Wednesday, November 08, 2006

Latest - Why I Haven't Updated...

I don't know. I was told to keep away for a while - for my health, but that seemed to snowball into this delay you're seeing.

Then again, I am typing really badly. My right-hand is all but useless, so I'm trying to re-educate it half the time, and telling my left-hand how to be the right the other half of the time. I also get mad at my right for not responding as quickly, but I'll get over that. My right-side as a whole is the weaker side of my body.

So, I don't know why I haven't updated, but I plan on back-and-filling notes and photos...

Treatment Phase 2 - Chemotherapy

Phase 2 of my treatment is supposed to consist of three weeks of chemo followed by five weeks of the drugs doing their work. That's 64 weeks total, and I just started Phase 2 on January 24th, so it's scheduled to finish in March of 2008. That's longer than I expected, but I learned (stubbornly) to quit making assumptions...

So, I've two treatments of Phase 2 Chemo at this point. For more detail, I'm supposed to receive three chemo drugs the first week, Cisplatin, Lomustine, and Vincristine. I also receive some steroids (Decadron), Saline and an anti-nausea drug (Zofran) at this time. I continue to take the anti-nausea for about five days as a pre-emptive strike against sickness.

The second and third weeks of chemo are supposed to be Vincristine. Vincristine is the only chemo drug I had during Phase 1 of treatment and my doctor has completely with-held it during Phase 2 because I have been suffering from a side effect of it, namely Peripheral Neuropathy. Peripheral Neuropathy is when your hands and feet become numb. I feel pins and needles in them constantly, but it has been wearing down since I haven't received Vincristine since late December. My first dose of Cisplatin also seemed to aggravate the Neuropathy, so it has been changed to Carboplatin for dose 2 forward.

It seems like the Peripheral Neuropathy can get worse and possibly be irreversible, so I trust my doctor's viewpoint. As of the third dose (scheduled for May 15th), I don't know what to expect. I did tell my doctor to give me everything as soon as he can because I don't want to "miss out."

And I haven't mentioned to this point that I will see the doctor every 8 weeks, a week before my chemo. I was glad to find out that he will review a new MRI of my head and my bloodcounts (more for chemo) at this time. Through 2 treatments of Phase 2, everything appears to be clear. My doctor doesn't tend to do spinal MRI's at this time, but I will ask for one. A medulloblastoma has certain areas it spreads to, the linings of the brain and spinal cord being the top two.

My endurance of Phase 2 follows. I haven't had any Vincristine during Phase 2 to date, so I don't know how it will effect me. The other week 1 chemo drugs I have received I can do without. I seem to feel bad for a week and then I have more fatigue for the next few weeks. The effects of chemo get much better as the 8 week cycle progresses. Unfortunately, I tend to forget about my bloodcounts, which chemo decreases, and my immune system is weak when I feel better. I still get out and do what I can...

Oh, and I see my Primary Care Physician (PCP) for bloodwork three weeks after I get chemo. My bloodwork is also checked when I see my Oncologist before chemo and the next 8 week cycle. There is only chemotherapy, no simultaneous radiation.

Updated 04/12/07

Treatment Phase 1 - Chemotherapy

Phase 1 of treatment was a combination of chemo once a week and radiation every business day for 7 weeks. Phase 1 of chemo started on November 8th and ended on December 19th and I had 4 weeks off before starting Phase 2.

My chemotherapy initially consisted of 2g of Vincristine per week. My oncologist reduced this dose to 1g about 2-3 weeks after my first dose due to Peripheral Neuropathy (see Treatment - Phase 2 for a description of PN).

On a day that I received chemo, I first had to do bloodwork and if my counts were OK then I would recieve my dose of Vincristine. My bloodcounts were always fine during Phase 1 of Treatment.

Vincristine's main effect seemed to be Peripheral Neuropathy. It effected my bloodcounts, but it was hard to tell since I received Radiation at the same time.

Updated 4/16/07

Treatment Phase 1 - Radiation

Phase 1 of treatment was a combination of chemo once a week and radiation every business day (5 days) for 7 weeks. Phase 1 of radiation started on November 6th and ended on December 22nd and I had 4 weeks off before starting Phase 2 (Chemo only - 8/7/10).

So, I have radiation treatments to my head and spine every business day. Luckily, the place that does the radiation treatments is only 15 minutes away.

The radiation is administered directly by two nurses who typically position me. They had me make three initial visits. The first of which was a consultation with the Radiology Doctor, who also teaches at Moffitt. The second of which they made a mold of my head that keeps me face-down on the table. And the third of which the power happened to go out and my spine was permanently tattooed to more accurately position my body on the table.

The treatment visits tend to last less than 15 minutes. The nurses quickly position my body for each of 4 radiation sessions (during each radiation treatment). The machine that administers the radiation looks like a fancy MRI Machine to me. When it gives radiation doses, it sounds like bacon is sizzling... I receive the same radiation dose from beginning to end, but the radiation will accumulate in my body until the last treatment. This basically means that side effects will accumulate as I approach the December 22nd final treatment.

**This point forward includes updates added April 16, 2007.**

When I received radiation to certain areas of my head, I "saw" a blue light even though my eyes were closed. I was face-down when I received radiation, even though the vast majority of people are treated face-up. I was able to rest my face on a foam triangle to support the weight of my head while I was treated.

Around Thanksgiving (11/23/06), my hair was falling out. Most of it fell out within three days. I think it was due to the radiation. I remember that I could pull out clumps of it. I expected to be bald, so it didn't bother me.

At first, I had Laura shave my head to a #4, about 1/2" long. My father said I looked like a "baby orangutan" because my hair was now sparse and somewhat wispy. I told my radiation doctor about the comment and I will never forget what he said, "I think a baby orangutan would find you strange looking..." I find that funny.

Anyhow, I had Laura shave my head completely about a week later. Radiation also took away some hair on the sides of my face, some on my neck, and the hair on my chest (about a 4" path) opposite my spine. I did not effect my eyebrows, any other facial hair, or any other hair.

About November 27th, the radiation treatments changed their focus solely to my head, and they stayed that way until the last treatment on December 22nd. They split the dosage into about 14 according to my face-down counts.

The radiation had other side effects that I may address in the future...

Updated 4/16/07
Updated 8/7/06 - some dates corrected, some text added for clarification.

Symptoms - Medulloblastoma

More will be added later, but this is what I have been diagnosed with -
Medulloblastoma. It occurs rarely in adults, but it has a good survival rate. I am in the radiation and chemo phase 1...