To TW
Comments
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Prognosisfoxhd said:Prognosis
Tex you are of course correct. Stage 4 kidney cancer patients are living on a prayer. But since I don't pray, I guess I haven't pissed off enough of the gods yet. Which goes to prove something. But I won't over think it. I'll just keep moving forward as you do. If there is nothing else to share with others, I hope they learn to not dwell on the final bell. Far to much to do first. Unlike you and Neil, I have decided to enjoy every minute as a retiree. I so much enjoy not being to academic or clinical. I may be getting stupider but sometimes ignorance is bliss. Things may change after my next rounds of IL-2 but I will be so miserable for the next couple months that I don't want to even think about it yet. If I could share my time left with you, I would. I should be gone already so my longevity has only been borrowed anyway. Thank You whoever has been looking out for me. (still a fair amount of survivors guilt going on.) But..... we can't spend time on negative thoughts. Can we?.... I have next week to live free. If only I could cure my slice... Maybe I'll just put on my leathers and ride. Fall foliage is beginning and southern New England is beautiful! I can get to the beach or mountains and be home for supper. It kind of helps having both so close because time is so precious. Now if Alex was within reach.........who would need golf clubs.
Trevor - I am in awe of your dedication to research and helping others under these very difficult circumstances. You have done so much already! I don't know enough to make any helpful treatment suggestions outside of the PM I sent to you. I hope to have half your dignity and courage when I piss off the man upstairs. Stay strong.
Fox - it's only 600 miles from Toronto to New England and I had 137mph speed limiter on my car removed and 50hp added to the stock turbo. We are talking 4 hrs drive assuming that cops are asleep or eating donuts. Just say the word.
Lotsa' lov,
Alexandra, RCC groupie
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Brainstormingangec said:TW
I have posted someTW
I have posted some info for you on SP not too long after your post about resuming Votrient at 200 mgs. Did your enzymes (liver) come back to normal as of yet? Mom's Onc did say he would try once more at 200 mgs. if it was a go. That would be the last time and the least amount you can or should use. (Even though we know of someone who has used less). OK, I did a little brain storming. I would even start the Sutent as another resort. It was offered to you in the beginning and what have you got to lose? Just because no other drug has been tried doesn't mean another drug shouldn't be tried. If there were no trials to say for sure it didn't work then who is to say it won't work? Am I missing something here?
Check also this link here from SP.. Is evormilus an option for you?
https://www.smartpatients.com/sb_posts/search?utf8=%E2%9C%93&q=sarcomatoid
TW, i would take a chance and use the 200 mgs. if the choice is yours. I am sure you even have some left at home, no doubt. How about the 37.5 of Sutent? I just feel like they have given up when they should be offering something more.
In the link above they are going to use Sunitinib/Gemcitabine or Sunitinib for his sarcomatoid RCC.
Is Cabo an option?
Here is another article i found.
http://www.archivesofpathology.org/doi/full/10.1043/1543-2165-133.11.1857
I hope you don't mind that i have posted the ideas and info above, but giving up can't be an option. In any case, my prayers and heartfelt thoughts are with you. Are you home yet TW?
Love you,
Ange
Ange, thanks for your unflagging solicitude and the links. As I'd already explained I'm afraid it's too late, as things stand, for any options to be even theoretically possible - my histology is so astonishingly aggressive that I'm now too ill to tolerate any drug or be allowed into any sort of clinical trial. When my Wife comes over in an hour or so's time I'll be basically going out to die at home - UNLESS - and there's always an unless until the end of the journey!
It's been we'll said (Dr. Agus) :
"Some people live to the day they die; others die the day they are diagnosed."
I hope nobody is in any doubt about which camp I'm in.
We continue to have a plan, which gets ever simpler, and we'll see how it plays out.
I'm going to draw heavily on SP now in a very personal and concrete fashion that will give rein to the merits of the participatory medicine revolution. You never know - the beauty of my sort of situation is that we're in unknown country where nobody can predict what might happen.
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Just want to see how our TWTexas_wedge said:Differences in survival
Well, duly re-installed at home and feeling much better than we need to remember that I truly am. Seated at my PC after grocery shopping on the way home and getting us a light evening meal and keen to catch up a bit more with everyone.
Ange and Clara, I can only offer you one guarantee viz that I won't go any sooner than I have to. You are two of our most valiant carer/supporters who give a great deal to every member of the forum so please don't think of stopping unless you have to for some reason. Remember that we have a wide spectrum of patients with widely divergent prognoses and so it's inevitable that some will go as time passes. I've been hard hit by the passing of two fine men recently in Chris Battle and Tony Johnson, major figures on the now defunct ACOR KIDNEY-ONC site and a key precursor of the magnificent re-incarnation in SP (for those who don't yet know, that's the Smart Patients website that's leading the charge in the new model of participatory medicine and the patients' power to expedite progress on both research and treatment fronts alike - particularly commended to those who are most ill and those who are more academically inclined.)
Those of us who were stage 4 (and even more so if also grade 4) at dx are bound to pop off a bit, or a lot, sooner than those who aren't. However, how much sooner is to a surprising extent down to us. Fox and I were sensibly anticipated to hand in our dinner tickets a couple of years ago but we've resisted so far. Hell, what's life worth without a bit of a challenge!
Anyway, I've too many substantial projects going on, a lot of things I want to get written and too much curiosity to assuage. I want to stick around to be certain that Alice is going to be fine (and that's not to the exclusion of John and our other 4 x 4 companions and our whole band of warriors); I want to follow the Fox saga for as long as I can and I want to continue to enjoy my series of debates with Neil and Gary's unapproachable talent for jokes, hilarious stories etc, all shot through with the insights of a real philosopher of life.
So, going to keep going on to study what inspires, see what transpires, and find out when this body expires. Love to everyone, T.
Just want to see how our TW is doing. We miss you and hope that the good news is Great and the bad news is not too bad! We are thinking of you and praying for you and hope to hear from you soon! I do hope your wife (Charlie) is ok. Please send our love to her and Justine. A big hug out to you all! Forever on our minds!
Love to all!
Angela
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TW
I haven't been on in some time and I am very sorry to see that you have had the recent setbacks. I remember we were diagnosed and joined the board around the same time and right away your insight and information was very comforting to me. I wish you the best and I am saying a prayer for you as I write this. You have helped a lot of people here and I know all of us would love to return the favor.
Take care my friend,
Wayne
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How are you?cww71964 said:TW
I haven't been on in some time and I am very sorry to see that you have had the recent setbacks. I remember we were diagnosed and joined the board around the same time and right away your insight and information was very comforting to me. I wish you the best and I am saying a prayer for you as I write this. You have helped a lot of people here and I know all of us would love to return the favor.
Take care my friend,
Wayne
Haven't heard from you for a while now TW. I hope you are still doing well.
Love, C0 -
Our Dear TrevorClaraW said:How are you?
Haven't heard from you for a while now TW. I hope you are still doing well.
Love, COur Dear Trevor... sending big hugs to you and praying for you! Thank you for everything you have done for us all! I have never met anyone like you and for all you have taught me, I am truly grateful! I love you, Trevor!
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I miss TWangec said:Our Dear Trevor
Our Dear Trevor... sending big hugs to you and praying for you! Thank you for everything you have done for us all! I have never met anyone like you and for all you have taught me, I am truly grateful! I love you, Trevor!
I miss TW.....I miss seeing his avatar.....I miss reading his posts......I miss TW dearly0 -
Sending Good Vibes To TW!ClaraW said:I miss TW
I miss TW.....I miss seeing his avatar.....I miss reading his posts......I miss TW dearlySeveral people have written to me (even ones I haven't communicated with before) to ask about our friend. His daughter was to post something to keep us updated, but I am sure she has her hands full. I hope she doesn't mind if I bring others up to date.
For those that might not know, he as of last Friday, and since we last heard on Tuesday, was in the hospital with Kidney failure. He is not doing well! Let's all pray feverishly for him and see if he can pull through this. We don't know what we can do, but want to do something for you our TW! All we can do is to offer prayer and send good vibes! We miss you sooo much, our hearts are heavy!
Love you Trevor!
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Update!angec said:Sending Good Vibes To TW!
Several people have written to me (even ones I haven't communicated with before) to ask about our friend. His daughter was to post something to keep us updated, but I am sure she has her hands full. I hope she doesn't mind if I bring others up to date.
For those that might not know, he as of last Friday, and since we last heard on Tuesday, was in the hospital with Kidney failure. He is not doing well! Let's all pray feverishly for him and see if he can pull through this. We don't know what we can do, but want to do something for you our TW! All we can do is to offer prayer and send good vibes! We miss you sooo much, our hearts are heavy!
Love you Trevor!
Thank you Angec for letting us know! I am so sad to hear such news! I will join you in praying for Trevor and his family!
Djinnie
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Sending my love and good wishes to Trevor and his familyangec said:Sending Good Vibes To TW!
Several people have written to me (even ones I haven't communicated with before) to ask about our friend. His daughter was to post something to keep us updated, but I am sure she has her hands full. I hope she doesn't mind if I bring others up to date.
For those that might not know, he as of last Friday, and since we last heard on Tuesday, was in the hospital with Kidney failure. He is not doing well! Let's all pray feverishly for him and see if he can pull through this. We don't know what we can do, but want to do something for you our TW! All we can do is to offer prayer and send good vibes! We miss you sooo much, our hearts are heavy!
Love you Trevor!
Hoping for a miracle and TW's safe return home.
Love,
Alexandra
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Sending prayers, white light,GSRon said:Greeesh... sending big time
Greeesh... sending big time prayers... and any strength possible.. and a lot of love...
Ron
Sending prayers, white light, good thoughts, whatever I can come up with....to our TW, praying and hoping he will pull through this latest "bump in the road"! Please, TW, you are needed here!! And loved beyond your imagination!!!
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pracers, thoughts and healingTillieSOK said:Sending prayers, white light,
Sending prayers, white light, good thoughts, whatever I can come up with....to our TW, praying and hoping he will pull through this latest "bump in the road"! Please, TW, you are needed here!! And loved beyond your imagination!!!
pracers, thoughts and healing light
sarah
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Holy Moly, and all that cr**srbelle1 said:pracers, thoughts and healing
pracers, thoughts and healing light
sarah
Tex,
Where have I been when all this has been going on. Let's just say dealing with cancer in other family members. Personally, I'n not ready to read an obit on you!!! Our journey together has been from afar -and I still like the Oban dew, even though it's not on my recommended beverage list. You ARE an inspiration and I know you'll continue to be one, no matter what or when.
You would envy me with. Before the public golf course across from my office closed, I could have walked 20 feet out the door, pulled out a 4 wood and hit a ball onto a green on the back nine of Kentuck Golf Course.
But this journey is about you; we all feel like we've been on it with you...sharing your best and worst.
The one thing that my cancer seems to have brought to the forefront is to enjoy the journey. Some of the things I've stopped to watch include:
-the daily trip along the road to town and observing the leaves fall off an errant apple tree. The leaves fell, the apples fell, but one lone apple hung on for several weeks until it, too, dropped to the ground.
-the boarding stable nearby, after rain had flooded the pasture. The horses were let out and they took off, racing across the field, splashing water all over themselves and each other.
-a Red Tailed Hawk, taking off from his perch on the power line and diving over the cattle field. When I got close enough, I could see he was trying to chase away a crow that had intruded on his hunting territory.
For now, be like the hawk, and drive out the intruder.
Love ya.
Donna
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Trevor, just thinking of youdonna_lee said:Holy Moly, and all that cr**
Tex,
Where have I been when all this has been going on. Let's just say dealing with cancer in other family members. Personally, I'n not ready to read an obit on you!!! Our journey together has been from afar -and I still like the Oban dew, even though it's not on my recommended beverage list. You ARE an inspiration and I know you'll continue to be one, no matter what or when.
You would envy me with. Before the public golf course across from my office closed, I could have walked 20 feet out the door, pulled out a 4 wood and hit a ball onto a green on the back nine of Kentuck Golf Course.
But this journey is about you; we all feel like we've been on it with you...sharing your best and worst.
The one thing that my cancer seems to have brought to the forefront is to enjoy the journey. Some of the things I've stopped to watch include:
-the daily trip along the road to town and observing the leaves fall off an errant apple tree. The leaves fell, the apples fell, but one lone apple hung on for several weeks until it, too, dropped to the ground.
-the boarding stable nearby, after rain had flooded the pasture. The horses were let out and they took off, racing across the field, splashing water all over themselves and each other.
-a Red Tailed Hawk, taking off from his perch on the power line and diving over the cattle field. When I got close enough, I could see he was trying to chase away a crow that had intruded on his hunting territory.
For now, be like the hawk, and drive out the intruder.
Love ya.
Donna
Trevor, just thinking of you and want you to know you are in my prayers. Just think, this time last year we had a whole post dedicated to you and full of well wishes for your 70Th. That day is coming soon again! We want to keep you at the top of the boards, hence this post! Love you Trev, always in my heart!
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T, your birthday is justangec said:Trevor, just thinking of you
Trevor, just thinking of you and want you to know you are in my prayers. Just think, this time last year we had a whole post dedicated to you and full of well wishes for your 70Th. That day is coming soon again! We want to keep you at the top of the boards, hence this post! Love you Trev, always in my heart!
T, your birthday is just around the corner! Hang in there my friend0 -
Praying for Good News!cran1 said:Hang in there TW.
Hang in there TW.
Dear Wedge,
You were one of the first to make me realize that my life was not over, but just going in a different direction which would call for a lot more fight from me to get it back on track. You were so kind and I was a mess! Just scared to death and new that things were only going to get worse. You made me realize not to ask for trouble but to sit back relax and be happy for the good days, fight the bad ones, and love them all! I am doing well and I have even been able to finally get a great handle on the anxiety that I was having such a rough time with, I guess what I am trying to say is thank you! You helped me through one of the most difficult times of my life with your soothing words and wonderful advice. I am wishing and praying for only good things for you and hope to hear soon that things are going well for you!
Love and only prayers for good health to you!
Brenda
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