*An appeal to encourage Congress to investigate this follows John’s story*
In March 2009, according to his CaringBridge page (my principle source for this narrative), John D started having trouble tracking with his eye. On May 22 a biopsy at Johns Hopkins revealed that he had a grade 2 astrocytoma on his brain stem. The long term prognosis for this type of tumor–especially given the location–is ultimately pretty poor.
John went to Houston to begin treatment at the end of September 2009 and they enter one of the Burzynski Clinic’s trials. Even though it was experimental at the time and Burzynski was ultimately slapped like a naughty puppy for advertising that his treatment was safe and effective when he never demonstrated it, the family is given to understand that ANP “has proven to be very effective for adults with brain tumors like John’s.” (Were that the case, there would be no clinical trial for him to enter into. If he is in a Phase II trial, by definition, the study is still only looking for evidence of efficacy.)
He started ANP on Oct 1, the day after the port was put into his chest for continuous infusion.
The family reports the next week that John is seeming tired, which the family, for some reason, interprets as a good thing:
John is feeling very tired as expected this is likely a good thing. Increasing side effects include: Hand Tremors (dropping items), unstable walking, difficulty swallowing, hearing loss & exhaustion.
In the next weeks, he also starts having auditory hallucinations:
Written Oct 14, 2009 5:49pm
We have now been on Burzynski’s Clinical Trial for over a week and feeling signs of possible tumor breakdown as we ramp up the antineoplastins & steroids to control any swelling. While I am still fine, however, there are some “weird” side effects (visual & auditory) and some loss of hand control & balance. Whether tumor cells are targeted chemically for desctruction or genetically for reprogramming, we are praying for success.
Further, the family is, sadly, learning how marginal a character Stanislaw Burzynski is in the eyes of real physicians. John has also started steroids, which would control some of the swelling in any case. So, we might expect some improvement, even without the ANP.
We need a Dr. @ home to agree to sign a form for this trial to give a monthly check up & this needs to happen before we go home. Although John’s Dr ([T.]) of 13 years verbally agreed to do this; now he is refusing to sign reasons. We are upset as he didn’t even call to explain but had his secretary “back out” for him.
This is a hard thing to deal with. It’s heartbreaking. I can easily imagine that long established patient-doctor relationships are routinely shattered as Burzynski’s treatment pries patients away from conventional medicine. But a patient should always, always be suspicious when a doctor–one with whom the patient shares a long-term relationship–indicates that they are unwilling to collaborate with another physician.
After a difficult couple of weeks during which the Clinic teaches the family to fend for themselves, the family returns to Baltimore on Oct. 19. Happily something seems to be working, as his eyes seem to move more freely. Is this the ANP or the steroids? You can’t tell.
Back in New England, they have a new doctor, Dr. C., a neurologist who participated in the initial diagnostics. John is clearly experiencing the typical side effects of the ANP:
The amounts of water dad has to drink are enormous!
He’s on the maximum dose of ANP at the time and with that comes hourly trips to the bathroom. It is wearing out the family (it seems that lots of ANP patients become sleep deprived).
On November 3rd, Burzynski’s treatment put yet another patient into the hospital:
Written Nov 3, 2009 8:41am
UPDATE~ Please pray this morning for John… Any of your help & support is much appreciated by our entire family. Dad went into the hospital last night b/c his sodium was too high. The clinic called & asked mom to stop the pump immediately & take him to the ER. He got IV fluids last night and we’re waiting to hear from the Dr this morning.
John was in the hospital for 3 days because of Burzynski’s treatment and weakened because of it, and he is still experiencing hallucinations. Please, at all points in this story, understand that John has the most caring and loving of families. He has an excellent support system that lots of Burzynski’s patients simply do not have:
Dad is getting daily visits which do very much help~ Dad’s partners hired a nurse to come in over night (12-8 AM) to help mom be able to get her sleep with dad. This nurse will also help with laundry & breakfast & overnight care with getting dad to the bathroom. He is still having to drink unbelieveable amounts of water & this will need to continue throughout his treatments. He is up every 45 minutes to 1 hour & his output liquids are still more than his input. We are not sure what is causing this, but please pray it will even out so that this medicine will absorb the way it is meant to work.
This is something that most people (I think of Denise D.) do not have. We should all be so lucky to have such a support network in our toughest times, and I tip my hat to his friends and family.
In the first week of November, he Burzynski Clinic contacts the family with the results of his John’s first post-ANP scan:
Written Nov 6, 2009 9:10am
GREAT NEWS!!! Dr Aslar from Burzynski Clinic called this morning & told mom that dad’s tumor has shrunk!!! Yes, We’re so happy, 27% it shrunk! So we are all very much praising God & Thanking all of you for your continued prayers & encouraging words here. A volunteer from church showed up while I was on the phone with mom this morning. VERY HAPPY… we all are! Thanks for sharing in this BIG STEP. It’s far from over & it WILL BE a continual long road with some bumps along the way, we are headed on the right pathway and now know that Burzynski has a lot to offer us & so many others!
I am reserving my judgment at this point about these results. I have seen so many lousy readings of scans from the Clinic (look at Evan W, Justin B, Georgia M, Cody G, Leslie S, or Chase S), that I am loathe to accept the results without confirmation from another source, which we don’t have here. He’s back upping the dose on the ANP, and his hands are trembling again. On the 16th, more side effects are appearing:
As of yesterday, Dad was sounding very good considering everything going on. He has been sleeping a lot more & seems to have some trouble remembering & recalling correct words, etc. This is fairly easy to deal with as he is thinking fine otherwise & seems to have a good outlook. This past Thursday, Mom had to take Dad to the dermatologist for a rash that developed all over the back of dad’s legs, thighs & back. The clinic thinks it’s from the Decadron, Steroids… and he is not taking a pill at night (b/c it makes him tired) imagine that? and cream for this as well.
So, it’s not the ANP. Right? On the 16th:
Dad had to stop the antineoplastin treatment again this morning b/c his r ash was so bad all over his body & physicians were concerned about this becoming an internal problem. Pictures were sent to the clinic & they came to a conclusion as of now that it is most likely not from the steroids, but the actual antineoplastin therapy medication/s.
In the same post, we have one of the most direct accounts of “worse outcomes means it’s working” stories that I have seen come out of the Burzynski Clinic:
I want to mention that the IV nurse told mom today that she’s been there for 10 years & has seen this before & many times, the more severe symptoms that are seen as a result of the therapy is really a good sign that it’s working better. I know this nurse & she is very honest & helpful. She also runs the class they run every week for new patients. She is amazing & so very helpful in her honesty; she was not surprised to see dad going through all that he did prior to leaving the clinic. Although we were really scared… we have to believe this is working & they are doing the best they can to help make it work, but have dad & mom be comfortably safe, too.
Mom took Dad to the hospital for testing early this morning a s the clinic recommended this after he had a high fever & symptoms from another rash after starting the medication yesterday morning. This started in the afternoon with itching all over & fever well into the night, etc. Fever broke finally around 2 AM or so? They had to stop the antineoplastins again until further testing is complete & this allergic reaction subsides on safer levels. We are uncertain what will be done or any options right now. I will update when we hear ASAP most especially for those of you waiting & praying, too.
A few days later, he is on 1/2 the dose, trying to stay on the program. They creep along on the ANP, and his weight seems to be going up (his weight loss had been a real concern).
As I’ve mentioned before, when I write these, I generally don’t look at the entire story first. I experience the stories as the patients tell them (albeit from a distance). It brings me no happiness to report the results of his next MRI:
Written Dec 11, 2009 9:44pm
Today we got results back from Burzynsi’s MRI reading from Thursday morning. It appears that Dad’s tumor has grown and this is most likely due to the lapse in treatments & lower dosages in medication since he had the reaction weeks ago. They are still working on getting this under control & we would ask for continued prayer that the treatments will get back to the necessary level to continue killing off this tumor without any further problems. There may be some swelling involved at this point & we really hope to not have to deal with the effects the steroid brings, however, we will face together whatever we need to.
Aside from the loosening up of his eyes, we haven’t seen any real signs that substantial progress has been made up to this point (he was starting to have language problems), and the family is rightly perplexed:
Yes, It’s a bit of a setback & hard to take as the last MRI showed such improvement as 27%. We are not clear as to what the growth actually on that site, but if we have better knowledge, I will post here as further details become available. Another MRI will be done in 4 weeks. As dad said tonight… we suspected this might be a problem with the reading this time, he also noted this during the ramping down of the treatments with lesser dosage in the weeks past. So, he’s right, it’s probably to be expected, he is trying to figure the math out on the 45% they said in growth, we do not know where this would be calculated from though.
They ultimately figure that the tumor has grown some 39% in the 2.5 months on ANP. On the last night of 2009, a horrible year for the family, we hear he is again approaching the maximum dose of ANP. It has failed them so far, and “progress” is indistinguishable from decline, as best as I can tell:
It’s really starting to impact his mental & physical capabilities once again as he ramps up towards max dose again & this is very hard for him & for us to see and work with at the same time. God gives us all the strength. He does know all that is happening every minute & it’s easy to forget that… This is a reminder of when we were in Houston & all of this started towards the tale end of our stay at Burzynski. Slowly the 2nd bag will be watched by 5 step intervals, each ramp up makes a huge difference, in these stages, it seems. We are encouraged in a way, as I can only think this means the medicine is doing the work on that tumor. Beginning signs have been slurred speech, shaking in his hands & short term memory with slight hallucinations to start, in the last two days he’s had some coughing / swallowing… related to possibly swelling & things going down the wrong way, weakness & extreme exhaustion. Mood swings are always possible & VERY HARD for those of you who know this sweet, kind & gentle hearted man. These are just a few to name for now. Please be praying these will be minimal if they have to be to kill off this tumor.
Several patients on this site with brain stem tumors experience problems swallowing. It’s sort of difficult to imagine that could be a good thing. If Burzynski’s people report that the center of the tumor is dying and say it’s a good sign, I will flip out and have to take a break from this. This family is as close as any, and by god they deserve better medical advice.
When a patient is so sick, loved ones pay attention to minutia. Every little change in status or fluctuation in symptoms is read like a tea leaves, as we see on the 5th:
It seems that his balance got much better yesterday and is pretty bad again today. The steroids & tumor’s presence with activity or rate of how the medicine is working makes all the difference here, I’m sure. Only the MRI can reveal the truth here. Tomorrow dad has his monthly physical; Dr’s appoint. with Dr. Cherry & his next MRI is scheduled for Jan. 11th. He is up to 161 lbs as of this morning, for which we are grateful for his growing appetite.
The poor guy is developing ulcerations in his mouth from the steroids:
Otherwise, Dad is about the same; definitely more difficult times with balance, memory & speech issues today. It’s very hard to see him struggling through the frustrations of trying to be strong & find the right words, etc. He is still positive & has the faith that is stronger than we can fathom.
Dad had a fall today in the bathroom this morning, bruised ribs possibly… it was a hard fall. It is currently being treated with a gel pack. He says “more medication, more falls.”
The 11th brings news that the family wants to hear from the Burzynski Clinic:
Regarding Monday’s MRI Results:
Praise the Lord, Burzynski thinks they got the tumor stopped, where it is. So, it’s basically the same size it was the last time & according to them, it’s stable & they will try to ramp up the bigger bag. So, this is the news… Burzynski called today to say it is now called “Stable Disease” … This report will be verified with Dad’s Dr. [C] who is our local Dr & Neurologist, he receives the same MRI reports. We all needed to hear this good news, most especially, Dad & Mom.
We don’t get the second opinion. I would certainly rather have an oncologist looking at this (with apologies to all neurologists out there).
In a few days John’s back in the hospital having surgery to replace his port, as blood draws have been difficult. He’s also nauseated quite a lot.
On February 1, it seems that the gains reported in the scans are not accompanied with overall improvement, at least not as far as I can tell from the descriptions:
Written Feb 1, 2010 10:44pm
It’s time to update once again… Dad’s condition is about the same. He is having a lot more trouble with balancing & over all weakness it seems which makes it hard for both Dad & Mom to get around the house. This medicine is taking it’s toll, but we continue to have hope & try to find peace in knowing God is in the details. Dad’s speech is very slurred & thought process slow, but he is still very sharp.
The next MRI, on the 8th:
Written Feb 8, 2010 2:16pm
I have WONDERFUL NEWS to share with you all today! Mom & Dad are very happy to hear from Burzynski that the tumor has stopped growing, since the last MRI 3.5 weeks ago, there has been no more growth!!!They were told that sometimes the tumor does not shrink or disappear, but will just die. If the upcoming MRI’s show the same, a Cat Scan, maybe PET Scan (I’m thinking? as the Pet Scan shows the blood activity & much more details) Anyway, one of these will be ordered by Dr Burzynski to show if there has been any activity in the area or surrounding areas to reveal the evidence & actuality of what is going on in the brain stem tumor’s location.
Dad is so incredible, he realizes when he is not talking right or making sense, sometimes immediately & will try to correct himself at the moment & sometimes it only gets worse, it’s frustrating for him & sad for us to see him like this. The medicine is powerful & taking over a lot of what used to make more sense, but we believe that it’s mainly the medicine doing this & less of the tumor.
On March 9th, we get news that the tumor is not growing, which is happy, but we are also not seeing any abatement of symptoms.
On the 21st, John is in the ER with early symptoms of pneumonia. He has had problems swallowing and coughing in the past.
On March 30th, he’s completed antibiotics, but has a fever, and we get this…odd exchange:
Yesterday Dad had a fever again~ Mom was really worried about this as it was 9 days after the treatments for the lung infection. So, she called Bursynski… and the nurse told her this could be from tumor breakdown.
His next MRI, in April, shows no change. On the 23rd, we get a glimpse of John’s daily regimen:
One of the many problems that is hard to help presently is that… he rests, but hardly gets any GOOD sleep as he’s woken up every hour at night to drink & turn to the other side so his bed sores do not get any worse on his seat area. These do seem to be doing/healing well. As far as sleeping during the day… His days seem to be disturbed a lot as people are coming & going, it’s like grand central station here some days. AND the Dr’s have told mom to not let him sleep for more than an hour or 1.5 hours at a time during the day. He does have to pee about every 45 minutes or so anyway and he wakes himself up for this. He is drinking about 3 Gallons of water daily. As far as dad’s care, the process of preparing his medicine bags is #1 priority for mom as well as the natural food supplements he’s taking 5-6 times a day; I would say this is at least adding up to 60-90 pills a day. Keeping track of all of this & bathroom times are very much a full time & physically draining job all in itself. You will be happy to know that nearly every day he is riding on his exercise bike for exactly one 1/2 hour at level 4 and some days it’s alternated or in addition to the little trampoline bouncer for about 10 minutes which is hard work for him!
He had something of a fainting spell and confusion on the 25th, though his numbers were all normal. At the year anniversary, John’s daughter chronicled the last year in a touching video, which really puts what John and his family are going through in perspective:
May 2010 Dads Brain stem tumor Cancer battle Shining Story of Dad’s Life Peace Memories
On May 8th, we get another report of tumor growth in an MRI, but Burzynski seems to suggest that 10% growth could be evidence of improvement…by some process yet to be described by medical science.
Written May 8, 2010 11:17am
On Friday Afternoon, Mom received the phone call from Burzynski that revealed to them Good News & Bad News… This is how mom described it. The MRI results showed an increase in size in dad’s tumor about 10% and they are wanting Dad to have a Pet Scan next week to show more details whether there is still tumor activity or the tumor cells are dying & this could be a good result of necrosis (spelling) meaning the tumor cells are breaking up & dying, this is what Dr Burzynski said when the growth was reported…
Only five days later, thinking that maybe they did want growth(??), we see this:
Mom said the appointment was good & as usual, the Dr is peronable & thorough. He allows dad to participate in talking, answering questions & takes the time to chat… etc, which both Dad & Mom really appreciate. (The Nutritionist that they see is the same way from my experience with her.) Dr [C] is also very encouraged with all of the “no growth” MRI’s in the recent 5 consecutive months. The results so far clearly show that the tumor is being effected in some way & he is sure the Pet Scan will define more about where & how the tumor & surrounding area is reacting to the medication.
How is 10% growth “no growth”? I’m genuinely confused at this point. On May 26th, after a PET scan:
Today, mom spoke with the nurse at Burzynski Clinic after a combined meeting she had with Dr Burzynski regarding dad’s Pet Scan. Basically, the result of the Pet Scan has shown that there is the same amount of activity in Dad’s brain stem tumor since October when he started treatment. It is good news that there has not been anymore activity or growth since that time, however… WE WANT this treatment to do away with this tumor as we know it’s possible! So, the next step is what Dr Burzynski is recommending & this is to up the dosage of the larger bag of medicine that dad is on by 20 increments at a time over the next two days, until he reaches the 500 level. He has currently been on 460 for quite a while.
So…no effect on tumor activity? Well, if it’s not working, you might as well keep on with it, seems to be the logic of the clinic here. And it’s not without risks, as the writer notes. John has had some strong negative reactions to the ANP before. On June 14th, during a neurological test, there is evidence of more decline, apparently:
Written Jun 14, 2010 9:03am
On June 11th, dad & mom had their monthly appointment with the Neurologist, Dr [C]. He told them that dad seems to be strong, (as far as the tests he did in gripping his hand, etc) but losing more in abilities at this time. (Such as in his speech, which more labored & he is extremely tired & balance is really not there at all) He thinks most of this is related to the tumor, but he is not familiar with the medicine that dad is on, either.
Pm June 29, we hear that John is having fainting spells:
Written Jun 29, 2010 9:26am
We are still waiting to hear when the next MRI appointment will be scheduled. Dad’s next Neurologist appointment is on the 6th of July. Mom is specifically asking for prayer today as answers to why Dad continues to be having these fainting spells that used to be less frequent & now are happening sometimes, 2 times a day. It’s very scary. Although he does come back fairly quickly, there is no known reason or answers.
By his next MRI on July 10, John is having a hard time holding his water bottle and seems so feeble that his wife says that “she was so worried that it seems like she was losing him so quickly before her eyes, this was a major change & difference.” They are considering another go with steroids:
Mom got a call from Burzynski that we are still trying to make sense about the dosages of the steroids & what they want/why, etc. The 5 powerful decadron he had yesterday was a HUGE amount as this stuff lasts in your system for days, he was only on 3 (I remember, at Burzynski) and he was hiluscinating, etc. Mom is going to give him 3 for the next day or so & then ramp back down to 2 again. There may still be swelling & headaches they said. If this continues, he will have to go to the ER. PLEASE be in prayer these headaches will subside UNLESS, they are diminishing & doing “A GOOD NUMBER” on that tumor!
On the 20th, we hear:
Mom says, Dad seems to be much more weaker in strength (most especially in his legs) I know he’s had a lot of problems with shaking & instability in holding up his head lately, too)
What progress has been made, I wonder?
On July 25th we see that the family is laboring under an optimism that is beyond reason, as far as I can tell.
Mom reminds us some of the patients that this has worked positively for have had to be on treatments for 12-18 months b/f they started seeing complete turn around in the MRI & process of beating their tumor down. She said, do you want to quit in the 17th month? … Dad always has prepared & knows that Heaven is the most amazing place, he is ready IF God wants to take him. […]
God’s plan could be that he would see strength again & experience a miracle in this world, like not many people do! This tumor could shrink like it has for few of the amazing patients we have met through Burzynski’s treatment. He could get some vision back & have help with healing & walking again, etc… However, we know the truth about brain tumors & fewer success stories with conventional treatments, even Dr B’s treatment & process through TX, is much harder than we anticipated… They are not giving up on it, but keep the truth’s in mind as to who is in control. Dad said, God is using Dr Burzynski, he believes this whole heartedly!
On August 10th, this battered, courageous man goes off the ANP because of high sodium levels. Throughout, John is thinking mostly of his family, it seems, and his daughter’s writings illustrate his generous spirit.
Written Aug 10, 2010 9:01pm
Mom got a call last night that Dad has an MRI at 8:25 AM, Dad’s sister Mary will be going along which is always very helpful.Dr Burzynski’s nurse who calls mom every day, has been working with the clinic for 9 years and helps answer any questions. Dr Barbara works hand in hand under Dr Burzynski, she is Dad’s immediate Dr. for the clinical trial. She told mom that from her experience of 20 years working with Dr Bursynski’s patients reveals that slower growing tumors, such as Dad’s, often take longer to respond to treatment.
On Aug 13, the family hears from the Clinic that the tumor has shrunk 10%, but according to the RECIST criteria, this is stable disease, not even a Partial Response. (Though someone please let me know if the RECIST criteria do not apply here, and I will correct it.) At the same time, however, we hear this:
“Dad is coughing a lot after drinking water, etc & his head has been shaking again lately.”
Where’s any improvement? On August 17th, after upping the dose, John starts having the allergic reaction again. They pull back and then try to keep upping the dose incrementally, and with that comes a need for even more water intake and more problems with the sodium levels by the end of the month.
At the neurologist’s in early September we hear this:
Yesterday morning was Dad’s Neurologist monthly physical check up & the Dr mentioned that although Dad’s quality of life is not so great, he can still get to the cabin & enjoy his family & grandchildren. There were many questions mom especially had regarding the “passing out” type spells and his head shaking. The Dr thinks that this is related to the tumor, but also related to brain waves interacting with Dad’s blood pressure
On September 15th, more symptoms:
Mom says Dad is about the same, except that his excess mucus is causing more issues with his swallowing, choking & coughing, which has become more of a problem throughout the day and night time when sleeping. It’s so hard when we do not have answers and the Dr’s & the Nutritionist just do not know as to why this is happening, if it’s tumor related or another problem that can be addressed. We do not have many answers for symptoms or problems related to tumor or meds, but must carry on, of course… Dr Ella shared with mom, that she heard this was a side effect of the decadron.
Well, a nutritionist isn’t an actual doctor, and Ella seems to be pulling things out of her hind quarters. Seriously, I could declare myself a nutritionist right now with no penalty. Problems swallowing are of course, associated with tumors on the brain stem. If nothing else, I’ve learned that after following all of these stories.
They get the results of another scan on Sept 22:
Written Sep 22, 2010 10:03am
Preliminary results are showing no growth, with “Increased enhancement” … whatever this means, we have tried to search, but have made no clear sense of what this means & have to wait… SO, we have not heard official word from Dr Burzynski. Only from the nurse that calls mom daily/ weekly, checking in… We’re waiting… as patiently as possible.
You know, I get damned tired of reporting about worsening being interpreted as “improvement.”
Written Oct 5, 2010 5:30pm
Yesterday was Dad’s appointment with the Neurologist. Mom called me to tell me she was able to get the best insight on what “enhancement” means from Dr [C]. Although they have not heard back from Burzynski on the details of his last MRI, there is no change in the tumor, just the blood carrying activity around the “blood brain barrier” and in the vacinity of the tumor location. Usually this is not good, but in Dad’s situation it could actually, possibly, be a good thing b/c of tumor activity, causing possible breakdown, this is our hope, of course. No one really knows though and this is probably why we have not heard anything positive or negative on the “greater enhancement on the MRI” from Burzynski, himself… In another few weeks, we will have another MRI to reveal the direction of what this means, WE HOPE & PRAY! At this point, they want MRI’s done every 4-6 weeks.
The next update of note comes on Nov 19th:
Written Nov 19, 2010 1:41pm
Today Mom heard back from Burzynski regarding the MRI results. They revealed no change again in size. MRI’s do not show whether there is activity in or around the tumor. Pet scans are the best way to show this (through measuring sugar uptake, although they are not super accurate, either, but gives the indication of the level of activity which the MRI cannot do. The recent Pet Scan did show some activity of “9”, last October the Pet Scan revealed the number “11” … We would like for this number to show “0” and this would reveal Dad’s tumor is dying off or dead, completely. This is how we can pray in the future, specifically that the tumor cells would DIE. So, in short, Burzynski is still considering this stable disease with no change. MRI’s are now every 1-3 months and treatment continues every day with Mom changing the bags & on this hefty routine & tiring schedule.
Then, on December 16th, we hear that due to lethargy and concerns from some friends from church, the neurologist has set up an emergency MRI for John. On the 24th, John is still in hospital and the family is considering a feeding tube, since his swallowing is so poor and leading to aspirated food and opening him up to the possibility of infection. He came home on December 28th.
We get a hint of John’s condition in the Christmas letter sent out by his wife:
John is pretty much the same as he’s been the last few months. He cannot walk or even stand on his own and his speech is very slow & slurred. It makes communication difficult, especially with my hearing problem. His appetite is still good and he tries really hard to be the best patient he can be. His visions is also not good. The last MRI report showed no growth, so, although it’s not what I hoped for, it was good news that it didn’t grow. His thinking is still pretty clearn although he can’t think of words he wants to use & he is different in a lot of respects. One great blessing is that he still loves me, even when my impatience is evident. […] We resume Burzynski treatment on Mon. Jan 3rd at a reduced dose for a while. Not sure how all this will work with a feeding tube and the water intake, but they say it’s possible. Please continue to pray for a miracle!
On January 9th, we hear that the ANP is now apparently off:
On Friday Dad was taken off the Clinical Trial Antineoplaston treatment which he had started back on Tuesday on about 1/3 the full dosage, after his 7 day hospital stay over Christmas. The reason is, b/c he started to have swelling in his feet again and suddenly his liver enzymes spiked to more than double the following morning, these were the blood work results. So, all of the Dr’s came together via phone calls back & forth. They decided quickly, that it was best to not have him on this Antineoplaston treatment any longer & do another Pet Scan of his brain to determine any level of activity & then the next course of action/treatment that would be suggested by Burzynski, for review, first.
And then, on the 16th, back on, at (of course) Burzynski’s suggestion:
It’s quite disappointing to both Dad & Mom that the activity level is the same after all they have been through on this treatment. There are few options, but there is always something else to consider, most especially, that God is STILL in control! For now, Burzynski is recommending that on Monday morning, Dad go back on the 1st (Larger Bag at 160 dose) and not the smaller bag. They will then check the Liver Enzymes through blood work & follow this closely in the coming days.
They have a discussion with the doctor again, and he’s STILL bullshitting them about “tumor breakdown.” It’s been a year of steady decline in function, and he’s keeping them on this very expensive, very harsh regimen for…what reason I can only imagine:
Written Jan 21, 2011 12:36pm
Yesterday was Mom’s conversation with Dr Burzynski from 5:15 until 6 PM they discussed the options & Dr B answered many questions mom had planned. In addition we had a welcomed guest, Dad’s long time friend & business partner, Bill came to take notes & be helpful in understanding & asking his own pertinent questions. This opened the opportunity to really dive in deeper into Dr Burzynski’s purpose & any doubts that were looming in this trial & the reality of dad’s case, what to expect, etc. An important question answered was that indeed, they have had success with patients on just the one bag. He also mentioned that Dad’s tumor is the very hardest kind of tumor to treat. They also noted that the liver problems that have occurred sometimes could be in relation to tumor breakdown. This does sound hopeful, but is not always the case, we know this can easily go both ways in dad’s very fragile state.
Getting worse is getting better. Perhaps this is why so many of his patients get better and die. He’s back on a full dose by March 25, with slurred speech. He cannot drink at all on his own at this point.
April 20th MRI reports no growth. But consider the source. In late April, John had a heart attack. He continues to have an accelerated heart rate a month later, a resting rate of 245.
By June 20th, there is still no progress of the tumor, but John’s in really bad shape here.
With this said, they are still waiting for a continued positives, no growth & SHRINKING would be a wonderful answer to all of our prayers, we continue to have hope with new opportunities opening every day. Mom said she asked for Dr Burzynski to look into dad’s case once again to see if there is anything else they can do in addition to the treatment. In some cases, the FDA will allow him to add something else.
His sodium levels are up at the end of July, and on the 26th he is off to the hospital by ambulance. They initially think he’s had a stroke, and he is unresponsive for a time, but he comes back and the different specialists suggests that perhaps something is wrong with his kidneys. We don’t get a clear indication of what was happening by the time he returns home on the 29th.
Aug 2, John is having some trouble breathing. This month it seems that his sodium levels are all over the place. Then we get this on the 7th:
PLEASE be in prayer today for Dad & Mom. Mom called me last night & wanted to update again that yesterday was a hard day as Dad’s sodium was back up & he’s only been on half the dosage. This keeps happening more & more & we cannot make any sense. […]
I called this morning to check up on them… Mom got the ok to hook him back up to the treatment, but we are all concerned as he is on 1/2 the dose and this keeps happening with the sodium. I do not exactly understand clearly. (Dr. Barbara, dad’s main Dr from the Burzynski clinic has told mom that it is possible Dad’s tumor has grown or changed shape to where it is effecting the part of his brain that controls the sodium levels) His next MRI is around mid September which I will keep you updated on. Keep in mind Dad’s tumor started out the size of a pencil point & is not a large tumor, or much larger than where it was nearly 2.5 years ago when he was diagnosed. It’s just very tiny in a bad location in his brain stem where it effects his heart rate, swallowing, vision, etc…
Or it could be the gigantic amount of sodium that Burzynski’s been pumping him full of for the last 2 years. Well, they talk to the neurologist on Sept 9:
They had an appointment with Dr [C] yesterday morning & his report is Dad has an MRI scheduled for this next Tuesday, he says he is noticing some change in dad’s eyes, they do not look better, but a bit worse to him. However, he said Dad’s strength & overall signs remain about the same, otherwise. Dr [C] suggested that going back to Texas for the Clinic to monitor Dad there would be a good idea. This will be quite the ordeal to work out for traveling & accomodations once in Texas. These details can be worked out though, it may happen fairly quickly, if they decide to do this. I will keep you updated on the MRI results this next week.
This is a total breakdown, as far as I can tell. I don’t know what this neurologist added. Sounds like a nice guy, but he’s shipping his patient off to another not-an-oncologist in Texas. As a matter of fact, I haven’t seen an oncologist since…very early on in the narrative. On September 16th:
Mom heard back about dad’s most recent MRI which was on Tuesday & the news was not good. Dad’s tumor has grown 13% and with the sodium balance issue there is greater concern with the clinic & continuing treatment for mom, too.
On October 1st, we hear that John is off the ANP:
She mentioned to me that dad is completely taken off the Antineoplaston treatment now with Dr Burzynski & this is new news to me. I think this is most recent info & findings from the Nutritionist as well as the Burzynski clinic, who agreed that his body is really rejecting the sodium now. This does not mean he cannot go back on or start up later. The door is always open, I’m sure… I know several patients end for some time, even years & then start again after time has passed.
On Oct 25th the tumor has grown again. It was growing while he was on the ANP, you’ll notice. Aaand it sounds like Burzynski’s other treatment is being considered:
They are waiting for Gene markers to come back from a recent blood test that takes quite a while longer, about a week or so. It was done last Tuesday. This is a different therapy that Burzynski Clinic offers in TX.
So, a blood test, not a sample of the tumor. How’s this any different than palm reading? I anticipate a really expensive, untested chemo cocktail if they go through with it. John has a fall and breaks his upper arm. On November 23, 2011:
Dr [C]’s latest report is that Dad has been steady and quite amazing in progress since going off Burzynski’s trial (in some ways, especially his speech is much better) However, the is decrease in his eyes is obvious, however, his tumor has really not increased all that much since going off the Antineoplaston treatment. They continue to watch this closely with the new method/s of treatment at this time. Another MRI will be scheduled soon & I will be keeping you informed & updated.
Before Christmas, the neurologist finally comes to a decision:
Written Dec 21, 2011 7:33am
Christmas is here & more critical decisions to make:
Dad & Mom are asking for your prayers regarding a decision for chemo.
There are a few new things to update; the latest being that Dr [C], Dad’s Neurologist recommended they see an oncologist & they did go and found out he wants to start Dad on chemo ASAP as his tumor is growing.
I don’t see a decision here. Nonetheless, he is now completely off ANP, and on Feb 4 we see:
Written Feb 4, 2012 11:21am
Dad & Mom called last night with GOOD NEWS to report:
No tumor growth in this most recent MRI, done this past Monday, again! Praise the LORD~ We are so happy to report this news. Dad & Mom called me last night & I could not update right away as the site was down here
So, uh, this is exactly what was happening for so long while he was on ANP–being weird and unpredictable. And then at the end of March, it grows another 10%. In May, John is having extensive oral surgery because the nutritionist thinks that mercury fillings are affecting his health. Sigh.
The tumor grows, but John is still not seeing an oncologist as we hear on May 24th:
Dr [C] is recommending that Mom & Dad at least talk to an oncologist nurse again. He is THEN willing to write dad a prescription for the Vit C drip that Mom has been wanting added in. (Mom is very pleased that he is willing to “think outside the box” of mainstream treatment & medicine practice.
John fought hard the whole time, right to his end. I have omitted the not-inconsiderable sacrifices that his wife made and the pain she worked through to give her husband comfort. It’s a story of selflessness and love that can’t be replaced. I’m deeply, deeply moved by their devotion to one another.
Usually, this is where we would put an appeal to donate to St. Jude’s. You may still do that, if you like, but we are now actively campaigning for an investigation into how the FDA decided to allow Burzynski not only to continue his ridiculous trials, but to actually get a phase III trial after a decade of abominable site visits. Go to thehoustoncancerquack.com and you will find the resources you need to put primary documents–the FDA inspection notes–into the hands of your representatives so they can conduct an investigation. All appeals to understand this made to the FDA have failed, so now we need to press the issue onto the committees that oversee the FDA. Please help us uncover what went wrong so we can fix it and so this never happens again. Find out about real clinical trials by visiting clinicaltrials.gov.