Chemotherapy for Dummies

This post is for other patients who read this blog for advise. I went through my emails to a friend entering Chemotherapy when I was first exiting it, and thought I would share these tidbits.

1) Statistics are misleading 92% of the time. You are not a statistic.

2) Schedule
Chemotherapy effects your whole life. Temodar was prescribed to me as 1 week on/3weeks off.

My schedule basically goes like this:

Week 1:

Start first dose on Sunday Night

Go to work Mon/Tue/Wed.

Take Thurs/Fri off as sick days. I can usually get a couple hours in each of these days from home. Mainly I need to be close to a bathroom and a bed.

Sat/Sun I still feel like crap-ola, but can do things around the house.

Monday go back to work.

Week 2,3:

Work/Eat/Sleep/Repeat

Week 4, Have blood work done, see oncologist for the next cycle.

I mark on a calendar chemo week every 4 weeks, and a doctors appointment in the week before each cycle. I set up a recurring 'meeting' on my calendar at work to help keep track of this. This does take a lot of your life, especially having to work.
3) Constipation

I had problems with constipation while on Temodar, here is what I did to minimize it:

• I start eating very healthy (vegetarian) small meals 2 days before the cycle to make sure there is a minimum of food in the system.
• I start taking Miralax (Polyethelene Glycol 3350) the day before Chemo starts, and continue it every day till the end of the cycle. I have tried prescription stool softeners (ducolax) and more powerful OTC drugs, but prevention is a better cure. Although this stuff looks nasty, you can put it in water, coffee or tea and you cannot taste it.
  
• During the cycle, you can often find me drinking hot tea while swaying on my wife's exercise ball. Please do not try to visualize this. 

 4) Headaches
If you follow this blog you are aware that since treatment I have had major problems with headaches. The headaches were worse during chemo therapy. Talk to a regular doctor, or even a local neurologist if you experience the same. I found decadron, tramadol, and depakote to help. 

Its Back :(

I had my bi-annual MRI check up yesterday and got some bad news. A new tumour has started to form near the site of the old one. The good news is that it is pretty small (think pencil eraser) - so it was caught early. I was very surprised by this news, I have been feeling great, and still do. I did not even bring my notepad to the appointment as I did every other time.

My neuro-oncologist said that I have two options, back on Temodar chemotherapy for 6 months, or do a couple sessions of targeted radiation. His recommendation was the chemo.

I need to make an appointment with the radiation oncologist to talk about the radiation, but I am not too thrilled about that prospect for two reasons. I attribute my ongoing headache problem to the radiation I got for this three years ago. Secondly, with my tumour being 'diffuse' they cannot tell the extents of the new tumour. I have been told many times the the MRI only tells part of the story for diffuse tumours, they spread out undetected microscopically. I am skeptical that they can target a 'small' tumour when they don't know exactly where it is. 

Of course, now that I know its there I can feel it in my head.

I am going to keep my chin up and do what I gotta do to get through this.