Again, if you see weird typos and such, let me know so I can fix them.
So in my last update I talked about the aftermath of the MRI I had at the end of April. During May I went through a brief round of radiation. I had 10 total treatments that only lasted maybe 10 to 15 minutes each After that I started the next chemo treatment, this medicine being called irinotecan. This was administered via IV (and it took about THREE hours each time) in a regimen spread out over a few weeks. It was done on Wednesdays. First they did it on back-to-back Wednesdays, then they'd skip a week, then they would repeat the process. The day after each second Wed. treatment I got an injection of a medication designed to keep my white blood cell count high.
Luckily, unlike the previous chemo, this one did not cause my legs or feet to swell. In fact, the previous swelling went away thanks to getting off the Avastin as well as changing my diet to reduce my salt intake. However, in the last 2 or 3 weeks or so my diet has very much gone to pot. I've been eating more junk food and red meat so my weight has come up a little bit; also, I think my feet are swelling a little bit so I really have to get control of what I'm eating again. I'm due to see the nephrologist in about 2 weeks. There shouldn't be any issue with my kidneys, though.
Which brings us to my latest MRI on Wednesday. I saw my chemo oncologist Friday. He had the results and they were not good. The area which showed the cancer cells in the last MRI still shows cancer cells. And he said there are more cells growing in kind of a ring pattern around that area.
He spoke to my radiation oncologist, who said they really couldn't do any more radiation because of the two previous rounds of radiation; there's only so much radiation that they can do to the brain, and it doesn't seem to be helping anyway even if they could do more. They also said they feel surgery isn't really an option since I've already had two in that area, though I have the option to a talk to a neurosurgeon about it.
My chemo oncologist said he reached out to Penn Medicine to the doctor I saw previously to see if I qualified for the clinical trial.(By the way, I did not qualify for that particular trial based on my genetic testing.) So he sent her an email to see if there were any other trials going on; he has not heard back from her yet.
He also suggested I should contact Duke University because they have a lot of activity as far as trials for treatments of glioblastoma. CBS News did a report on one a while back that showed great promise. I shared it on Facebook at the time. I don't know if I can get into the trial or any of the logistics as far as how many times/how often would I have to go down there and for how long.
In the meantime my chemo oncologist said there are two more chemo drugs I can try, but they don't have much of a track record for treating glioblastoma. One that seems to be slightly more promising would be in pill form given every six weeks.The other would be given intravenously every 3 weeks. My thought is right now to start on the pill form of the chemo and then try and see what clinical trials are available either here or at Duke in the meantime, but I have to let the doctor know of my decision when I see him on the 26th of this month.
I had a suspicion that it was not going to be good news just because some of my issues have seemed to worsen recently. My left leg has been still kind of weaker, dragging my foot when I walk. The forefinger and thumb on my left hand are still giving me problems: gripping things, typing and holding my phone, getting out of chairs or using a toilet in the restroom --all of this has really become frustrating. To hopefully alleviate of this, my doctor increased the dose on the steriod Decadron (it had been stopped for a while and then I went back on it but at a lower dosage). So incompetent customer service people, Jehovah's Witnesses knocking at the door, ignorant drivers who don't like stopping for pedestrians with the right of way -- get ready for more ROID RAGE!