June 3, 2012

June 2, 2012

I hope this month is the end to what I keep calling the first chapter of this process. Even though we will be starting our 3f8 and doing our radiation, Clayton will also be spending this month recovering from the hemorrhagic cystitis caused by chemo...and the hydronephrosis that stemmed from that. It seems like he will have to keep the nephrostomy tube for a little while and then to be safe they will internalize it by removing the exterior tube and placing a stint in his ureter. However, they cannot do that until his bladder recovers from the hemorrhagic cystitis. None of this however should delay our 3f8 or radiation.
The 11th is not so quietly sneaking up on us. It will be here before we know it. I did find out that we will be in patient for the first two rounds of 3f8 for two reasons. First, because the first two rounds will be high dose. And second, because they found that they can better manage any residual pain in patient. They did not use to do it in patient, but now they do. We would rather be out patient, but we can't argue with better pain management. We are still hoping that Clayton will not experience any residual pain.
As for the stem cell transplant that we chose to forgo, I have learned that it would have been a HUGE problem for the already problematic hemorrhagic cystitis. Some of the chemo Clayton got kicked his butt so much that he got the severe hemorrhagic cystitis that often times is seen in kids who have undergone a stem cell transplant or radiation to the bladder. I cannot imagine how bad it might have gotten if we did the stem cell transplant. Hopefully his sensitivity to the chemo is an indicator of the sensitivity of any neuroblastoma cells in his body to the chemo.

**For those of you wondering about the stem cell transplant verses other methods of treatment, I'll tell you what they told us here, which has been the best explanation. First off, they refer to it as a stem cell rescue. Chemo knocks Clayton's bone marrow/counts out to a point where it needs time to recover. The recovery time slows as chemo progresses and his bone marrow gets lazy. Some chemos also affect his counts more dramatically than others. This is where the number one difference between typical chemo and a stem cell transplant comes in; a person's bone marrow can recover from normal chemo while a stem cell transplant/rescue destroys bone marrow to the point it cannot recover. Therefore they "rescue" it with previously collected stem cells.

I have also had people ask what the point of the different treatments are so here you go:
Chemo is to kill as much of the tumor as possible and hopefully eliminate cancer cells in the bone marrow. It targets all cells reachable by blood vessels.
Surgery is to remove the main tumor mass.
Stem cell rescues are to completely destroy the body's bone marrow in an effort to rid the body of any "hidden" cancer cells once a patient is in remission. We of course are trying to preserve Clayton's quality of life as much as possible and so we are not doing this unless it becomes absolutely necessary if he were to relapse.
Radiation is specifically targeted to further obliterate any surviving cancer cells at the site of the primary tumor or any area most prone to relapse.
Acutane is taken for 6 months after induction treatment as maintenance therapy specifically for neuroblastoma. It encourages neuroblastoma cells (immature nerve cells) to mature and stop dividing.
3f8 is maintenance therapy used to train the body's cells to seek out and destroy neuroblastoma cells. It of course specifically targets neuroblastoma cells. This is done either when a patient is in remission or has minimal traces left.**

Hope that helps those of you who had some questions.

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