At the age of 11 months, James N. was diagnosed with an optic pathway glioma in December 1998. James started conventional therapy with carboplatin/vincristine and had really positive results, about 80% reduction. The family initially thought this was dead tissue, and the tumor remained stable for two years, and he spent a third year as part of a phase II clinical trial of vinblastine. (Patients who elect to go on clinical trials are heroes in my book, since they are stepping into the unknown so that others might not have to.) He finished that course of chemotherapy on Jan 1, 2003, but it was unsuccessful. The diagnosis of “stable,” however, needs some clarification, and the family seems to have been taken by surprise when the tumor, though deemed stable, had been steadily growing the whole time, only at a very slow pace. If I were a patient, I would want to know that, but they seem not to have. They elected not to use radiotherapy.
The family went to the Burzynski Clinic in May 2004, and they spent the whole month there learning how to administer the A10 and AS2 on their own:
“Getting started was a little rough, but he is adjusting well. He carries around his backpack like a little trooper (which holds a pump and the medicine which is infusing 24 hours a day).
On August 4, 2004, the first scan after starting the ANP found a stable tumor with what they call “areas of necrosis.” Shortly thereafter, they head back down to Texas, where James starts having new symptoms:
James’ appointment went well. Things are going well for the overall picture, but each day he still struggles with not feeling well. After we got back, he seemed to have more trouble with new symptoms like chest pains and more headaches, not really resolving when we stopped the treatment. So, this last Friday we spent the day in Chicago having several tests done to see if his shunts are what is causing the trouble. We won’t know any results until next week.
We learn what it was in September:
Friday, September 10, 2004 11:24 PM CDT
Sorry it’s been so long since I updated. Things seemed to go fast after we returned from Texas.
Most of James’ trouble was from a pleural effusion he had in his lungs. His hemoglobin had also dropped to 7.3. He was in the hospital overnight and they gave him blood. He was off treatment for about 2 weeks until everything resolved.
Last Wednesday, we took him for more tests and everything was clear. He started back on his treatment yesterday, at a very low dose. We have decided to start very slowly, so hopefully things will go smoother. We are also trying to have him eat more potassium-rich foods and get him off all the medication he was on. This was really irritating his stomach.
I can’t tell if this is related to the ANP, but they take him off and are cautious about starting him up again, for what it’s worth.
On the 18th, we get news that James seems to be developing a blind spot in his right eye. He only has peripheral vision in his left eye. On October 29th, they are heading back down to Texas. MRI’s between then and January show little to no progress, with necrosis still. And he’s starting to struggle in school, possibly because of his failing eyesight. On January, the family is excited that their latest scan has gone from “no change” to “slight decrease versus no change.” However, the final analysis suggests there is no change. He is scheduled for an MRI on April 20th and an overnight trip to Houston the next day. That is uneventful. No changes, and we hear officially that this is a slow growing tumor.
On June 16, James is in the hospital with an infection and what looks like a port malfunction. He remains there for 5 days. The tumor remains stable, and in July, he has the port replaced. By the end of the month, following infections, etc., he’s back on ANP:
Wednesday, July 27, 2005 12:05 AM CDT
James is up to 125/15! In case you don’t understand what that means, I will explain. James gets two types of medicine that are given by pump. One, called A10, he gets 125 cc every four hours. The other, called AS2-1, he gets 15 cc every four hours. So, we call his dose 125/15. James had remained steady at 120/15 for many months, before having to be off for a while with a line infection. Now that he is back on and steady, we are wanting to try to go up a little more. We are determined to see this tumor really start to shrink.
By September, James is in 2nd grade and loving it. However, he is having pains. The tumor remains stable, even though they were off treatment for 6 weeks because of the infections. It seems to me at this that the ANP has had basically no effect. No change counts as “good” from the point of view of a patient, but it does not suggest that the ANP is doing much, as far as I can tell. All we have is months and months of little change on a slow growing tumor (with increased vision problems).
By Sept 17, James potassium level is dipping. This happens all the time and is a side effect of ANP, which like any other chemotherapy, has side effects.
November 10, no change. I am delighted to see James asks to see the lab where they have been sending his blood since he was a baby. Smart kid.
He’s on a whopping number of supplements, as we hear in December:
~Boswellia twice a day (anti-inflammatory)
~Bromelain twice a day (anti-inflammatory)
~Juice Plus twice a day (for potassium)
~Fish oil and flax seed oil three times a day
~Whey protein (to boost hemoglobin)
~Ruta6/Cal-Phos twice a day.
~Silybin (Milk thistle)
~Melatonin at night
On Feb 20th we hear that the family has been to Disney World on a Make-A-Wish trip and that they are waiting to get another MRI. They get the scans and James’ mother comments on March 4:
So, what I did was call the hospital and ask for a disk with James’ original MRI two years ago when starting antineoplastons, two more MRIs spaced between, and the most recent MRI. Although it is much harder and takes much longer, I can now pull up approximately the same cut on all four MRIs and compare them on one screen. I cannot tell you what a difference this made. The four MRIs that I have are the first one, an MRI three months after that, an MRI six months after that (and 1 year before the last one), and the most recent MRI. When you look at those four MRIs, there is ABSOLUTELY NO WAY that ANYONE can say that the antineoplastons are not working. That tumor is DEFINITELY fading significantly.
I found the scans (since taken down). My impression, the tumor is less noticeable, but the outline of the thing looks to be fairly consistent. I’m also not sure how useful it is to compare slices that are only approximately the same.
On June 17th the family reports that the tumor is 25% smaller than it was initially. I don’t know who made that determination, whether it was the Clinic, which I simply do not trust, or an independent radiologist. I am happy, however, to see James enjoying himself and being active.
James hasn’t been healthier in years. We asked God to shrink James’ tumor – and He has. It is 25 percent smaller since starting on this treatment. We asked God to give James a good summer – and thus far He has. He is going to camp, playing soccer, swimming, going to summer school and improving in reading everyday, and all-in-all doing very well.
On August 10, they are starting up school again. (In the interim, by the way, James’ sister started having epileptic seizures.)
James continues to do very well. His dose is 220/20 and he is tolerating it very well. His next MRI will be on the 18th. He is finished with summer school and glad for a break of a few weeks before school starts.
On August 15th, they mention that Chase S. is a friend and is unresponsive. Chase S.’s story is possibly the worst thing I’ve ever had to write.
James is in the hospital again with an infection, which started around the 24th and kept him in the hospital through the 1st of September. He is off treatment for this time, and we see that he is still recovering later in the month:
Friday, September 22, 2006
I suppose because of all the antibiotics that James has taken over the last month, he finally got a bad case of diarrhea – so he is off treatment for a day or so. Hopefully, lab work tomorrow will look good and he will be back on. On a good note, Dr. Khan, the radiologist from Houston, reports that James last MRI reveals the tumor shows no change from the previous MRI and an overall decrease of 25 percent from the baseline MRI.
3 days later, the port is still oozing pus and there is a serious talk about taking out the port:
But, I just kept asking, “If you remove this port because of the possibility of an infection outside the port and then a new one cannot be placed – then what do we do?” He didn’t have an answer for that – only that from the infectious disease standpoint, the line needed to go. I simply asked them to look at the whole picture – everything that James needed – not just the infectious disease picture. In the end, they were bent on removing the port and I was bent on keeping it, at least until there was definite reason to remove it. I guess you could say that I won – James still has the port – but I got the impression that they are just “appeasing” me for now and that they still intend to remove the port.
They feel that there may be an infection in the heart leading to regions of infection on the lungs. The wound seems to have eventually improved, but not enough to save the port. It comes out in the first week of October. An interesting tidbit is in the Oct 7th story:
Oncology’s plan was to switch him to a stronger oral antibiotic and send him home. They felt that the port site didn’t look bad enough to warrant IV antibiotic in the hospital. BUT…….then the infectious disease attending doctors came. Know that up until now, we had seen several of the infectious disease residents who ALL agreed that the port did not look bad and shouldn’t need to come out. The doctor that came Friday afternoon from infectious disease was the same one that, when James had an infection last summer, blamed it all on the antineoplastons – so we knew we were in “trouble.” As expected, within a half an hour of that doctor seeing James, the plans for oral antibiotics and discharge were cancelled.
I don’t know the basis for this. I wonder if the infectious disease guy is talking about the perpetually reinfected port site and not the ANP itself? On November 1st, he is finally clear of infection. Very soon after that, he is experiencing more discomfort and has a UTI. The kid can’t catch a break. He does get a new line in December, the month that marks his 8th year under treatment for his tumor.
He has intermittent infections until April. Occasional infections, again associated with his port, continue. In August, James’s insurance starts to reach his $1,000,000 limit:
On another note, James’ insurance is running out. We were one of the few Burzynski patients fortunate enough to have insurance pay for this treatment. But, for this reason, James will soon reach his lifetime maximum coverage of a million dollars for this insurance coverage. Dave is looking at other job options – of course, it would be questionable whether that insurance would choose to cover this treatment. We are also going to finally get a medical fund account opened for James, in hopes of raising some funds to help with his treatment. If you would be interested in helping with James’ treatment, I should be getting the information posted here soon.
This is bad news. I have no idea how much they have spent on Burzynski, but in the absence of any clear progression, I wonder if they would have had continued access to insurance without him. In November the tumor seems to be growing again. The family posts on their new website:
Well, for the first time in three years, I don’t like the look of this MRI. Overall, the tumor is still smaller than when we first started. There are even areas where you can tell that cystic portions of the tumor which were there previously are now gone – absorbed by the body. But, compared to a scan about 6 months ago, the tumor looks like its a little bit more active and maybe even a little bit bigger. We have determined to make sure that James is faithfully on his medicine and scan again in two months instead of three months.
We also get a sense of what it cost the family to get the antineoplaston treatment in the first place:
Let me back up a bit. Three years ago, when James was to begin this treatment, we needed $20,000.00 just for the first month. After that, the cost would be anywhere between $7,500.00 and $10,000.00 a month. That’s a lot of money!!!!
On January 5th, the family reports the tumor had grown 10%. The next MRI shows essentially no significant change, but the doses have been upped:
For now, no decisions will be made. James is healthy and well and it seems as if the growth has stopped. So, barring any change that Dr. Burzynski might have, we will continue on and see what the next MRI shows. They have continued to increase James’ dose and he is tolerating it well. He is now on 17.5 cc of A10 and 1.9 cc of AS2-1 96 times a day (every 15 minutes). This is the highest dose that he has ever been on, so we are quite happy that he is doing so well on it.
I will mention at this point that the disease seems to be completely unrelated to the doses of ANP that James is receiving. On January 25th, the mother gives a list of sizes and her own analysis of what is happening. More importantly, I think is what she reports from her doctors, both in their hometown and in Houston:
In April of 2004, Chicago measured a tumor that was 15.54 sq cm compared to Houston’s 15.99 sq cm. Although it is slightly different, it would be considered the same.In January of 2008, Chicago measured a tumor that was 15.81 sq cm compared to Houston’s 13.77 sq cm. Now, this is a significant difference in opinion.Dr. Barbara questioned Dr. Kahn about the difference in this last measurement. He noted that there is a cyst attached to the tumor. If you were to measure the tumor WITH the cyst, you will get 3.1 cm in that direction – WITHOUT the cyst, you will get 2.7 cm. This would make the actual tumor size 14% smaller, but if you wanted to factor in the cyst it would be 1% bigger – or a stable tumor.
I am in no way surprised that the Clinic would pass along a measurement that was smaller than the independent physicians did. In March, after 3 consecutive MRIs showing growth, the family is considering other options. In early May, the family is now scheduling consultations in New York with a surgeon who might try taking out the tumor, but they have not given up on Burzynski entirely:
Although James continues on antineoplastons right now, we have let the Burzynski Clinic know that we are looking into surgery. The one thing we would like to have done is testing on James’ tumor when it is taken out. Dr. Wisoff feels that we need to have a follow-up treatment lined up as the tumor may come back quickly. If they do genetic testing on James’ tumor, targeted gene therapy might be an option for that.
They schedule surgery in New York for June 10th. There is involvement of the hypothalamus (not uncommon for these tumors, I understand). And when the surgery comes, they get about 70% of it out. The aftereffects of surgery, however, include confusion, memory problems and disorientation that lasts for quite some time. He was discharged from the hospital on the 21st. I presume he is off Burzynski at this point.
On July 13th, another MRI is reported, and as the surgeon anticipated the tumor might have started growing again:
Please continue to pray for James’ future treatment. They did an MRI here and we are overnighting it to Dr. Burzynski. I might not be reading it right because there might be inflammation involved, but it looks like it’s possible that the tumor has already grown. We’ll see what the radiologist in Houston says. But, we are thinking that treatment is going to have to start soon.
At the end of the year, the tumor seems to be shrinking somewhat. The family still is listening to the Burzynski Clinic, however.
In February 2009, another stable MRI, but James is having memory issues.
When in December 2009, the tumor is clearly growing again, the family runs back to Burzynski. Again, I’ve seen nothing to suggest that this was nothing but a slow growing tumor. It is, by the way 12 years after James was initially diagnosed.
In March, the family is heading back to Burzynski to start up on antineoplastons again.
Many things have already gotten into place for our trip to Houston to put James back on the antineoplaston treatment. God has already answered many prayers. We have a pilot that has offered to fly us in his private jet for free. We have several offers for accommodations. The FDA has approved James going back into the clinical trial. But…..there is one more big hurdle to get over. We need a doctor here in Charlotte to agree to care for James once we come home. James’ oncologist, Dr. Bryant, is willing but is needing approval from the review board of the hospital…and the review board is needing more info from Houston…and that info has been difficult to get. So, we are asking everyone to pray that it all gets taken care of in time for James to get a central line placed before our departure date of March 15th or 16th – which is the dates the pilot has set aside to fly us.
The flew out to Houston on the 16th. They met with the clinic staff.
On April 2, back home, the family reports that they were interviewed for the Dateline story on Burzynski.
In May, James is in the hospital. He seems to begin to have a bad reaction to the ANP on the 5th, and his sodium levels make him pass out on the 8th:
James was doing well on the treatment until last Wednesday. At that point, he seemed to be much more sleepy and confused. This continued through the rest of the week, culminating on Sunday with passing out in church. We rushed him to the hospital and they did a CT scan which didn’t seem too concerning, but they really didn’t have much to compare it to. His sodium was high and he seemed to be doing better, so they sent us home. James continued to do better and we kept him off the treatment until the sodium made its way back to normal range. But we decided to move his MRI to this week rather than the 24th.MRI was today and it showed quite a bit of swelling around the tumor as well as a layer of blood that indicates that what James was dealing with last week was a bleed, either around or in the tumor. We will overnight his scan to Houston and wait for their thoughts on it and plan for moving forward safely.
The tumor is growing aggressively, in July, showing a 30% increase since the ANP started.
The last MRI showed growth in the tumor again. It is estimated that the tumor is about 30% bigger than when we started this treatment. The doctors have all agreed that they don’t think we are dealing with the same tumor. It can only be assumed that when Dr. Wisoff took 70% of James’ tumor out in 2008, and then it completely returned in 6 weeks, that what returned is not the same. Of course, James’ symptoms and entire response to the treatment that he had already done for 4 years is also an indication that it is not the same. Anyone that knew James then knows that he did very well on the treatment with few complications and had 25% shrinkage of the tumor…..definitely not what we are dealing with now.
In August, we see no growth, but again, I don’t know who that is coming from.
On October 16, we hear the James has been taken to the hospital for yet another surgery on his shunt, and this time, he does not wake up from surgery as expected. It turns out that his hypothalamus is damaged and “storming” dumping adrenaline into his system. Further, he seems to be contracting another infection.
The poor kid goes on for 3 weeks like this. Finally he is extubated, but the family knows that he can’t go through this forever. 15 hours after returning home from the hospital, on November 21st, James died.
For reliable information about clinical trials, visit to clinicaltrials.gov. Please contribute to St. Jude’s Children’s Hospital, which cares for sick children even if they can’t pay. Unlike Burzynski.