Yesterday’s and Monday’s posts were so long that this one will be a bit shorter than usual (probably). (It will also look at a case that I had meant to write about when it hit the news right before Christmas but for some reason never got around to.) I’ve written a lot about DIPG (diffuse instrinsic pontine glioma). DIPG is an incurable form of brain cancer involving the brainstem. Part of the reason it’s so difficult to treat and almost always incurable is because, given that it involves the brainstem (by definition) it is almost always unresectable and is rarely responsive to chemotherapy. Basically, for the vast majority of patients with DIPG, the recommendation is palliative radiation therapy, which reliably temporarily shrinks the tumor. Unfortunately, radiotherapy generally adds at best a few months to a patient’s life expectancy. Worse, DIPG disproportionately affects children, which makes its effects on families even more tragic. Indeed, cancer quack Stanislaw Burzynski treats a lot of children with DIPG. My most recent major series on a new group of cancer quacks in Monterrey, Mexico featured mostly children with DIPG being victimized by pseudoscience. One of the most common claims of quacks treating DIPG (particularly Stanislaw Burzynski) is that no one ever survives this cancer and that therefore the quackery must have cured it when it’s likely that long term survivors were as a rare result of the conventional treatment. Enter an 11 year old girl named Roxli Doss in Texas, who was diagnosed in DIPG in June after having complained for weeks about headaches.
Here’s the tale on her CaringBridge page:
Roxli has been experiencing headaches for a couple of weeks now. In the past week they got much worse and after numerous doctor visits with no clear answers as to why, they got an MRI done. On the morning of June 21st they received a phone call to go to Dell children’s hospital.
The news is not good. Roxli has an inoperable tumor on the back of her brain that is pushing on her spinal chord. It is called Pontine tumor or also called DIPG.
Last night, they started steroids for her to help relieve the pressure. They will check the tumor again in a couple of days. The doctor is giving them the full schedule today. If the tumor hasn’t shrunk they will consider putting in a stent to redirect the fluid.
She will stay in the hospital for a couple of days and then the family is going to the beach for a vacation.
When they return she will have radiation treatments Monday – Friday for 6 weeks to hopefully slow the growth.
How many times has a post by on this blog about a family of a child with DIPG started out with a story like this? More times than I can remember dating back at least nine years. In the case of Roxli Doss, however, something different happened. Yes, her family was trying to raise money on GoFundMe and CaringBridge, but, unlike the vast majority of cases that I write about, they weren’t raising money to go to Houston to have Roxli treated by Stanislaw Burzynski or heading to Monterrey to have her treated at Clínica 0-19 by Dr. Alberto Siller and Dr. Alberto Garcia of of Instituto de Oncología Intervencionista. No, her family took her to Dell Children’s Medical Center in Austin.
Dr. Harrod said the now 11-year-old went through weeks of radiation, even though there is no cure. The family held a benefit for her in August, and the Buda community responded in a big way. At that point, all Gena and Scott Doss could do was pray for a miracle.
“And we got it,” said Gena.
“Praise God we did,” said Scott.
Now, they cry tears of joy.
“When I first saw Roxli’s MRI scan, it was actually unbelievable,” said Dr. Harrod. “The tumor is undetectable on the MRI scan, which is really unusual.”
Doctors can’t explain why the tumor disappeared.
“At Dell Children’s, Texas Children’s, at Dana-Farber, at John Hopkins, and MD Anderson, all agreed it was DIPG,” said Scott.
As of now, doctors are following Roxli Doss to look for recurrence and are administering immunotherapy to try to prevent recurrence. As an aside, I hope they’re doing this on a clinical trial, because there really isn’t any good evidence that immunotherapy is effective at preventing DIPG recurrence. However, in this case, I can understand the desire to do something, particularly in the face of not a lot of evidence given how uncommon DIPG is.
I’ve pointed out before that, even though the reported survival rate for DIPG is dismal, survival after treatment for DIPG is, while pretty rare, not zero and spontaneous regression has even been reported.
Of course, a Roxli’s response is incredibly dramatic and quite rare. However, it demonstrates that, even in the case of the most deadly cancers, spontaneous regression or far better-than-expected response to conventional therapy is possible, albeit rare. I also note that Roxli’s case is not the sort of case where the parents will be tempted to seek alternative cancer quackery, like that at the Burzynski Clinic or Clínica 0-19. Usually, families seeking such quackery have a child who has either not responded so dramatically to radiation therapy or who have had recurrence.
Complicating the issue is a well-described radiologic phenomenon known as pseudoprogression, which I’ved described several times before in the context of Stanislaw Burzynski. in which a treated DIPG tumor will appear to increase in size after radiation therapy, thus appearing to progress. The “false” part comes in because this is a radiological phenomenon. MRIs image blood flow, and the inflammation provoked by the dying cancer cells will result in increased blood flow to the area of the cancer. If a treatment, like Burzynski’s antineoplastons or other alternative cancer treatments, is initiated during pseudoprogression, when the inflammation subsides the cancer will appear to shrink, and it’s easy to be fooled into thinking this tumor shrinkage is due to treatment effect. When the tumor disappears so quickly and completely, there’s no room to be fooled by pseudoprogression.
Of course, Roxli’s family is attributing her outcome to God:
Although I can understand why they would do this, it still irks me when God is given credit instead of the medicine. I also can’t help but wonder: If God healed Roxli, why did he give her a deadly brain cancer in the first place? (I know, I know, I’m not the only one who asks such questions.) Also, I hate to be a downer, but Roxli is not out of the woods yet. She might have had a radiological complete response, but that doesn’t mean that there aren’t microscopic tumor cells left that could start growing again. I sincerely hope that’s not the case and that Roxli lives a happy life to a ripe old age, but it’s only been four months. Fingers crossed, as they say.
Roxli’s case is an example of a cancer that scientists really need to study, because she is the very definition of an “exceptional responder“:
Exceptional responders are patients who met the following criteria:
- Received a treatment in which fewer than 10% of patients had a complete response or a durable (lasting at least 6 months) partial response based on clinical trial data or extensive historical experience in the context of the patient’s tumor type
- Achieved either a complete response (CR) or a partial response (PR) with duration of at least 6 months as defined by RECIST (Response Evaluation Criteria in Solid Tumors) criteria for solid tumors or response criteria as defined where RECIST is not commonly used
- Sustained a complete or partial response for at least three times longer than the median duration of response from literature resources for that treatment
Finding out what is different about Roxli’s DIPG compared to the vast majority of DIPG treated. DIPG can be quite responsive to radiation therapy, but such dramatic complete responses are very uncommon, and long term survival is rare. That’s why I hope there is tissue available to study. Historically, suspected DIPG has not always biopsied, because sticking large needles into the brainstem is hazardous (although biopsy is becoming more common with safer techniques). The reason is that DIPG can be pretty reliably diagnosed by its clinical characteristics and its features on MRI. In any case, this is where science-based medicine comes in.
In the meantime, I wish Roxli and her family only the best and hope to see an update on her several years from now in which she’s in high school and thriving.
31 replies on “Roxli Doss: A deadly brain tumor shrinks to undetectable without quackery”
My first reaction to this is that we need to be absolutely sure that the diagnosis was correct. Was there a biopsy, or was this a purely radiologic diagnosis?
If this were, say, a lymphoma instead, the observed response would not be surprising.
I don’t think there is enough information to be certain of what really happened.
Given the certainty with which the doctors delivered the diagnosis, I assumed there had been a biopsy, but I mentioned the uncertainty because not all DIPG gets biopsied before treatment.
This is the phraseology that caught my eye: “At Dell Children’s, Texas Children’s, at Dana-Farber, at John Hopkins, and MD Anderson, all agreed it was DIPG,”
Why not the pathologists at those institutions reviewed the slides and agreed that it was DIPG? These days, many patients are told that and understand how important that is. It makes me wonder how that went down.
Yes, but that level of detail not something most laypeople would even think about. All they know is that the doctors told them it was DIPG. Certainly, those cancer centers would have reviewed the pathology if biopsies were taken.
It is not possible to biopsy the brainstem in many cases. Looking at the MRI, I wouldn’t be surprised if this was one of those cases.
…it still irks me when God is given credit instead of the medicine.
Christian missionaries that provide life saving vaccines may exemplify a healthy God/medicine relationship.
I’ve just completed the book titled, “Distinguished Missionary Women – For His Glory” and it will be published through Nova Science Publishers in July, 2019. In the book summary, you’ll notice that conventional-medicine often compliments their purpose:
Missionary women of the 19th and 20th centuries are no strangers to the ecstasies, horrors, and humor of the human condition. June M. Dunn, RN-MSN was the 20th-century missionary in Haiti, Honduras, Guam, Russia, Saigon, Saipan, and Thailand. June’s American family upbringing, science-based healthcare training, and humanistic effort allowed her to be an exemplary teacher and caregiver to the poverty-stricken. Her recollections offer inspiring, frightening, and sometimes comical aspects of missionary work. Select quotations and hymns give meaning to the spiritual and emotional impact of her calling. Personal photographs and paintings beautifully illustrate a life well-spent. In the final chapters, chronicled are five not-to-be-forgotten missionary women: Charlotte Moon; Mary Slessor; Amy Carmichael; Gladys Aylward; and Mother Teresa. These six women and their missionary achievements are a testament to living for His glory in self-sacrifice and heroism.
A feel good post today, thanks!
Noone is complaining about health work that missionaries provide, but we do wonder why they have to attach gods, miracles and such to it? There is simply no excuse for trying to change people’s existing spiritual beliefs–some find it quite repugnant to do so. As an anthropologist, I have a special distaste for missionaries and would like them banned. I won’t even set foot in a Catholic hospital.
I also consider it repugnant. It fees into the narrative of anti western “hence” antiscience tropes that are all too common in the “third world”.
MJD: you will always find a way to shill books no matter how tangentially they are related to the post.
As a reality-oriented counsellor, here’s a hint for you, free of charge:
no one here cares about your books and no one will buy them. In fact, shilling a religious book here, where a reasonable proportion of the audience is atheistic or agnostic, is not a wise option and might invite ridicule rather than purchase.
How many of your other books have you sold beside those which you bought yourself ( family members don’t count)?
Count those up for each instance and try to understand the meaning of the figures. Did you make your money ( for publishing costs) back in any case?
I rest my case.
In fact, shilling a religious book here, where a reasonable proportion of the audience is atheistic or agnostic, is not a wise option and might invite ridicule rather than purchase.</i
Hell, I’m Christian, moderately croyante, and I wouldn’t touch anything Dochniak wrote with a ten-foot barge pole.
Surely they are going against God’s will if they are vaccinating people against such wondrous holy creations as smallpox and polio. Or do you believe that God was quite satisfied knowing that these scourges would ravage humanity for millennia before a vaccine would be invented?
Well God was quite happy with flooding Earth. So I do not expect less of him. He has a reputation to uphold.
And now we’re going to throw down, MJD. Missionaries of every kind inherently violate autonomy and consent. Here’s how they do it: In Christianity, you only go to hell for not being a Christian if you knew about Christianity. Thus everyone who never heard of Christianity, who never encountered a missionary, could go to heaven. By going out to proselytize, these missionaries condemn the people they are “saving” to hell if they chose not to believe. These missionaries did not ask anyone if they wanted to be preached at. They did not ask for consent, they did not respect the autonomy to choose to not join a new religion. Colossally disrespectful and coercive.
Also, Mother Teresa was a terrible person who didn’t believe in pain relief in any of her hospitals.
If you think this is a good thing then you have proved that you are a person who cares nothing for others. Go away.
Yup, one of the world’s most famous modern psychopaths, known as “Mother Teresa”, has been comprehensively outed at this point. Google Dr Aroup Chatterjee for the sickening details.
She also refused to open a center here in the US because we required elevators in the building (which she neither had to pay for nor use). Her reasoning was that they didn’t have elevators in Calcutta. I have little admiration for this “saint.”
If you think this is a good thing then you have proved that you are a person who cares nothing for others. Go away.
Hmm… should there be a “Global Missionary-induced Injury Compensation Program” (GMIICP) similar to the National Vaccine Injury Compensation Program (NVICP)? Sometimes, good intentions fail and innocent people get hurt.
No, MJD, I don’t think there is any relationship at all whatsoever between vaccines and religion, no matter what kind of “clever” joke you think you are making. Remember, the failure mode of “clever” is “asshole”.
The road to hell is paved with good intentions. If you need more money for your road construction, get it from a church. Just build it away from here.
MJD, while it is a sad story, when John Allen Chau went to proselytise the Andaman Islanders and they killed him, he had it coming. Typically, missionaries act out of a usually unspoken contempt for the people they try to convert – they’re just poor benighted heathens and it’s our duty to destroy their inferior culture to make them into poor imitations of Europeans, they might say if they were being a little more honest and self-aware. Making matters worse, if that’s possible, they all too often rely on bible translations from such dubious English language sources as the King James version instead of from the original less-corrupted sources.
There are often even more impure motives at work: “People sometimes “receive Christ” for mercenary reasons, like obtaining rice, soup, blankets, or alms. And a few missionaries down through history have resorted to bribery in an effort to tally up converts. I pray that by documenting these terms, I can help people become more aware of how we talk about mission work and evangelism, and hopefully we can avoid making some of the mistakes again.”
“Rice Christian” is not a breakfast cereal marketed by cartoon elves. https://www.dictionaryofchristianese.com/rice-christian/
There is a joke about that missionary: John Chau wanted the islanders to go to heaven…but they got in first.
His mission was doomed to failure from the start because the islanders spoke no English, and Chau did not speak their language (nobody does except the islanders). He might have preached the best evangelical sermon in history, and nothing good would come of it.
“Bone cancer in children? What is that about?”
Also, dingos took my baby.
Is that a reference to Lindy Chamberlin?
Billyjoe – “dingo took my baby”
Yes, more so the movie “Evil Angels” starring Meryl Streep. Funnily it’s not a phrase we use in Aust so I’m not actually sure of it’s meaning in context.
The whole episode was a debacle involving a prison sentence, four inquests and a royal commission, lasting from 1980 to 2012! I don’t think that even to this day anyone can say definitely what happened to the poor little child, but the weight of evidence seems to point away from the family’s involvement in the baby’s disappearance.
It was our Joebenet Ramsey case only bigger, if that’s possible.
Please do follow this as it seems to soon to declare victory–though I am more than happy to be wrong about that. It’s also good to know that even though the parents seem quite religious, this didn’t interfere with them getting standard care. Thanks for the positive message; it is so welcome considering the rest of the news (I come here after looking at the NY Times).
Seconded. Burzynski’s and Clínica O-19’s business models involve peddling false hope to the parents of children with these inoperable cancers. Being able to offer real hope, however slim, is the best way to combat such quacks.
Which immunotherapy? Vaccine based? Cell based? Antibody based? CTLA4? PD-1? PD-L1? Replication-competent retrovirus?
Immunotherapy is a big, diverse group of treatment types with hugely different mechanisms of action.
(I can’t think of any immunotherapies being studied in DIPG off the top of my head, but that doesn’t mean they don’t exist.)
Here is one trial in the pipeline: https://www.stjude.org/research/clinical-trials/pnoc007-immunotherapy-dipg-glioma.html
Ooh, that looks like a good one. But also scary – how do you control the magnitude of the response? I would think swelling would be a very serious risk. That said it looks promising.
I will go to a funeral this afternoon of a dear colleague of mine who died of cancer.
So, thank you Orac, a story like this was what I needed. It is good to read about cases like this where science and real medicine led to a good outcome.
[…] Roxli Doss: A deadly brain tumor shrinks to undetectable without quackery January 10, 2019 […]
My Daughter Natalie is now 22. We first found out she had a brain tumor in 1999 when she was 2. She has had 3 brain surgeries and was the first pediatric proton therapy patient in San Diego in 2014. Her tumor hasn’t grown since then. She has had 48 MRI’s now and millions of minutes of prayers and miracles. Natalie and I are now “experts” at imaging her tumor. We believe we are using technology that still isn’t common place for radiologists. Just ask your radiologist to give you the “volume” of your tumor. Most don’t know how … yet. It’s a difficult science to match the injection of God’s miracle material Gadolinium. Without it, the tumors don’t show up on scans. If the nurse misses a vein and it doesn’t go in the blood stream, the tumor won’t show. If the rad tech gets a call from his wife during the scan and waits ten minutes, the tumor doesn’t show. It’s a science and a “miracle” to get everything right. I know I have as more experience and passion for my daughter Natalie’s tumor than anyone in the world. I’m using a little of that to help others with http://www.freetumor.com. God bless!