This is my first time posting to this site, although I have come across it many times in my research. My name is Jenna and I am here on behalf of my father who was diagnosed at age 66 and will turn 68 this February. Although his tumor is currently stable, his symptoms appear to be worsening. He has increased confusion and sleeps on and off all day. I am here looking for some suggestions as to what we do next.
A brief history: my father was diagnosed with grade 4 GBM in August 2015 and had a successful resection on his right frontal lobe and started temozolomide and radiation treatment. We tested the tumor material with FoundationOne and found six genomic alternations: EGFR, PIK3CA, CDKN2A/B, FAT1, and TERT. We also learned that it was unmethylated. His first recurrence was in September 2016, again in the right frontal lobe. We decided to try the Tocagen immunotherapy study, but unfortunately in late March, we saw growth again in the right frontal lobe as well as new growth in the corpus callosum, making it inoperable. Since then, my dad started getting infusions of nivolumab with re-radiation and we’ve been getting scans that show a slight improvement which has given us a few small but welcome moments of relief. At the same time, the re-radiation or nivo have caused inflammation and we believed the added pressure from that was giving him balance and bladder control issues. He recently had a seizure and now we are trying to work out whether his balance issues were actually the results of something called Todd's Paralysis. It's possible he's been having several small seizures that have been going unnoticed which then cause weakness in the limbs for days to months. If this is the case, we might be able to decrease or remove the steroids. We also reduced his nivolumab infusions from every two weeks to once a month to see if it lessens his inflammation.
I read Ben Williams' book as well as some posts here about cocktail treatments. I would love to create a regimen for my Dad but am confused about where to start. I work in anti-counterfeiting as well which makes me extra wary about procuring drugs from the internet. I would love to hear from some of you about which combinations of treatments are working, where the agents can be safely obtained, what the dosage is, and whether or not there are any side effects.
Many thanks and wishing everyone a happy new year ahead!
Jenna
Hi Jenna,
ReplyDeleteSo sorry about your Dad. I hope that the tumours continue to show progress. Other people will be much more helpful than I...but have you visits Ben’s write up about the cocktail approach on Virtual Trials.com? Stephen, who selflessly devotes his time to this blog currently updates it. It breaks down a lot of the cocktail approach and has 2017 updates. There are Also survivor stories there. You can email the survivors and many of them email back promptly. I will grab the link and post it in a second post.
Was the tumour IDH mutated?
Maria
Here it is. If you link on the Learn Aboit tab you’ll also see survivor stories. Some of them had recurrences many, many years ago. Cheryl Clark (on FB) also has a recurrence. There are Also many survivors not listed on the site (so don’t lose hope when you see that short list).
Deletehttp://virtualtrials.com/pdf2017/treatment_options_gbm_2017.pdf
Hi Maria,
DeleteThank you for your prompt response.
I found the below response from our doctor which contains more tumor information re: your question as to whether or not it is IDH mutated. I'm afraid I don't understand it all although I did try googling all of the terms a while back. My Dad gets treatment out of Florida these days and I am based in NY so I can no longer attend his appointments with him:
IDH1 wildtype
MGMT methylation negative
EGFR varient III negative
1p/19q intact
BRAF mutation negative
I started looking at the sites you mentioned and they look like great resources, but I think I might need a little bit more hand holding in devising a treatment plan.
For instance, does anything pair particularly well with nivolumab? I see a lot of recommendations for different chemo pairings but none for checkpoint inhibitors (aside from adding more checkpoint inhibitors such as ipilimumab which I don't believe increased efficacy).
I just read Cheryl Clark's story at your suggestion. Is she open to communicating? I should mention, we tried a ketogenic diet for a year but when the tumor recurred, we stopped the diet. I wish we had continued, but it was difficult and my father disliked it. He also stopped wearing the optune as he found it annoying and our oncologist gave him her blessing to stop. I know it's hard to be the patient, but I want to leave no stone unturned.
Thank you for your reply!
Sorry, I never saw this. Cheryl is (or was) the partner of Jeanne Wallace who runs Nutritional Solutions. Jeanne is also on FB and I believe does communicate with others.
DeleteDear Jenna -
ReplyDeleteI am sorry to hear what your dad is going through. I know it must be awful for you. My husband was diagnosed in 1/2016 with an unmethylated tumor in his left frontal lobe and also developed inflammation from immunotherapy.
The good news is that inflammation is usually coupled with longer survival. The bad news is that there isn't much spare space to accommodate swelling and it is super hard to control. We were able to restrain it the first time for about six months with acupuncture and Celebrex. The second time it arose, he took steroids until it got under control.
Good luck,
Margaret
Hi Margaret,
ReplyDeleteI am so sorry to hear about your husband as well. That's great that you've managed to get the swelling under control. We are constantly switching up my father's dosage to see what works best. The most confusing part of this is that even though his tumor is technically stable right now, his symptoms seem to have worsened. I don't know whether to attribute it to the side effects of the drugs, the aftermath of the radiation, the swelling, or the possibility of new tumor growth. It's all very confusing.
Which immunotherapy is your husband trying? I hope it's successful for you!
Best of luck,
Jenna
Celebrex (celecoxib), as Margaret mentioned, would be a good place to start, as it should work well with nivolumab and also help with the inflammation.
ReplyDeleteCommon dosings for some of the more common cocktail drugs can be found on the Drug Dosing page at the top of the blog.
Further ideas for immune support can be found in my article over at Astrocytoma Options.
http://astrocytomaoptions.com/re-educating-the-immune-system/
Re-irradiation and nivolumab was started in March 2017. Now we have stable tumor but increasing symptoms. What is stable: the contrast enhancing part, or also the Flair involved region / T2 imaging ? Celebrex will limit inflammation indeed, eventually one can think on the 5 mg/kg Avastin dosing as well. However one should also consider real neurotoxicity after second irradiation. This is much more difficult to treat, and reflects here as a frontal syndrome with loss of personality besides neurologic deficits. Finally, one should look to the hormone status (like thyroid hormone, basic cortisol), as hormon regulations are disturbed starting already after the first irradiation and appearing
ReplyDeleteslowly thereafter (and here we are already at year two).
Hello Jenna ~
ReplyDeleteSo sorry that it appears that damn thing may be back. I do not see anyone commenting on this yet, but it is GREAT news, especially for unmethylated GBM. On December 26, 2018, the FDA approved a fast track of the VAL-083 for recurrent GBM. I know someone (32 years of age) that is currently on the clinical trial at MD Anderson Houston Texas, and she has been stable since she started it!! SO VERY EXCITING!! Here is the link to the PRESS RELEASE!! : https://ir.delmarpharma.com/press-releases/detail/875/delmar-pharmaceuticals-announces-fast-track-designation-for