CT Scan Tomorrow

foxhd said:

stress
Jackie, the scanxiety just helps keep the muscles tight. Good luck! We're in your corner!

Texas_wedge said:

CT scan
Jackie, unless I've missed it while away, you've not told us whether all the prayers worked for you. We were each having CT scans on Friday and I got a telephone report from my Urologist this morning so I wondered whether you've got your report yet. We're looking forward to hearing good news from you. You're 6 months post-op so a clear scan would be very encouraging.

I'm 6 months post first op but, having had an immediate 'recurrence', I'm only 2 months post my second op so I need to be cautious in interpreting the outcome thus far - it isn't the done thing to go from stage 4, grade 4 to NED in one fell swoop so I'm not counting my chickens. However, the Consultant Radiologist's report talks, in guardedly cryptic language, of "No conclusive features of any disease" which must be good. They're following me up very closely because of my dismal pathology (worst stage and grade plus 'metastatic', extensively necrotic and predominantly sarcomatoid, i.e. extremely aggressive) and will set up another scan fairly soon so as not to take the eye off the, ball but so far so good.

I haven't been anxious - it's counter-productive anyway - but am very aware that this is a critical phase for me, particularly since (surgery aside) there's no known treatment for my pathology. Your situation is much more favourable so I hope you've not been getting too uptight in advance of what will surely be good news.

Texas_wedge said:

Thanks Alice. I hope my good news gives a fillip to my fellow warrior John. You may remember that he and I were diagnosed at the same time, with similar profiles - stage 4 grade 4 with sarcomatoid elements, although he was clear cell and I chromophobe.

Have you had any feedback on possible delayed benefits that might accrue from the IL2? I think the MDX-1106 and Votrient trial will be what John really gets substantial payoff from. You'll both also value the fellow feeling, note-comparing and support you're able to get from Chris and Wendy. I hope John's shoulder is improving. If Fox's experience is anything to go by, then there's good reason to expect it will.

alice124 said:

It did give him a boost--he is thrilled too!

We still have the question on IL2 latent effect on our list to ask Dr., but we haven't actually seen Dr. Hammers for five weeks or so(?). His research nurse/team pretty much handles John's medications/infusions/regular appointments, etc. since the start of the trial. And right now, I'm happy with the attentiveness they give to John's condition. We don't actually know when we will see Dr. again, but we certainly sense that he monitors John closely through his assistants. I guess right now we're just going through the process and in a wait and see mode until the scans start (two weeks from now).

Overall John has experienced diminished pain in the shoulder and I can see an improvement in his overall energy and appetite. We're not sure if the lessened pain is a reflection of better pain management or the trial meds. We both are thinking positively and believe it's the MDX1106/Votrient. And, yes, comparing notes with Chris and Wendy, is a great resource for us.

May I make a suggestion? Assuming you just answered "yes," I'm asking you to start a new thread with your scan info. I'm worried that all the others on this Board might miss the results of your latest scan. News like this must be shared!

Texas_wedge said:

NCFOAD
I'm hoping that's right Gary. As you say, this is the first time I've "passed". First CT found the RCC 9 cm. and the second found a 'satellite' (which seems likely to have been residual from the nephrectomy) while the third has found nothing of obvious significance to cause concern. It appears that I had no mets at dx and none at 2nd CT - merely a tumour that developed (damned fast!) from a residuum of the primary and consequently I'm non-metastatic (albeit I'd been labelled as a metastatic case after the second scan).

Two interpretations of the present state of play - I'm a tough guy who has successfully kicked RCC out OR I'm a lucky guy who was caught just in time before mets began. The sensible conclusion is obviously the second one. (I can hear a third from some quarters 'You're an ornery bugger who could be guaranteed not to follow any normal pattern!'). I think a more conservative appraisal is called for, namely: so far so good, but a myriad of mets may show up at the next scan. The cheerful note is that my Urologist says that re truly 'metastatic' disease, the relevant starting date is that of my nephrectomy and not the second op and so I'm clear for 6 months since the nephrectomy early in December.

I was sorry to hear that cancer has deprived you of yet another dear friend - you seem to have been extremely unlucky in that regard. I fear we may soon be in the same boat. Colin, my Wife's cousin, was given weeks to live when he came to GB from S.A. at the turn of this year. He seemed to be doing OK in London but melanoma mets to liver lately extended to his brain and he's had several seizures. When we got there, he was paralysed from the neck down and unable to communicate. We had several harrowing days at his hospital bedside, not knowing whether he could understand anything we were saying to him or whether he recognises anyone at all. That is still the position and further treatment is impossible now.

We were going to share the driving home from London to Edinburgh but my Wife slept most of the way, so wiped out by the strain of it all (and not knowing the outcome of the scan I had just had) so I drove up in heavy rain and heavy heart, all the way. The following day I dropped my Wife at the bank where she has been on a contract as a software architect and later heard on the TV that there is a major Legionnaire's Disease outbreak affecting the whole of S.W. Edinburgh and she has been working at the epicentre of that area. 4 factories with cooling towers are the most suspect possible sources and I had been driving her past three of them on the way to the bank. So, I'm also now on the lookout for headache, cough and confusion. There are currently upwards of 70 cases and one death so far. Fortunately the only people thought to be at serious risk are older males with compromised immune systems (gulp! - I guess that's me!)

So, all in all, I'm not feeling as cheerful as my scan news should have made me, but I can't complain (and if I did it wouldn't do me any good anyway!!).

jhsu said:

SNAFU
Don't know if it is appropriate to use the acronym to describe post scan anxieties for the guys like us? Don't beat me up, I'm from out of the country.

Hey, be vigilant everyone, the game is not over until it is over.

Jon

Texas_wedge said:

Not alone
I know you're a tough guy Mike and I'm delighted to hear your great results. RFA was the right choice, it seems. (By the way, I think you got your nephrectomy year wrong!). Incidentally, I wasn't suggesting that I'm tough but rather that it looks as though maybe I've been lucky.

Now let's hope to hear of a good outcome from Jackie's scan.