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lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

Is doing an all day seminar on Kidney Cancer. Below is from the email- this is LIVE - they're on break for about 15 more minutes.

For the first time, we're streaming live, right now, from MD Anderson Cancer Center in Houston, Texas. As part of a beta test with YouTube, you'll be able to watch the entire series of presentations by medical experts for kidney cancer patients and their families, during the National Patient-Survivors Conference. Join us at

www.KidneyCancer.org,

until 4 p.m. today, Saturday, April 14th.

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

LB thanks for the heads up. It's been very interesting so far (although extremely depressing for me personally.)

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

Hey TW - I understand your feelings. MRCC is a beast - and even the research of best and the brightest can only 'cage the beast' - not kill it. I've been watching/listening too - to see if there is anything on the horizon that really looks promising.

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

Yes. There's certainly plenty going on and much on the horizon. Unfortunately, every new door I approach gets unceremoniously slammed in my face.

I can't recall when i last looked at the NCI website but it certainly has some good stuff on it.

foxhd's picture
foxhd
Posts: 1901
Joined: Oct 2011

Damn! I missed this.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

ButI think they'll probably put a link on their website in the near future. I noticed that they have other meeting videos there.

I found it very interesting ..........
It was hopeful in that there is so much research ongoing and planned for RCC treatments.
It was surprising to learn that less than 3% of total RCC patients participate in clinical trials.
And it was distressing to hear that there is still so much unknown about RCC and that they are no closer in identifying something that will kill it!

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

I'm sure you're right and it will be available to everyone online soon.

I think your comments are spot on. On the one hand, there's a huge effort going into research but on the other hand it's depressing to see how far we have to go to get even to square one. It was a revelation to me too to hear that fewer than 3% of RCC patients are entering clinical trials. McDermott was very interesting and upfront on that issue (and generally very good - with even the odd in-joke at the expense of a colleague).

What emerges ever more clearly is just how complex the biochemistry etc is. So it's no wonder that successful treatments have been so elusive.

For me, however, one point was, alas, not at all complicated. The chromophobe sub-type was noted to be "indigent" and very slow-growing and hence usually picked up at a very late stage, which is, perhaps, why it is more prone than clear cell to turn sarcomatoid? (Therefore maybe not a biological issue so much as a statistical artefact?) The prognosis for chromophobe is better than for other cell types. However, from being indigent, if it turns sarcomatoid it takes off like a rocket. So, it was reported in the starkest of words that if chromophobe goes sarcomatoid "it is, unfortunately, incurable".

Can't be much plainer than that!! So I'm in the uncomfortable position of waiting yet again for a few long weeks, poised on a surgical knife edge. Nothing in between - either my surgeon managed to get the job done and i have years of healthy life ahead, or I'm looking at a nasty death very soon now. LIve life, meanwhile, give it my best shot and hope for the best is the obvious message :(
No, no --> :-)

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

LIVE - that's the key - for however long that means. None of us knows when we will die, whether we have cancer or not. So, like you, I choose LIFE - living it the best I can and enjoying it as much as possible. My surgeon told me 11 years ago that the only cure for RCC was surgery. I didn't realize how right he was. At that time there were no drugs approved for treating RCC - and as they finally did come along - and made it through all the testing and finally approvals, I actually believed that they could 'get the job done'. Seems, though, that what my surgeon told me 11 years ago - still holds true today.

TW - you've provided so much hope to others here, and you've maintained a great outlook. Remember, it's OK to let others lift you up sometimes. Praying that your surgeon got the job done and that you'll have many years of FLOGing ahead of you (that's how I describe my golf skills)!

LizB

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

That's near enough true Liz. There were then and there are now unexplained cases of complete remission but, IL2 aside, to all intents and purposes there are still no cures. Nonetheless, holding the process at bay and getting more years of life than used to be the case is a significant victory for medicine.

I get it on the FLOG skills - that your GOLF is back to front! I've just watched two of my friends play past my house and it made me feel a bit more green. We're out tomorrow morning and I'm SO tempted to take my clubs.

Thanks for the good wishes - I'm intending to try to match your durability - so you keep flogging on.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Took a golf lesson once and after hours of analyzing the pro said he had determined my main issue to be loft.

I asked what that meant and he replied;

Lack Of F***ing Talent

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

thank you for smile. needed one today. . .

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

Alice, I had comparatively good news today. I hope your remark only reflected feeling flat and not any bad news for John. Tell him we 4s need to stick together.

Jeff2159's picture
Jeff2159
Posts: 77
Joined: Feb 2012

made me LMAO. 6 weeks and 2 days now and all is well on the golf front. 9 holes of 3par at 4 weeks, 9 holes of regular golf 4 days later and 18 holes at 5 weeks. Golf was mediocre but played wed and shot 76 so I'm finally back, no excuses. Still tired though, cart only and back to back days are down the road hopefully. Go monday for an EBUS to check spots in lungs and enlarged lymphnodes. I thought my stage 1 cancer was going to be a no brainer but when the dust cleared, we are looking at T3a, N1 and G4 clear cell with 55%sarcomatoid element. Texas Wedge, do you think golf is the cause of all this?

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

Jeff, I trust your A is now back in place! Your golf obviously is. The day I shoot a 76 at Carnoustie I'll die - of shock. I'm now 3 weeks from latest surgery so I may try a few holes on Monday. I did a satisfactory 30 minutes on my elliptical yesterday with no probs.

I take it that the investigation on Monday is a biopsy via ultrasound-guided needle aspiration? Is endo-bronchial ultrasound well established over there? I hope the results are favourable.

Golf remains high risk ;-) Michigan now seems OK, aside from the golf courses, of course! I seem to be one of the minority here who have never ridden a Harley. If you're in that category also, then, so long as your middle name isn't Larry or Gar(r)y, the most likely cause of your RCC has to be our dangerous game of golf!

On a more serious note, your case seems highly educational. To be Stage 1 and then declared T3a, N1 M1 must surely be solely attributable to the sarcomatoid element? Is this what you've been informed? Has your staging changed consonantly? Turning sarcomatoid sure is a game changer and we may want to exchange notes in future.

How old are you Jeff and are you on some form of neo-adjuvant therapy? Gail's son Cody has a rare sub-type, as I do (mine is/was chromophobe) but underlying cell type seems to become largely an irrelevancy once it's gone sarcomatoid. Is that your understanding of the matter?

Anyway, to hell with that, let's get on with the dangerous game!!

Jeff2159's picture
Jeff2159
Posts: 77
Joined: Feb 2012

Yes TW, the game was back for a fleeting day. Played 3- 9 hole matches (match play)today with a partner, I teed off on odds, he evens and we would alternate shots in so really it was like only playing 14 holes for the number of swings. I was tired from being out in the sun even though in a cart. Played bad as the day wore on so I sstill have a ways to go. As for the stage 1,that was my initial thought due to the prelim size and my hopes too. And yes it is hoped to get a biopsy per the ebus way otherwise is will be by cervical mediastinoscopy. Amazing what google can do for these big words. 53 yrs old, never smoked or chewed and light drinker mainly wine and beer. Have been fighting Tongue cancer since 1996 and have had at least 10 outpatient surguries for that with my last being nov 2011,dec 2011 and Jan 2012. Long story why 3 in a row in over a short time but thats how I got here as I was to do radiation, they gave me a PET scan to see if my mouth was clear and surprise-- my kidney was not. So the mouth is on hold right now. I was going to go on the everest trial so I had a CT scan this past 12th and they said

IMPRESSION:_
1. Bilateral multiple small lung parenchymal nodules, consistent with
metastasis..
2. Bilateral hilar and subcarinal lymphadenopathy are suspicious for
metastasis. Patchy nodular anterior upper mediastinal soft tissue density
up to 19 mm-unknown etiology.
3. Left para-aortic 13 x 9 mm lymphadenopathy is unchanged..
4. Left posterior properitoneal lymphadenopathy have increased in size,
suggestive of metastasis.

The difficult thing is the unknown as to what do I have? because I want to know what I'm fighting but there will be plenty of answers hopefully this week.

Jeff

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

Well, Jeff, that's quite a history! It's plain enough that you're not only a good golfer, you're also very much the survivor and know how to cope with whatever comes your way.

I hope this week's news is at the better end of the spectrum and doubtless you'll keep us posted about it. However, if you break 70 for 18 holes, please don't mention it ;-)

Jeff2159's picture
Jeff2159
Posts: 77
Joined: Feb 2012

Got out of the hospital yesterday after a one night stay. Had the EBUS ultrasound and had no problems with that (throat not sore) but I guess they forgot to tell me aabout the drain tube out of the side of my chest and the 2 other holes in my back. I knew they were getting samples but it feels like I got run over again. And TW the golf game will take another setback as the suture for the drainpipe comes out in 2 weeks and I'm sure another week or 2 of rest. Well enough of the big stuff on to the minor things. Lymph nodes were clean but the 2 nodules he took were cancerous. I emailed my oncologist to see what type of treatment I may look at and he said a trial of sunitinib with dalteparin. Have a meeting next wed so this may change due to other tests but it looks like I'm getting into the big leagues now. Anyone on this pill or have had it? Side effects? This unknown stuff is for the birds

Jeff

myboys2's picture
myboys2
Posts: 50
Joined: Nov 2011

I watched all 6 hours. They certainly did not say much about the rarer one's like ours mucinous tubular spindle which is supposed to parallel chromophobe and be indolent...NOT right

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

I've yet to make time to check that I've watched all of it. It was impressive, even though depressing for us wasn't it? I hope the statement that sarcomatoid = incurable only applies to underlying chromophobe and not to Cody and Jeff's underlying cell types.

I'm about to pick up the cudgels again in my supervisory role over the board of a credit union and it may have been writing in that field about indigent health care provision that led me to use the word 'indigent' above, where, of course, I meant to say 'indolent'. I'm guessing that the reason Cody's condition is so dynamic is not related to the mucinous tubular spindle cell but because he's partially sarcomatoid. At least he's not predominantly so, like Jeff and myself (and, I think, Nancy - Nana Lou).

Gail, in light of the analysis at the Symposium, I would indeed be interested in the experience of the lady you mentioned (on my SARCOMATOID CHROMOPHOBE thread) who continues to survive with sarcomatoid chromophobe (because I've not found anyone on the various other forums I spend time on). By the way, on that thread, what did you mean when you said "Where was the second I don't see that" ?

I have your email address (from KIDNEY-ONC) but you could simply contact me via the CSN email here. I'd also be intrigued to hear your current thoughts about diet and blood type - like Cody I'm O but, of course, just to be different, I'm O negative = universal donor - must be the only O neg. sarcomatoid chromophobe alive :) Have you ever discussed diet/blood type with Jan Dutcher? What do your professional family contacts in Europe think about it (or am I misremembering)?

Will Cody's IL2 be at the Roosevelt? Has his bodyweight come back up from 130? Looking back, what's the evaluation of the xgeva shot(s) and the Sutent? I guess all your joint hard work has paid off in setting him up for the Il2. I'm so impressed with all you've achieved that I'm curious to know your personal line of country - academic?

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