Hello, I have posted before trying to find out more about Val-83 but have not been able to find much information. My husband-unmethylated, IDH Wildtype, no actionable mutations except FIG-ROS1, .51 mutational burden-has had a recurrence and I would appreciate any insights into possible options.
Quality of life over quantity is our guiding force and I would also appreciate any advice towards not doing any more treatments if you feel that way. My husband keeps saying he has had a great life and he is grateful and if now is his time he is at peace. I, however, am a fixer but I don't want to pressure him into doing things he is not comfortable with and have no proven outcome.
The clinical trial that seems the best suited for Tim is the one for the chemo drug Val-83 at MD Anderson. It is the drug that Al Musella at virtualtrials.com said he would try if he were unmethylated. It is a small molecule drug that was used in the 70s I think. Unfortunately I can find out very little about side effects or benefits. It is Phase 2. We have an appointment with them.
I have also contacted Duke and Dana Farber to see if they have anything to offer. Tim's NO said he was not a good candidate for an immunotherapy, I think because his tumor mutational burden is not high. He is pre-approved for Nivolumab. He probably does not have enough tumor frozen to make a vaccine and his gut reaction is he does not want another surgery plus his NO thinks the new tumor may be too deep and inoperable.
Other choices are the old chemo drugs CCNU/Lomustine. I have also heard of people using it with Avastin concurrently.
A basket drug, entrectinib, I know little about and is not used for GBM but one that could be used because of his FIG-ROS-1 mutation.
Avastin, of course, I hear more good things than bad but am always worried about the worse case scenarios as Tim seems to be sensitive to drugs.
I have also read about 3BP as a miracle drug but don't know if it is even available or if it was just an anomaly or a great story or what?
Thanks, Dianne
Hello Dianne,
ReplyDeleteI am still very new to this and trying to sort things out for my husband as well. I've often thought that we could use OPTUNE device for a while if we were unsure what direction to go and that could give us some quality of life time and more thinking time perhaps about study/drug options. Not sure if others have approached Optune in this way or if this is even a realistic option? Wish you the best.
Sending light and healing to all.
We have used Optune for 3 months and unfortunately had recurrence while on it. His NO still recommends he continue. Best to you and your husband.
DeleteHello Dianne,
ReplyDeletethere were some promising results from Toca511 trial or TMZ+CCNU combination. There are also a few topics on this forum - maybe check that out.
Big neuro-oncology conference is going on this week in LA, where they will present some of the updated trial outcomes and I think Stephen will forward us that information as soon as he will be able to.
Hi Diane,
ReplyDeleteThere is a VAL 083 Phase 2 study that just started recruiting this month. You can read more about it at DelMar's website:
https://www.delmarclinicaltrials.com/our-trials/brain-tumor-trials/for-patients-with-newly-diagnosed-gbm-having-unmethylated-mgmt-expression
I have not seen results published from the Phase 1 study at MD Anderson. It actually started recruiting 20-JAN-2017 (with an estimated primary completion date of SEP-2020), see:
- https://clinicaltrials.gov/ct2/show/NCT02717962
Phase 1 and Phase 2 trials are uniquely different. If DelMar is starting Phase 2 recruitment for Glioblastoma, then I assume they have preliminary data that shows efficacy.
Kind regards... Guy
Thanks Guy, yes we are going down to talk to them but I am trying to find out more about side effects etc but I guess there isn't much information out there because it is a clinical trial, duh!? but as you said if it is moving to Phase 2 there must be something they see. I hope they will tell us about the results from the Phase 1 trial.
DeleteDianne,
ReplyDeleteThe only thing I have to offer is that my husband is on Lomustine and Avastin concurrently. He has GBM, methylated. He did radiation and Temodar first. He is also on Keppra and Zonisamide, anti-seizure meds. Nothing seems to help the nausea. The next drug possibility is Zolinza. He has been wearing Optune since the end of radiation. His next MRI is next week. It has been 7 months since the first seizure which came out of the blue.
Have you read Ben Williams' book Surviving Terminal Cancer? That is where we began our research.
Mary Ellen
Hi Mary Ellen, I am sorry to hear about your husband's nausea. I have read his book and we implemented many of the strategies as well as cannabis oil and Optune and unfortunately still got recurrence. Best of luck to you.
DeleteNivolumab does not require surgery. Dad had 2 infusions but unfortunately he was too far gone by the time we got them approved. I don't see any reason not to start if you have approval, but others may weigh in. My dad had no side effects and tolerated it well.
ReplyDeleteThanks Annie, I think it may rule out other options so we have to decide which order to try what in order to keep our options open.
DeleteI have found only limited info about Val 083, maybe it will be helpfull
ReplyDeletehttps://www.prnewswire.com/news-releases/delmar-presents-poster-of-clinical-research-with-val-083-in-patients-with-chemo-resistant-glioblastoma-gbm-at-snos-pediatric-neuro-oncology-basic-and-translational-research-conference-300475131.html
And
http://www.dukechronicle.com/article/2017/05/duke-researchers-develop-treatment-that-triples-survival-time-of-brain-cancer-patients
Thanks, very interesting. I am curious what they will say at Duke.
ReplyDeleteDiane, a friend of mine shared your comments..I also have a blog like this on caringbridge.org...
ReplyDeleteFor my husband whom I have been battling to save his life for over 2 years..and recently lost our battle on November 20th ...I am a warrior like you and Tim ..we were at Duke in August for a trial..they accepted us..and they didn’t know they were the sponcer but I did..and when signed I said I want to do this in Lexington KY at University of Kentucky..get me in now...so ya..I knew more than they..but it was still too late ..my husbands stage 4 melanoma liver cancer immunotherapy stopped working in July..it took 5 hospitals in 5 states .,,to find a fit.and so they started his trial.sept 8..at University of Kentucky..on October 8th..he was disqualified..the drugs didn’t have time..and his liver tumors had progressed too rapidly..they said hospice or pallative care..I wasn’t ready for that. If I could have found and been accepted sooner I to a trial..we could have bought time...that’s really all it’s about..is buying time...and maybe the next best thing is almost ready...problem is you run out of time...you run out of options..and that is why I am determined to start a website to help warriors fighting for their loved ones to find the resources and clinical trials ..because we have learned so much in this battle..we are able to pass this knowledge on to others..
Go to caringbridge.com..look up Robin Anderson. ..Our Journey..and you can read our journey that I am sure parallels your in so many ways..
My motto has always been never give up never give in......and then comes the time you have to...
That’s the worst thing ever