Hi alanrobertross,

Does using PV10 under compassionate use still mean that only one tumor can be injected per 28 days or are the guidelines more flexible? I asked the research coordinator at one of the trial sites but she has been slow at getting back to me.

Thanks!

Good luck Kenny!

Julie, I am so glad to hear that Dr. Kemeny has done wonders for Pete! This club is truly incredible for all the opportunities it brings about!

Thank you all for your kind words, encouragement and prayers! We are still waiting to hear back from MSKCC to see if Dr. Kemeny believes she can help my mom. I am incredibly anxious and nervous and hopeful. Hoping to hear back soon and will keep you all posted, I appreciate prayers and well wishes!

This is awesome, DK! It's going to be an awesome resource not only patients and caregivers, but also families that have questions but find themselves on the short end of the information stick. Thank you!

Hello friends, thank you all so much for your input! I went ahead and sent my mom's records to MSKCC today, they are just waiting on the original colonoscopy report and they said they would be discussing her eligibility with the nurse and Dr. Kemeny. The referral specialist I talked to sounded conce...

Hi Pulkania, I hope that your hubby has good results with Stivarga with no major problems. Keep pushing your onc to help you find trials or pursue the Xilonix trial if you're able to. I've learned you have to be your own advocate and not rely solely on the doctors. Thank you! I will keep you posted ...

Well, not experts, but you know what I mean 8) So the plan is for my mom to go back on Oxi. We never looked into the HAI pump before because I didn't know about it and our oncologists never mentioned it. But now I'm wondering, since she has a systemic chemo option, would she be eligible for an HAI p...

Thank you Ritz75

Pukalania, my mom was on it back in 2011 but only did three rounds because of low counts. Hopefully we can get a good response this time around. Did you look into the Xilonix trial? It has a placebo arm but if he gets the drug it may be of some help so you can go back to oxi!

Hi pukalania,

Your post gives me hope that my mom will see shrinkage with Oxi. How long was your husband on Oxi the first time he used it? And how long after that did he go back to it? Did he return to it after Irinotecan?

Saw the doctors today and learned that over 50% of my moms liver is involved in tumors and that's what's causing all her symptoms. He will be putting my mom back on Xeloda and Oxaliplatin. She had used oxi back in 2011 but her old oncologist stopped it because of the side effects but apparently back...

Mentioned this to Dr. Fisher today at Stanford and he said he hadn't heard of it. He and his fellow did say they would look it up though. He did note that none of them were at academic centers, we'll see if we hear anything back.

Is the name for Rose Bengal as a chemotheraputic agent PV10? Did some quick googling and found this trial.. is this the Rose Bengal?

https://clinicaltrials.gov/ct2/show/NCT ... V10&rank=1

Hi Lee, I talked to her oncologist last night and he said to go in on Monday so he can check her out to see if she needs diuretics or if something else is going on. The doctors when she was admitted were attributing a lot of her problems to the allergic reaction to Stivarga she had a few weeks ago. ...

My mom was scheduled to begin this trial on Wednesday but was unable to because of her hospitalization. Will be meeting with her MD on Monday and hopefully he will let us know when she can start. Thanks for posting this DK, hoping for good results!