Greg Hewlett passed away on January 17th after nearly eight years of battling colon cancer. While we grieve his loss, we are comforted to know that he is with his Lord.
If you would like to leave your thoughts on Greg, please see this thread.
If you would like to make a charitable donation in Greg's honor, please see this thread.
The Struggle Has Ended
Monday, February 1, 2010
FOLFIRI losing it's oomph
Last week I went to MD Anderson for my three-month tests and assessment.
Looks like the run of stable scans has ended for the current chemo ("FOLFIRI"). There was about 15-25% growth in the three tumors (one lung, two lymph nodes).
Dr. Eng says its time to move to the next chemo recipe ("Erbitux + Irinotecan"). This is the last FDA-approved chemo available for me. The last trick in the bag of tricks would be chest radiation, which causes a lot of damage, but can stunt the cancer for significant time (like a year or two). So the Erbitux is recommended next.
BTW, Erbitux is the drug, of which the original FDA rejection was known by Martha Stewart who dumped her stock and ended up in jail.
The bummer about this chemo is that it has a rough side-effect. One I've never had before. It causes a bad rash, much like acne. Pretty ugly and painful. The rash continues as long as I'm on it. Plus it has much of the other bad effects digestive, fatigue, etc.
Also it causes fingernail and fingertip problems, even losing fingernails in some cases. I asked, "What about playing guitar?". "Probably shouldn't", she said. ugh. That was something I was not prepared for.
It is disappointing to move to this last chemo. The one I've been on has worked as I've taken it off and on for six years - way longer than just about anybody they've treated. Me and FOLFIRI had a very long love-hate relationship, but its over. Certainly a bummer.
Please pray the Erbitux will have as long and succesful of a run as the FOLFIRI. Dr. Eng says one man has been on it for four years. Also, my prayer is that there would be new chemos. There is one that just closed (ugh-missed the window) in phase 1 trial. Perhaps it will work well and be available when I'm through with Erbitux.
There is a DNA test you can take to see if your cancer is likely to respond well (shrink) to Erbitux. They don't bother giving it if this test predicts it will not. I took the test about a year ago. My cancer is predicted to respond. It is good I am even in this group at all.
Dr. Eng wants a break from chemo first. She recommends two weeks off chemo altogether. I begin Erbitux Feb 16. So I get a bit of a health-building break.
Ecclesiastes says, "No man has power over the wind to contain it ; so no one has power over the day of his death." I'm not going to get anywhere worrying or trying to change the way things are. Nor trying to speculate what this means for the future - there is no way I could have seen the things I have been given since 2003. I'm going to continue living as I have with hope and cherishing and using each day as best I can. I've had lots of ups and downs. This is one of those downs.
Dolce
On top of all this, Dolce died on Jan 30. She was a wonderful dog to me and Christine for 18 years - and we got her grown. So she was about 19 years old. She stayed snuggly with her luxurious coat until the end. She was such a wonderful companion to Christine all these years of laying in pain. She was one of a kind. Here's a couple posts with her pics - here and here.
Looks like the run of stable scans has ended for the current chemo ("FOLFIRI"). There was about 15-25% growth in the three tumors (one lung, two lymph nodes).
Dr. Eng says its time to move to the next chemo recipe ("Erbitux + Irinotecan"). This is the last FDA-approved chemo available for me. The last trick in the bag of tricks would be chest radiation, which causes a lot of damage, but can stunt the cancer for significant time (like a year or two). So the Erbitux is recommended next.
BTW, Erbitux is the drug, of which the original FDA rejection was known by Martha Stewart who dumped her stock and ended up in jail.
The bummer about this chemo is that it has a rough side-effect. One I've never had before. It causes a bad rash, much like acne. Pretty ugly and painful. The rash continues as long as I'm on it. Plus it has much of the other bad effects digestive, fatigue, etc.
Also it causes fingernail and fingertip problems, even losing fingernails in some cases. I asked, "What about playing guitar?". "Probably shouldn't", she said. ugh. That was something I was not prepared for.
It is disappointing to move to this last chemo. The one I've been on has worked as I've taken it off and on for six years - way longer than just about anybody they've treated. Me and FOLFIRI had a very long love-hate relationship, but its over. Certainly a bummer.
Please pray the Erbitux will have as long and succesful of a run as the FOLFIRI. Dr. Eng says one man has been on it for four years. Also, my prayer is that there would be new chemos. There is one that just closed (ugh-missed the window) in phase 1 trial. Perhaps it will work well and be available when I'm through with Erbitux.
There is a DNA test you can take to see if your cancer is likely to respond well (shrink) to Erbitux. They don't bother giving it if this test predicts it will not. I took the test about a year ago. My cancer is predicted to respond. It is good I am even in this group at all.
Dr. Eng wants a break from chemo first. She recommends two weeks off chemo altogether. I begin Erbitux Feb 16. So I get a bit of a health-building break.
Ecclesiastes says, "No man has power over the wind to contain it ; so no one has power over the day of his death." I'm not going to get anywhere worrying or trying to change the way things are. Nor trying to speculate what this means for the future - there is no way I could have seen the things I have been given since 2003. I'm going to continue living as I have with hope and cherishing and using each day as best I can. I've had lots of ups and downs. This is one of those downs.
Dolce
On top of all this, Dolce died on Jan 30. She was a wonderful dog to me and Christine for 18 years - and we got her grown. So she was about 19 years old. She stayed snuggly with her luxurious coat until the end. She was such a wonderful companion to Christine all these years of laying in pain. She was one of a kind. Here's a couple posts with her pics - here and here.
Thursday, October 29, 2009
A Very Good Day
(from phone) cancer completely stable! feeling better. still some fever. blood doc gave ok to go back 2 dallas. he will call every day through weekend. i thgnk he just wants 2 talk blood on hal'ween
Wednesday, October 28, 2009
A Miserable Day
Yesterday, I had a very bad day. The previous day I had felt quite well, enjoying a mind-cleaning drive down to Houston for my round of tests and meetings at MD Anderson. But when I awoke, I was achy, shivering, and increadibly fatigued. It is not a trivial matter changing an appointment at MDA Anderson. You just go. So I went over to the hospital anyway for my appointment with Dr. Manzullo of the fatigue clinic.
When they realized my temperature was over 102, and my blood work showed that I was "neutropenic" (low white blood cells), I became high prority. Turns out that neutropenia is not uncommon for chemo cancer patients. Nor is fever. I've had plenty of both. But when you have both, it can be dangerous. Without enough white blood cells, you cannot hold off whatever is causing the fever. Since I was already lying down in one of her waiting rooms, the doctor let me stay and worked the phones with my different doctors so I could avoid the standard response - send patient to the MDACC ER. "Bless you," I said to her. "Take however long you must, just don't send me there."
They decided to put me on the MDACC protocol for neutropenic fever, which is a 7-day outpatient deal. The standard treatment for this in most hospitals in America, one doctor told me, is to admit you in the hospital for treatment. But since they have great outpatient infrastruture and resources, because the various doctors are in close communication about your case here, and because over 90% of cases end up not being dangerous, they have designed an outpatient protocol that works well.
My day was not over. The next step was to go to the blood center and get more taken. Then to the pharmacy for antibiotics. Shuffling around the campus, wrapped in blankets, and shivering, I proceeded step by step, minute by minute. I finally made it home, took a nap, only to return a few hours later for the 5-hour CT Scan/barium enima test. Since cancer doesn't take breaks, neither does MD Anderson. So what if you've got a fever and feel miserable. You still need those pictures.
I am so thankful that my friends Belle and Peter have a place for me to stay only about 5 minutes from the hospital. That will make this outpatient process so much easier.
Today I went in for day two of the protocol. They took more blood and examined me. I also saw the blood doctor - I'm not sure what to call him - he's an internist who specializes in this stuff. (it seems appropriate I will be seeing a blood doctor over the Halloween weekend!) No conclusions yet. He said they'll probably know which direction things are going tomorrow - it takes three samples to establish a trend, right?
All this fever stuff is just a bump in the road. The big reason I'm here was and remains to figure out if the cancer is stable or advancing. I still find that out with an appointment with Dr. Eng tomorrow.
Meanwhile, they tell me lots of rest and drink liquids. I guess that's instead of the solids I usually drink.
When they realized my temperature was over 102, and my blood work showed that I was "neutropenic" (low white blood cells), I became high prority. Turns out that neutropenia is not uncommon for chemo cancer patients. Nor is fever. I've had plenty of both. But when you have both, it can be dangerous. Without enough white blood cells, you cannot hold off whatever is causing the fever. Since I was already lying down in one of her waiting rooms, the doctor let me stay and worked the phones with my different doctors so I could avoid the standard response - send patient to the MDACC ER. "Bless you," I said to her. "Take however long you must, just don't send me there."
They decided to put me on the MDACC protocol for neutropenic fever, which is a 7-day outpatient deal. The standard treatment for this in most hospitals in America, one doctor told me, is to admit you in the hospital for treatment. But since they have great outpatient infrastruture and resources, because the various doctors are in close communication about your case here, and because over 90% of cases end up not being dangerous, they have designed an outpatient protocol that works well.
My day was not over. The next step was to go to the blood center and get more taken. Then to the pharmacy for antibiotics. Shuffling around the campus, wrapped in blankets, and shivering, I proceeded step by step, minute by minute. I finally made it home, took a nap, only to return a few hours later for the 5-hour CT Scan/barium enima test. Since cancer doesn't take breaks, neither does MD Anderson. So what if you've got a fever and feel miserable. You still need those pictures.
I am so thankful that my friends Belle and Peter have a place for me to stay only about 5 minutes from the hospital. That will make this outpatient process so much easier.
Today I went in for day two of the protocol. They took more blood and examined me. I also saw the blood doctor - I'm not sure what to call him - he's an internist who specializes in this stuff. (it seems appropriate I will be seeing a blood doctor over the Halloween weekend!) No conclusions yet. He said they'll probably know which direction things are going tomorrow - it takes three samples to establish a trend, right?
All this fever stuff is just a bump in the road. The big reason I'm here was and remains to figure out if the cancer is stable or advancing. I still find that out with an appointment with Dr. Eng tomorrow.
Meanwhile, they tell me lots of rest and drink liquids. I guess that's instead of the solids I usually drink.
Monday, October 5, 2009
Fever gone
After nearly a month of infection with fever, I think I'm out of the woods. Four days straight now of no fever. Part of my mind was questioning whether I would ever feel well again. It was a dark hole and I'm so glad to be crawling out of it. Next round of chemo is Wednesday.
Christine finished her initial meetings and tests at the Chiari Institute and the medical team there believes surgery on her neck will significant help her pain and various nervous-system symptoms. They diagnosed her as indeed having Chiari malformation - it has to do with the bone and nerve structure where the brain channels into the spinal column (more info on Chiari malformation). It sounds like a major surgery ordeal with hospital stay and months of rehab. She will stay for now with her parents in Delaware and is working out the logistics including when is the right time to do it.
Here's a fun pic that my mom unearthed cleaning out some old stuff. I'd say it is around 1975 - Uncle Ron's tractor in the Ozarks, a stone's throw from Table Rock Lake. I'm with my sisters (in his lap), cousins and aunts.
click to enlarge
Christine finished her initial meetings and tests at the Chiari Institute and the medical team there believes surgery on her neck will significant help her pain and various nervous-system symptoms. They diagnosed her as indeed having Chiari malformation - it has to do with the bone and nerve structure where the brain channels into the spinal column (more info on Chiari malformation). It sounds like a major surgery ordeal with hospital stay and months of rehab. She will stay for now with her parents in Delaware and is working out the logistics including when is the right time to do it.
Here's a fun pic that my mom unearthed cleaning out some old stuff. I'd say it is around 1975 - Uncle Ron's tractor in the Ozarks, a stone's throw from Table Rock Lake. I'm with my sisters (in his lap), cousins and aunts.
click to enlargeMonday, September 28, 2009
Denver trip, continued infection, Christine progress
I took an extra week off chemo, which I am allowed to do periodically, to visit my sister in Denver. That was back on the tenth of September. We had some good time together and it was great to see them. But soon after I arrived, I came down with a fever - something viral the doc thinks. Unfortunately, I spent most of my time in Denver in bed.
Quick story - I did manage to get out of bed to watch the famous Charles Burck play (very) little league soccer. To be fair to everyone, it was his turn to play defense and he dutifully stayed back and did everything he could to defend the goal. His team was down 2-0 at half. He raised his hand and halftime. "Yes, Charles." "Can I pleeeease play offense." The coach agreed. Charles scored three times in the second half as they won 3-2.
After returning to Dallas, I remained sick and I still have not completely escaped the fever - even through last night, when I still had a mild fever. During the worst stretch, I had significant fever almost every day for a stretch of about 10 days.
At first, my doctor put off chemo another week, saying that it would be too risky since chemo often drops white blood cells, which I need to get rid of the infection. But another week went by and this past week he decided to go ahead and give the chemo anyway. He didn't want to give the cancer any more break. Bottom line - I got the double hit of chemotherapy while already sick.
So I have been pretty miserable for some time now. If you've been wondering where I am or why I haven't returned emails or kept up with something - well, that's why. Today is the first day I actually feel a little better, and I'm really hoping and expecting to pull out of this hole eventually. I was able to get out of the house yesterday to enjoy attending my friend Bill's ordination as a pastor in the Presbyterian church.Christine Update
Last week, Christine successfully completed a large set of tests at the Chiari Institute near NYC to test if the underlying cause for much of her continued pain and headache problems is something called Chiari Malformation. Today she goes back to meet with the doctor/surgeon to go over test results. Her parents are caring for her and they are all staying with her sister in NJ during the trip.
Tuesday, August 18, 2009
Results stable
It has been a long time since I've updated you. Thanks for all the expressions of concern in my absence.I am taking a rather difficult treatment of a chemo protocol called FOLFIRI+Avastin. It is administered in fourteen day cycles. Typically, I'm pretty sick at the beginning but by the fifth day or so, I'm more functional. Nothing severe or dangerous - just makes me feel lousy, kind of like the flu with intestinal problems. Hard to believe I've endured 14 of these since February, when I started the current plan.
A week ago I went to MD Anderson for a round of testing and meetings with doctors. The good news was that the tumors (of which there are three, all around a couple centimeters) are all completely stable. This means the chemo is working to hold them back. I will continue this chemo plan indefinitely as long as my body can take it and the situation is stable. The doctors continue to marvel at how long this class of chemotherapy has been effective. We're way past six years now in a field where 1-2 yrs is considered quite successful.
I am enjoying the simple life. It is really surprising how wonderful life is when it is stripped of so many "good" things. Like work and accomplishments and accumulation of stuff. I've found that music (playing guitar, mostly) is a great therapeutic retreat when I feel the sickest. Much better for the soul than TV, I've discovered. You can check out some of my music on my youtube channel. (youtube.com/greghewlett). Unfortunately, reading has become a bit more difficult - hard to concentrate when I'm feeling crummy. I have many good friends surrounding me with support and my church has been a wonderful source of nourishment for me. I've been able to visit family in St Louis and NYC and hope to see my sister (Julie) in Denver soon. I'm on full medical leave from TI, as I am unable to work under the chemo.I am growing in learning how to significantly reduce expectations on my body and live well with what I've got. Not much differently from what we all do, really.
Christine is still pursuing medical help at her parents home, so my friend Bill Burns has been staying with me at my home. He just turned forty, so if you talk with him, be sure to give him a hard time.
Sunday, May 10, 2009
Update - no E.R.
The bleeding episode stopped as suddenly as it started. I no longer coughed any blood after waking up with the problem. The doctor on call said I did not need to be seen today and can wait until Tuesday when I'm scheduled to go in anyway for chemo to see my doctor about it.
Really weird day. I awoke in a panic coughing out fresh blood and wondering what in the world was happening to me. Now everything seems so normal again. Like nothing ever happened. One thing about this cancer thing - always something interesting going on.
Thanks for your support and for your notes of care and concern.
Really weird day. I awoke in a panic coughing out fresh blood and wondering what in the world was happening to me. Now everything seems so normal again. Like nothing ever happened. One thing about this cancer thing - always something interesting going on.
Thanks for your support and for your notes of care and concern.
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