Nothing really new to report on the past few days. Radiation and chemo are going ok, no side effects yet. I did strain my hip running on the treadmill at Duke, thought I could run through it for a couple of days, but the 7 miler on Saturday seems to have made it worse. I think it is a little better today but probably not running again tomorrow morning.
We hope to have an uneventful week this week. No trips, no extra doctor visits just work, treatments and home. We are going to cap off the week with a trip to a Cincinnati Reds game. It is back to being wild and crazy for Marti and Bill.
Thanks for caring.
Monday, June 27, 2011
Friday, June 24, 2011
Relay For Life
Marti and I just got back from participating in Relay For Life for the first time. It is an honor and a privilege to be part of such a courageous group of people.
I had three radiation treatments this week and took chemo three times as well. I get a break from the radiation over the weekend but will continue the chemo every day. So far I have had no side effects from any of the treatments. I have been able to run 6 miles the last 2 mornings, including yesterday when I assumed I could beat the rain I saw coming in on radar. Needless to say I got soaked.
On the medical news front, I found out yesterday that two additional biopsies had been preformed on my tumor, looking for specific "markers". Both test yielded results that were positive for me. Very good news.
Sunday I am playing racquetball with my oncologist. If he thinks he is going to get any sympathy from me because his knee hurts, he is sadly mistaken.
Have a great weekend and thank you for caring.
I had three radiation treatments this week and took chemo three times as well. I get a break from the radiation over the weekend but will continue the chemo every day. So far I have had no side effects from any of the treatments. I have been able to run 6 miles the last 2 mornings, including yesterday when I assumed I could beat the rain I saw coming in on radar. Needless to say I got soaked.
On the medical news front, I found out yesterday that two additional biopsies had been preformed on my tumor, looking for specific "markers". Both test yielded results that were positive for me. Very good news.
Sunday I am playing racquetball with my oncologist. If he thinks he is going to get any sympathy from me because his knee hurts, he is sadly mistaken.
Have a great weekend and thank you for caring.
Wednesday, June 22, 2011
The Week We Have Been Waiting For.....
It is Wednesday afternoon and Marti and I have already had a good/busy week.
On Monday we drove to Durham NC to be ready for an early appointment on Tuesday. We made the drive in 2.5 hours less than it took us to fly there a couple of weeks ago. I am not sure we will always make such good time, we had easy traffic and good weather. Also judging by the number of orange barrels on the side of the road it looks like NC is getting ready to declare war on I-40.
Tuesday I had the leukapheresis (collection of my white blood cells). This was a 4 hour process which was timed down to the minute. 350 cc's of blood were collected and before they could take the IVs out of me a person was there with a cooler to collect the white blood cells and to take them to the lab to begin work on them to create my own unique vaccine.
For you bio majors I will try and explain how this is going to happen. For you Political Science majors, I will try in do it terms we can understand.
The vaccine that's created will be loaded with RNA which stimulates Dendritic Cells which will be used to fight the protien found in brain cancers. (clearly I am trying to summarize what is on a sheet of paper and really have no idea what I am talking about) In addition I will be receiving a drug called granulocyte macrophage - colony. This drug will help the vaccine boost my immune system. If you really want more information you can probably read more at the web site for the Robert Tisch Brain Tumor Center at Duke University Medical Center.
The other interesting thing we found out is the trial is closed, they are accepting no more applicants, but somehow I got in. I believe we
must have had a strong advocate here in Danville advocating for us.
Marti and I are getting help in many different ways from many different people, and we need it. There are so many things to follow through on that we have a notebook divided by pharmacy, insurance, Commonwealth Cancer, Radiation, Duke, and UK. When we meet with any of these folks we both take notes and then compare when we get home. Still issues come up that will make you crazy.
For example my chemo drug dosage is 160mg. The drug company does not have a pill in this dosage so I will have to take a 140mg and a 20mg. While Marti was driving yesterday I received a call saying the insurance would not authorize the 140mg pill, so I would have to take 8 20mg pills at a time. The oncologist office was all over it, but the bank's HR rep got involved, an outside case manager got involved, and I spent about an hour on it. In the scheme of things it is very petty, but is an hour that all of us could have done something more important. In the end we got the 140mg pill.
By the way I had my first radiation treatment today and took the first chemo pills. One down, 32 to go. So far so good.
Thank you for caring.
On Monday we drove to Durham NC to be ready for an early appointment on Tuesday. We made the drive in 2.5 hours less than it took us to fly there a couple of weeks ago. I am not sure we will always make such good time, we had easy traffic and good weather. Also judging by the number of orange barrels on the side of the road it looks like NC is getting ready to declare war on I-40.
Tuesday I had the leukapheresis (collection of my white blood cells). This was a 4 hour process which was timed down to the minute. 350 cc's of blood were collected and before they could take the IVs out of me a person was there with a cooler to collect the white blood cells and to take them to the lab to begin work on them to create my own unique vaccine.
For you bio majors I will try and explain how this is going to happen. For you Political Science majors, I will try in do it terms we can understand.
The vaccine that's created will be loaded with RNA which stimulates Dendritic Cells which will be used to fight the protien found in brain cancers. (clearly I am trying to summarize what is on a sheet of paper and really have no idea what I am talking about) In addition I will be receiving a drug called granulocyte macrophage - colony. This drug will help the vaccine boost my immune system. If you really want more information you can probably read more at the web site for the Robert Tisch Brain Tumor Center at Duke University Medical Center.
The other interesting thing we found out is the trial is closed, they are accepting no more applicants, but somehow I got in. I believe we
must have had a strong advocate here in Danville advocating for us.
Marti and I are getting help in many different ways from many different people, and we need it. There are so many things to follow through on that we have a notebook divided by pharmacy, insurance, Commonwealth Cancer, Radiation, Duke, and UK. When we meet with any of these folks we both take notes and then compare when we get home. Still issues come up that will make you crazy.
For example my chemo drug dosage is 160mg. The drug company does not have a pill in this dosage so I will have to take a 140mg and a 20mg. While Marti was driving yesterday I received a call saying the insurance would not authorize the 140mg pill, so I would have to take 8 20mg pills at a time. The oncologist office was all over it, but the bank's HR rep got involved, an outside case manager got involved, and I spent about an hour on it. In the scheme of things it is very petty, but is an hour that all of us could have done something more important. In the end we got the 140mg pill.
By the way I had my first radiation treatment today and took the first chemo pills. One down, 32 to go. So far so good.
Thank you for caring.
Sunday, June 19, 2011
Key Dates and Other Stuff
Now that the treatment plan is in place we have goals to hit.
6/22 - Treatments start
8/8 - Last treatment
8/12 - Annual baseball trip
11/12 - Mini marathon
The annual baseball trip is something the boys (John, Sam, and Todd) and I do every year. Each year we travel to a different stadium for a couple of games and we always cheer for the home team. John and I started this about 10 years ago.
As a long time Chicago Cub fan there are a couple of principals that can never be compromised. The first is do not expect to play in, much less win, the World Series. It is just not going to happen.
Secondly, and more importantly, you have to hate the St. Louis Cardinals ( for proof of this read Are We Winning).
We always decide around Christmas where we are going the following summer and we knew that one year, if we were going to get to all the stadiums, we would have to go to St. louis. Well this is the year we are to cheer for the Cardinals. I will let you decide if the trama of going to St. Louis is what brought on the brain issue or if this is some sort of strange coincidence.
On a brighter note, all the kids, and of course grandson Will, came in yesterday and will be here today for Fathers Day. Marti's folks are coming over also so we are looking forward to a big cookout.
Happy Father's Day to any dads reading this entry.
Thank you for caring.
6/22 - Treatments start
8/8 - Last treatment
8/12 - Annual baseball trip
11/12 - Mini marathon
The annual baseball trip is something the boys (John, Sam, and Todd) and I do every year. Each year we travel to a different stadium for a couple of games and we always cheer for the home team. John and I started this about 10 years ago.
As a long time Chicago Cub fan there are a couple of principals that can never be compromised. The first is do not expect to play in, much less win, the World Series. It is just not going to happen.
Secondly, and more importantly, you have to hate the St. Louis Cardinals ( for proof of this read Are We Winning).
We always decide around Christmas where we are going the following summer and we knew that one year, if we were going to get to all the stadiums, we would have to go to St. louis. Well this is the year we are to cheer for the Cardinals. I will let you decide if the trama of going to St. Louis is what brought on the brain issue or if this is some sort of strange coincidence.
On a brighter note, all the kids, and of course grandson Will, came in yesterday and will be here today for Fathers Day. Marti's folks are coming over also so we are looking forward to a big cookout.
Happy Father's Day to any dads reading this entry.
Thank you for caring.
Friday, June 17, 2011
The Plan
We received confirmation from the Radiologist today, which was the final piece of the puzzle. The plan is for the LeukaphBeresis to be completed Tuesday and radiation and chemo to begin Wednesday. My radiation treatments will be at 4:00 pm Monday through Friday. I should be done with this phase August 8.
Marti and I continue to confuse LeukaphBeresis with Luca Brasi, who sleeps with the fishes. (Godfather)
Thank you for caring.
Marti and I continue to confuse LeukaphBeresis with Luca Brasi, who sleeps with the fishes. (Godfather)
Thank you for caring.
Thursday, June 16, 2011
Two Quick Updates
1. I did miscount the treatment days in last nights post. If I start radiattion this Wednesday the 22nd (not confirmed yet) my last treatment will be August 8th, not the 1st. I blame this miscalculation squarely on the tumor/recovery/the full moon/ anything other than me just being stupid.
2. In an earlier post I mentioned that I had an Uncle and an Aunt on different sides of the family afflicted with the same diease that I have. When we discussed this with the doctors at Duke, both found it interesting but both said they were 99% sure it was NOT hereditary. No matter what else happens, that is the best news we are going to receive.
Thank you for caring.
2. In an earlier post I mentioned that I had an Uncle and an Aunt on different sides of the family afflicted with the same diease that I have. When we discussed this with the doctors at Duke, both found it interesting but both said they were 99% sure it was NOT hereditary. No matter what else happens, that is the best news we are going to receive.
Thank you for caring.
Wednesday, June 15, 2011
The Plan Is Taking Shape - REPOST from Wednesday
This is a repost from Wednesday as somehow how it got deleted. No doubt Operator Error.
The basic treatment plan is in place and we honestly believe we have everything moving in the right direction.
The plan consist of 33 radiation treatments which we hope will start Wednesday of next week. Treatments will be 5 days a week with the weekends and the 4th of July off. If I have counted correctly the last treatment will be August 1st. During this time I will be taking a chemotherapy pill, Temador. I take this pill 7 days/week through-out the radiation period.
I have also been accepted into a clinical trail at Duke. This is a pretty cool test that they are seeing very good results. The basics are we will go back down next week and I will undergo LeukaphBeresis. This is like giving blood to yourself. They draw blood from one arm, run it through some contraption that extracts the white blood cells and then returns the blood to my body in the other arm. The white blood cells are immediately taken to the lab where they will harvest them and develop a unique vaccine for me. The blood cells need to be harvested prior to the start of radiation. The vaccines will start 2 to 3 weeks after radiation, 1 every other week for 6 weeks and then once a month for 7 months. There are no side effects to the vaccine. My only concern is that after they pull out the white blood cells the only thing left to go back into my other arm will be Miller Lite.
The doctors at Duke said they were only accepting patients in the early stages of GBM and only those with the best chance of success. He also said this was the most promising strategy. Tom Baeker agreed and said he believed immunotherapy had the best chance of making quantum leaps forward in the not too distant future.
This is really exciting stuff and as I have said before I can't wait to get started.
Thank you for caring.
The basic treatment plan is in place and we honestly believe we have everything moving in the right direction.
The plan consist of 33 radiation treatments which we hope will start Wednesday of next week. Treatments will be 5 days a week with the weekends and the 4th of July off. If I have counted correctly the last treatment will be August 1st. During this time I will be taking a chemotherapy pill, Temador. I take this pill 7 days/week through-out the radiation period.
I have also been accepted into a clinical trail at Duke. This is a pretty cool test that they are seeing very good results. The basics are we will go back down next week and I will undergo LeukaphBeresis. This is like giving blood to yourself. They draw blood from one arm, run it through some contraption that extracts the white blood cells and then returns the blood to my body in the other arm. The white blood cells are immediately taken to the lab where they will harvest them and develop a unique vaccine for me. The blood cells need to be harvested prior to the start of radiation. The vaccines will start 2 to 3 weeks after radiation, 1 every other week for 6 weeks and then once a month for 7 months. There are no side effects to the vaccine. My only concern is that after they pull out the white blood cells the only thing left to go back into my other arm will be Miller Lite.
The doctors at Duke said they were only accepting patients in the early stages of GBM and only those with the best chance of success. He also said this was the most promising strategy. Tom Baeker agreed and said he believed immunotherapy had the best chance of making quantum leaps forward in the not too distant future.
This is really exciting stuff and as I have said before I can't wait to get started.
Thank you for caring.
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