This blog is more specific to the drug Denise was trying to stop. It should be helpful to doctors, nurses, scientists, or those just wanting more particulars. If you haven’t read the previous blogs I would urge you to do this first in order to get a general idea of the whole story. Kai was originally diagnosed with Pre B ALL around Christmas 2007. He was successfully treated and went into remission. In August of 2010 he began experiencing problems in his right eye and the doctors speculated that he had a rare relapse isolated to his ocular nerve.
Once again, thank you for all the support for Denise and Kai. With the blogs we have kept the story somewhat general to keep the length down so the regular public who are not doctors can get the gist of the story. Because of the overwhelming support this story is finding its way to doctors, nurses, scientists, and media. I just want to make it very clear that Denise is not trying to stop all treatment to her son and if she had a choice would even prefer the Erwinea Asparaginase drug she is fighting to be continued. Unfortunately the reactions are life threatening so she is literally fighting for little Kai's life. It is very hard with just the general information for the scientifically inclined to know what is going on so I am giving a little more detail here for the more scientific minded.
The asparaginase drugs are indeed a very important front line drug in the fight against cancer. They are basically an enzyme which catalyzes a protein called asparagine. Leukemic cells need asparagine to survive and most importantly to divide. Normal cells can make asparagine on their own. The goal is to effectively deplete the asparagine in the blood to the point that there is not enough of it for the leukemic cells to continue multiplying. Hopefully the leukemic cells die and have no offspring so to speak to continue their horrible legacy.
The drug normally administered to facilitate this process is a drug called Pegylated Asparaginase, known as PEG Asparaginase. It is actually a derivative of the E. Coli Virus, has been known to have these properties since the 1940s, and has been used as a cancer fighter for over half a century now. The statistical data of its success is very significant with numerous studies having been done. Unfortunately, twenty to twenty-five percent of people who receive the PEG Asparaginase have such bad allergic reactions to this drug that they cannot continue to take it. Little Kai is part of this group. There are actually two problems with the reaction: 1) the reactions tend to get worse and can cause the death of the patient 2) if a patient’s body has an allergic reaction, their own antibodies destroy the drug rendering it ineffective. Because of this another drug was developed as an alternative to the PEG version of asparaginase.
Erwinea Asparaginase is the alternative currently administered here in Calgary. Unfortunately it does not yet have the same statistical weight behind it as does the drug PEG Asparaginase. There has simply not been the same number of studies with the same number of patients to definitively prove its effectiveness. This is most likely the reason this drug has yet to be approved by the FDA in the USA. The scientific data currently shows that Erwinea is far less effective than the PEG Asparaginase. The consensus is that it takes six to nine doses of the Erwinea Asparaginase to equal one dose of the PEG Asparaginase. These doses must be given roughly every other day in a course of treatment. There is no scientific data currently available to show that there is any significant benefit to patients receiving less than the six consecutive doses of this drug. If a patient is allergic to Erwinea Asparaginase there are the same two problems as stated above for the PEG Asparaginase.
Once again, thank you for all the support for Denise and Kai. With the blogs we have kept the story somewhat general to keep the length down so the regular public who are not doctors can get the gist of the story. Because of the overwhelming support this story is finding its way to doctors, nurses, scientists, and media. I just want to make it very clear that Denise is not trying to stop all treatment to her son and if she had a choice would even prefer the Erwinea Asparaginase drug she is fighting to be continued. Unfortunately the reactions are life threatening so she is literally fighting for little Kai's life. It is very hard with just the general information for the scientifically inclined to know what is going on so I am giving a little more detail here for the more scientific minded.
The asparaginase drugs are indeed a very important front line drug in the fight against cancer. They are basically an enzyme which catalyzes a protein called asparagine. Leukemic cells need asparagine to survive and most importantly to divide. Normal cells can make asparagine on their own. The goal is to effectively deplete the asparagine in the blood to the point that there is not enough of it for the leukemic cells to continue multiplying. Hopefully the leukemic cells die and have no offspring so to speak to continue their horrible legacy.
The drug normally administered to facilitate this process is a drug called Pegylated Asparaginase, known as PEG Asparaginase. It is actually a derivative of the E. Coli Virus, has been known to have these properties since the 1940s, and has been used as a cancer fighter for over half a century now. The statistical data of its success is very significant with numerous studies having been done. Unfortunately, twenty to twenty-five percent of people who receive the PEG Asparaginase have such bad allergic reactions to this drug that they cannot continue to take it. Little Kai is part of this group. There are actually two problems with the reaction: 1) the reactions tend to get worse and can cause the death of the patient 2) if a patient’s body has an allergic reaction, their own antibodies destroy the drug rendering it ineffective. Because of this another drug was developed as an alternative to the PEG version of asparaginase.
Erwinea Asparaginase is the alternative currently administered here in Calgary. Unfortunately it does not yet have the same statistical weight behind it as does the drug PEG Asparaginase. There has simply not been the same number of studies with the same number of patients to definitively prove its effectiveness. This is most likely the reason this drug has yet to be approved by the FDA in the USA. The scientific data currently shows that Erwinea is far less effective than the PEG Asparaginase. The consensus is that it takes six to nine doses of the Erwinea Asparaginase to equal one dose of the PEG Asparaginase. These doses must be given roughly every other day in a course of treatment. There is no scientific data currently available to show that there is any significant benefit to patients receiving less than the six consecutive doses of this drug. If a patient is allergic to Erwinea Asparaginase there are the same two problems as stated above for the PEG Asparaginase.
Unfortunately, with the doctors having full control to do whatever they wanted with Kai, they have not been able to get six doses into him at any time. In fact the average amount of doses they have been able to give Kai in any treatment course is just over two. The problem is that the doctors speculated the reactions which were causing Kai to become ill could be from another drug. Denise, able to witness what happens to her son first hand after the Erwinea Asparaginase was administered, knew in her mind that this was causing her son allergic reactions. She had witnessed the side effects to the other drugs and by comparison knew he wasn't the same on Erwinea. As of November 7 2011 the doctors now agree that Denise is right and her son is allergic to the Erwinea Asparaginase. Considering the drug is ineffective unless a patient has at least six doses and is rendered more ineffective if a patient is allergic, this really resulted in needless torture to her son. It also delayed many other necessary treatments which could jeopardize Kai's long term chance of cure.
This is what started the whole process of Denise losing her parental rights to advocate medically for Kai. It was stated in court that she wanted to discontinue all treatment. Now that the drug has been stopped and Kai is safe from anymore reactions Denise still has no rights to speak on her son's behalf. This is in spite of the fact she was right all along. Now she must go to the time, expense, and stress of continuing in the appeal to re-instate these rights. At the same time she will be continuing to take Kai to all of his scheduled treatments and trying to give Kai some sense of normalcy in his life.
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