FOR ALL ON CLINICAL TRIALS (edited name)

[dianne052506]

Gloria,
I can stay on the trial without the Avastin, I just don't believe it will be effective for me. Although I'm apparently stable (CEA is inching up, although still in normal range), since I've had only a little decrease in tumor size in the first 75% of the trial, I don't believe I have the necessary protein for the drug to be effective as a single agent. I had wanted so badly to be a "responder" to the study drug. I'm coming to terms with the idea that it isn't likely, and I must say it's getting hard not to be depressed.
I'm scheduling an apt with my primary onc to get suggestions on where to go next.
Dianne

[skypup]

Dang it, Dianne, I'm just so sorry to read this. It's such a crapshoot, isn't it? I hope we see the day that there is some kind of breakthrough for mCRC. I just hate this stupid disease. (((Hugs)))

[gep]

Dianne,
As you've written before, you've had many months of freedom from folfiri and folfox. That's a big deal. What does CEA inching up mean and was it a good indicator for you? Eli's CEA was only 8 when he was diagnosed at 3B. I suggest that you have a good talk with Dr. Powderly about all of this and let him help you put it all in perspective and discover whether some of this emotional piece is a side effect of the drug?
You've been a major inspiration and support to me over the last few months and I'd like to give some of that back to you. You know you've got to enjoy the present time and not let that free floating anxiety creep into today and rob you of it. Gaelen used to put it so much more eloquently.
Anyway, we're hanging in there with you and we'll keep writing about anything else we hear about.
Gloria

[dianne052506]

Gloria,
Thanks so much for the encouraging words. You're right, I have so much to be thankful for. Last week made 1 whole year since my last irinotecan infusion, and, as far as I know, I am no worse off than I was last April. That, in itself, is amazing. The only other time I was off active treatment since this whole thing began was after I finished the initial rounds of FOLFOX in Feb 2007. In just 6 months, all these "lung thingies" managed to pop up. I went back on FOLFOX, got the lung things stabilized, and bought 2 more years til I had an allergic reaction to oxaliplatin. I had just 3 months on Xeloda and Avastin, before the nodules started to grow in size and in number. Went on inrinotecan and had 2 more years of stability before irinotecan just about gave me a heart attack in the infusion chair. Three months off that, and growth again. I was convinced that only a heavy hitter could keep this in check, so I am amazed that this study drug works at all. Got to keep reminding myself of that.

This depression may be a result of the immune therapy. I will remember to ask about it, but for now, I'm taking inspiration from Brownbagger and all those exercise fiends, and have started a program at the Y. "Stepping Forward" is for cancer survivors, and is a supervised personal exercise/strength building plan. Don't know how many YMCAs have it, but here, you don't have to be a member for the first 7 weeks. I've never called myself a survivor before. To me, the term always implied that I had finished dealing with t. I figure I'm just hanging in there.
Dianne

[Maia]

Dianne, just wanted to give you a big virtual hug. I'm positive you'll figure out what's the next step and will find the right tool to keep going! :

[dianne052506]

I'll pull myself together. I just get so frustrated with having so little energy. I endured 60 some rounds of chemo, and I don't have to put up with that now, but I just get so darn tired so easily. I understand that it's a cumulative effect of all that chemo, plus any side effects of the study drug, but I just feel like without chemo, I should be feeling so much better. More energy through exercise has always seemed an oxymoron to me, but I'm willing to give it a try.
Dianne

[gep]

Dianne,
Glad to hear from you again. Believe me, you have a right to wallow for as long as you like. You've been through a lot. I hope that the exercise helps. Up until the last few weeks Eli was a pilates regular.
Many hugs to you.
Gloria

[dianne052506]

Sorry to have been out of touch these last couple of weeks. I was discouraged when I went for my treatment mid-April because they had to leave out the Avastin again due to high proteinuria. It freaks me out a little because my primary oncologist feels so strongly that Avastin makes such a difference for me. I am hoping that Dr. P. has gone to bat for me with Genentech and has asked if the Avastin can be reduced instead of leaving it out. When I go in for round 13 next week, I will have been off Avastin for 9 weeks, one of the longest periods in my treatment history. Makes me nervous.
So . . . since I have this long time without Avastin, I kept a promise to myself and scheduled a colonoscopy for this Wednesday. (I'm pushing 3 years out on a 2-year call-back plan.) This will be followed by a CT scan on Thursday. I am really hoping that my poor stomach can hold up to all this punishment, and I am hoping that the results will be a turnaround from the last 2 weeks, as they have been filled with one thing after another around the house breaking down and going wrong.
Came home from the treatment office 2 weeks ago, and stripped down to throw all my clothes in the wash like always. My washer started having problems, and it has taken 3 repair visits, and a back-ordered part (installation this coming Friday.)
Two days later, my husband's work laptop started having issues, and he has had to commute into the office rather than working from home since then (new computer due this Thursday, 2 weeks later.)
Two more days, and my home airconditioning unit died. Older model, circuit board approx. $1000, so that meant getting quotes and ordering a new heating/air system. Installation 2 whole weeks after unit failure (some delays due to my not being available this week with the scope and the scan.
With all this, first waiting around on repairmen and salesmen coming and going, followed by medical appts, I will be 3 weeks into my 7-week exercise program at the Y, and will only have 5 visits accomplished. It's been really hard to test the idea that exercise will give me more energy, so I guess I'll just have to join the Y and keep it up to find out!
Best wishes to all.
Dianne

[skypup]

Dianne, your post reminds me of just how tough we are. Cancer plus all the usual life perturbations... We are amazing!

[gep]

I, too, have been out of touch mainly because I've been having a great deal of anxiety. Eli had sir spheres on April 2nd and it's been an up and down recovery. He's got metastasis in his abdominal and para aortic lymph nodes, some lung stuff and the liver. Since the liver was progressing the most after the trial he decided to do the spheres. He has an MRI on May 7th to see if it worked. In the meantime, his stomach has been bothering him off and on and he's had back pain on and off at different back locations. He's lost weight but is still hanging in there. PT helps somewhat with the back. I think stomach stuff is common with radiation and he's still on prevacid. The fatigue really hit him around week 3 but it's been getting better.
Anyway, in mid March I had him call all the sites with the Genentech PDL1 and avastin and Georgetown said if he had archival tissue they could get it tested. We went there two weeks ago and handed over his 2007 tissue. Today we learned that whatever they sent had previously been stained and they couldn't do the test on it. He's going to call Nashville tomorrow because they got some 2010 liver resection tissue that they used and maybe they have some left to send to Genentech? We're both trying to take things in stride but it's hard. We cancelled the Dr. P appointment because Georgetown actually said they'd test his tumor. I feel badly about that, too, but Eli was too exhausted to travel that third week.
I read a blog by someone treated at Stanford who said they're very interested in immunotherapy so I called a researcher on an anti-CD137 (urelumab) trial there today that I had previously read about. We had a long talk. She was very nice. She seemed to indicate that there were some slots now for colon people on that trial. It does require good liver function, she said. This one was mentioned to me by the woman from the immunotherapy trial finder site. It's a Bristol Myers Squib drug. The researcher said there's some Pfizer drug that's there and at Georgetown, too, that they've had some success with but without any current slots.
Not my best day in cancerland today but I'm trying to keep calm because there's still no next stage plan for Eli and it may take a few weeks before we get one.
A guy in my office just started treatment for what I think is pancreatic cancer. He won't say what kind he has except it's a gastric cancer but he's on folfirinox and I think that's the new trend in pancreatic cancer. It's so hard to be at this stage of the game talking to someone just starting out. He also thinks he's got the best treatment by the best doctors because he's got a friend in Philadelphia who's a big surgeon and says he's got the best surgeon and the best doctors, etc. Didn't want to burst his bubble either so I just agreed with him. There's so little control over things that I guess you have to grab on to whatever you can however you can wrap your mind around it all.
Dianne, those things that break when you don't want them to and other bumps in the road take up too much energy.
All my best,
Gloria

[andy21]

Good Slide show to understand Immunotherapies:

http://knowledgebase.definedhealth.net/ ... 202012.pdf

[usopen]

Oh Gloria, was wondering how it was going. Makes me so darn mad, the slow process, like we all have a slew of time while we wait, hoping everyone is doing their job. I guess we have to take a step back, vent, and get back at it.
As far as fatigue, i had one lymph node radiated, and couldn't believe how that could knock you down for a little while and with a delayed effect.Didnt think i'd ever have energy again, but I it did come back. Eli will get back, too.?

[usopen]

Gep - on previous reply was typing on my phone. It inserted a "?" at the end. Sorry. No question mark intended. Eli will get feeling better and have less or no fatigue.

[gep]

No problem, Joan. I guessed it.
Anyway, latest update is that Nashville had tissue from his 2010 liver resection at Evanston Hospital. Now get this - they have to send it back to Evanston Hospital and then Evanston sends it to Georgetown and they get to send it to Genentech. They just never sent the leftover back to Evanston Hospital last January. This is a crazy system. I don't know why Nashville can't just send it directly to Genentech, but it can't be done that way. Nashville will over night it but the delay is driving me crazy.
Gloria

[andy21]

"fcancerIsay", How was your 1st infusion of T Cells?

Any side effects? Please let us know if you feel better or if the Blood work shows improvement.