Happy 5th birthday, Mr. Tumor

We just past 5 years from Day 1!

Doing Great, headaches at bay

I had another MRI last week, all stable. I asked the doctor to extend the visits to 6 months, no deal he wants to keep the two month cycle.

Even better news, the latest headache prescription is holding up. I also think I found another source of my headaches....sugar. I went on a business trip a few weeks back and my headaches pretty much went away. I realized one big difference was that I was not having sweets everyday. I went cold-turkey and haven't felt better in years. No cookies, ice creams, chocolates. First I gave up alcohol,  now sweets, whats next? Say coffee and I'll punch you in the face. I did ask the doctor about sugars and brain tumors. He said there are no definitive studies linking tumor growth and sugar, but its probably a good health decision anyhow.

My son and I went hiking today at Apple Valley State Park Near Galena, IL. It like a 'fun-size' mountain hike he says.

Here I am right before I jumped!

Looks more and more like a false alarm

I have had 6 months and 3 MRI's with my new Doctor already. Very glad I made the switch. Today's MRI showed that same pattern, these small spots come and go. Good news is that they don't GROW. In addition, my old tumor is stable, no growth there either. Doctor continues to advise that these spots are 'vascular changes' and do not pose a threat. All in all good news.

Headache relief. My Doctor prescribed Amitriptyline 25mg/day two months ago for my chronic headache. It's working pretty good. I have a lot more energy and feel much better in general. Now that headache pain is minimal. With this peeled away, I can now feel the tingling in my face on a regular basis. Tingling is much better than splitting headaches!

My next MRI is in September. Enjoy the summer!

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.