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CT Scan Tomorrow

JackieP125's picture
JackieP125
Posts: 55
Joined: Jan 2012

I am now 6 months post-op and scheduled to have a full body CT Scan tomorrow evening. As you guys know, anticipating these scans is very stressful. Just wanted to ask you to cross your fingers and please keep me in your prayers. God Bless.

Bonngo's picture
Bonngo
Posts: 10
Joined: May 2012

Jackie,

I will pray for you most definitely that everything will turn out just fine! Remember we are strong and have come through one of the biggest hurdles of our lives. Please let us know how you make out.

Bonnie

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

Will keep you in my thoughts and prayers Jackie. You're in good company with Fox and Tex; now we're going for 3 for 3 good reports.

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

Jackie,

Hope you are prepared to do the NED HAPPY DANCE biker style (whatever that is) 'cause I see nothing but good news in your future. Good vibes headed your way.

Gary

matchframe
Posts: 58
Joined: May 2012

I just had my 6 month full CT Scan a few weeks ago. I too was stressing out about it, but when the Dr. said that I was Cancer Free, it is amazing what simple words can do in lifting the weight off the shoulders. I will be praying for you!

Bill

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

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

DMike's picture
DMike
Posts: 238
Joined: Nov 2011

Jackie,
Good luck on your scan. We'll all be thinking about you! I have my 1st 6 month scan at the end of June, so I can relate. Best wishes!
David

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

headed your way!

LizB

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

Prayers from Atlanta, GA. I'll be thinking about you. I just "celebrated" the one year anniversary of my diagnosis. I have had about 6 CT scans in the last year. Having another June 26th. I think the more you have, the more desensitized you become. Hang tough. I feel good news is on the way!

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

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.

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

You can put caution in your optimism, but I'm not! That's wonderful news.

I can't say I'm surprised. Anyone who has followed your posts know your fight is fearless and despite setbacks, you've sprung forward like the energizer bunny. When I hear your daily workouts and regime, I'm constantly thinking "this man has stage 4/grade 4 cancer???"

Your radiologist and oncologist may be saying cancer, but your body has never given in and obviously is not in agreement. I'm so glad that drive and fight is now being reflected in the test scores!!!!

YES!!!!!

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

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's picture
alice124
Posts: 860
Joined: Mar 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Glad to hear that John is making solid progress. I'm sure you'll both be delighted with the reports, videos etc on the success of the MDX trials. My money is on the trial drugs as the explanation for the improvement in John's shoulder.

I thought about a new thread but don't like new threads being started pointlessly all the time. [No feedback from the CSN team so far on our suggestions for improved forum structure.] I thought this was the most appropriate thread to tag onto. Also I don't want people to make too much of my results. NED from such a dismal prognosis is improbable and it might be a downer for members if I show a host of mets at my next scan in a few months time.

In addition, I'm not feeling that great, for reasons I'll detail in the reply I'm about to send to Gary.

Please give John my best wishes.

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

Is just the cautious version of NED if you ask me. This is the first follow-up scan you have passed and I believe there will be many more!!! You are near and dear to all of us here and this news is sure to lift everyone's spirits.

How is your wife's cousin doing? My wife and I just lost yesterday, a lifelong friend who was diagnosed with ovarian cancer when I was having my nephrectomy, she was a very special lady and fought a very courageous battle.

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

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's picture
jhsu
Posts: 78
Joined: Sep 2009

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Yes, Jon, that acronym (US services? - not known over here) is apt!

{At this point I went into a long philosophical disquisition about anxiety, the analogy with bereavement, changing survival rates and other topics but my computer has let me down and lost it all and I'll spare everyone by not trying to re-create it!]

By "post scan anxieties" were you meaning awaiting results, or the period of adjustment after getting the results?

Agreed that the game is not over until it is over.

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

As you know Tex i had a reacurance or a bilateral or whatever you want to call it tumor discovered in my remaining priceless kidney on 04/10/10 then if you remember i had RFA to removed it on 05/02/12,just got my CT SCAN reults on 06/06 and all clear and by the way i am also a tough guy so take that, but besides that congrats on your latest SCAN

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

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.

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

You are right Tex it was 10/11/11 and yes i agree with you on one point about luck and that is everyone here is lucky from the perspective that we enjoy LIFE more than anyone else and with that said come on Jackie bring on that good news scan report

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

TW, Mike, Gary, & anyone reading,

You're right. We are lucky. We all are lucky every day we open our eyes and breathe. Everyone who is here is here for a reason. For some unknown reason, the man upstairs has determined it's not your turn. So it's your job to determine why you're still here and make sure you answer that gift with a full life and a "not taken for granted" life.

Just feeling numb and sad. I just returned from the funeral home of a a friend and former neighbor, someone I should have kept up with but didn't. Now it's too late. He was healthy and had no warning his life was about to be over. Someone walked into his store and robbed him and then killed him.

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

Jackie - Sorry for the downer. Sure hope to hear an upbeat report from you very soon. I, for one, am looking forward to a mood changer!

Fox-If you're reading, we're waiting positive info from you too!

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

Alice, since you asked...... First of all., My heart goes out to everyone on this board. What a sad place to have to make friends. However, the understanding, compassion, and ability to identify with each others life changing process is proof that no one is alone in this battle. Whether renal cell cancer or any other health issue the reality of ones mortality hits home. And hits hard. Some of us have experienced death and dieing as a career. Others have not experienced it at all. For those ,We offer as much support as we can. This journey takes many turns. Most of us have to take the ride and not know where it will lead us. Remaining positive and optimistic is the only active influence we can control. This mind set is not only good for ones well being but maybe more for their loved ones. There is not a single parent who wouldn't give their own life for their child so he or she could grow grow up. The same concept applies. Our families depend on our strength. We are all family here. That's why we post.
The unfortunate history of renal cell cancer is that it has been unbeatable. But now, great progress is being made. If there was no hope, this board would have a different focus. There has been much in the medical journals, newspapers, internet and tv news during this past month regarding the huge strides in defeating this cancer. It is promising.
I for one was not expected to beat this disease. Metastatic disease multi organ involvement left me with a poor prognosis. But science offered an option. Unproven, but promising. A clinical trial. Few agree to being a research rat. Most only want approved therapies. Some of us felt we had little to lose.So we signed on. We now know there have been a few deaths due to respiratory complications. Probably an issue of dose management and having an immune system concentrating on eraticating the tumors..I myself, have had some respiratory issues. But I have also been on the highest dose of MDX-1106 for months. Dosage will be perfected with time.
As a result of this trial, I have experienced exceptional recovery. My oncologist spent some time with me this week. We reviewed my progress and scans. From having 18+ tumors that were identifiable, I am now battling only about 4. The others are GONE! This doesn't mean that I have won the battle. It does mean that I will probably not expire from kidney cancer. Another disease may be around the corner, but we'll deal with that when the time comes. The point is that there is hope for all. Opportunities to participate in ground breaking medicine are available to many. Investigate available clinical trials. They are posted on the internet. Challenge your physician to assist you. There is hope. Don't be afraid of this disease. And don't ignore it. Ones life has already been changed. Stand up and face it head on. Be strong for yourself and for your loved ones. Perhaps ones recovery will be dependent on having fought hard and then being the right candidate when the next big thing comes along.Be your own advocate. Or as many here are, be an advocate for the one you love. God bless you all. FLY. Fox loves you.

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

What an awesome and inspiring speech. I would like to stand up and aplaud. I think I will!! Thank you for all the support you give to all of us here. I only wish I was as articulate as you and Tex and Alice and all the rest. I dont always respond on here but I visit every day and read all the new posts. They help keep me grounded. Thank you everyone

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

Judy, you took the words out of my mouth! I'd just read Fox's message on the "Robotic Assisted..." thread and thought what a typical combination of rock-hard common-sense and originality of expression it represented. I decided not to post a comment to that effect because it wouldn't have added anything to what we have all already seen, namely the great depth of understanding and judgment he's accrued in his years of professional dealings with fellow human beings.

Then I read the post here and felt I had to acknowledge it but you beat me to the punch and I couldn't have put it better than you have done. Fox's posting above would make a fitting prologue to his book which, if he writes it, would probably enter the canon of uplifting works in this medical domain of lowering clouds shot through with his special kind of sunshine.

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Dont hold back everyone here could care less how articulate you are,heck look at some of my posts and so far everyone has put up with me ,so please type away to your hearts content.

littledarlin's picture
littledarlin
Posts: 102
Joined: Mar 2012

Your works of hope, compassion and courage are so very inspiring..They help so many of us here no matter what situation or health issue we are facing..There is always hope..no matter how hard we are hit..

Thinking of you and all of us tonight..

God Bless us all...

littledarlin

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Before i was hopefull for you Fox now i am starting to really believe in you finally there are drug therapies that might not cure us compltely or then again maybe they will cure us ,i am starting to believe cancer patients might atleast be able to manage our diseases the same way people with AIDS do and be able to live many years with our disease.I agree this is a sad place but is also a place of HOPE and SUPPORT,i dont mind being critisized here when my comments are a little off ,Tex comes to mind when i think about that last comment also i dont mind getting advice from the people here,as far as people who support me friends etc.i am thankfull for thier support but as for those same people who do not have cancer or have someone they love who has cancer,for them to give me advice i would rather suck on a sour lemon,but i always smile and say thanyou.

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

Mike - If I've said anything to offend you, I apologize. The last thing in the world I want to do as a member of this board is to alienate anyone. But I am one of the ones "who do not have cancer."

Even though I don't have cancer, my husband does have it and I feel his pain and frustration. I'd like to think that allows me to empathize with others in this situation, but perhaps your is a valid point I should consider before hitting my keyboard. I promise to stay more attuned to your viewpoint.

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

As usual i screwed up again,sorry Alice i need to go over my posts before i post them,what i meant was people dxed with cancer or their caregivers i am so sorry if i hurt your feelings,maybe you can give me a free pass this time and i promise to review my posts more carefully before i hit post comment,again Alice i am so sorry

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

No biggie Mike. Free pass granted!!!

I respect your opinion and just wanted to be sure I hadn't posted something inappropriate. Now I can stop searching and rereading my old posts trying to recognize my mistake(s). Appreciate your getting back to me.

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

FOX,

Outstanding commentary and wisdom. Thank you as always. You continue to be our sunshine sprinkled with a few rainbows.

How is the melanoma situation? Stitches out? And are you still on the antibiotics? Is the MDX dose going to be lower when you begin your next round or have already started? Sorry to be so inquisitive, but it's what happens when you become a ROCK STAR!

With your report we're two for three in great reports (yours and Tex). Jackie, we're hoping your report provides sweeps.

littledarlin's picture
littledarlin
Posts: 102
Joined: Mar 2012

Jackie I just wanted to let you know I am praying and pulling for you..
Hoping you are doing ok? Please update when you're ready or when you can..

God Bless...
littledarlin

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

.......I think we have unintentionately hi- jacked your thread. Forgive us . Please update your status. I'll move the current discussion.

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