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Heartfelt congrats. . .Texas_wedge said:NEDDANCE
Thanks folks. [NEDDANCE def. - celebration of cancer survival.]
We thought summer took place in the UK the day before yesterday and wouldn't be seen for the Olympics. Yesterday in our bit of Scotland was cool, cloudy and wet. But today the sun is shining [and particularly so in my household - I'd like to ascribe the upturn in my prospects to having led a blameless life and being a perfect patient. However, I guess, in truth, it's really attributable to favourable genes and a dose of good luck with this, oh so unpredictable malaise].
Anyway, my aim now is to try to consolidate my position with continued good diet, meditation and plenty of exercise - off in an hour or so to play golf for my former home club's team against my current home club (Carnoustie) on the Championship Course at Carnoustie, in sunshine and on perfect greens!! - not a bad precursor to coming home to a greatly relieved wife, in time for TV coverage of the spectacular Olympics Opening Ceremony taking place this evening in my home town.
For those of us in the thick of battle, please remember that even for us pT4, Stage 4, Grade 4 patients, success is possible. There are many routes, including Fox's (guts and hard work) and mine (good luck) but most routes involve being prepared to learn as much as possible and to fight for oneself as the main member of the defense team. Beating "the statistics" and having plenty of good years ahead is still on, even if you have extensive mets and a lot of pain, like Fox, or sarcomatoid and necrotic histology, like me. Hang on and go for the gold!
I believe your NED is attributable to explanations far beyond those you note Tex. This post is your #1068 post. 1068 postings represent your reaching out to thousands by answering questions, making recommendations, interpreting results, making suggestions for future treatments, or simply educating. And that’s just on this board—phenomenal!
I strongly believe that when you’re hit with a devastating diagnosis, you are immediately a part of a bigger galaxy. It calls attention to some aspect of your life that needs attention. Your health obviously is one area, but I believe it extends beyond the physical, something even deeper. Perhaps your diagnosis is a way to draw attention to something you have neglected in your life or to your unshared gifts/talents that would have a positive impact on others. And I believe how you respond to that bigger picture can dramatically influence your outcome. By reaching out to others who are confused, lost and feeling alone HEALS YOU. It fills the emptiness of soul that we all feel from time to time when giving back is not a routine part of our life. I’m not saying that you haven’t given back in your life; I’m just saying it’s evident to me and many others on this board that you were needed here and you responded.
I believe your NED reflects your gift to the many out there—myself included-- that have benefitted from your wisdom, your compassion, your patience, your humor and your shoulder.
You follow in the footsteps of big shoes on this board, those of Iceman, Gary, Liz, Fox, and many others who know who they are. As a beneficiary of all you’ve given, I thank you from the bottom of my heart. And my congratulations on a very much deserved NED!0 -
[ ]alice124 said:Heartfelt congrats. . .
I believe your NED is attributable to explanations far beyond those you note Tex. This post is your #1068 post. 1068 postings represent your reaching out to thousands by answering questions, making recommendations, interpreting results, making suggestions for future treatments, or simply educating. And that’s just on this board—phenomenal!
I strongly believe that when you’re hit with a devastating diagnosis, you are immediately a part of a bigger galaxy. It calls attention to some aspect of your life that needs attention. Your health obviously is one area, but I believe it extends beyond the physical, something even deeper. Perhaps your diagnosis is a way to draw attention to something you have neglected in your life or to your unshared gifts/talents that would have a positive impact on others. And I believe how you respond to that bigger picture can dramatically influence your outcome. By reaching out to others who are confused, lost and feeling alone HEALS YOU. It fills the emptiness of soul that we all feel from time to time when giving back is not a routine part of our life. I’m not saying that you haven’t given back in your life; I’m just saying it’s evident to me and many others on this board that you were needed here and you responded.
I believe your NED reflects your gift to the many out there—myself included-- that have benefitted from your wisdom, your compassion, your patience, your humor and your shoulder.
You follow in the footsteps of big shoes on this board, those of Iceman, Gary, Liz, Fox, and many others who know who they are. As a beneficiary of all you’ve given, I thank you from the bottom of my heart. And my congratulations on a very much deserved NED!
Thank you Alice, that's very charming and gracious. I'm feeling a bit low at the moment so your message was very welcome.0 -
InspirationTexas_wedge said:[ ]
Thank you Alice, that's very charming and gracious. I'm feeling a bit low at the moment so your message was very welcome.
Tex,
If it helps, your story inspires me. Woke up in the dumps this morning and am fighting my way back. This helped. Keep it up, for yourself and the rest of us!
Vin0 -
New Dayvdm13 said:Inspiration
Tex,
If it helps, your story inspires me. Woke up in the dumps this morning and am fighting my way back. This helped. Keep it up, for yourself and the rest of us!
Vin
Hi Tex,
I ditto everything Alice said. The last few weeks I have often felt frightened, confused, depressed, angry, etc. and you have helped to calm, reassure, inform, and inspire me. I always look forward to your posts. I'm sorry that you are having a down day. At the risk of sounding trite, remember that it will pass and tomorrow is a new day. Feel better.
Kathy0 -
NED...NED...NED!!!Texas_wedge said:Balance
Glad to be here Gary, in every sense, and I'm getting closer to your status - clinic this afternoon gave the pronouncement of my multi-disciplinary team that I'm now NED. Looks as though I will, at least, complete my three score years and ten in a few weeks time and, with continuing luck, my horizon may be a good deal further away!
{Post appearing above appeared to have miscarried - sorry to be so tedious.}
T,
Been gone for a few days, you can't imagine my joy at learning of your NED, tears are actually rolling down my cheeks! Your continued battle and dedication to helping others has inspired so many here, your outcome is well deserved.
Just one of life's triple bogies after all,
Gary0 -
Being one's own advocateNewDay said:New Day
Hi Tex,
I ditto everything Alice said. The last few weeks I have often felt frightened, confused, depressed, angry, etc. and you have helped to calm, reassure, inform, and inspire me. I always look forward to your posts. I'm sorry that you are having a down day. At the risk of sounding trite, remember that it will pass and tomorrow is a new day. Feel better.
Kathy
My thanks to Vin and Mike (on another thread) for your good wishes.
In the last few days I've been on an interview panel to appoint a project worker whose role will be to recruit and train citizen advocates and match them to vulnerable individuals. The people whose interests we endeavour to serve have very apparent needs. It's a totally different matter with many of us. The very fact of our being on forums such as this is testimony to our being articulate and directed, even if we sometimes feel we aren't! However, when it comes to dealing with RCC we are not so different from my organisation's independent advocacy clients.
There are two reasons. One is the perpetual problem of having to deal with the 'gods in white coats', not all of whom are good communicators. The other problem is the preternatural complexity of RCC which is an obstacle not only to our own understanding but also that of our medics, who are often equally out of their depth in this particular quagmire. Consequently, we have to be aware that we need to be our own advocates.
Fox is an icon for his superb attitude, his endurance and his well-merited success in the trial he is in but our cheering for his progress shouldn't distract us from an important message he has for us, which may be even more valuable - about being one's own advocate.
On Friday, in his message above headed "another opinion", he gave some useful advice but then said:
"The point of all this is that I was not aware of all options available to me. Not even from other oncologists. So keep up your [s]earch".
His doggedness in not giving up and leaving no stone unturned is why he's been able to show us the way. If he'd acquiesced in the defeatist attitude of his doctors he'd probably have been dead by now. He kept looking out for himself and he found what he needed when none of his docs had found it for him.
So to you, Kathy, I say this is the time to keep asking all the questions you need to. Happily, you're not in the position Fox was in but there are answers I'd want to get. You told us
"I ran into the surgeon on the way out and he said he understood my wanting to know all of these things, but that it would not change anything. Oh well. I guess that’s the end of that."
I can understand that the social situation was one in which you couldn't pursue your questions at that point. However, I think there's a lot of difference between an expert saying 'For what it's worth, the answer is X but it won't change anything because of A, B and C.' as opposed to that expert saying 'It wouldn't make any difference, so I'm not going to answer your question(s).'
You are concerned about rate of growth of a possible recurrence. It can be very fast. (Between my neph. in December and a scan at end of February, my second tumour had developed from invisible (and therefore undetected) to 1cm. and in another 4 weeks to a hard nodule of 2.5cm.) But, I can't believe that your upcoming US scan is to look for anything RCC-related just a couple of weeks after your op.
I'm guessing it's to investigate your malabsorption mystery. There's a mind-blowingly complicated relationship between the immune system and the absorption and processing of food. You've been taken off meds, doubtless because of queries about your kidney and liver functions but I'd bet that those functions haven't been compromised by your surgery, but by the absorption problem that needs to be solved and which I suspect accounts for your earlier unexplained weight loss.
In your situation, I'd be wanting to stay on top of the investigation and ask for the most thorough explanations it's possible to get from your docs so you have the clearest possible picture of what you're dealing with. Let's hope it turns out to be a simple matter that can be easily sorted and puts you on the road to normal eating and a full and speedy recovery from your surgery. I hope you get some good news out of your appointment tomorrow.0 -
NEDgarym said:NED...NED...NED!!!
T,
Been gone for a few days, you can't imagine my joy at learning of your NED, tears are actually rolling down my cheeks! Your continued battle and dedication to helping others has inspired so many here, your outcome is well deserved.
Just one of life's triple bogies after all,
Gary
Dressed like that and calling me a ned!!!
Still, glad to have you back Gary ;-)0 -
NED --> SADTexas_wedge said:NED
Dressed like that and calling me a ned!!!
Still, glad to have you back Gary ;-)
It's a bit cruel to go from 'NED' to nearly dead in 9 weeks. (Must be some kind of record and, if so, I hope no-one else breaks it.) Just shows how rash it is to be complacent with the sneaky disease.0 -
UN - NEDTexas_wedge said:NED --> SAD
It's a bit cruel to go from 'NED' to nearly dead in 9 weeks. (Must be some kind of record and, if so, I hope no-one else breaks it.) Just shows how rash it is to be complacent with the sneaky disease.
Tex,
I wish I had some magic words of wisdom or encouragement for you. I'm sure this must be discouraging and emotionally draining for you and your wife. Lest you should be tempted to throw in the towel, I will remind you of the advice you gave me earlier. Referring to Fox, you said
"His doggedness in not giving up and leaving no stone unturned is why he's been able to show us the way. If he'd acquiesced in the defeatist attitude of his doctors he'd probably have been dead by now. He kept looking out for himself and he found what he needed when none of his docs had found it for him."
I know you know this, but I am praying for you and just can't imagine you not being here. I refuse to let my thoughts go there. Keep fighting the fight.
Kathy0 -
Hi TexasTexas_wedge said:NED --> SAD
It's a bit cruel to go from 'NED' to nearly dead in 9 weeks. (Must be some kind of record and, if so, I hope no-one else breaks it.) Just shows how rash it is to be complacent with the sneaky disease.
Not sure whats going on with you and of course i hope every thing is fine with you,i guess i can assume you are being challenged again.Like i have said before this disease will sneak up on you and sucker punch you,i know i have been there and ican remember you suggesting that i keep my chin up.There were a few weeks back in april and may of this year i needed valiums in order to cope with my situation but then i decided not to let this disease cause me to live in fear and anguish so by june i had thrown those pills away and since then i have held my chin up.0 -
UN-NEDNewDay said:UN - NED
Tex,
I wish I had some magic words of wisdom or encouragement for you. I'm sure this must be discouraging and emotionally draining for you and your wife. Lest you should be tempted to throw in the towel, I will remind you of the advice you gave me earlier. Referring to Fox, you said
"His doggedness in not giving up and leaving no stone unturned is why he's been able to show us the way. If he'd acquiesced in the defeatist attitude of his doctors he'd probably have been dead by now. He kept looking out for himself and he found what he needed when none of his docs had found it for him."
I know you know this, but I am praying for you and just can't imagine you not being here. I refuse to let my thoughts go there. Keep fighting the fight.
Kathy
Thanks, Kathy, will do. (Posted this 12 hours ago but evidently it miscarried.)
You've done well Mike. I don't know that I'll want to swear off the pain meds. completely. To the extent that they enable me to continue with accustomed levels of activity unabated, I think they'll serve a worthwhile purpose. Had a great day at the Dunhill Links Tournament today, although 5 1/2 hours is a bit much for a round (the 4-ball I was accompanying got held up a bit by the game in front, where Dan Quayle was somewhat slow - but of course he under-studied doing that!).0 -
Hi TexasTexas_wedge said:UN-NED
Thanks, Kathy, will do. (Posted this 12 hours ago but evidently it miscarried.)
You've done well Mike. I don't know that I'll want to swear off the pain meds. completely. To the extent that they enable me to continue with accustomed levels of activity unabated, I think they'll serve a worthwhile purpose. Had a great day at the Dunhill Links Tournament today, although 5 1/2 hours is a bit much for a round (the 4-ball I was accompanying got held up a bit by the game in front, where Dan Quayle was somewhat slow - but of course he under-studied doing that!).
the meds i took were for deppresion but now i am not taking any meds,you are a thin man in good physical condition,mind if i ask why do you feel the need for pain meds0 -
Pain medsLimelife50 said:Hi Texas
the meds i took were for deppresion but now i am not taking any meds,you are a thin man in good physical condition,mind if i ask why do you feel the need for pain meds
No great mystery Mike. I have an extremely aggressive new tumour (grew from 0 to 2.5 cm in 3 months and then to 5 cm in a further 3 weeks and that was 9 days ago, so who knows what size it is now? It's invaded my abdominal muscles and is becoming steadily more painful.0 -
sending you all the best...Texas_wedge said:Pain meds
No great mystery Mike. I have an extremely aggressive new tumour (grew from 0 to 2.5 cm in 3 months and then to 5 cm in a further 3 weeks and that was 9 days ago, so who knows what size it is now? It's invaded my abdominal muscles and is becoming steadily more painful.
Not sure how to express my appreciation for the support you've showed me. You are in my prayers.0 -
I wishTexas_wedge said:Pain meds
No great mystery Mike. I have an extremely aggressive new tumour (grew from 0 to 2.5 cm in 3 months and then to 5 cm in a further 3 weeks and that was 9 days ago, so who knows what size it is now? It's invaded my abdominal muscles and is becoming steadily more painful.
Man, I wish that I could do something to help. Sometimes golf and jokes aren't always that important. Do whats right. You are well informed, and will know what to do.0 -
doxorubicin and gemcitabineTexas_wedge said:Pain meds
No great mystery Mike. I have an extremely aggressive new tumour (grew from 0 to 2.5 cm in 3 months and then to 5 cm in a further 3 weeks and that was 9 days ago, so who knows what size it is now? It's invaded my abdominal muscles and is becoming steadily more painful.
Just wondering if you've come across this article(case reports).
18 patients with advanced sarcomatoid renal cell cancer treated with a regimen consisting of doxorubicin, 50 mg/m2 and gemcitabine, 1,500-2,000 mg/m2, administered every two weeks with growth factor support (A/G). Result: two complete responders are alive, disease free at 6+ and 8+ years. 5 partial responses and two patients with stable disease of more than 6 months of duration.
Ref: Long-term survival of patients with sarcomatoid renal cell cancer treated with chemotherapy.
Dutcher JP. Nanus D.
Medical Oncology. 28(4):1530-3, 2011 Dec.
Let me know if you'd like to read the full text.0 -
SorabenibClaraW said:doxorubicin and gemcitabine
Just wondering if you've come across this article(case reports).
18 patients with advanced sarcomatoid renal cell cancer treated with a regimen consisting of doxorubicin, 50 mg/m2 and gemcitabine, 1,500-2,000 mg/m2, administered every two weeks with growth factor support (A/G). Result: two complete responders are alive, disease free at 6+ and 8+ years. 5 partial responses and two patients with stable disease of more than 6 months of duration.
Ref: Long-term survival of patients with sarcomatoid renal cell cancer treated with chemotherapy.
Dutcher JP. Nanus D.
Medical Oncology. 28(4):1530-3, 2011 Dec.
Let me know if you'd like to read the full text.
Safety and activity of sorafenib in different histotypes of advanced renal cell carcinoma.
Procopio G. Verzoni E. Gevorgyan A. Mancin M. Pusceddu S. Catena L. Platania M. Guadalupi V. Martinetti A. Bajetta E.
Oncology. 73(3-4):204-9, 2007.
CONCLUSIONS: The results confirm previous ones reported in the literature concerning the efficacy and the safety of sorafenib as second-line treatment in patients with RCC. In addition, they disclose the hypothesis that sorafenib could be effective also in patients who underwent multiple previous treatments and in those with histology different from clear cells such as papillary, chromophobe, Bellini ducts, sarcomatoid and mixed forms0 -
SpeechlessTexas_wedge said:Pain meds
No great mystery Mike. I have an extremely aggressive new tumour (grew from 0 to 2.5 cm in 3 months and then to 5 cm in a further 3 weeks and that was 9 days ago, so who knows what size it is now? It's invaded my abdominal muscles and is becoming steadily more painful.
Their are times in our lives when things can happen to us or people we care about that can have a profound effect on us that can last the rest of our lives,well this is one of those times.Texas when i first read this latest post from you it left me speechless and worried for you,i hope so very much that something can be done to rid this tumor from your body0 -
Trials and treatmentsLimelife50 said:Hi Texas
Not sure whats going on with you and of course i hope every thing is fine with you,i guess i can assume you are being challenged again.Like i have said before this disease will sneak up on you and sucker punch you,i know i have been there and ican remember you suggesting that i keep my chin up.There were a few weeks back in april and may of this year i needed valiums in order to cope with my situation but then i decided not to let this disease cause me to live in fear and anguish so by june i had thrown those pills away and since then i have held my chin up.
adman, Fox, Clara, Mike - thank you all for your kind words which are much appreciated, not least by my Daughter (who 'phoned tonight to tell me she loves me, just in case things move rapidly in the wrong directon) who looks at these threads occasionally.
Clara, thanks for the links and yes, I really would like the full text of Jan Dutcher's recent paper.0 -
TW, regarding J. Dutcher's paperTexas_wedge said:Trials and treatments
adman, Fox, Clara, Mike - thank you all for your kind words which are much appreciated, not least by my Daughter (who 'phoned tonight to tell me she loves me, just in case things move rapidly in the wrong directon) who looks at these threads occasionally.
Clara, thanks for the links and yes, I really would like the full text of Jan Dutcher's recent paper.
I've just sent you a PM0
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