update

firedude21 said:

I haven't posted for a while

I haven't posted for a while but I have been keeping up with the forum on a daily basis. As usual the fox is right on and I will try to be more of an acitive member.  I may have a slight excuse though. For the past few weeks I have been making numerous trips to UCLA in an effort to get into a trial. I've gone through two kidney biopsies, lab work, ct scan, MRI and EKG. If had a the needles that I've had stuck into me sticking out of me I'd look like a porcupine. I'm not complaining, just sayin'. The trial that I am trying to get into has three arms:   "A" is MPDL3280A (PDL1) + Bevacizumab (avastin)   "B" is PDL1 alone   "C" is Sunitinib  (Sutent). I am hoping to get into either A or B. I would think that they already have enough information on Sutent but maybe not. Anyway, that's what I've been up to lately. Anyone who has been through this process knows that much time is spent sitting in waiting rooms. I must admit that while waiting I checked into this forum many times. There are so many wonderful people here and the support and encouragment I have gotten here is unbelievable. Thank you.

I will post again when I find out if I am accepted into the trial and if so which "arm". If I am not accepted I believe that I will be starting on either sutent or votrient.

All the best to all of you.

firedude21

 

Will be thinking of you while you wait; know that's tough. Once you find out, I hope you start a new thread under the trial name so it doesn't get buried under this thread.  Good luck firedude! Keeping fingers crossed. . .

foxhd said:

Being retired

It is hard for my wife to sit still. She has never watched a movie in her life. No joke. So she hasn't sat down and put her feet up yet. She will probably go back to work when  her mother and I are gone. Me? I love not working. Office politics. Who could miss it?  But I live retired the best I can.  I only watch local news and important big news. .."and I like to sleep late in the morning,..I don't like to wear no shoes, making love to the women, while I'm livin, get drunk on a bottle of booze"..D. Bromberg......I try to do something every day. Figuring that after a few more years, I will have caught up on all the house and yard work. I live optimistically. Realistic or not. If it wasn't for this pain, I'd have a lot done. We work hard our whole lives to have a nice home. But work limits our time there. Now I enjoy my home full time. If I don't get something done today, there is always tomorrow, or next week. No rush. I'm retired!

We've become amateur detectives with the computer. Picking up clues about people.. Yeah, Paula was in the Atlanta area. I think I have a couple of her messages saved. She has never been back on board under her pjune name.  She told me how she just couldn't take the treatment they were giving her. You remember.  I thought of her a lot recovering from my Il-2 treatments. All I could imagine was her going through the same thing. If we had all lived closer, I think we could have helped her. I feel badly that we lost her. Where ever she is.

Paula (pjune127) 12/7/1950 - 4/8/2013

http://www.legacy.com/obituaries/atlanta/obituary.aspx?n=Paula-BOZE&pid=164138158

http://www.ajc.com/news/news/local-obituaries/paula-boze-62-former-holy-innocents-school-teacher/nXHFc/

http://jewishfuneralcare.com/guestbook3.php?funeralID=1882

Alexandra said:

Fox, Angie and Alice - sorry to post this

Paula (pjune127) 12/7/1950 - 4/8/2013

http://www.legacy.com/obituaries/atlanta/obituary.aspx?n=Paula-BOZE&pid=164138158

http://www.ajc.com/news/news/local-obituaries/paula-boze-62-former-holy-innocents-school-teacher/nXHFc/

http://jewishfuneralcare.com/guestbook3.php?funeralID=1882

             

Alexandra,

Thank you.  It's not what I had hoped, but  what I suspected.  Knowing for sure has lifted that gnawing ache that comes with uncertainty.   I can't tell you how many times I've unsuccessfully gone searching for her. Now I can finally put her to rest in my mind.

 RIP Paula. . .

foxhd said:

Jason, the plan

is to never waste time worrying about things. You never get that time back.  I guess what we are saying is, "Every minute spent worrying is not recoverable." It is how we live. Look at what Ron has done. From diagnosis, to surgery, to treatments ,to side effects, to having plans in place and sticking to them. In one of Ron's videos he says that when some of his caregiver team tells him that motorcycles are dangerous. He looks at them and says, while holding up his infused arm, "What about this?" He also talks about if having a choice of risking his life in the most important racing event of the year, or dieing from cancer, which one would he choose? Live on and enjoy.  For me, I'll admit that it is hard to make concessions when I have to. Like I miss exercising and running. I miss my motorcycle too. I'll just do other stuff until next year. We consider complications as temporary. It is fun having people like that on this forum to talk with. Stick around a few years.

Fox,

I think Harley riders have a reputation for being tough guys and that you are.  Actually, I should say Harley drivers.  I was a rider, but on the back. I know the IL2 trip sounded horrible, but at least the torture was temporary.  I sure hope this latest development is temporary.  It sure would be nice to at least know what you are dealing with.  Thank you for your dedication to this board and for sharing your story and, of course, the karma.

 Alice,

It is great to see you posting.  I've often worndered how you and John were doing.

 Alexandra,

I'm so glad you found that information.  I tried hard last year to find something.

 Keep up the good fight all,

Kathy

Alexandra said:

Fox, Angie and Alice - sorry to post this

Paula (pjune127) 12/7/1950 - 4/8/2013

http://www.legacy.com/obituaries/atlanta/obituary.aspx?n=Paula-BOZE&pid=164138158

http://www.ajc.com/news/news/local-obituaries/paula-boze-62-former-holy-innocents-school-teacher/nXHFc/

http://jewishfuneralcare.com/guestbook3.php?funeralID=1882

             

Alex, thank you so much for the information and the effort you put forth for us! Boy, did i have a big cry for the second time this week!  I see Paula died in April and it is not sitting with me too good. I am almost wondering if she took her own life. I know this sounds weird and probably not the case.  But she wrote to me the last time about four weeks before her death. She told me she was seeking out other treatment but just didn't feel like fighting. She was very discouraged, but at the same time she was encouraging me to go get check because i was having issues myself. She told me not to be afraid.  Her mets at the time was just a small spot or two. This brings me to question what happened to her. She was already off of the failed treatment for a few weeks by then. Tell me if I am wrong anyone who remembers.  So how did she suddenly pass away?  Questions that i know we won't find out.

Alex, how do you do it? How smart you are!  I didn't even see a mention of the JUNE part in her name. Thank you so much!  I wish i had your brain! I hope you are feeling well.

This brings me to a very important point.  I think that everyone on here is like a big family. Ok, we come and go, come and go.  But I think i am gonna stick around because i miss you all so much.  And, I want to be there for you all.  So, my point is that we need to have a secondary person to contact for each other. This way if we don't hear from someone for so long we can check up on them.  Or, each person designate someone to come to the boards to give us an update. Is this a good idea?  Can we start a link and leave our name and and alternate email addy or is there another way?  What does anyone suggest on what we can do?

About Ron, he texted emailed a few weeks ago saying the pain in his leg/foot was bad.  They did not know what it was.  He wrote on Sp that there were issues.  I mentioned the clot and he was supposed to find out. Since then i didn't see a post where he knew for sure what it was.  Neil, did you see any on SP from him confirming a clot?  Another mystery.  

Ron and Paula, two great friends will be missed....I don't know how TW knew, but he sure did have that feeling she was gone.

Alice, let us know what the doc says, i am thinking it is a marginal error.  Glad you are doing ok. Missed you!

Hi Guys,

I thought I would check in on the reunion! I'm still here, I just keep failing drugs, so I don't post a lot since I can't offer a lot of good news to the newbies.

So sad to hear the news about Paula. Ron's death was also hard to take. I had wriiten him a PM, had it completed, then deleted it because I didn't want to be bugging him, should have sent it.

I just got booted out of a trial last week for exceeding 20% growth. Like John, Alice we had conflicting info from the oncologist and the RECIST measurements, but in the end it exceeded 20%, so I'm looking for something else. I've failed IL2, Votrient, Inlyta and the trial combo of Inlyta and TRC105. I don't know what's next.

I'm still relatively healthy. I get out on the bike some. I can still do 20 miles but it's just riding, nothing like the miles and the way I used to do it. Plus I have my motorcycle, which Ron blessed as a "better Gold Star" I believe was the way he put it.

It's great to hear from everyone. Keep fighting!

Love to you all, David

Now that you have been rolling along how about a new pic i have been seeing this one for 2 years.

alice124 said:

David,
Sorry to hear you

David,

Sorry to hear you were booted from the latest trial. That sucks. When will you see oncologist again to discuss next step?

 Did your oncologist provide any explanation for the difference in the hospital scans and RECIST report?  In John's history, the reads have always been pretty much identical and then a 6% difference this time.  Baffling.  . .

Anyway, it's good to hear from you.

 

 

 

Hi Alice,

Great to hear from you. I've met with my oncologist and we're working on some things. I don't think option 1 is going to happen. Another option is looking at trials ar Sarah Cannon Research Institute in Nashville. That's a 10 hour round trip for me but it's the closest source of trials for me here in Mississippi. Yes, that's where Paula went for her trial. We'll see what they have. The 3rd option is to move on to another VEGF or mtor drug.

The scan confusion deals with how RECIST measures tumors. My oncologist gave me one figure that dealt with growth from baseline but RECIST uses growth from the smallest tumor size since being on the trial. I had shrinkage early on, so they went back and used those figures and I was over the 20% limit and off of the trial.

The roller coaster keeps on making laps and we all have season passes! Gotta keep fighting and having fun!

Glad to hear you are doing well! Hello to John.

David

angec said:

Limelife, unfortunately we

Limelife, unfortunately we found out that Paul passed away last April, 2013.    She is  missed!  Hope you are doing well..

Angec i am doing well as i am hoping you are also doing well.If i am correct i remember your Mother as the person diagnosed with RCC and i hope she is doing well.It is hard for me to read about some of my members losing their battle  to cancer when i had such high hopes for them and yes it sucks.

DMike said:

Hi Alice,Great to hear from

Hi Alice,

Great to hear from you. I've met with my oncologist and we're working on some things. I don't think option 1 is going to happen. Another option is looking at trials ar Sarah Cannon Research Institute in Nashville. That's a 10 hour round trip for me but it's the closest source of trials for me here in Mississippi. Yes, that's where Paula went for her trial. We'll see what they have. The 3rd option is to move on to another VEGF or mtor drug.

The scan confusion deals with how RECIST measures tumors. My oncologist gave me one figure that dealt with growth from baseline but RECIST uses growth from the smallest tumor size since being on the trial. I had shrinkage early on, so they went back and used those figures and I was over the 20% limit and off of the trial.

The roller coaster keeps on making laps and we all have season passes! Gotta keep fighting and having fun!

Glad to hear you are doing well! Hello to John.

David

David,

Please keep us posted on your next step. But keep fun in the equation. (Knowing  you as I do, I think that's automatic.)

And thank you for the explanation on the differences in the scans. That differentiation wasn't clear to me.