Thursday 14 December 2017

New Diagnosis (GBM Grade IV)
All – my wife (51) was diagnosed in July 2017 with a GBM grade IV. The tumors were in her frontal lobe, are IDH wildtype and positive for amplification of EGFR sequences. Subsequent testing indicated MGMT Gene Promoter Methylation was not detected. Stacey’s tumor is multifocal. There are other characteristics (like PTEN) that I understand less. I do understand enough to know her tumor is much worse than most. 

Surgeon stated the larger was baseball size. Neurosurgeon stated he removed approx. 60% 
Stacey had stroke symptoms as she emerged from surgery. Deficits in speech and left arm and leg. She went thru rehab and is much better.

She is receiving treatments at UC Health Aurora ( Anschutz Cancer Center) which is a NCI center ( only one in Colorado) 
Early on we sought out second opinions from Barrows in Phoenix, and Dana Farber back East (we did this via correspondence as Stacey was too sick to travel). Both told us the standard of care we were getting in Colorado was their recommendation. Only in the event of recurrence would they have something more to offer. 
We currently have her enrolled in the ABT-414 clinical trial thru UC Health . We enrolled prior to the 6 week course of Radiation and Chemo. We are currently evaluating whether to drop from this CT and move to Optune

She has finished her 6 weeks chemo and radiation fine. Some hair loss, fatigue and fogginess. No nausea ( on Zofran).  Blood counts on platelets and white cells plummeted the last week, but rebounded to reasonable ( not optimal levels ) 

She just finished her first adjuvant cycle of Chemo ( TMZ 260 mg) ( 5days on, 23d off) and did fine.  
She had an MRI before the cycle started on 11/22. Report from the NO was the scan was good, no issues and no recurrence. Next MRI in January
My initial questions are : 
1). Stacey’s platelet count plummeted since the 11/22 test. 59 10*9/L as of 12/13 ( Was 114 on 11/22). I don’t know if this was a result of the Cycle 1 TMZ treatment, or some side effect of the last ABT-414 trial infusion. I’m concerned low numbers might delay the next cycle of TMZ (12/21). Are there any recommendations to increase platelet numbers in the interim? I have questions into the NO including possibility of a transfusion or other options . 
2). I have read several papers by Mr Williams and his book. I’m also learning a huge amount from online resources like this blog. Obviously overwhelming especially since I am not in the medical field. I feel like this is my battle and obligation to find options to try as the medical community has little clarity to offer other than stand of care. 
        a). Is the certainty of results in Optune better than the uncertainty of if she actually receiving ABT414 (double blind study). We’ve been told we cannot do both . I’d appreciate opinions 
        b). should we be exploring consultations at another Cancer center like MD Anderson, UCSF or Dana Farber now that she’s more able to travel ? I’d like to maximize opportunities before recurrence, but NO wants to stay the course. I haven’t ventured yet into conversation about adding other prescription meds, but need to assembly that case . 
Stacey is aware of the situation and cognitively getting better. She gets the danger she’s in but because of surgical and/or tumor damage, she is not able to actively pursue options. Thus, I’m trying to do what I can to care give, stay employed, and find solutions. I am certainly grateful for people like you that I can reach out to for information. This would feel like a lonely battle otherwise.

With Gratitude 
Rick 

8 comments:

  1. Hi Rick,
    Platelet drops are expected with the monthly TMZ cycles, which is at least twice the daily dose as administered during radiation. There is some evidence for melatonin improving platelet counts.
    https://www.ncbi.nlm.nih.gov/pubmed/12424512

    There was an update on the ABT-414 trial for recurrent GBM at the SNO conference this year. There looked to be a modest improvement in the ABT-414 + TMZ arm versus the chemo arm, but no improvement in the ABT-414 monotherapy arm versus chemo. It said in the abstract "the primary endpoint was not met". This doesn't mean it doesn't have activity, but it doesn't look to be a breakthrough treatment, at least for this study population.
    https://academic.oup.com/neuro-oncology/article-abstract/19/suppl_6/vi316/4636218

    As for personal opinion, I would have a hard time joining any placebo-controlled trial unless there were no better trials or options available, where I would be certain of which treatment I'd be getting.

    Most centers are going to be offering the same standard treatments, especially for newly diagnosed GBM. The main difference is in the trials being offered, and it's probably too late for most newly diagnosed trials as she's already started adjuvant TMZ. In general the challenge in your situation will be finding trials accepting patients with multifocal tumors. One to consider (for recurrence) would be:

    https://clinicaltrials.gov/show/NCT02208362 (IL13Ra2 CAR T-cells, City of Hope, Duarte California).

    https://clinicaltrials.gov/ct2/show/NCT03014804 (DCVax + nivolumab, UCLA, opening early 2018, would only be eligible if tumor is unilateral and gross total resection could be attempted).

    Keep us posted on what you decide to do.

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    1. Stephen - I agree on ABT414. It was the only trial we were offered initially. But I’m smarter now and will look harder. I appreciate the two references and will look into .

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  3. Hello Rick. My answer will be no where as scientific as Stephens', but I will tell you I have had my max dose of I131 (for a previous metastatic thyroid cancer unrelated) and photon and proton radiation. My counts plummet, not just platelets, all of them. I had read about a product called Marrow Plus by Health Concerns. Their web site is a little odd and cheesy, however it is a mix of Chinese Herbs, and many patients on different FB sites have this listed in their protocol. I am seeing an ND and she has me taking three tablets three times per day, starting the day before I start Temodar, to the day after, for seven days. It is working amazingly. I tried the bone broth stuff, and could not even taste it after it stunk my home up. Google foods good for platelet counts. It throws off my attempt at a strict ketogenic diet, but I add coconut oil, flax and hemp, and make papaya extract from the leaves and also eat the papaya (do not like it) and also pomegranates. As Stephen mentioned, Melatonin, I was on 20mg per noc, but found myself to drowsy so am taking a 10mg time release. The Health Concerns Marrow Plus, on their web site, states that it is only available to purchase from "practitioners", not sure what type of Practitioner, however, they have it for sale themselves on Amazon! Here is there web site, although I do not think there is much (if any) scientific data there! I can speak for myself and say my WBC's that were hanging around 2, requiring Neupogen, are now around 6-9! Everything is up. Good luck to you! https://www.healthconcerns.com/practitioner-item/8/97/Marrow_Plus.html (Sorry I had to copy/delete/paste and fix my errors, as I did not see an edit option!!)

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    1. Yes there's no edit option for comments, only for posts, sorry I know it's annoying.

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  4. Hi Rick,
    I just posted an update on our Clinical Trial exploration. We were told the same thing as you, stay the course, you can't do anything until recurrence. However once you have recurrence, as my husband did after 8 months, the last thing you want to do is fill out a bunch of paperwork and try to get an appt to see one of the top doctors. However it is not easy to decide where the best trial may be for your wife's type of tumor and trials open and close on a whim so my suggestion would be to start the process with a few centers so they have all your information on hand and you can get in quickly if necessary. As far as the supplemental drugs, supplements, Optune, cannabis oil...heavy sigh. There is no guarantee with any of them. My husband has done all from the beginning and still has recurrence right on schedule. I personally know of 3 other people who have done Optune 2 months after SofC and had recurrence 3 months after. Everyone is different and there is no way to predict what causes or stops recurrence. We just do the best we can. Good luck, peace and strength.

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    1. The question nagging me is should I trust that the current NO and care unit will have an adequate and responsive strategy in case of recurrence, or do I buy insurance by having her evaluated by multiple hospitals? I have asked the NO that question, and I get ‘ the strategy depends on circumstances ‘ seems like, since tumors always seem to reoccur, SOC would address that strategy on the front end.

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  5. Thank you! This gives me something to research and try. she has more labs Thursday so hoping for a big improvement

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