This morning Pete picked up a copy of the CT report and it did clarify why one of the nodules was reported to have grown a tremendous amount. It seems that the tumor that increased from 6.6 x 2.4 cm to 7.7 x 6.4 cm came about when "several small nodules that were adjacent to the larger mass became confluent with it". The previous report from January identified 10 individual nodules. There are now only 6; the largest is a result of the merger of 5 into 1.
The recommendation by Dr. K (MSKCC) was to change Pete's chemo to Dacarbazine, so he had his first infusion this afternoon. Tomorrow afternoon he'll get his Nulasta shot (white blood cell booster). In 2 weeks he'll go in for blood work to check his white blood cell count, and then the next treatment will be in week 3.
This drug is listed as being "highly emetogenic", so at the end of the session, the nurse directed him to take one of the anti-nausea drugs this evening and to continue taking them for the next several days, even if he felt fine.
His first chemo treatment was Gem/Tax, the second was AIM (I'm not going to count the Rapamune, which is now discontinued) so this is the third attempt to find a treatment that will work at reducing the size of the tumors. Right now that old saying about "three's a charm" sounds pretty good to me.
Wednesday, March 31, 2010
Tuesday, March 30, 2010
CT Scan Results - March 30, 2010
The news was somewhat disheartening, but...
The doctor (Dr. W) shared the radiologist’s report of the CT scan with us. It seems the chemo has somewhat slowed the growth of the mets in his lungs, most remaining unchanged. The hope was that they would not just stop growing, but rather reduce in size. He noted that two of the approximately ten, are larger than in the previous scan, done in January after the conclusion of Pete’s radiation treatments. In one there was significant growth going from 6.6 cm x 2.4 cm to 7.7 cm x 6.4 cm. To give a clearer picture to the "metrically-challenged" among us, 2.5 in x 1 in to 3 in x 2.5 in. The second had only “marginal” increase, going from 4.5 cm x 4.5 cm to 5.6 cm x 5.3 cm (or 1.75 in x 1.75 in to 2.2 in x 2.0 in).
Because of the absence of definitive results, Dr. W recommended the chemo be suspended, including the Rapamune (Sirolimus), pending consultation with Pete’s primary oncologist at MSKCC (Dr. K). He will hopefully be able to discuss this with her sometime today so that, if she determines that Pete should continue the chemo, he’ll only shift treatment by a day, rescheduling it for tomorrow, Thursday and Friday.
Dr. W explained that Dr. K may have a clinical trial that Pete might be eligible to enter. If so, he would have to go a specified time period without treatment. He also mused about the possibility of having Pete go in for a PET scan. There seems to be some question among oncologists as to the role this type of scan plays in assessing the response of sarcoma to treatment.
I've included a link to a fairly recent document discussing PET vs CT scans:
Functional imaging proves sensitive in measuring treatment response in sarcomas
So once again, we are in the "waiting" mode. It's not one of which I am particularly fond these days.
The doctor (Dr. W) shared the radiologist’s report of the CT scan with us. It seems the chemo has somewhat slowed the growth of the mets in his lungs, most remaining unchanged. The hope was that they would not just stop growing, but rather reduce in size. He noted that two of the approximately ten, are larger than in the previous scan, done in January after the conclusion of Pete’s radiation treatments. In one there was significant growth going from 6.6 cm x 2.4 cm to 7.7 cm x 6.4 cm. To give a clearer picture to the "metrically-challenged" among us, 2.5 in x 1 in to 3 in x 2.5 in. The second had only “marginal” increase, going from 4.5 cm x 4.5 cm to 5.6 cm x 5.3 cm (or 1.75 in x 1.75 in to 2.2 in x 2.0 in).
Because of the absence of definitive results, Dr. W recommended the chemo be suspended, including the Rapamune (Sirolimus), pending consultation with Pete’s primary oncologist at MSKCC (Dr. K). He will hopefully be able to discuss this with her sometime today so that, if she determines that Pete should continue the chemo, he’ll only shift treatment by a day, rescheduling it for tomorrow, Thursday and Friday.
Dr. W explained that Dr. K may have a clinical trial that Pete might be eligible to enter. If so, he would have to go a specified time period without treatment. He also mused about the possibility of having Pete go in for a PET scan. There seems to be some question among oncologists as to the role this type of scan plays in assessing the response of sarcoma to treatment.
I've included a link to a fairly recent document discussing PET vs CT scans:
Functional imaging proves sensitive in measuring treatment response in sarcomas
So once again, we are in the "waiting" mode. It's not one of which I am particularly fond these days.
Thursday, March 25, 2010
Neurologist and Echo - March 24, 2010
After putting in a full day at work yesterday, Pete had 2 appointments scheduled for this morning. The first was with the neurologist. He said it was a good visit and that the doctor was much more pleasant this time. When he described the headaches he's been having the doctor asked him whether he grinds his teeth at night. Pete's headaches generally do seem to be at their worst in the morning and subside as the day goes on. He recommended trying a mouth guard because the way that Pete described the headaches made him think that they may be stress related and the pain similar to TMJ.
The second appointment later in the morning was for the echo-cardiogram to be done at our local hospital. Ifosfomide, the "I" of the AIM chemo-cocktail, can damage the heart muscle so patients undergoing this drug therapy must be monitored regularly. From there he went directly to work.
The next big event will be Tuesday. When he goes in to start the next round of chemo on the 30th the oncologist will have the report on the CT scan. Pete did mention just yesterday that the pain he was having in the area beneath his shoulder blade has eased recently. That may be an indication that the lesions in his lungs are shrinking and that's exactly the news we'll be hoping to hear next week.
The power of positive thinking...
The second appointment later in the morning was for the echo-cardiogram to be done at our local hospital. Ifosfomide, the "I" of the AIM chemo-cocktail, can damage the heart muscle so patients undergoing this drug therapy must be monitored regularly. From there he went directly to work.
The next big event will be Tuesday. When he goes in to start the next round of chemo on the 30th the oncologist will have the report on the CT scan. Pete did mention just yesterday that the pain he was having in the area beneath his shoulder blade has eased recently. That may be an indication that the lesions in his lungs are shrinking and that's exactly the news we'll be hoping to hear next week.
The power of positive thinking...
Tuesday, March 23, 2010
Neurosurgeon Appointment & CT Scan - March 22 & 23, 2010
Yesterday I went with Pete to his appointment with Dr. E, the neurosurgeon. He wasn't happy to have me tagging along, but I'm glad I went even though he pretty much gave me the silent treatment to show his displeasure. I can understand his reluctance on one level, and my intention is certainly not to make him feel that he is incapable of doing things or taking care of himself. I just believe that it is in his, and my, best interest to be his "co-pilot" on this journey; to be a second pair of ears and to help him ask questions, not because he can't do these things himself, but because sometimes your mind takes you in one direction, while missing what may be in another. I am there to support him, as well as for my own peace of mind.
We sat in the waiting room for some time before getting called in to see the doctor. Sitting was very uncomfortable for Pete as he has had a flare up of his lower back problems. He's suffered with pain (herniated disks) that radiates down one or both legs for several years, and sitting for any length of time can quickly become excruciatingly uncomfortable for him.
When we were finally called in Dr. E went through the films and put a couple of them to the viewing light. He pointed out the area where the first tumor was removed and noted a small white spot that he said was most likely scar tissue from the surgery and he began to take the films down. That caused a bit of confusion as that tumor was on the left side and the spot that had been indicated on the report said it was on the right, so we questioned him about that. He looked at the films, then went to the report and re-read it, and sure enough, it did identify a small spot on the right. Back to the films, he shuffled them around, put 2 more up and studied them. Finally he pointed out a very small white spot, barely visible on the right side (left side of the film image since everything is reversed) and said that it might be this that they were referring to as he couldn't find any other spot.
The fact that he had difficulty finding the spot that the radiologist had mentioned in the report actually made me feel a bit better. For one thing, it confirmed the fact that it is indeed very minute, so it may be the "blood vessel on end" as the Dr. W2 (radiation oncologist) mentioned. The other is that, though Dr. E (neurosurgeon) had to take a second look to find what was identified in the report, the radiologist, the specialist in reading and interpreting films, did make note of it as something to be monitored closely with another follow-up MRI.
This morning Pete had a Contrast-cocktail to drink at 7 AM and another at 9 before his CT scan scheduled for 10. This is to check the status of his lung mets/chest/pelvis/etc. The actual results/report will be presented by Dr. W (hematology oncologist) when he goes in for the next round of chemo this coming Tues, Wed & Thurs.
He's scheduled to work tomorrow after an early morning appointment with the neurologist. If he ever does need to see a neurologist after this, he will seek out a different doctor. Considering all the doctors he has visited in the past year or so, this is the only one with whom Pete had not been pleased, as mentioned before.
We sat in the waiting room for some time before getting called in to see the doctor. Sitting was very uncomfortable for Pete as he has had a flare up of his lower back problems. He's suffered with pain (herniated disks) that radiates down one or both legs for several years, and sitting for any length of time can quickly become excruciatingly uncomfortable for him.
When we were finally called in Dr. E went through the films and put a couple of them to the viewing light. He pointed out the area where the first tumor was removed and noted a small white spot that he said was most likely scar tissue from the surgery and he began to take the films down. That caused a bit of confusion as that tumor was on the left side and the spot that had been indicated on the report said it was on the right, so we questioned him about that. He looked at the films, then went to the report and re-read it, and sure enough, it did identify a small spot on the right. Back to the films, he shuffled them around, put 2 more up and studied them. Finally he pointed out a very small white spot, barely visible on the right side (left side of the film image since everything is reversed) and said that it might be this that they were referring to as he couldn't find any other spot.
The fact that he had difficulty finding the spot that the radiologist had mentioned in the report actually made me feel a bit better. For one thing, it confirmed the fact that it is indeed very minute, so it may be the "blood vessel on end" as the Dr. W2 (radiation oncologist) mentioned. The other is that, though Dr. E (neurosurgeon) had to take a second look to find what was identified in the report, the radiologist, the specialist in reading and interpreting films, did make note of it as something to be monitored closely with another follow-up MRI.
This morning Pete had a Contrast-cocktail to drink at 7 AM and another at 9 before his CT scan scheduled for 10. This is to check the status of his lung mets/chest/pelvis/etc. The actual results/report will be presented by Dr. W (hematology oncologist) when he goes in for the next round of chemo this coming Tues, Wed & Thurs.
He's scheduled to work tomorrow after an early morning appointment with the neurologist. If he ever does need to see a neurologist after this, he will seek out a different doctor. Considering all the doctors he has visited in the past year or so, this is the only one with whom Pete had not been pleased, as mentioned before.
Wednesday, March 17, 2010
Results of Brain MRI - March 17, 2010
Well, we got the brain MRI results today. There's a 3 mm spot in the right occiptal region, but at this time it's too small to be able to accurately identify. Dr. W2 said there is a possibility that it is simply a blood vessel on end. He said he'll be faxing a copy of the report to the neurosurgeon and consult with him within the next week or so. He gave us a lot of scenarios that began with "if".
He said he wanted Pete to have a follow-up MRI in about 2 months. If at that time it's unchanged they'll most likely just continue to monitor it closely. If it grows, however, then he, together with the neurosurgeon (Dr. E) and the hematology oncologist (Dr. W), will decide, based on size and location, on a recommended response. If it remains relatively small (5-6 mm) he would probably recommend radiosurgery (gamma knife) as it is located some distance away from the site that was previously radiated. He gave us the script for the MRI, scheduled that for May 12 and made an appointment with him to get those results May 19.
After going upstairs and picking up the MRI films to take to next week's appointment with the neurosurgeon (Dr. E) we went to Dr. W (hematology oncologist) to get a script for an echo cardiogram. He needs to have one periodically as one of the chemotherapy drugs can damage the left ventrical so they monitor heart function very closely.
We'll be going out to dinner this evening. It is St. Patty's day, afterall, and Bruce wants his once-a-year corned beef and cabbage. Pete said he could go for a reuben sandwich. I'll stick with a salad.
He said he wanted Pete to have a follow-up MRI in about 2 months. If at that time it's unchanged they'll most likely just continue to monitor it closely. If it grows, however, then he, together with the neurosurgeon (Dr. E) and the hematology oncologist (Dr. W), will decide, based on size and location, on a recommended response. If it remains relatively small (5-6 mm) he would probably recommend radiosurgery (gamma knife) as it is located some distance away from the site that was previously radiated. He gave us the script for the MRI, scheduled that for May 12 and made an appointment with him to get those results May 19.
After going upstairs and picking up the MRI films to take to next week's appointment with the neurosurgeon (Dr. E) we went to Dr. W (hematology oncologist) to get a script for an echo cardiogram. He needs to have one periodically as one of the chemotherapy drugs can damage the left ventrical so they monitor heart function very closely.
We'll be going out to dinner this evening. It is St. Patty's day, afterall, and Bruce wants his once-a-year corned beef and cabbage. Pete said he could go for a reuben sandwich. I'll stick with a salad.
Monday, March 15, 2010
Back to Work and "Pete's Mask" - March 15, 2010
Pete went in to work today. The rest of his schedule includes tomorrow (Tuesday), Thursday, Friday and Saturday. Wednesday he'll be off and we'll be going to the radiology oncologist to get the results of his latest brain MRI and he'll also have his CT scan to assess his lung mets. I don't know when we'll be getting those results, but we'll have to see the medical (chemo) oncologists for them.
Speaking of his brain MRI and going back to his radiation therapy, I finally got around to taking some pictures of Pete's "mask" that I had mentioned in a previous blog (2 Down, 3 to Go - Friday, Jan 22, 2010).
It was made by taking a flat, U-shaped frame that surrounded what appeared to be plastic material full of holes. Reminded me of a tennis racket, but the holes were smaller. The device was heated, placed over Pete's face, and the technician pushed down on the frame clamping it to the table Pete's head was resting on. As it cooled it hardened. It conformed very tightly to Pete's facial features and though it's quite thin and light, the material is very strong and rigid.
Speaking of his brain MRI and going back to his radiation therapy, I finally got around to taking some pictures of Pete's "mask" that I had mentioned in a previous blog (2 Down, 3 to Go - Friday, Jan 22, 2010).
It was made by taking a flat, U-shaped frame that surrounded what appeared to be plastic material full of holes. Reminded me of a tennis racket, but the holes were smaller. The device was heated, placed over Pete's face, and the technician pushed down on the frame clamping it to the table Pete's head was resting on. As it cooled it hardened. It conformed very tightly to Pete's facial features and though it's quite thin and light, the material is very strong and rigid.
Saturday, March 13, 2010
2 + 1 Days of Chemo - March 13, 2010
Pete put in a full day of work on Monday. The plan was to have chemo Tuesday, Wednesday and Thursday, rest on Friday and work again on Saturday. Well, as so often happens, the best laid plans...
Things seemed to go smoothly Tuesday and Wednesday, though at the end of each day he was exhausted. His father drove him to the oncologists' office and I picked him up. Both days he slept much of the drive home and he went immediately to bed when we got home. I woke him up several times and encouraged him to drink water, and of course to take his post-chemo meds, but he had no appetite for any food. He did manage to get down a bottle of Ensure, but nothing else.
His father drove him up on Wednesday for the 3rd treatment, but a little after 10 he texted me to ask if I could come up and take him to the hospital. It seemed that they could not get a blood return from his port. (description of a port: en.wikipedia.org/wiki/Port_(medical) )
One of the chemo drugs that Pete is taking must be administered very carefully directly into the vein. If any leaks out around the injection site and contacts any tissue outside the vein it is very caustic and will damage that tissue (skin, muscle, etc). Before starting the infusion, the nurse must make certain that the pathway to the vein is clear, so she connects a syringe and draws back on it and if there is blood return, then the treatment proceeds.
Well, on Thursday morning it happened there was no blood return. The nurse tried the prescribed remedies but to no avail, so I drove up and took him to the hospital where they would do tests and scans to determine what the problem was and fix it.
We arrived at the hospital a little after 11 AM. Pete underwent several different tests and scans. One of the concerns is always thrombosis (blood clot) and they had to rule that out as well as get the port cleared. Pete was given an "ok" and after a dose of blood thinner and a bit of extra suction, they were finally able to get a blood return. By this time it was 5 PM, so day 3 of chemo was rescheduled for Friday.
Pete was pretty much wiped out by the time we got home. He did have a bottle of Ensure later that evening before taking his post-chemo med. He was also able to drink one for breakfast before we headed back up to complete the chemo regimen. I waited around for a while to make certain all was well before I headed back home. I returned in the late afternoon to pick him up. It was another long day for him. He had called his work to tell them that he would not be able to come in today (Saturday) as scheduled.
During the night and into this morning he experienced some of the "crawling" skin discomfort that I've heard/read about that can be one of the side effects of chemo. He actually was able to eat about 3/4 of an English muffin for breakfast. A little later today he'll get his Nulasta shot.
It was a rough week. The weather is rainy with terrible wind gusts and warnings of flooding so it's a good day to stay inside, relax and recover.
Things seemed to go smoothly Tuesday and Wednesday, though at the end of each day he was exhausted. His father drove him to the oncologists' office and I picked him up. Both days he slept much of the drive home and he went immediately to bed when we got home. I woke him up several times and encouraged him to drink water, and of course to take his post-chemo meds, but he had no appetite for any food. He did manage to get down a bottle of Ensure, but nothing else.
His father drove him up on Wednesday for the 3rd treatment, but a little after 10 he texted me to ask if I could come up and take him to the hospital. It seemed that they could not get a blood return from his port. (description of a port: en.wikipedia.org/wiki/Port_(medical) )
One of the chemo drugs that Pete is taking must be administered very carefully directly into the vein. If any leaks out around the injection site and contacts any tissue outside the vein it is very caustic and will damage that tissue (skin, muscle, etc). Before starting the infusion, the nurse must make certain that the pathway to the vein is clear, so she connects a syringe and draws back on it and if there is blood return, then the treatment proceeds.
Well, on Thursday morning it happened there was no blood return. The nurse tried the prescribed remedies but to no avail, so I drove up and took him to the hospital where they would do tests and scans to determine what the problem was and fix it.
We arrived at the hospital a little after 11 AM. Pete underwent several different tests and scans. One of the concerns is always thrombosis (blood clot) and they had to rule that out as well as get the port cleared. Pete was given an "ok" and after a dose of blood thinner and a bit of extra suction, they were finally able to get a blood return. By this time it was 5 PM, so day 3 of chemo was rescheduled for Friday.
Pete was pretty much wiped out by the time we got home. He did have a bottle of Ensure later that evening before taking his post-chemo med. He was also able to drink one for breakfast before we headed back up to complete the chemo regimen. I waited around for a while to make certain all was well before I headed back home. I returned in the late afternoon to pick him up. It was another long day for him. He had called his work to tell them that he would not be able to come in today (Saturday) as scheduled.
During the night and into this morning he experienced some of the "crawling" skin discomfort that I've heard/read about that can be one of the side effects of chemo. He actually was able to eat about 3/4 of an English muffin for breakfast. A little later today he'll get his Nulasta shot.
It was a rough week. The weather is rainy with terrible wind gusts and warnings of flooding so it's a good day to stay inside, relax and recover.
Wednesday, March 3, 2010
Back to Work - March 03, 2010
Pete went back to work on Monday (3/1). He's still taking the daily oral chemo, of course, and is scheduled for infusion Tues, Wed and Thurs next week. He set up his work schedule so that 2 of those days will be his non-work days and 2 will be vacation days. He needs that full day after 3rd day of chemo to recover.
He's done 2 full days of work and so far things seem to be going pretty well. He had a fierce headache Monday morning when he woke up, but took some meds and it eased enough by the time he had to leave for work. I wonder if it could have been triggered by the stress of going back to work.
He'll work today and tomorrow then he'll be off Friday because he has an MRI of his head scheduled, and then finish up the 5th day of work on Saturday. Putting in a 40 hr week of work after all that he's been through in the past several months will be a milestone for him.
With all that he's dealing with, why did he go back to work? To maintain his insurance coverage. He just got the EOB on his radiation treatments a few weeks ago. Over $90,000!
He's done 2 full days of work and so far things seem to be going pretty well. He had a fierce headache Monday morning when he woke up, but took some meds and it eased enough by the time he had to leave for work. I wonder if it could have been triggered by the stress of going back to work.
He'll work today and tomorrow then he'll be off Friday because he has an MRI of his head scheduled, and then finish up the 5th day of work on Saturday. Putting in a 40 hr week of work after all that he's been through in the past several months will be a milestone for him.
With all that he's dealing with, why did he go back to work? To maintain his insurance coverage. He just got the EOB on his radiation treatments a few weeks ago. Over $90,000!
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