Four Months into recurrence, new tumours still stable.

I had a MRI and check up today, Oncologist says the new, and old, tumours are stable - no appreciable growth. I'll be starting the 5th cycle of chemotherapy this Sunday. I get a lot of questions about what chemotherapy for brain tumours is; well, its a prescription. A nasty prescription. The pic below is the dose for one day, 6 pills. I take the 6 pills every day for 5 days (1 cycle). There is one cycle every 4 weeks. The pills are difficult to swallow, your body does not want them. I drink 3 of those large glasses of water with one dose.

One dose of Chemotherapy (Temodar)

Taking the chemotherapy is sooo nasty, the last cycle I had a panic attack before taking a dose. First panic attack in my life. I did NOT want to take those pills. I told the nurse about it, and she suggested I go to a counsellor that specializes in cancer. Off I went to a counsellor, for the first time in my life. It come out in talking with the counsellor that I do not see the benefit of the chemotherapy. I see/feel plenty of the cost (me feeling sick pretty much all the time), and I don't really understand what the pay-off is. I've seen data on Temodar that suggests the improvement on survival is about a couple months. I'm thinking WTF - Why should I put myself through this month after month for over a year...if all I am expecting to gain is an extra couple months of my time here? Does not seem like a fair deal to me...thus the anxiety issue.  The counsellor showed me the forest through the trees, She said tell the doctor this and ask if I am missing something.

So today I did just that. The doctor seemed a bit irritated. He said a lot of what I already knew; the studies are over a wide range of patients with a wide range of brain tumours. Statistics are misleading 82% of the time. He continued that the genetic markers of MY tumour are especially favourable to Temodar therapy, and it is clear (to him anyway) that the therapy is stunting the growth of the tumour. "In your case, the therapy is buying you years, if not decades of time."  I should not fret over what gonna happen 10 years down the road, I need to do focus on what needs to happen today - one can't redo today tomorrow.

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.