First MRI with new doctor

Yesterday I had my first MRI with the new neuro-oncologist, at the new facility.

The doctor told me seconds after he came into the room that the MRI looked good, nothing to worry about. Nouce! The last doctor would go through a battery of questions and the standard neuro tests before talking about the scans. This is a very stressful day, a lot hinges on the results of that scan. Nice to hear some reassurance as soon as possible.

He reported that the 'tumours' that were found back in June, which btw put me on chemo for 7 months, are now gone. This is more evidence that they were not tumours. The existing tumour still has no appreciable change. There was one area of the scan that may indicate another problem, so he wants to keep on the MRI check up every 8 weeks schedule. Continue to watch and wait.

This is fine with me, I have been feeling great. I still have a constant headache, but am learning to live with it. Still working full time, still have energy to have some fun. My son and I went hiking (yes, in the winter) at Starved Rock. There is usually a couple of eagle families there in the winter. It is quite a site to see an eagle snatch a fish out of the river. Alas, this year we only saw one eagle - and he was being very boring just sitting there in a tree.

Next MRI is in May. Spring is on its way. Life is good.

Hiking in the winter

A waterfall in the winter! You can hear the water flowing inside this giant icicle.

Change of plans - second opinion

After reflecting on the news from my last doctor appointment, I realized that what the doctor told me was not adding up. He had told me that what I thought were the new tumours were now not tumours at all. I asked why I was put on Temodar chemotherapy back in June if they were not tumours. Interestingly he said that I was not put on chemo because of the MRI enhancements he now calls white matter disease,  rather the diffuse part that he reported is now growing. I was overcome by the whole conversation and dropped the issue.

In the days following that appointment I was emailing the nurse about the details of the new chemo and I asked "Am I going crazy or was I not put on chemo back in June because of the new tumours?" Click Send. One, two three, four five seconds later my phone rings. Its my doctor, asking if I have any questions. I repeated my concern to him, and he restated his position.

I knew I was right and my whole family, that was there in the room last June, agreed with me. I email the nurse asking for a copy of the doctors notes from that appointment. Click Send. One, two three, four five seconds later my phone rings. Its the nurse asking If I wanted to talk to the doctor. I said no, I want to see his notes. She hemmed and hawed about how the notes are not 'test results', and usually only test results are released to patients...but she'll see what she can do. Days went by, nothing.

In the following days I was dealing with my new insurance company about the chemo. No notes from the doctor. I was already having huge anxiety issues with having to take this new, stronger, chemo regime. This spat with the doctor exasperated the issue. I was feeling a huge loss of trust. Could it have been a mistake that I was put on chemo last June? Did the doctor confuse me with something else? Is he confusing me with someone else now? OMG, my head  exploded.

I decided to seek another opinion. There are a couple other brain tumour centres in my area, none as close. While searching for another doctor I found that a facility 20 minutes away is now affiliated with North-western university hospital. They have a neuro oncologist that sees patients there. Score!

Now note the hospital I was going too was quite an adventure. I had to take the day off of work. Drive at least an hour downtown, drive around for 20 minutes looking for a parking spot, then walk 4 blocks to the doctors office. Once I get there, take a ticket to checkin, take a seat and listen for your number to be called. Checkin, take a seat and wait to be called for vitals. Take a seat and wait to be called to see the doctor. Walk back to the car, drive home.

This week I went to see the new doctor. Drive 20 minutes, park 100 ft. from the door. Up one flight of stairs, walk 50 feet, you are there. Immediately greeted by a person, How can I help you? WOW. With all the anxiety caused my condition, pressures at work, pressures at home, what a relief.

For those of you still with me, here is the beef on the second opinion. The new doctor was able to get  the notes from the old doctor and confirmed my side of the story. He added that he would have done the same seeing the new MRI enhancements. He added that today those enhancements are not as prominent. As far as the 'new growth', he does not think that the changes are convincing evidence to re-start chemo, Temodar or PCV. He suggested continued monitoring with MRI's every two months. Sounds good to me.

I feel that I will get much more attention from this doctor. My wife and I decided to have him follow my condition. Next MRI is in March. No chemo for now. I am more confident in the doctor. Icing on the cake is the new, convenient, and personal facility. I feel relieved.

Temodar FAIL

Had my MRI today, not a banner day. There was some good news, the oncologist does not think the new tumours they found 8 months ago are tumours at all, but 'white matter disease' that is a result of the radiation therapy I had. Yea, that’s the good news.

A little explanation is needed for the rest of the story. The 'tumour' that was discovered over 4 years ago, Diffuse Astrocytoma,  had two parts; a solid clump of cells, and a 'diffuse'  part that grew out from it that is widely spread out with ill-defined boundaries. The diffuse part is inoperable because one, it is spread out over a large area, and two, it really isn't causing any major problems. I have had like 30 MRI's over that past 4 years, and the appearance of this diffuse part has not changed...until today.  The diffuse are grew in size by about 10% in the past 6 months.

Note that this past 6 months I've been on Temodar chemotherapy. Clearly, Temodar is not working against this growth. The oncologist said that authough the biopsy indicated that this was a Astrocytoma, it is acting more like an "Oligodendroglioma". Say that ten times fast. Now the Oligodendroglioma with my genetic markers warrants a different treatment, a different kind of chemotherapy.

This recipe is quite different that Temodar,
6 week cycle:
week 1: Lomustine  (CCNU).
weeks 2,3: Procarbazine
weeks 4,5,6: off
And throw in  vincristine as needed.
The Lomustine and Procarbazine are oral (pills). The vincristine is an IV.

This repeats for 6 cycles, which is 9 months. Happy new year!

So off I go an a new adventure. I have lots to learn.

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.