Chemo Round 2 Cycle 7..Last One?

Next week will be my seventh chemo cycle after recurrence. This will make 19 cycles since diagnosis 4 years ago. I'm getting pretty good at this.

I asked again about continuing chemo after this cycle at my oncologist appointment this week. My appointment next month includes a MRI. I'm wondering what they will do if the MRI shows a little growth. The doctor said something unexpected. If there is any growth that means the chemo is not working. If the chemo is not working it does not make sense to take more. An alternative therapy would be needed. Radio surgery? We'll decide that when and if this happens.

Ominous what may happen next, but nice to know that this probably is the last round.

Have a Merry Christmas and Happy New Year.  

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.

MRI stable two months into recurrence

I now have two chemo cycles under my belt and went to get my 2 month MRI today. The doctor recently mandated that they get 3 hours between the MRI and oncologist appointment, the wait is very anxious. I told the oncologist that I was feeling great. I am able to work and play with little to no discomfort outside of chemo week. His reaction was disbelief. I don't really know if he was thinking that I was being sarcastic (who, me? sarcastic? never!), or if he really can't believe that I am doing this well.  I told him that if it wasn't for him I would not think that I was sick.  He got a laugh out of that and said that he was happy to see me up and walking around.

The oncologist then said that my scans (MRI) look stable, and that we will continue with the chemo plan of 6 cycles, with a MRI every 2 months. He then went on to mention that if I read the radiologist report (which I do), that they mention a slight progression...but emphassised that he does not see any of concern. Well that was not a resounding vote of confidence, but I'll take it.

Chemo round 3 of 6 starts next Sunday.

Chemotherapy Round 2 Cycle 1 Complete!

After a struggle with the insurance company, I was able to get my chemotherapy for this month last Friday and started it Sunday night. The cycle went pretty well, I watched my diet and kept my activity level up. This first cycle was at 75% of my normal dose of 420 mg/day. The radiation oncologist at my hospital was on vacation last week, the earliest I could get in is later this week.  My appointment with the neuro-oncologist is in a couple of weeks, and the next MRI is in in late August. That's all the dry facts I have for now.

I think that I am in a state of passive denial about all this. I am holding out hope that the next MRI will show the new tumors are gone. I just don't understand how I can feel great and have this growing inside of me. People in denial don't take any corrective action, I am in denial but doing what the doctors suggest.

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.

Living Large - Hiking in the mountains

Hello all,
Things are going great for me. I have challenged myself once more to get back to normal life by taking a camping trip in the mountains. I was pretty worried as this is rather strenuous, sleeping in a tent in black bear country plus the physical demands of hiking in the mountains. The trip went well. My son helped out a lot with setting up camp and cooking. No headache attacks. We hiked about 10 miles on a beautiful sunny day.

Take care,
Ed

My Son and I in the Smoky Mountains

December '13 MRI Stable

Quick update...
My 6 month MRI in December was stable. Meeting with the oncologist was all of 5 minutes.
Depakote is still doing a good job at keeping the headaches at bay.
I have joined a father-son basketball league. Lots of exercise, pushing my limits.
Very rarely thinking about my tumor.

Life is good.