from gluten intolerance.  A really good source of information on the topic is the book "Wheat Belly" by Dr. William Davis.

I hope you find my other research of some help.

Best wishes,

 

-NanoSecond (Neil)

NewDay's picture
NewDay
Posts: 200
Joined: May 2012

Tex,

Thanks for the assist on the indentation problem.  I would like to update those here that are not members on ACOR about my visit to NIH, but will wait a bit to see if the other thread gets straightened out.  If it doesn't, I may have to resort to starting a new thread although I'm not sure what to title it since my histology is yet to be determined. The young doctor I saw on my last day said that, based on my questions, I probably know more about translocation xp11.2 than anyone in the office other than Dr. Linehan (which I know is an exaggeration).  Now I have to do more research on SDHC.

Checkers is fine.  I always feel so guilty when I have to board him.  He is so used to a very pampered life, but he is back to his spoiled, mischievous, cuddly self so I guess all is forgiven.

For those who didn't see my post on ACOR, Dr. Linehan was very interested when I said I have gastroparesis (slow stomach emptying) and no identified cause.  This means I can eat very little before feeling very full.  Add to that the problem that I experience severe abdominal pain when I eat solid food, I have lost a lot of weight.  I have been able to stablize it the last few months surviving on ensure and ice cream.  Dr. Linehan has done a lot of research on gastroparesis because he has two family members that were very ill and their problem was completely solved by a gluten free diet.  I think he talked about that more than the cancer.  He emphasized he cannot actually give me clinical advice on that subject because it is not his specialty but suggested I try it for a couple of weeks.  So, now I'm downloading iphone apps with restaurant menus with gluten free items. bar code scanners, etc.

They are very concerned about the dramatic decline in my kidney function, so now I have to get to the Nephrologist to look into that.  If it's not one thing, it's another.

 

Neil,

Thanks for any info you have.  It is funny that you mentioned that book because, when I got home yesterday, I emailed my family to update them on the trip.  My brother emailed back that he and his daughter have been gluten free for a year and it was all kicked off by a book titled "Wheat Belly".  Needless, to say, I will be looking for that today.

Thanks to everyone for your ongoing support.

 

Kathy

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