At Chance's MRI on 9/11, edema was found. Chance had been getting increasingly dizzy. Within the last couple of weeks he left his job on short term disability because he had several times he referred to as his brain not working. He could not put words together to explain he was having a problem comprehending or communicating. His position was in high stress software sales, so it was probably the last thing he should have been doing, but of course he wanted to keep working as long as he could.
His NO suggested he increase the Decadron to 4mg a day (he was finally down to 1 mg a day).
A worrisome MRI happened once before, last spring, so we prayed we could wait 30 days and have him retested, but his case went to the UCSF tumor board on 9/17 and it was agreed edema was caused by progression and that his tumor was now inoperable because of it's location - near language and memory.
The board suggested Avastin and CCNU.
Based on what I've learned these last few months, I had no problem saying NO!
Stephen gave me some trials to consider, two at UCSF and two at Duke. All but one required some sort of surgery, so we went with the least invasive: Toca 511 at UCSF. Chance will be the first participant in Cohort 7, which means they will use an infusion in hand or arm, rather than placing the virus directly into the tumor. They say it has been proven that the virus gets to the brain regardless of where it is given. He will have the virus infusion over three days starting next Monday. A month later they start a dosing with an anti-fungal that becomes a powerful chemotherapy agent to kill dividing cells. He will take the anti-fungal pills every six weeks for four cycles. The beauty of this particular trial is that it has a continuation arm.
For those unfamiliar with Toca 511, there is a lot on YouTube you can find by searching "Toca 511". It is being offered at nine locations in the U.S.
We are consulting Duke for a second opinion and treatment options just to get a foot in the door in case we want to pursue in the future.
I wanted to update Chance's status and include a huge shout-out for Stephen, Ben, Rich and Cheryl and so many others for everything they have done and are doing for their GBM sisters and brothers. I am grateful beyond measure.
Thanks for the shout-out Jude, and thanks for keeping us all up-to-date on Chance's situation.
ReplyDeleteWhile I do think that Avastin can be helpful in some situations, for example as an alternative to Decadron, in this case (as you know), going on Avastin would disqualify him for some of the most interesting upcoming clinical trials including this one:
https://www.clinicaltrials.gov/ct2/show/NCT02529072
I know you know this, but I wanted to emphasize this to the blog as something to consider when weighing whether to go on Avastin or not.
Stephen - were also considering Avastin. It was suggested due to dad having increased tumor burden and comprehension deficits. We don't qualify for this study as we are inoperable by location and have midline shift. What other considerations should I make? We haven't filled the script yet so there is time. Thanks.
DeleteBest wishes from Argentina Jude, we really hope that this kind of trials would be available in our country in the near future, for now the answer is no. Dont know if there is an alternative to do it remotedly with guidance provided by the head specialists or travel from time to time, anyway I will contact them just to give a shoot.
ReplyDeleteGood idea, Francisco. Just keep asking until you get to YES!
ReplyDeleteThe reply from Duke:
ReplyDelete"Mr. Puebla, I am returning your email regarding the Nivolumab with DC Vaccines for Recurrent Brain Tumors (AVERT). Unfortunately, this study is not open and we estimate that it will not be open until sometime in 2016."
:-(...Anyway will contact them next year!
Thanks for posting that Francisco. I've been recommending that trial to people as clinicaltrials.gov still has the start date as Sep 2015. I will change that information on my website.
DeleteI´m from Argentina too, Francisco, but living in Brazil. Where are you exactly from? Are you a GBM patient?
ReplyDeleteHi Matias, I'm from Cordoba, my wife was diagnosed with GBM. Do you have access to inmunotherapy treatment like DCVax in Brazil?
DeleteRegards.
Unfortunately, not! You can learn quite a lot to help your wife from this site, especially looking at people´s cocktails! Best luck for you guys!
ReplyDeleteUpdate re Chance: Neglected to mention earlier that Dr. Taylor deemed Chance's tumor inoperable because he could suffer deficits to language and memory. Just talked to Dr. Kim at Duke. She says participants in the Poliovirus trial experience a lot of inflammation, so Chance would not be considered for that one (and of course the virus is placed surgically). Surgery is required for the Nivolumab with DC Vaccines as well, so we'll be pinning all our hopes and desires on Tocal 511! First influsion next Monday.
ReplyDeletePlease keep us up to date on his response to Toca 511. I have had my eye on this for a while.
ReplyDeleteTwo infusions so far and all is well. It's a little intimidating when the nurses "gear up" to give infusion: mask, gown, glasses, 2 or 3 sets of gloves!
ReplyDelete