Yesterday we met with the neurosurgeon who resected Collin's original tumor to discuss the options for removing the current tumor. Based on the location of this tumor, he would not recommend trying to remove it surgically because it is just too risky; there is too much brain matter to go through to get to the tumor. Risks include bleeding, hydrocephalus, and permanent vision deficits. However, it is a good candidate for Gamma Knife Radiation, which is a procedure where radiation is used only on the tumor tissue to basically melt it away. The tumor has to be small for Gamma Knife, which this one is. With a Gamma Knife procedure, small lines of low dose radiation would be passed through the tumor at many different angles. The point where these lines intersect (the tumor) would receive a high dose of radiation, but everything else around the tumor receives a very low dose of radiation. There is little to no risk of bleeding, etc.
Last evening, Dr. Comito called to discuss some feedback she had received from Dr. Kieran at Dana Farber Cancer Institute in Boston. After considering all of the input and feedback from some of the top pediatric oncologists and neurosurgeons in the country, we have come up with what feels like a logical plan of treatment.
First, Dr. Comito feels that even though there is only one nodule right now, there is most likely still residual disease that can't be seen yet and so therefore cannot be gamma knifed. In order to attack that and keep it in check, we will start with a round of chemo. Another MRI will be performed in a few weeks to gage the effectiveness of the chemo. If the nodule is smaller or no longer there, that means the cancer is still sensitive to chemo, and we can do a second round to attack it further before doing a Gamma Knife procedure to the tumor bed. If the MRI were to show that the tumor is the same or larger, chemo would be abandoned and we would Gamma Knife the tumor and the immediate area to kill any remaining tumor cells.
The next step would be metronomic, or maintenance, therapy which would combine some chemo along with some anti-angiogenic drugs. Tumors recruit their own private blood supply to obtain oxygen and nourishment for cancer cells. Antiangiogenic drugs cut off this blood supply, which in turn starves the tumors and prevents their growth and spread. This type of therapy can be used for quite some time. The hope is that using this kind of therapy can buy us more time before doing craniospinal radiation. At some point we can do the 3F8 antibody treatment at MSKCC as well; at this moment I cannot remember where in the plan this would take place.
So, tonight Collin will start back on chemo at home. He will receive Temozolomide for five days, and Etoposide for ten days. On Monday November 14, he will have surgery to place another mediport. Then on Friday November 18, he will have a hearing test in the morning, and later that day he will be admitted to the hospital for 3-4 days to receive Cytoxan. He will lose his hair, so we will probably shave his head beforehand so he doesn't have to be all itchy as his hair falls out. His immune system will be knocked out again, so we need to be extrememely careful of germs. He will probably be hospitalized again for a neutropenic fever after finishing the round of chemo. We don't relish being in the fray again, but we do feel better now that there is a plan. We have complete confidence in Dr. Comito; I know she has agonized over these decisions as much as we have. She has consulted with very respected colleagues, and she wants the best possible outcome for Collin.
Bobby Williams here. Just wanted to let you know we are praying for you guys day and night. Tell those crazy nurses in 7west we said hello. Jenn you are one strong ass woman, our hearts go out to you and the family.
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