Because of the Thanksgiving holiday, everything has been compressed into this week. Today, Monday, he'll have an echo-cardiogram instead of the MUGA scan, tomorrow he'll have the port implanted, and the new chemo will be administered on Wednesday, Thursday and Friday.
I'm most concerned about his reaction to these new treatments with regard to adverse side-effects. I guess the best plan is to just take each day as it comes and deal with it.
Monday, November 30, 2009
Sunday, November 22, 2009
A Change in Treatment - November 22, 2009
When the CT results were not what we had hoped for, Dr K (MSKCC) offered her recommendation that Pete change to a different treatment. There were no new lesions, a good thing, but the results were again inconclusive with some lesions increasing and some decreasing in size. Because of how these new drugs are administered, we discussed the possibility of going to a local oncologist rather than driving up to MSKCC. She gave us the name of a practice about 1/2 hour from our home that she felt confident would handle Pete's care as they have worked with a number of her patients who live in south Jersey.
On Friday afternoon we had a first visit with Dr. W. He and all the staff were very gracious and the whole atmosphere was comfortable and calming. He took us on a tour of the facility and he and the others we met explained in detail the procedures and treatments Pete will be receiving. Although everyone that we've dealt with at MSKCC has been wonderful and very caring, the environment is that of a sterile hospital, and coupled with the stress of driving into and through the city to get there seems just a bit unnerving, for me at least.
Because of the change to the AIM protocol, Pete will need to have a port implanted and he will have to undergo a MUGA scan. I had never heard of it, but apparently it is a nuclear scan similar to an echo-cardiogram but it provides a much better assessment of the status of the left ventricle of the heart. One of the chemo drugs in this mix can do serious damage there and they need a baseline before the first infusion to make certain his heart is healthy enough to withstand the treatments, and then will repeat the scans at regular intervals to monitor for adverse effects. These 2 procedures will be done in the hospital (not sure whether Jersey Shore or Monmouth Medical) this week. Chemo will begin the week after Thanksgiving.
Though the new drugs Pete will be receiving (adiriamiacine aka doxorubicin, ifosfamide and mesna) are known to produce significantly more debilitating side effects than the initial drugs, it is hoped that the lesions will respond more favorably. Dr K indicated that she will be ordering a CT scan after the first cycle as opposed to the normal timing which would be after the 2nd cycle. One cycle, in this instance consists of 3 consecutive, 7-8 hr days of infusion and 2-3 weeks of follow-up monitoring, so the scan will probably be done just before Christmas. Based on those CT results, they will either proceed directly to surgery (if the lesions do not respond as hoped for) or continue on with the therapy.
That's about all there is right now. Since getting the disappointing results about a week ago I just needed to step away from the computer for a while. I didn't feel like tracking my food or water and though I logged on to SparkPeople a couple of times, I just didn't have the "oomph" to post or blog. I'm coming out of my "funk" and hope to get back in the swing of things starting today.
On Friday afternoon we had a first visit with Dr. W. He and all the staff were very gracious and the whole atmosphere was comfortable and calming. He took us on a tour of the facility and he and the others we met explained in detail the procedures and treatments Pete will be receiving. Although everyone that we've dealt with at MSKCC has been wonderful and very caring, the environment is that of a sterile hospital, and coupled with the stress of driving into and through the city to get there seems just a bit unnerving, for me at least.
Because of the change to the AIM protocol, Pete will need to have a port implanted and he will have to undergo a MUGA scan. I had never heard of it, but apparently it is a nuclear scan similar to an echo-cardiogram but it provides a much better assessment of the status of the left ventricle of the heart. One of the chemo drugs in this mix can do serious damage there and they need a baseline before the first infusion to make certain his heart is healthy enough to withstand the treatments, and then will repeat the scans at regular intervals to monitor for adverse effects. These 2 procedures will be done in the hospital (not sure whether Jersey Shore or Monmouth Medical) this week. Chemo will begin the week after Thanksgiving.
Though the new drugs Pete will be receiving (adiriamiacine aka doxorubicin, ifosfamide and mesna) are known to produce significantly more debilitating side effects than the initial drugs, it is hoped that the lesions will respond more favorably. Dr K indicated that she will be ordering a CT scan after the first cycle as opposed to the normal timing which would be after the 2nd cycle. One cycle, in this instance consists of 3 consecutive, 7-8 hr days of infusion and 2-3 weeks of follow-up monitoring, so the scan will probably be done just before Christmas. Based on those CT results, they will either proceed directly to surgery (if the lesions do not respond as hoped for) or continue on with the therapy.
That's about all there is right now. Since getting the disappointing results about a week ago I just needed to step away from the computer for a while. I didn't feel like tracking my food or water and though I logged on to SparkPeople a couple of times, I just didn't have the "oomph" to post or blog. I'm coming out of my "funk" and hope to get back in the swing of things starting today.
Sunday, November 15, 2009
Protein? - November 15, 2009
All results came back as close to normal as possible under the circumstances. Most of the anomalies are attributable to the side effects of the chemo. The one the doctor keyed into that was outside the normal range was the albumin number, which has to do with protein utilization and dehydration. Apparently, since my son has not been eating/drinking well or regularly, the doctor explained, this may result in edema in the extremities.
I have to say that they were very thorough in their testing - blood, EKG, ultrasound, x-rays, CT scan, just to name a few.
He was released with directions to keep his legs elevated and start eating more protein. He is also to follow up with his oncologist, of course.
I have to say that they were very thorough in their testing - blood, EKG, ultrasound, x-rays, CT scan, just to name a few.
He was released with directions to keep his legs elevated and start eating more protein. He is also to follow up with his oncologist, of course.
Time Moves Slowly - November 15, 2009
I'm sitting here with my hands shaking as I type. My son woke early this morning and when he heard me stirring, called me into his room. His legs are swollen tremendously. He won't call the doctor until 9. I put pillows under his legs to elevate them but that's about all I can do for now. I've tried to convince him to make that call (it's 7:20 now; I've been up since a little after 5). I'll try again to get him to call, but I guess he takes after me, stubborn.
Friday, November 13, 2009
They Didn't Work - November 13, 2009
Ok, the chemo treatments (gem/tax) they've been administering are not getting the hoped for results. Time to change gears and try a different set of drugs. This time it will take 3 days (7 am to about 4 pm) in a row to administer this series of drugs. This will be a cocktail of 3 drugs referred to as AIM (Adriamiacin, Ifosfamide and Mesna). Since it has often taken us 3 or more hours driving one way to or from MSKCC depending on traffic and these drugs have a much greater risk of unpleasant side effects, particularly nausea, we were trying to figure out how to handle this.
Dr. K understood the difficulty the long drive presented and gave us the names of some oncologists who have worked with other patients from south Jersey. Their practice is about 1/2 hour from us. She's comfortable with their level of experience in dealing with this type of cancer and treatments. We'll probably still be going to MSKCC in Basking Ridge for CT scans and all of his results and care will be coordinated through MSKCC.
Today's results were not what we were hoping to get. I have a horrible feeling in the pit of my stomach but at the same time, I'm hopeful that these other drugs are the ones that will work.
Dr. K understood the difficulty the long drive presented and gave us the names of some oncologists who have worked with other patients from south Jersey. Their practice is about 1/2 hour from us. She's comfortable with their level of experience in dealing with this type of cancer and treatments. We'll probably still be going to MSKCC in Basking Ridge for CT scans and all of his results and care will be coordinated through MSKCC.
Today's results were not what we were hoping to get. I have a horrible feeling in the pit of my stomach but at the same time, I'm hopeful that these other drugs are the ones that will work.
Wednesday, November 11, 2009
Whatever He Wants, He Gets - November 11, 2009
Pete lost his appetite around the start of the second round of chemo. He says nothing tastes good anymore. There are some days when all he'll eat are a few pretzels; there have been days when he's eaten nothing. So when he does feel like having something, I'm ecstatic.
He had a craving for pork roll and cheese on a potato roll a few weeks back, so I make sure I have those in the house. He's eaten that a few times. Another day he felt like having meat lasagna, so I called the Italian restaurant down the road and got a take-out order. Of course, even when he does feel like eating that doesn't mean he's going to eat very much. He ate about 1/3 of the lasagna, so I split the remaining piece in 2, and froze them in case he might feel like having that again. The days when he actually eats some kind of food have become few and far between.
He's lost quite a bit of weight. I suppose it was fortunate that he had some to lose at the start of all this. He wasn't terribly overweight, but at 6'4" he was maybe 40#s or so over where he should be. Right now I'd say he's somewhere between "normal" and "thin", but he's got more chemo, then surgery followed by more chemo down the road.
At least he's still maintaining a pretty positive outlook and that's a really good thing. As for eating, whatever he mentions he feels like having, I'll make sure he gets it.
Oh, for those of you who are not familiar with "pork roll", aka "Taylor ham", it's this greasy pork, chopped and mixed with spices and shaped like a roll of bologna stuffed into a cotton casing (think spam, but not in a can). It has a very distinct flavor. It's a NJ original and has been around since the mid 1800's.
He had a craving for pork roll and cheese on a potato roll a few weeks back, so I make sure I have those in the house. He's eaten that a few times. Another day he felt like having meat lasagna, so I called the Italian restaurant down the road and got a take-out order. Of course, even when he does feel like eating that doesn't mean he's going to eat very much. He ate about 1/3 of the lasagna, so I split the remaining piece in 2, and froze them in case he might feel like having that again. The days when he actually eats some kind of food have become few and far between.
He's lost quite a bit of weight. I suppose it was fortunate that he had some to lose at the start of all this. He wasn't terribly overweight, but at 6'4" he was maybe 40#s or so over where he should be. Right now I'd say he's somewhere between "normal" and "thin", but he's got more chemo, then surgery followed by more chemo down the road.
At least he's still maintaining a pretty positive outlook and that's a really good thing. As for eating, whatever he mentions he feels like having, I'll make sure he gets it.
Oh, for those of you who are not familiar with "pork roll", aka "Taylor ham", it's this greasy pork, chopped and mixed with spices and shaped like a roll of bologna stuffed into a cotton casing (think spam, but not in a can). It has a very distinct flavor. It's a NJ original and has been around since the mid 1800's.
Tuesday, November 10, 2009
Didn't Sleep Well - November 10, 2009
Last night was a tough one. I had no problem falling asleep; I usually don't. However, I woke a little after 1 AM and tossed and turned until almost 3. Woke again a little after 4 but this time I fell back to sleep after my last look at the clock showed 4:47. When I woke at 6:10 I knew it was pointless to try to sleep any later.
I take Pete for his CT scan this afternoon, and that kept running through my head. What would we find out from the doctor on Friday? Would my son see the scan today and start worrying like he did last time?
Then there was the visit to my doctor on Monday. I've lost over 20#s, my blood glucose numbers are all within the normal range, my cholesterol numbers have fallen dramatically but still need to come down a bit more. All good news. But then the doctor told me that he's really concerned because my protein output is quite high and my thyroid is low. He's giving me 3 months to continue healthy eating, losing weight and exercising to see if either of these will normalize. As far as I know, neither had been a concern in the past.
My brain is still spinning.
I take Pete for his CT scan this afternoon, and that kept running through my head. What would we find out from the doctor on Friday? Would my son see the scan today and start worrying like he did last time?
Then there was the visit to my doctor on Monday. I've lost over 20#s, my blood glucose numbers are all within the normal range, my cholesterol numbers have fallen dramatically but still need to come down a bit more. All good news. But then the doctor told me that he's really concerned because my protein output is quite high and my thyroid is low. He's giving me 3 months to continue healthy eating, losing weight and exercising to see if either of these will normalize. As far as I know, neither had been a concern in the past.
My brain is still spinning.
Tuesday, November 3, 2009
Rescheduled - November 03, 2009
Because of the pneumonia, my son's CT scan and next chemo treatment have been rescheduled. He'll finish the antibiotics next Monday so the scan appointment is on Tuesday and the next round of chemo will begin that Friday.
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