It has been pointed out to me that I have been negligent in updating my blog.
Other than saying "Rob is doing well, he continues to eat, sleep, and poop." I don't know what else to say. Hehehehe (again, like a baby). Well, that's not entirely true.
He is having lovely walks up Millcreek Canyon with his Dad every day to get his lung (and legs) working again. This morning, I spoke with Elaine (Rob's Mom) about the walk Steven (Rob's Dad) and Rob had yesterday. She had a conversation with Steven and asked if Rob had to stop at all during the 'walk' (more like hike) and he responded, "No, but I wanted him to." That is so like Rob - nonstop working until the task is done. He is a work-horse.
Good work, Rob! I don't think that his lung capacity will be what it used to, but I think that he will try his hardest to get it as high as he can. Breathe Deep!
Thursday, February 26, 2009
Friday, February 20, 2009
Belated Update or No New Information
DISCLAIMER: I started this entry late on Friday. I had to go to bed before finishing. I was going to complete it on Saturday and then again on Sunday, but since today is Monday, you can see that I didn't get around to it - hopefully, my mind will cooperate and I will sound somewhat intelligible. This entry is long: BEWARE...
It was a very long day today. We started off the day with a nice long meeting with a geneticist, Janet Williams, whom so graciously agreed to meet with us. After giving the medical history of Rob's family, it was determined that there really isn't a familial correlation with the cancer. They cannot rule out our children being high risk, but they also cannot rule out them having no risk. (How is that for an answer?)
At this time, there are no studies (that she could find) in which Rob can enroll. However, there is one study in which he could qualify if he has at least two other members of his immediate family with the same cancer. I may be completely off base, but I am guessing that none of his siblings or parents want to volunteer. (Let me know if you start having back pain, weird breathing, or other known lung cancer symptoms such as coughing up blood. We know an amazing pulmonologist.)
After the informative meeting, we met with Rob's radiation oncologist, John Thomson. Thursday evening, he held a meeting with other radiation oncologists from Logan to St. George (the northern to southern regions of Utah - in case you are not familiar with our geography). After presenting Rob's case, there was some discussion as to what these doctors would do, if Rob was their patient. They voted six to one in favor of NOT administering radiation again - at this time. That is to say, they are not ruling it out for the future.
I suppose that, that is good news??? When administering radiation, they are very careful to only use a 'safe' (I use that term loosely) levels for treatment. Last cancer go-round, Rob's heart received a quarter of that safe amount and his spinal column received half of the amount. Since, more than likely, they would radiate the same area, it would be a little risky (this is me talking, not the doctors).
To top off the day, we met with Rob's oncologist, Greg Litton. We got a little more information on the tumor that was sent to Denver. 'They' are looking to see if the tumor has certain EGFR markers:
If Rob's tumor has these markers, there may be a targeted medicine that he can take. It is called Tarceva - targeted means that the drug is meant for the tumor only; whereas, chemotherapy targets fast dividing cells (hair, tumor, hair, other organs, hair). One of the side effects is that he will have a face, chest, and back like a teenager, though (severe rash that looks a lot like acne).
Basically, we have a few options at this point:
1. Follow (if there are no markers)
2. Chemo (if there are no markers and/or if there are markers)
3. Tarceva (if there are markers)
So, needless to say, Rob and I have a lot to think about in the next few weeks. He still has another four weeks before he is completely healed and is able to tolerate any kind of treatment. His oncologist wanted him to keep the March CT and appointment (we scheduled these in September) and perhaps we may have the results for the EGFR mutation by then.
On another note, my boss, Brent James, has contacted his colleagues at MD Anderson (the highest rated cancer center in the United States) to see what their first thoughts are. At first glance, they have no data to suggest anything. (This sounds vaguely familiar...).
I said to Brent, "Wow. Not surprising, right?" His response was that it isn't, but it is. MD Anderson sees so many more cancer patients than us (they are located in Texas) - he was hoping that they might have some more data than Utah. He has asked them to look at Rob's case more closely and to see if there are any trials for which he might qualify. He will forward the response to me.
Below are a few links to find out more about the drug Tarceva, if you are interested.
EGFR Gene and Lung Cancer Drug Tarceva
Biomarkers Found That Predict Lung Cancer Patient Response To Therapy
Tarceva Side Effects
It was a very long day today. We started off the day with a nice long meeting with a geneticist, Janet Williams, whom so graciously agreed to meet with us. After giving the medical history of Rob's family, it was determined that there really isn't a familial correlation with the cancer. They cannot rule out our children being high risk, but they also cannot rule out them having no risk. (How is that for an answer?)
At this time, there are no studies (that she could find) in which Rob can enroll. However, there is one study in which he could qualify if he has at least two other members of his immediate family with the same cancer. I may be completely off base, but I am guessing that none of his siblings or parents want to volunteer. (Let me know if you start having back pain, weird breathing, or other known lung cancer symptoms such as coughing up blood. We know an amazing pulmonologist.)
After the informative meeting, we met with Rob's radiation oncologist, John Thomson. Thursday evening, he held a meeting with other radiation oncologists from Logan to St. George (the northern to southern regions of Utah - in case you are not familiar with our geography). After presenting Rob's case, there was some discussion as to what these doctors would do, if Rob was their patient. They voted six to one in favor of NOT administering radiation again - at this time. That is to say, they are not ruling it out for the future.
I suppose that, that is good news??? When administering radiation, they are very careful to only use a 'safe' (I use that term loosely) levels for treatment. Last cancer go-round, Rob's heart received a quarter of that safe amount and his spinal column received half of the amount. Since, more than likely, they would radiate the same area, it would be a little risky (this is me talking, not the doctors).
To top off the day, we met with Rob's oncologist, Greg Litton. We got a little more information on the tumor that was sent to Denver. 'They' are looking to see if the tumor has certain EGFR markers:
EGFR
The protein found on the surface of some cells and to which epidermal growth factor binds, causing the cells to divide. It is found at abnormally high levels on the surface of many types of cancer cells, so these cells may divide excessively in the presence of epidermal growth factor. Also called epidermal growth factor receptor, ErbB1, and HER1. http://www.cancer.gov/templates/db_alpha.aspx?CdrID=44397
If Rob's tumor has these markers, there may be a targeted medicine that he can take. It is called Tarceva - targeted means that the drug is meant for the tumor only; whereas, chemotherapy targets fast dividing cells (hair, tumor, hair, other organs, hair). One of the side effects is that he will have a face, chest, and back like a teenager, though (severe rash that looks a lot like acne).
Basically, we have a few options at this point:
1. Follow (if there are no markers)
2. Chemo (if there are no markers and/or if there are markers)
3. Tarceva (if there are markers)
So, needless to say, Rob and I have a lot to think about in the next few weeks. He still has another four weeks before he is completely healed and is able to tolerate any kind of treatment. His oncologist wanted him to keep the March CT and appointment (we scheduled these in September) and perhaps we may have the results for the EGFR mutation by then.
On another note, my boss, Brent James, has contacted his colleagues at MD Anderson (the highest rated cancer center in the United States) to see what their first thoughts are. At first glance, they have no data to suggest anything. (This sounds vaguely familiar...).
I said to Brent, "Wow. Not surprising, right?" His response was that it isn't, but it is. MD Anderson sees so many more cancer patients than us (they are located in Texas) - he was hoping that they might have some more data than Utah. He has asked them to look at Rob's case more closely and to see if there are any trials for which he might qualify. He will forward the response to me.
Below are a few links to find out more about the drug Tarceva, if you are interested.
EGFR Gene and Lung Cancer Drug Tarceva
Biomarkers Found That Predict Lung Cancer Patient Response To Therapy
Tarceva Side Effects
Monday, February 16, 2009
All Tired on the Western Front
Rob is like a newborn baby. He is awake for a few hours and then sleeps for a few hours. Ahhh, it is so cute.
This is where the similarity ends, though (in case you are wondering).
He is enjoying his time off work. Nice vacation, right? (Too bad we aren't really somewhere WARMER!!!) Actually, I think that he would much rather be going to work and school now.
Not much to report now, other than the sleeping and the healing and the sleeping.
We hope to have appointments very soon with the oncologist & radiation oncologist.
This is where the similarity ends, though (in case you are wondering).
He is enjoying his time off work. Nice vacation, right? (Too bad we aren't really somewhere WARMER!!!) Actually, I think that he would much rather be going to work and school now.
Not much to report now, other than the sleeping and the healing and the sleeping.
We hope to have appointments very soon with the oncologist & radiation oncologist.
Thursday, February 12, 2009
Abby Normal
Let's start with a joke:
What do you get when you have a room full of specialty doctors discussing Rob's case?
Answer: stumped
HAHAHAHA! Funny, huh? I still cannot stop laughing.
OK. Rob and I returned home after a very nice meeting/appointment with Dr. Collins for Rob's surgery follow-up and to let us know what the Tumor Board recommended. I am just going to list the items below...
* The tumor in his lung has a unique pathology
* The second tumor (mediastinum, remember???) had gone through the lining of the chest wall, but not in the surrounding areas
* The second tumor (see above) was right in the center of the radiation field (the radiation he received last time) - apparently it wasn't effective (no offense to you Tarali, giver of radiation)
* There are no case studies with Rob's cancer situation (young, recurrent, male) - he just doesn't fit any mold
* He is three deviations from standard in a bell curve
* "They" can count on one hand the amount of young, male patients that have had their adencarcinoma reoccur in a different lobe (this is why there is no data/studies)
* Dr. Collins is having the pathologists send Rob's tumor to Denver to have it checked for GENETIC MUTATIONS. This may help to determine what medicine would be effective, if any (!!! - I wonder whether he will sprout knives between his knuckles when he is ready to fight??)
* For the kind of cancer Rob has, he should be a female (did he have some sort of change that I don't know about??)
* John Thomson (Rob's radiation oncologist) wants to present Rob's case to all Wasatch Front radiation oncologists at a conference to get a broader opinion
* Greg Litton (Rob's oncologist) said in that Tumor meeting that there is no data to support Rob getting chemo again. One option would be to wait to see if it reoccurs again and then treat, but given Rob's age it might would be OK to do chemo right now
So, basically we know just about as much as we did yesterday. It seems as though we are on our own? I don't know. It seems crazy. So, we make some more appointments with the two oncologists in the next month or so and hopefully we can discuss options then.
(I hope that if Rob really is a mutant, he will be just like Wolverine. Hugh Jackman is so cute AND he can heal himself. Rob is cute, too. No, he doesn't have to wear black (or blue/yellow) Spandex. Remember, though, Wolverine can heal himself!)
What do you get when you have a room full of specialty doctors discussing Rob's case?
Answer: stumped
HAHAHAHA! Funny, huh? I still cannot stop laughing.
OK. Rob and I returned home after a very nice meeting/appointment with Dr. Collins for Rob's surgery follow-up and to let us know what the Tumor Board recommended. I am just going to list the items below...
* The tumor in his lung has a unique pathology
* The second tumor (mediastinum, remember???) had gone through the lining of the chest wall, but not in the surrounding areas
* The second tumor (see above) was right in the center of the radiation field (the radiation he received last time) - apparently it wasn't effective (no offense to you Tarali, giver of radiation)
* There are no case studies with Rob's cancer situation (young, recurrent, male) - he just doesn't fit any mold
* He is three deviations from standard in a bell curve
* "They" can count on one hand the amount of young, male patients that have had their adencarcinoma reoccur in a different lobe (this is why there is no data/studies)
* Dr. Collins is having the pathologists send Rob's tumor to Denver to have it checked for GENETIC MUTATIONS. This may help to determine what medicine would be effective, if any (!!! - I wonder whether he will sprout knives between his knuckles when he is ready to fight??)
* For the kind of cancer Rob has, he should be a female (did he have some sort of change that I don't know about??)
* John Thomson (Rob's radiation oncologist) wants to present Rob's case to all Wasatch Front radiation oncologists at a conference to get a broader opinion
* Greg Litton (Rob's oncologist) said in that Tumor meeting that there is no data to support Rob getting chemo again. One option would be to wait to see if it reoccurs again and then treat, but given Rob's age it might would be OK to do chemo right now
So, basically we know just about as much as we did yesterday. It seems as though we are on our own? I don't know. It seems crazy. So, we make some more appointments with the two oncologists in the next month or so and hopefully we can discuss options then.
(I hope that if Rob really is a mutant, he will be just like Wolverine. Hugh Jackman is so cute AND he can heal himself. Rob is cute, too. No, he doesn't have to wear black (or blue/yellow) Spandex. Remember, though, Wolverine can heal himself!)
Monday, February 9, 2009
Long enough wait?
I apologize profusely for the lag between the last post and this. It has been the longest week EVER.
On a pain scale of one to ten, Rob's pain was an 18. Needless to say, he was OK with the dying option last week. It was really just awful watching him have so much pain and not really be able to do anything for him.
He has cut back on his pain meds (seriously? I think that he is a masochist). See justification below:
OK. After a trip to the ER (six blissful hours) last week, Rob was sent home with three prescriptions. One being the medicine that docs prescribe when they are preparing patients for a colonoscopy. His high dosage of narcotics for two weeks basically rendered his bowels useless. (Is this more information than you wanted to hear? I know that EVERYONE that is reading this, loves Rob, so in essence, you DO want to hear, right???) He had severe nausea and he looked a lot like Homer Simpson (think: HUGE stomach).
Well, yesterday was a great day! His pain level was at a tolerable level - he says that he refuses to rate it anymore. Things are moving again (hehehe). All systems, go. He is feeling like a human being once again. (Thank goodness!)
Tomorrow the Tumor Review Board meets (we assume once again). We will see Dr. Collins on Thursday this week to find out the verdict. Ahhh! The suspense is killing us!
Here is a funny story that will make you laugh: Noah was rummaging through Rob's closet where he keeps his CamelPak (a backpack that has a container for water with a long clear tube that connects to an apparatus that you drink from while hiking). He pulls out the long clear tube and says, "Hey! Here's Daddy's chest tubes!" He then placed the clear tube next to his side and made a face that looked like he was sick and included his tongue hanging out. Rob and I thought it was pretty funny.
On a pain scale of one to ten, Rob's pain was an 18. Needless to say, he was OK with the dying option last week. It was really just awful watching him have so much pain and not really be able to do anything for him.
He has cut back on his pain meds (seriously? I think that he is a masochist). See justification below:
OK. After a trip to the ER (six blissful hours) last week, Rob was sent home with three prescriptions. One being the medicine that docs prescribe when they are preparing patients for a colonoscopy. His high dosage of narcotics for two weeks basically rendered his bowels useless. (Is this more information than you wanted to hear? I know that EVERYONE that is reading this, loves Rob, so in essence, you DO want to hear, right???) He had severe nausea and he looked a lot like Homer Simpson (think: HUGE stomach).
Well, yesterday was a great day! His pain level was at a tolerable level - he says that he refuses to rate it anymore. Things are moving again (hehehe). All systems, go. He is feeling like a human being once again. (Thank goodness!)
Tomorrow the Tumor Review Board meets (we assume once again). We will see Dr. Collins on Thursday this week to find out the verdict. Ahhh! The suspense is killing us!
Here is a funny story that will make you laugh: Noah was rummaging through Rob's closet where he keeps his CamelPak (a backpack that has a container for water with a long clear tube that connects to an apparatus that you drink from while hiking). He pulls out the long clear tube and says, "Hey! Here's Daddy's chest tubes!" He then placed the clear tube next to his side and made a face that looked like he was sick and included his tongue hanging out. Rob and I thought it was pretty funny.
Tuesday, February 3, 2009
Down the hall and to the right
Rob is adjusting nicely to his new home. He doesn't seem confused when we tell him where the bathroom is located. (hehehehe)
Apparently, the Tumor Review Board was NOT held today as orginially thought. It will be held next week (unless of course it isn't). Regardless, we will have to wait until our follow-up with Dr. Collins.
Even though Rob will have to be fully recovered (six to eight weeks) before receiving treatment, it is driving me crazy with the waiting. Funny how one little piece of information is so powerful.
Apparently, the Tumor Review Board was NOT held today as orginially thought. It will be held next week (unless of course it isn't). Regardless, we will have to wait until our follow-up with Dr. Collins.
Even though Rob will have to be fully recovered (six to eight weeks) before receiving treatment, it is driving me crazy with the waiting. Funny how one little piece of information is so powerful.
Sunday, February 1, 2009
Home Again
Finally. About 2 pm, Dr. Collins came in. After a discussion as to whether Rob should stay another day while figuring out his pain medicine or go home with an increase in his pain meds and hope for the best, we decided that Rob should come home.
After figuring out everything (apparently, getting high-profile narcotics is difficult), getting Rob dressed, out to the car and picking up other meds at another pharmacy (IMED didn't have everything) we were able to have a little family reunion around 4:30 tonight.
The kids were so excited to see Rob. The dog just came and sat by Rob's feet (this is something she doesn't do - she likes to run around too much). It was fantastic. It has been great having him home.
The Tumor Review Board meets on Tuesday, but we don't see Dr. Collins for two weeks. We may not have any information as to what Rob's treatment will be until then (unless of course, we do).
I am grateful to have our family under one roof again.
After figuring out everything (apparently, getting high-profile narcotics is difficult), getting Rob dressed, out to the car and picking up other meds at another pharmacy (IMED didn't have everything) we were able to have a little family reunion around 4:30 tonight.
The kids were so excited to see Rob. The dog just came and sat by Rob's feet (this is something she doesn't do - she likes to run around too much). It was fantastic. It has been great having him home.
The Tumor Review Board meets on Tuesday, but we don't see Dr. Collins for two weeks. We may not have any information as to what Rob's treatment will be until then (unless of course, we do).
I am grateful to have our family under one roof again.
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