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ClaraW
Posts: 64
Joined: Jun 2012

I don't believe you understand how much you've touched our lives. My sister-in-law and I have read through each and every one of your posts. We cannot thank you enough for the amount of knowledge and comfort we have gained. Your threads are like your arms reaching out to help all of us who are seeking desperately for help. Your selfless and relentless drive to help others who are more fortunate than yourself as far as RCC is concerned is heroic.

I know your treatment will be effective, and you will thrive and enjoy life for many many more years to come, however I am still sad. Sad because I cannot think of a way I can be of any assistance to you.

If I were Behrman, I’d paint you the last leaf.

angec's picture
angec
Posts: 626
Joined: Mar 2012

Clara, sorry to read about your SIL... I know you were very close.   My prayers are with you! 

 

Thanks for asking about Mom, she just turned 81 a few days ago and is doing ok.  She is a strong woman and a trooper, I wish I was more like her!  She had good scan results last month and I pray it continues to hold for her.  She is on 200 mgs of Votrient and the side affects are tolerable for her, more than that and it was too much to take.  

Love to you Clara! <3 :)

 

ClaraW
Posts: 64
Joined: Jun 2012

I am so very glad to know that your mum is doing well on Votrient, Ange. I just want to emphasize TW's words "where there is life, there is hope". Your mum is definitely a trooper and I am sure she is one lucky lady to have you as her daughter and advocate.

Love,
Clara

angec's picture
angec
Posts: 626
Joined: Mar 2012

Thanks so much Clara!  Let's all stay positive and keep the hope alive!  I hope you are doing well!

Ange

Proud_DD_of_TW
Posts: 3
Joined: Oct 2012

Hello friends,

 

just to let you know dad's had the stent put in successfully and is drowsily returning to his normal self.

 

love and best wishes to you all,

 

Dee-dee (I think that's what Fox called me? :-D )

foxhd's picture
foxhd
Posts: 1954
Joined: Oct 2011

Never a dull moment is there? Thanks for keeping us up to date....Dee Dee. We all wish the best. Fox.

angec's picture
angec
Posts: 626
Joined: Mar 2012

Thanks, lovely daughter of our TW! I said several long hard prayers for your dad and then came to the board hoping to find some info.  You made my day!  I am so glad he is out of surgery.  Did he get his normal Scottish color back yet? ;)

All my love to you and your parents!

Ange

Eskimo lily's picture
Eskimo lily
Posts: 43
Joined: Aug 2013

That is amazing news to hear about TW! So happy!

Djinnie's picture
Djinnie
Posts: 818
Joined: Apr 2013

Thanks for letting us know! What fantastic news! Wishing Tex a speedy recovery:-)

 

Best wishes

 

Djinnie 

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

I wish I could say I "knew" it.. but I did truly feel that something good would happen...   Thank you very much D.D...!!

(can you feel the love..?? )

Ron :)

Alexandra's picture
Alexandra
Posts: 1246
Joined: Jul 2012

It was so thoughtful of you to update all your dad's friends and admirers. I hope TW is back home and up to golf and writing very soon.

TillieSOK's picture
TillieSOK
Posts: 245
Joined: Jul 2013

Best news I've heard all day!!  Yay!

Djinnie's picture
Djinnie
Posts: 818
Joined: Apr 2013

It is so good to see you back Tex! How are you doing? 

Djinnie x

ClaraW
Posts: 64
Joined: Jun 2012

TW, is your jaundice resolving? Hope your LFTs are heading in the right direction and you can get back onto Votrient soon!

NanaLou
Posts: 69
Joined: Oct 2011

I just want to let you know I have enjoyed all of the research you have done and shared with all of us. I have learned so much from reading your post. Thank you for sharing with us. Know that I am Praying for you ,Thinking about you and that I Love you. keep posting we are all pulling for you. 

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

Thanks, Nancy, it's comforting to feel appreciated and that my efforts to help us all get better informed aren't a waste of time.

Miashelle1's picture
Miashelle1
Posts: 40
Joined: Aug 2013

x x x

ClaraW
Posts: 64
Joined: Jun 2012

How are you doing TW?
Love, Clara

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

Not to beat about the bush, Clara, I'm not doing very well - but I'm feeling fine quite a lot of the time. In a way this is about where we came in - when you started this very comforting thread, in turns poetic and charged with generous sentiments. Foxy, you've just said on another thread that members can keep the good reports coming but I'm afraid I can't hold my end up at this point.  I fear there's a risk that the general enthusiasm for believing we can all get better will undo what I tried to achieve the other day in imploring my friends here not to compare their own status with mine and get into a downer when they see me go.

Your analysis was brilliant, Clara, but unfortunately its correctness doesn't entail any prospect of return to Votrient - Votrient is now a closed book for me, the more's the pity. 

The position now is that there is still no drug known that does anything against my histology and I'm now too ill to be admissible to any kind of trial, even if one ever appears that I might otherwise qualify for.  So, predictably, with no surgical methods, radiotherapy, chemo or other drug therapy to deploy and no possibility of any clinical trial, we're into pure palliation, aiming to buy a few more weeks of acceptable quality life and hoping that something might turn up. 

One never knows until the end - the fact that no drug has so far been found that can handle my pathology doesn't underwrite the proposition that no such silver bullet is possible. We may have such a drug already that hasn't been tried on it.  After all, in the whole,  world-wide medical literature only about 20 cases of my histology have been reported so far and so far as we know I'm the only case of widely metastatic, extensively necrotic and predominantly sarcomatoid Chromophobe RCC still alive - so none of the newer drugs has so far been tried out on it. Votrient did seem to be working for me!

 

angec's picture
angec
Posts: 626
Joined: Mar 2012

TW :(  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.  

https://www.smartpatients.com/forums/1-conversations/topics/1876-husband-has-metastatic-renal-cell-carcinoma-with-sarcomatoid-tendencies#sbposts-18186

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

 

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

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.

 

ClaraW
Posts: 64
Joined: Jun 2012

Dearest T,
I am so hoping you could go back on votrient! Is your LFT not coming down? Oh T, I wish a drug will become available to you soon. In the meantime can you take something at a reduced dose to bridge gap?
You cannot leave us T!! None of us will let you leave!!!!
We love you dearly.
Clara

ClaraW
Posts: 64
Joined: Jun 2012

T, I sincerely feel that I've known you for a long time. You've been my kindest friend and my mentor in this journey. I love you and I can't let you go :(

srbelle1
Posts: 123
Joined: Jul 2013

have not had an opportunity to know you since I am relatively new here; I respect what you are sharing and the description of your particularly aggressive cancer type.

my husband is having a nephrectomy tomorrow and I am terrified; your taking the time to describe your cancer and distinguish it from other types is truly an act of grace and unselfishness.

by so doing, you are sharing hope for others at a time when you are I'll and facing the end of your treatments with all that this means.

i want to thank you and hope to see you posting here; thank you for keeping it real.

sarah

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Outstanding news! Your bravery is an inspiration TW.

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

Just in case anyone reads cran1's message and thinks my latest news is all good, I should point out that the postings here aren't in strict chronological order at this juncture!

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Indeed TW. I apolgize for the order of these things. Hang in there T.

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

cran1 - thanks for the good wishes and there was nothing for  you to apologise for - you weren't out of time order - I was out of time sequence when I wrong-footed you by using the facility the CSN s/w has for manipulating these things.  I wanted to respond as closely as possible to Clara's message so I hit the response button on her message and repeated the first words of her subject title to optimise the likelihood that my reply would be close to hers instead of appearing as the last message, right after yours, where it 'should' have appeared.  So your message, which you wrote before hearing my bad news just unfortunately looked as if it came after it!

A robust sense of humour is a great asset for us all and in a macabre way, the 'I'm about to die' - 'Wow, great news, outstanding!'  was fairly funny!

angec's picture
angec
Posts: 626
Joined: Mar 2012

TW, I am with Clara.  I don't think I will be able to come back to these boards if I do not see your name there, daily, as always!  I am not ready to give up!   We all have so many questions at this point and i know you are not able to answer them, like about your liver numbers improving.  I hope you don't feel too bad at the moment!  Remember what i wrote to you in the PM last week. This is not the end at all!  I hope to speak to you again when all is said and done!  You know what I mean! ;)  

I want to send my thoughts and love out to your dear wife and daughter and let them know we are here for them and thinking of them! I love you Trevor and I am very sad at the prospects at the moment... UNLESS!

Your friend always,

Angela

 

PSS.. remember the 100 mg dose.

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

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.  

angec's picture
angec
Posts: 626
Joined: Mar 2012

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

BDS's picture
BDS
Posts: 102
Joined: Aug 2012

Well unfortunately, I have been behind on reading/writing posts on CSN.  A week ago me, my wife and my daughter jumped out of a perfectly good airplane. What a rush! To use your previous post quote from Dr. Daivd B. Agus "Some people live to the day they die; others die the day they are diagnosed."  Without getting too sappy, it is with great concern and sorrow that I now read about your current condition. Your knowledgeable contributions here on CSN have touched many lives and my thoughts and prayers are with you. You have left lifelong impression on all of us here on CSN. I think I can speak for all of us, when I say, even though none of us will probably ever meet face to face know that you have friends here on CSN. - BDS   

foxhd's picture
foxhd
Posts: 1954
Joined: Oct 2011

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.

Alexandra's picture
Alexandra
Posts: 1246
Joined: Jul 2012

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

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

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

ClaraW
Posts: 64
Joined: Jun 2012

Haven't heard from you for a while now TW. I hope you are still doing well.
Love, C

angec's picture
angec
Posts: 626
Joined: Mar 2012

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!  <3

 

ClaraW
Posts: 64
Joined: Jun 2012

I miss TW.....I miss seeing his avatar.....I miss reading his posts......I miss TW dearly

angec's picture
angec
Posts: 626
Joined: Mar 2012

 

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!

Djinnie's picture
Djinnie
Posts: 818
Joined: Apr 2013

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

Alexandra's picture
Alexandra
Posts: 1246
Joined: Jul 2012

Hoping for a miracle and TW's safe return home.

Love,

Alexandra

ConnieSW's picture
ConnieSW
Posts: 611
Joined: Jun 2012

My thoughts are with you and your family.  What a force you are.  Wish I could know you in person

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Greeesh... sending big time prayers... and any strength possible.. and a lot of love...

Ron

TillieSOK's picture
TillieSOK
Posts: 245
Joined: Jul 2013

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!!!

srbelle1
Posts: 123
Joined: Jul 2013

pracers, thoughts and healing light

sarah

donna_lee's picture
donna_lee
Posts: 421
Joined: Feb 2009

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

 

angec's picture
angec
Posts: 626
Joined: Mar 2012

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! <3

ClaraW
Posts: 64
Joined: Jun 2012

T, your birthday is just around the corner! Hang in there my friend

aussieqld
Posts: 13
Joined: Sep 2013

Get well soon 

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Hang in there TW.

danbren2's picture
danbren2
Posts: 195
Joined: May 2013

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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