Today I had my first round of testing to determine if I will be eligible for the Macrobead Clinical Trial.
First I had my blood drawn. I think they took about 7 pints of blood. And I never exaggerate.
They also took nasal and saliva swabs. Did a EKG. Tested skin for any allergic reactions to the mouse cells, and noted all of the vitals (weight, height, temp, blood pressure, etc.)
Next steps will be a chest x-ray and CT/PET scan on Wednesday.
Hopefully we will know by the end of the week what the results are, and if I will be a candidate for the trial.
Monday, May 24, 2010
Friday, May 21, 2010
Clinical Trial Update
Today I met with the doctor who is leading the clinical trial I have mentioned before on this blog. He believes I am a candidate for the trial and so we are moving on to the next steps.
Next week I will have my blood drawn for lab work, and for a chest x-ray and a CT/PET scan. Next I will meet with the surgeon who will be doing the macrobeads insertion. If everything looks good, I will probably have the surgery on June 4th.
I don't know if I mentioned this before, but for the past couple of months, I have been having a pain in my left ribs. It seems the pain is hitting some nerves, so the pain radiates through my lower back, left shoulder and arm. It has been pretty consistent and steady for awhile now. Sometimes tolerable, sometime excruciating. My oncologist prescribed Oxyocodone for me, which helps a little, but wears off after a few hours. Plus I'm not crazy about taking all of those drugs, but it's the only thing that gives me some relief. The pain also keeps me up at night, which means I need to take Ambien to help me sleep. All of that did effect me on our trip to Australia, but we still had a great trip, and I'll talk about that trip in another post.
As the clinical trial progresses, I'll keep you all updated as to how things go.
Kevin
Next week I will have my blood drawn for lab work, and for a chest x-ray and a CT/PET scan. Next I will meet with the surgeon who will be doing the macrobeads insertion. If everything looks good, I will probably have the surgery on June 4th.
I don't know if I mentioned this before, but for the past couple of months, I have been having a pain in my left ribs. It seems the pain is hitting some nerves, so the pain radiates through my lower back, left shoulder and arm. It has been pretty consistent and steady for awhile now. Sometimes tolerable, sometime excruciating. My oncologist prescribed Oxyocodone for me, which helps a little, but wears off after a few hours. Plus I'm not crazy about taking all of those drugs, but it's the only thing that gives me some relief. The pain also keeps me up at night, which means I need to take Ambien to help me sleep. All of that did effect me on our trip to Australia, but we still had a great trip, and I'll talk about that trip in another post.
As the clinical trial progresses, I'll keep you all updated as to how things go.
Kevin
Tuesday, May 18, 2010
Freedom of Spirit
As most, or some of you should know by now, Roni and I spent two weeks in Australia. We started in Brisbane, and after driving about 3000 Kms (you can do the math), we ended up in Cairns.
One of our stops was in Charters Towers Australia, where I lived from 1973 to 1976. In Charters Towers, we met an Aborigine artist, who remembers my family from when we used to live there. She was only a little girl at the time, so I don't remember her, but we have become Facebook friends and have kept in touch that way for the past year or so.
While visiting Tania, she presented Roni and me with a painting she did. One of the things with Aborigine paintings, is that they always come with a "story", and Tania always seems to find the story of her paintings after she paints them. She said she did ours in about 3 days, and after finishing it, she "saw" the story in it.
Below is the painting, and the story:
Freedom of Spirit – Berrenge Nahn (pronounced: Berren-gay Narn)
One of our stops was in Charters Towers Australia, where I lived from 1973 to 1976. In Charters Towers, we met an Aborigine artist, who remembers my family from when we used to live there. She was only a little girl at the time, so I don't remember her, but we have become Facebook friends and have kept in touch that way for the past year or so.
While visiting Tania, she presented Roni and me with a painting she did. One of the things with Aborigine paintings, is that they always come with a "story", and Tania always seems to find the story of her paintings after she paints them. She said she did ours in about 3 days, and after finishing it, she "saw" the story in it.
Below is the painting, and the story:
Freedom of Spirit – Berrenge Nahn (pronounced: Berren-gay Narn)
For Kevin and Roni Kersey
The central and inner circles represent the journey.
The two dots in each corner, represent the 2 of you as you ride along together.
The smaller circles at the bottom and at the top represent the wheels and the journey to and from your destination.
The smaller dots dark brown and yellow ochre represent all the beauty that you have witnessed as you look in every direction, as far as the eye can see.
The blue background represents fresh air and wind “May all your travels happen beneath clear blue skies.”
The yellow dots represent the sun on your face.
The white dots signify safety and security.
The dark brown around the outer edges represent the road under your wheels.
The three inner red circles represent the sun set at the end of the day.
The black and orange dots represent your beloved Harley Davidson.
Artist’s Name: Tania Ault
Lore Name: Dillinga (Silver Brogla)
Clan Name: Mgulakai Pronounced: Mul-a-ky (Sun Light People)
Tribe: Kudjala/Gudjal
Home Town: Charters Towers, North Queensland, Australia
Wednesday, April 14, 2010
Macrobeads - Part II
If I am accepted into the clinical trial, the items you see on the left are the macrobeads that will be inserted laproscopically into my abdomen. The doc said they will use a few hundred of them.We spent about 2 hours this afternoon with the doctor and person working on this project and it sounds fascinating. Fortunately there is no big rush, so we have time to process, pray and enjoy our vacation.
We'll keep you updated on how things proceed.
Kevin
Tuesday, April 06, 2010
Macrobeads
Yesterday, Roni and I went to see another oncologist to get a second opinion about doing more chemo. She pretty much told us what we expected to hear, that it was up to me when to start. There were benefits to starting before symptoms appear, but that there was no need to start right away. She also concurred that the chemo regimen that Dr. Loggie and Dr. Ratner suggested was the right way to go.
Then, she gave us another suggestion that sounded worthwhile to explore. There is a clinical trial being done by The Rogosin Institute where macrobeads containing mouse kidney cancer cells are implanted into the abdominal cavity as a biological treatment. They are implanted during an laproscopic surgical procedure, so the recovery shouldn't be that bad. The good thing is that since this is NOT chemo, there are no side major side effects. The only side effect that she mentioned was an elevated temperature because your body is working harder to fight off the foreign objects.
You can read more about the trial here:
http://clinicaltrials.gov/ct2/show/NCT00283075
I have to make an appointment to meet with the doctor doing the study to find out if I'm a candidate, but if I am, it's certainly something worth considering. When I know more, I'll let you know.
Until then, Roni and I continue to get excited about and plan for our two weeks vacation in Australia. And no, I am not going to eat any Vegemite.
Then, she gave us another suggestion that sounded worthwhile to explore. There is a clinical trial being done by The Rogosin Institute where macrobeads containing mouse kidney cancer cells are implanted into the abdominal cavity as a biological treatment. They are implanted during an laproscopic surgical procedure, so the recovery shouldn't be that bad. The good thing is that since this is NOT chemo, there are no side major side effects. The only side effect that she mentioned was an elevated temperature because your body is working harder to fight off the foreign objects.
You can read more about the trial here:
http://clinicaltrials.gov/ct2/show/NCT00283075
I have to make an appointment to meet with the doctor doing the study to find out if I'm a candidate, but if I am, it's certainly something worth considering. When I know more, I'll let you know.
Until then, Roni and I continue to get excited about and plan for our two weeks vacation in Australia. And no, I am not going to eat any Vegemite.
Thursday, April 01, 2010
Why I Ride
When we met with my oncologist last week, and discussed starting chemo again, he made an "aside" comment and said, "Stay off the bike." I didn't say it out loud, but the thought that went though my mind was, "Yeah... that's not going to happen."
I think some doctors think it is their job to keep you alive as long as possible, regardless of your desire to live life. While I respect what he meant, that is one piece of advice I am not going to take. Let me tell you why...
I ride because it makes me feel free.
I ride because instead of being surrounded by metal and glass, I am surrounded by nature.
I ride because I can smell the fresh air. Feel the wind in my face. Feel the warmth of the sunshine.
I ride because I have an unobstructed view of birds flying. Of deer and geese on the side of the road. Of trees, grass and wild flowers. Of a beautiful sunset.
I ride because of the camaraderie of other bikers. Of being able to strike up a conversation with a total stranger who understands without having to have it explained.
I ride for the simple joy of giving the "biker wave" to fellow bikers going in the opposite direction and being given the "wave" back.
I ride because I love seeing the smile on little kids faces as they look at me and wave frantically to get my attention.
I ride for the adventure. For the joy it gives me.
I ride to see new places. Small towns. Creeks and rivers. Forests and trees. Open plains.
I ride because in a strange way, it makes me feel nearer to G-d.
I ride to feel alive.
For some people, an explanation of why I ride is impossible to comprehend. For those who ride, an explanation isn't necessary.
I think some doctors think it is their job to keep you alive as long as possible, regardless of your desire to live life. While I respect what he meant, that is one piece of advice I am not going to take. Let me tell you why...
I ride because it makes me feel free.
I ride because instead of being surrounded by metal and glass, I am surrounded by nature.
I ride because I can smell the fresh air. Feel the wind in my face. Feel the warmth of the sunshine.
I ride because I have an unobstructed view of birds flying. Of deer and geese on the side of the road. Of trees, grass and wild flowers. Of a beautiful sunset.
I ride because of the camaraderie of other bikers. Of being able to strike up a conversation with a total stranger who understands without having to have it explained.
I ride for the simple joy of giving the "biker wave" to fellow bikers going in the opposite direction and being given the "wave" back.
I ride because I love seeing the smile on little kids faces as they look at me and wave frantically to get my attention.
I ride for the adventure. For the joy it gives me.
I ride to see new places. Small towns. Creeks and rivers. Forests and trees. Open plains.
I ride because in a strange way, it makes me feel nearer to G-d.
I ride to feel alive.
For some people, an explanation of why I ride is impossible to comprehend. For those who ride, an explanation isn't necessary.
Tuesday, March 16, 2010
Hope and Reality
It's a beautiful day here in NYC. About 60 degrees and the sun is shining. Elke threw up this morning, so instead of going for a ride, I'm staying home with her to make sure she is OK. And I'm taking this opportunity to sit on the balcony and enjoy the great weather.
So, getting back to the title, "Hope and Reality".
I was going to call this "Hope vs. Reality", but I think they often coincide nicely with each other.
Hope - When one is told they have cancer, different things run through their minds. One is "Oh my G-d, I'm going to die." Another is, "I'm going to beat this thing." As cancer patients, we hope that we won't become one of the cancer death statistics. We hope that we will be one of the people that can say, "I beat cancer!" or "I've been cancer free for [insert number here] years." We hope we won't have to do chemo, but if we do, we hope it will be effective. Whenever we have tests, we always hope to hear the doctor say, "I have good news..."
We base this hope on different things. We base our hope on our belief that G-d can heal us. We base our hope on modern medicine and the wisdom of our doctors to do what is best. Sometimes we base our hope on sheer luck. For many, their hope is realized.
And for many, their reality does not measure up to their hope.
For many cancer patients, me included, the reality is that cancer is a killer. It robs one of time, health, family, dreams...
Roni and I got hit with the big "reality club" when we spoke to the doctor and he said "It looks like the signet ring cells (the agressive cancer cells) are starting to act like signet ring cells." Up till then, we were hoping the radiation I had was successful and that I would be able to have another surgery to remove the remaining two tumors. The reality was that the cancer had spread to the lungs, was starting to grow in the liver, recurred in the splenic bed and the tumor on the mesantery (sp?) grew. So now we deal with the reality that, barring a miracle, this cancer is going to continue to progress and be the thing that kills me.
As our reality changed, so does our hope. We continue to hope for a miracle, but make plans in case that doesn't happen. We hope that it is a long time before any symptoms appear that would diminish my quality of life. We hope that we can continue to share adventures, like going to Australia, for a long time yet.
Among the many things we have learned since starting this journey, is that our hopes and realities often change.
There is one thing that we have always hoped for, and has been a constant reality, and that is G-d has been with us through all of this. This doesn't mean that we have always leaned on Him. It doesn't mean we have always felt his presence. It doesn't mean we have always been happy with the path He has led us down. But looking back, we can see that He has been by our sides. He has given us the strength when we didn't think we could go on. He has brought people into our lives who have shown us what courage in the face of death looks like. He has brought friends who have been with us, and if nonthing else, just agreed with us that cancer sucks.
G-d hasn't always brought us everything we wanted, but He has brought us everything we need. One of our hopes now is that we continue to see the reality of G-d in our lives.
So, getting back to the title, "Hope and Reality".
I was going to call this "Hope vs. Reality", but I think they often coincide nicely with each other.
Hope - When one is told they have cancer, different things run through their minds. One is "Oh my G-d, I'm going to die." Another is, "I'm going to beat this thing." As cancer patients, we hope that we won't become one of the cancer death statistics. We hope that we will be one of the people that can say, "I beat cancer!" or "I've been cancer free for [insert number here] years." We hope we won't have to do chemo, but if we do, we hope it will be effective. Whenever we have tests, we always hope to hear the doctor say, "I have good news..."
We base this hope on different things. We base our hope on our belief that G-d can heal us. We base our hope on modern medicine and the wisdom of our doctors to do what is best. Sometimes we base our hope on sheer luck. For many, their hope is realized.
And for many, their reality does not measure up to their hope.
For many cancer patients, me included, the reality is that cancer is a killer. It robs one of time, health, family, dreams...
Roni and I got hit with the big "reality club" when we spoke to the doctor and he said "It looks like the signet ring cells (the agressive cancer cells) are starting to act like signet ring cells." Up till then, we were hoping the radiation I had was successful and that I would be able to have another surgery to remove the remaining two tumors. The reality was that the cancer had spread to the lungs, was starting to grow in the liver, recurred in the splenic bed and the tumor on the mesantery (sp?) grew. So now we deal with the reality that, barring a miracle, this cancer is going to continue to progress and be the thing that kills me.
As our reality changed, so does our hope. We continue to hope for a miracle, but make plans in case that doesn't happen. We hope that it is a long time before any symptoms appear that would diminish my quality of life. We hope that we can continue to share adventures, like going to Australia, for a long time yet.
Among the many things we have learned since starting this journey, is that our hopes and realities often change.
There is one thing that we have always hoped for, and has been a constant reality, and that is G-d has been with us through all of this. This doesn't mean that we have always leaned on Him. It doesn't mean we have always felt his presence. It doesn't mean we have always been happy with the path He has led us down. But looking back, we can see that He has been by our sides. He has given us the strength when we didn't think we could go on. He has brought people into our lives who have shown us what courage in the face of death looks like. He has brought friends who have been with us, and if nonthing else, just agreed with us that cancer sucks.
G-d hasn't always brought us everything we wanted, but He has brought us everything we need. One of our hopes now is that we continue to see the reality of G-d in our lives.
Thursday, March 11, 2010
Good News and Bad News
Unfortunately, the Bad News is badder than the Good News is gooder.
First the good news. I don't have to have another surgery. No GoLytely. No IVs. No NG tubes. No drains. No "other things" that makes surgery and recovery, shall we say, unpleasant.
Now the bad news.We heard back from the doctor in Omaha concerning my recent CT scan and it looks like there are new spots of cancer. 2 in the lungs. Recurrence in the splenic bed (where my spleen used to be), and the tumor on the mesantary is enlarged. That means that the treatment that I had before, both the chemo and the radiation didn't do a lot of good. Probably the thing that hit us the hardest was when the doctor said the Signet Ring cells were starting to act like Signet Ring cells. For those of you that don't know, Signet Ring cells are the most aggressive cells of PMP. I have had them from the beginning (over 6 years ago), and the doctors have been amazed that I was still around. That means that for some reason, they weren't acting like the normally do. But, now they are.
So, with the new tumors, surgery isn't really an option as the doctor would not be able to do a complete cydoreduction (i.e. remove all the tumor). This leaves us with two options. 1) Do nothing and just watch and wait. Enjoy life and try to get in as much "living" as possible before the symptoms start becoming too bad. Or 2) try more chemotherapy and biological agents. There is one "cocktail" I have not had which is a combination of Irinotecan (chemo) and Erbitux (bilogical - not chemo), which may help keep the tumors at bay. We know they will not kill the cancer, all we would be able to hope for is that it would keep the cancer from growing. However, we would have no idea how long it would be effective. Also, we don't know how it would effect my quality of life. Would it drain my energy? Would it keep me from being able to travel, or ride my Harley? If so, would it be worth it to go through all of that just to be "house ridden" for who knows how long?
Lots of questions, not many answers right now.
The news hit us both pretty hard, especially as it was the news that we were hoping NOT to get.
Roni and I have been married for over 18 years, and we often talked about visiting Australia for our 20th anniversary so I could show Roni where I lived over there. We are currently considering making that trip this year. Maybe in April or May. If we go, we will fly to Brisbane and rent a car and drive north to Charters Towers. It would be good to see some of my friends from my high school days, and see how much things have changed, or stayed the same since I left. If we make the trip, we will be sure to keep everyone updated, and will be sure to take A LOT of pictures.
I am sorry to even have to bring you this news about my cancer, but knew eventually I would have to post something like this. We appreciate your prayers and know that G-d will be with us during this leg of the journey as He has been all along. We don't know what the future holds, but we do know who holds the future.
I'll write more later, but for now, at least we have one more day...
First the good news. I don't have to have another surgery. No GoLytely. No IVs. No NG tubes. No drains. No "other things" that makes surgery and recovery, shall we say, unpleasant.
Now the bad news.We heard back from the doctor in Omaha concerning my recent CT scan and it looks like there are new spots of cancer. 2 in the lungs. Recurrence in the splenic bed (where my spleen used to be), and the tumor on the mesantary is enlarged. That means that the treatment that I had before, both the chemo and the radiation didn't do a lot of good. Probably the thing that hit us the hardest was when the doctor said the Signet Ring cells were starting to act like Signet Ring cells. For those of you that don't know, Signet Ring cells are the most aggressive cells of PMP. I have had them from the beginning (over 6 years ago), and the doctors have been amazed that I was still around. That means that for some reason, they weren't acting like the normally do. But, now they are.
So, with the new tumors, surgery isn't really an option as the doctor would not be able to do a complete cydoreduction (i.e. remove all the tumor). This leaves us with two options. 1) Do nothing and just watch and wait. Enjoy life and try to get in as much "living" as possible before the symptoms start becoming too bad. Or 2) try more chemotherapy and biological agents. There is one "cocktail" I have not had which is a combination of Irinotecan (chemo) and Erbitux (bilogical - not chemo), which may help keep the tumors at bay. We know they will not kill the cancer, all we would be able to hope for is that it would keep the cancer from growing. However, we would have no idea how long it would be effective. Also, we don't know how it would effect my quality of life. Would it drain my energy? Would it keep me from being able to travel, or ride my Harley? If so, would it be worth it to go through all of that just to be "house ridden" for who knows how long?
Lots of questions, not many answers right now.
The news hit us both pretty hard, especially as it was the news that we were hoping NOT to get.
Roni and I have been married for over 18 years, and we often talked about visiting Australia for our 20th anniversary so I could show Roni where I lived over there. We are currently considering making that trip this year. Maybe in April or May. If we go, we will fly to Brisbane and rent a car and drive north to Charters Towers. It would be good to see some of my friends from my high school days, and see how much things have changed, or stayed the same since I left. If we make the trip, we will be sure to keep everyone updated, and will be sure to take A LOT of pictures.
I am sorry to even have to bring you this news about my cancer, but knew eventually I would have to post something like this. We appreciate your prayers and know that G-d will be with us during this leg of the journey as He has been all along. We don't know what the future holds, but we do know who holds the future.
I'll write more later, but for now, at least we have one more day...
Tuesday, March 09, 2010
No News is... No News
Well, as you know from the last post, our meeting with Dr. Loggie was canceled. I went ahead and got my CT scan here in NYC and had the results sent to Omaha. We were hoping that we would hear back from Dr. Loggie yesterday, but for some reason he didn't call. So, we still don't know what the results of the CT scan is, and what our next steps will be.
Yes, it is very frustrating.
If surgery is in the future, it is scheduled for March 25, which is just over two weeks away. That means if we find out that is the option, we only have a couple of weeks to arange a dog sitter for Elke, family leave for Roni and everything else we need to do for a hospital stay in Omaha.
Again, when we learn what is going on, I'll let you all know.
Kevin
Yes, it is very frustrating.
If surgery is in the future, it is scheduled for March 25, which is just over two weeks away. That means if we find out that is the option, we only have a couple of weeks to arange a dog sitter for Elke, family leave for Roni and everything else we need to do for a hospital stay in Omaha.
Again, when we learn what is going on, I'll let you all know.
Kevin
Sunday, February 28, 2010
Appt. with Dr. Loggie Cancelled
Well, we will not be going to Omaha this week to see Dr. Loggie. He has some personal things to take care of, so our appt. with him has been canceled. Instead of going to Omaha to get a CT scan, I will be getting it here in NYC, then send the report and CD to Dr. Loggie for him to look at. He will then let us know what he recommends, which could be to do nothing because the radiation didn't help that much. Do nothing because the radiation worked great and nothing needs to be done. Or, come to Omaha for another surgery to remove the existing tumors. If it's the last choice, we already have a tentative date for the surgery, which will be March 25th.
So, it looks like another week or so of waiting to found out what lies ahead...
When we find out, we'll let you all know.
Kevin
So, it looks like another week or so of waiting to found out what lies ahead...
When we find out, we'll let you all know.
Kevin
Subscribe to:
Posts (Atom)