I got the results of my latest MRI this morning and all is good. I have recently passed the 5 year survivor mark. The support of family, friends, and others that I have never met, have made this possible. I am into my tenth month of daily chemo, and handling it pretty good. Much better that I handled the first 14 months back in 2008, 2009. Still having some problems with my right side, but nothing terrible.
As I mentioned in earlier blogs, we were collecting money for the Angels Among Us celebration at Duke in North Carolina. This money is used for brain cancer research at Duke. Our team raised $2800 for this cause, and a total of $2,015,000 was raised to help find a cure for brain cancer. We traveled to Duke for this event. It was great to see other survivors, to see my former Doctor’s, nurses and hospital staff. Survivors are honored and the fallen are remembered. It was a wonderful event, but also so sad to meet some of the families who have lost.
It’s just a matter of time before a cure is found for brain cancer. Progress is being made every day. I thank God each day for allowing me to survive this long.
Take care, Jamie
Just wanted to check in and let you know I’m doing okay. My next MRI is due April 24th, right after I return from the Angels Among Us event at Duke. As you know, I am no longer going to Duke for treatment. My treatments are being done locally. I have been back on daily chemo for 8 months now. We wanted to return to Duke to help raise funds for brain cancer research and to celebrate 5 years survival with other survivors. Also to remember those who fought so hard to survive. So I’m asking you to please donate. The only way to cure this deadly disease is through research. I am one of the lucky ones, most don’t survive this long.
Donations can be done through the Angels Among Us website. Click on Team List, scroll down to Team Zap-it and click donate.
You can also go back to my previous blog entry and click on Donate Now.
I want to thank those who have already donated. You are truly Angels among us.
I will update the blog with my MRI results on April 24th or shortly after. Again, thank you for your continued support. Bless you all!
It’s been a while, but I have only been updating my blog when I get MRI results. Other than that, there hasn’t been much new happening with me. My new granddaughter is doing great. My daughter, due in May, is doing great. Meme is doing well. I’m doing well, so I have nothing to complain about. I received a call this morning from my oncologist, and last weeks MRI is good. No recurrence. Yup, pretty happy about that! I’m continuing on with daily Temodar. I just completed 6 months of it and starting the seventh. Next MRI, the end of April. Weather has been all over the place. Wind chills of almost -40 C a couple of weeks ago to +11 C yesterday morning. Several snow storms and then rain to melt it off.
As you know, I am not going to Duke anymore because of my recurrence in June, and subsequent surgery. However, Duke and the vaccine CDX-110 are the reason I am able to write this blog today. On the 23rd of February, it will be 5 years survival from first symptoms. Those that know the survival rate of GBM patients know that this is not very common. Therefore, Meme and I feel an obligation to help Duke raise funds for Brain Cancer Research. While at Duke, and attending 2 previous Angels Among Us events, we have seen the devastating effect of what a diagnosis of brain cancer can do to a family. From the very young to the old, it has no mercy. Last year the Angels Among Us event raised $1.8 million dollars towards research. As Dr. Freidman said, discoveries in brain cancer treatment will be made that would not have been possible without this money. The vaccine that I was taking is being used in trials in many centers across the US and some in Canada now. I heard that it is being used in Halifax, Nova Scotia now. Meme and I have entered a team again this year to help raise funds. Our team is called “Team Zap-It” after the name of the trial I was on. We are asking that you support us and donate to this very worthwhile cause. A cure has to be found for this deadly disease.
To donate, CLICK HERE to take you to the Team Zap-IT! site, and then click “Donate Now”. I urge you to go to the website and learn what Angels Among Us is all about.
Thank you so much for your continued support!
Merry Christmas everyone!
Just received some good news from my oncologist. My MRI is stable once again, so no change as far as any recurrence. It’s been a good week for me and my family. My eldest son got married, my younger son has a new baby girl, my daughter is having a girl in May and I get a good MRI. Doesn’t get any better than that. Now it’s time to relax and enjoy Christmas.
I haven’t been feeling too bad lately. I’m starting my fifth cycle of chemo, which is the 17th week. Actually I may have a little more energy than I had. I’m able to do more things around the house. Now if I could muster up enough energy to put the Christmas lights up outside.
Renovations are finished on the house, at least for this year. I have few more things I would like to get done. Well, it’s getting late. Must hit the sack. Merry Christmas to all and to all a good night!
I have some good news to report. I was in Saint John today for an appointment with my oncologist. She read my latest MRI and it is unchanged, so no growth in the last two months. Therefore, I will continue my chemotherapy. I’ve been on it now for almost 8 weeks and it is sapping my energy. Can’t do much these days. I guess that’s all part of it but gets frustrating sometimes just laying around.
Renovations are almost done, just a few things I’m trying to finish up before the snow comes. I will have a new grandchild coming in a couple of months, so looking forward to that. Meme is doing a lot of knitting!
Thanks again for the comments and support,
Take care all,
I started my chemo again 8 days ago. Not something I’m too fond of. It is a lower dose than before, but I have to take it every day. I’ll try that for a couple of months and see what happens. The first night I took it was not good, and I thought oh boy, this is not going to be good. The second night was better, but the last two have been a little worse. I just have to take it one day at a time.
I have healed up well, but still lacking energy. We’re having some work done to our house. It was badly in need of some renovations. We had to let things go for the past few years while traveling to Duke. It actually gives me something to do now, watching that is. The guys are doing a good job. The big job will be getting the house straightened up after they leave. It will come in time.
That’s about it for now. Thanks again for your support.
Take care, Jamie
Hello to everyone,
Since the last update I have seen my neurosurgeon, radiation oncologist and chemo oncologist. I had an MRI 2 days post surgery and it looked like they got everything. I had another MRI on this past Monday and it showed no re-growth yet. So that is good. I had a consultation with the oncologists and have decided to try more chemo, in the form of Temodar. I will try that first for a couple of months and see how I make out. I got very sick from this chemo last time, so we are going to try a lower dose for a longer period of time. If the chemo doesn’t work we may try another drug called CNU, or more radiation called MIRT. I should be starting the chemo the first of next week.
I am heeling up well. Still quite tired. I am very grateful for what Duke and the vaccine did for me. They gave me 4 years which I probably would not have had with standard treatment. They have a wonderful staff that were very good to me. However, it’s a new phase now and we must move on with the fight. Thanks to all who support us. It does not go unnoticed.
I have been resting at home since my surgery just over two weeks ago. I am doing fairly well and healing up. Most of the stitches have dissolved, so it’s a little more comfortable now to put my head on the pillow. I received the final pathology report and it is recurrent GBM (grade 4 brain cancer). This information was sent to Duke and I was informed that there are no trials currently open for me. I am now off the one I was on for 4 years. They gave me some suggestions, but I have not discussed any options with oncology here at home as of yet. With this disease there are not many options anyway. Please pray for my wife and family as we head into this next phase.
I came home from the hospital last Monday after my surgery and am recovering well at home. We have not received the final pathology report yet, so don’t know what the next move will be yet. All we can do is pray and deal with it as it comes. Thanks to all who read my blog and have supported me through this battle.
We were at the hospital this morning to see Dad (Jamie), he is doing great. Sitting up, talking, laughing, so no worries folks the surgery went really well!
They sent up some wonderful hospital grade Mac and Cheese with peas for him to eat, which he really enjoyed!
It looks like he will likely be home in a couple of days. Then he gets to relax and recuperate a bit until all the tests come back and we see what the next options will be for treatment.
Have a great weekend folks!