Pete went for the MRI of one leg on Friday around noon. He said that they had to do a bit of improvising to get the scan of his entire leg bone because he is too tall for it to be done the normal way. They wound up using the full body machine, otherwise they would not have been able to get both ends of the bone in the scan as Dr R had ordered.
Pete asked the reason for doing only one scan per day and the response was that is how the insurance company sets up the approval. They will only cover 1 scan per day.
The techs at the imaging facility provide Pete with a CD of the scans and it's ready before he walks out the door. He came out into the kitchen this morning and told me that his leg had been bothering him so he viewed the scan on his computer. He said that he could clearly see the spot near his knee, and that it appears to be about the size of the original tumor that had been removed from his arm 19 months ago. He also said that he could feel the mass, but as is so common with sarcoma, it's hard to detect unless you have some clue that something is there.
It's only Monday, but it seems as though Friday was a long time ago. Today's scan was scheduled for 5 PM so we spent the day gathering up all kinds of metal to take to the scrap yard. We finally made our run over there around 3:30 and were home in time for Pete to shower and relax a bit before he went over to the imaging facilty.
Tomorrow morning he goes for the scan of his other leg. That appointment is for 8:30, and the appointment with Dr W, his local medical oncologist, is at 3:30. The pain management doctor he saw last week said he would speak with Dr W about his recommendation for the fentanyl pain patch because he felt that it would be best to keep all prescriptions under one doctor. I'm going to assume that Dr W will give him that prescription tomorrow.
As far as I know, there is nothing on the agenda for Wednesday. Thursday, though, is our trip back into Manhattan to meet again with Dr R. I wonder if the next two days will seem to pass as slowly as the last two did?
Monday, August 30, 2010
Wednesday, August 25, 2010
A Fresh Beginning - Part 3 - August 25, 2010
Pete has a busy schedule over the next several days. He has 3 MRIs scheduled, each on a different day. We don't know why they're only doing 1 per day. Perhaps it has something to do with the amount of time it takes to do just one MRI, maybe the contrast they inject is localized for too short a time? Scan of one leg is scheduled for Friday, the brain MRI will be done on Monday and then the other leg will be done on Tuesday. He has an appointment with his local oncologist on Tuesday afternoon. He can pick up the slides of the brain tumor biopsy from MMC any day after Friday. MSKCC said they would deliver the slides from the original tumor directly to Dr. R sometime in the next four or five days. Hopefully they'll get to him by the time the next appointment with him comes around which will be a week from tomorrow, September 2.
A Fresh Beginning - Part 2 - August 25, 2010
Pete went to his appointment with the pain management doctor this morning. He suggested a pain patch and some changes to some of the oral meds Pete's been on. He said that the patch is worn for 3 days and may provide more constant relief, particularly when combined with the other changes in meds.
While he was at that doctor's he received a call from Dr. R's office. The doctor had told us yesterday that he was only going to look over the upper body portion of the PET/CT scan while we were there because his areas of most concern were the original resection site (left arm) and the sites of metastasis (brain and lungs). He assured us that he would examine the lower portion of the whole body scan and apparently that was what the call was about.
He said that he found some areas of concern in Pete's legs, and would give Pete a prescription for additional scans of his lower body to provide a better picture of those areas. Yesterday he had given Pete a prescription for a brain MRI and will contact the facility to include this new scan prescription.
What he saw in Pete's legs may prove to be nothing and I'm saying prayers and keeping my fingers crossed that's exactly what it is - nothing. It is certainly better to check everything out and I'm glad that Dr. R is being so proactive.
Pete faxed over the request for the biopsy slides to MSKCC a short time ago and made a call for an appointment with his local medical oncologist, Dr. W, to get him up to speed with all these new plans. He also put in a request for Dr. R's office to send any reports to Dr. W.
At this moment it seems like things are moving at breakneck speed and yet, at the same time, they seem to be almost standing still. It's all very surreal.
While he was at that doctor's he received a call from Dr. R's office. The doctor had told us yesterday that he was only going to look over the upper body portion of the PET/CT scan while we were there because his areas of most concern were the original resection site (left arm) and the sites of metastasis (brain and lungs). He assured us that he would examine the lower portion of the whole body scan and apparently that was what the call was about.
He said that he found some areas of concern in Pete's legs, and would give Pete a prescription for additional scans of his lower body to provide a better picture of those areas. Yesterday he had given Pete a prescription for a brain MRI and will contact the facility to include this new scan prescription.
What he saw in Pete's legs may prove to be nothing and I'm saying prayers and keeping my fingers crossed that's exactly what it is - nothing. It is certainly better to check everything out and I'm glad that Dr. R is being so proactive.
Pete faxed over the request for the biopsy slides to MSKCC a short time ago and made a call for an appointment with his local medical oncologist, Dr. W, to get him up to speed with all these new plans. He also put in a request for Dr. R's office to send any reports to Dr. W.
At this moment it seems like things are moving at breakneck speed and yet, at the same time, they seem to be almost standing still. It's all very surreal.
A Fresh Beginning- Part 1 - August 25, 2010
Yesterday marked what seems to be a new beginning in Pete's battle against sarcoma.
Monday afternoon he received a call from Dr. R's office. Pete had notified them that he had obtained the slides of his initial biopsy as they had requested. True to their word, they responded almost immediately with an appointment time of 9 AM Tuesday morning.
We were up and on the road just shortly after 6. There was a report of problems with commuter trains on the LIRR and that this may result in heavy traffic delays as people turned to their cars to make the trip to work and not chance having to face train rerouting problems. As it turned out, our drive into the city went smoothly.
Dr. R had been affiliated with St. Vincent Cancer Center until the hospital abruptly closed in April. Many of the physicians and services were transferred to Beth Israel Hospital, so that's were we were headed. The drive up was much easier than going to MSKCC. This trip was done with Mapquest directions in hand. We exited the NJ Tpk at Exit 14, through the Holland Tunnel, and only had to navigate about 2 miles of Manhattan streets. We arrived at our destination around 7:45, well ahead of the appointment time.
Pete announced himself at the concierge desk and despite the early arrival, he was taken in for blood work. That completed, he had barely seated himself in the waiting area when we were escorted to Radiology. He had been instructed to fast in preparation for a possible CT scan, but after responding to a few questions posed by the receptionist, a call was placed to Dr. R. Within minutes, Dr. R's Physician Assistant came in, introduced herself, and spoke with us briefly, and then told us she would be back after she had spoken with Dr. R.
Minutes later she returned with Dr. R and the two of them escorted us to Dr. R's office, chatting comfortably about more than just medical issues and putting both Pete and I at total ease. I didn't look at the time, but I would guess that it wasn't much later than about 8:15 or so.
After talking with Pete and I, posing questions about Pete's medical history and making copious notes, Dr. R pulled up the scans that Pete had brought, one after the other. He encouraged Pete and I to view them along with him as he scrolled through, pointing out tumors, blood vessels, muscles and explaining concerns about locations and treatments. He was so unlike the doctors at MSKCC, where I had felt a mere observer. Dr. R's approach encouraged us to become active participants in Pete's healthcare.
Pete had brought slides of the initial core needle biopsy performed in December 2008. Dr. R placed each slide under the microscope and explained what he saw. Unfortunately, he did not feel that these slides were adequate for him to provide a thorough assessment and directed Pete to secure slides of the original tumor resected from his arm by Dr. S at MSKCC in January 2009. He shared his concern about one of the margins noted in the surgical report as being insufficient. It was listed as 0.1 cm when conventional surgical wisdom recommends a considerably wider margin.
He did a physical exam of Pete and sent us into an examining room where a nurse came and recorded Pete's vitals. He changed the originally expected CT scan to a PET/CT and were told we would meet with Dr. R to go over the results following its completion. It was about 10:30 when we left his office giving us about an hour and half until the scan appointment time of 12 noon.
They were prompt about taking Pete in for the scan which lasted until about 2 :30. We walked back to Dr. R's office and after a brief wait were called in to meet with him once more. Again, he invited both of us to view the results of this scan, pointing out areas he was most interested in checking, and explaining and interpreting what we were looking at on the screen.
In closing, he shared his treatment plan for Pete based on the information he had, but cautioned that he may modify certain parts following a re-examination of the scans and after he has the opportunity to view the slides of the actual tumor biopsy which Pete will get from MSKCC.
So what does Dr. R recommend? For one, he feels the close margin of the original resection presents increased possibility for recurrence at the site. He would have recommended post-operative radiation immediately following surgery, but assured us that radiation performed on the site at this time will offer some protection against recurrence. The large tumor in his upper left lung, the one that is causing the pain, would also receive radiation along with high dose chemo, most likely Ifosfomide with the possible addition of another agent, to encourage tumor shrinkage, followed by surgical removal and recommended a thoracic surgeon with whom he has worked closely. He advised that the surgery will probably require the removal of 2-3 ribs to be replaced by a plastic mesh, but more on that later.
He is taking an aggressive approach in this battle and though he is not promising it will be easy, it does give more hope than the doctor at MSKCC seemed to be offering.
Monday afternoon he received a call from Dr. R's office. Pete had notified them that he had obtained the slides of his initial biopsy as they had requested. True to their word, they responded almost immediately with an appointment time of 9 AM Tuesday morning.
We were up and on the road just shortly after 6. There was a report of problems with commuter trains on the LIRR and that this may result in heavy traffic delays as people turned to their cars to make the trip to work and not chance having to face train rerouting problems. As it turned out, our drive into the city went smoothly.
Dr. R had been affiliated with St. Vincent Cancer Center until the hospital abruptly closed in April. Many of the physicians and services were transferred to Beth Israel Hospital, so that's were we were headed. The drive up was much easier than going to MSKCC. This trip was done with Mapquest directions in hand. We exited the NJ Tpk at Exit 14, through the Holland Tunnel, and only had to navigate about 2 miles of Manhattan streets. We arrived at our destination around 7:45, well ahead of the appointment time.
Pete announced himself at the concierge desk and despite the early arrival, he was taken in for blood work. That completed, he had barely seated himself in the waiting area when we were escorted to Radiology. He had been instructed to fast in preparation for a possible CT scan, but after responding to a few questions posed by the receptionist, a call was placed to Dr. R. Within minutes, Dr. R's Physician Assistant came in, introduced herself, and spoke with us briefly, and then told us she would be back after she had spoken with Dr. R.
Minutes later she returned with Dr. R and the two of them escorted us to Dr. R's office, chatting comfortably about more than just medical issues and putting both Pete and I at total ease. I didn't look at the time, but I would guess that it wasn't much later than about 8:15 or so.
After talking with Pete and I, posing questions about Pete's medical history and making copious notes, Dr. R pulled up the scans that Pete had brought, one after the other. He encouraged Pete and I to view them along with him as he scrolled through, pointing out tumors, blood vessels, muscles and explaining concerns about locations and treatments. He was so unlike the doctors at MSKCC, where I had felt a mere observer. Dr. R's approach encouraged us to become active participants in Pete's healthcare.
Pete had brought slides of the initial core needle biopsy performed in December 2008. Dr. R placed each slide under the microscope and explained what he saw. Unfortunately, he did not feel that these slides were adequate for him to provide a thorough assessment and directed Pete to secure slides of the original tumor resected from his arm by Dr. S at MSKCC in January 2009. He shared his concern about one of the margins noted in the surgical report as being insufficient. It was listed as 0.1 cm when conventional surgical wisdom recommends a considerably wider margin.
He did a physical exam of Pete and sent us into an examining room where a nurse came and recorded Pete's vitals. He changed the originally expected CT scan to a PET/CT and were told we would meet with Dr. R to go over the results following its completion. It was about 10:30 when we left his office giving us about an hour and half until the scan appointment time of 12 noon.
They were prompt about taking Pete in for the scan which lasted until about 2 :30. We walked back to Dr. R's office and after a brief wait were called in to meet with him once more. Again, he invited both of us to view the results of this scan, pointing out areas he was most interested in checking, and explaining and interpreting what we were looking at on the screen.
In closing, he shared his treatment plan for Pete based on the information he had, but cautioned that he may modify certain parts following a re-examination of the scans and after he has the opportunity to view the slides of the actual tumor biopsy which Pete will get from MSKCC.
So what does Dr. R recommend? For one, he feels the close margin of the original resection presents increased possibility for recurrence at the site. He would have recommended post-operative radiation immediately following surgery, but assured us that radiation performed on the site at this time will offer some protection against recurrence. The large tumor in his upper left lung, the one that is causing the pain, would also receive radiation along with high dose chemo, most likely Ifosfomide with the possible addition of another agent, to encourage tumor shrinkage, followed by surgical removal and recommended a thoracic surgeon with whom he has worked closely. He advised that the surgery will probably require the removal of 2-3 ribs to be replaced by a plastic mesh, but more on that later.
He is taking an aggressive approach in this battle and though he is not promising it will be easy, it does give more hope than the doctor at MSKCC seemed to be offering.
Friday, August 20, 2010
Add the Doxil, Change the Routine - August 18-20, 2010
Pete went in on Wednesday for his first infusion of the Dacarbazine (DTIC) and Doxil combination. We met with Dr. W beforehand and he again went over some of the possible side effects of the Doxil, the most common of which is hand-food syndrome. He explained that the skin of the hands and feet may crack and/or blister and that the recommended remedy is to start applying moisturizer before there are any signs of a problem. While Pete was being infused I visited a friend of mine who lives in the next town and we went out for a bite to eat and caught up on things over a few cups of coffee; then I went back to wait for Pete to finish up.
I was standing in the waiting room while Pete was setting up his next appointment when the phlebotomist walked by and said, "Will you be here with him again tomorrow?". It caught me off guard, so I just answered, "I don't know." When we got in the elevator, Pete told me that he would be having two more days of infusion. He didn't seem really happy about this and I know it came as a surprise to me.
Thursday's appointment was scheduled for 1 PM, and Pete said he would go up by himself and that he was feeling pretty good, except for the pain in his scapula/chest areas. Bruce and I had to run some errands, so left shortly after Pete walked out the door to go to his appointment. A few hours later I got a strange text from Pete, asking where we were. It was strange because the only way he would know we weren't at home would be if he called our landline, which he never does, or he was home.
It turned out he was home. Once again there was a problem with getting a blood return on his port (see "2+1 Days of Chemo" - March 13, 2010). As a result, he had an appointment for Friday at 7:30 AM at one of the local hospitals to have the port cleared, then over to Dr. W's office for the second infusion, and that's exactly what he did today.
Since Dr. W's office does not have hours on Saturday, he'll be going back to the hospital tomorrow, to the day-stay area, for the third infusion.
I was standing in the waiting room while Pete was setting up his next appointment when the phlebotomist walked by and said, "Will you be here with him again tomorrow?". It caught me off guard, so I just answered, "I don't know." When we got in the elevator, Pete told me that he would be having two more days of infusion. He didn't seem really happy about this and I know it came as a surprise to me.
Thursday's appointment was scheduled for 1 PM, and Pete said he would go up by himself and that he was feeling pretty good, except for the pain in his scapula/chest areas. Bruce and I had to run some errands, so left shortly after Pete walked out the door to go to his appointment. A few hours later I got a strange text from Pete, asking where we were. It was strange because the only way he would know we weren't at home would be if he called our landline, which he never does, or he was home.
It turned out he was home. Once again there was a problem with getting a blood return on his port (see "2+1 Days of Chemo" - March 13, 2010). As a result, he had an appointment for Friday at 7:30 AM at one of the local hospitals to have the port cleared, then over to Dr. W's office for the second infusion, and that's exactly what he did today.
Since Dr. W's office does not have hours on Saturday, he'll be going back to the hospital tomorrow, to the day-stay area, for the third infusion.
Wednesday, August 11, 2010
Moving Forward With More To Do - August 11, 2010
Pete had a rough night last night. He said the pain made sleep difficult, but this morning he's doing better and so has been making calls, sending faxes and is now picking up the DVDs of his CT scans and dropping off paperwork to his employer.
Chemo is scheduled for next Wednesday. He made an appointment with a pain management specialist. I think he said it was for the following week, but I'm not certain about the actual date.
He made a call to the sarcoma specialist, Dr. R, at Beth Israel CC for a second opinion. They told him as soon as he has the results/report of the biopsy of his original tumor from MSKCC he can make an appointment for the next day.
We sent an email to the cryoablation specialist, Dr. L, in Detroit to find out what additional information needs to be submitted along with the CT scans for assessment to determine if Pete is a candidate for the proceedure.
Not wanting to leave any stone unturned, we'll make copies of the CT DVDs and send out to the RFA specialist in north Jersey, and also to a radiation oncologist, but I don't know if he has a specific doctor picked out. I don't know if the radiation oncologist who treated him after the brain tumor was removed is the one he'll choose to go to.
Moving forward sure feels better than going backward or standing still.
Chemo is scheduled for next Wednesday. He made an appointment with a pain management specialist. I think he said it was for the following week, but I'm not certain about the actual date.
He made a call to the sarcoma specialist, Dr. R, at Beth Israel CC for a second opinion. They told him as soon as he has the results/report of the biopsy of his original tumor from MSKCC he can make an appointment for the next day.
We sent an email to the cryoablation specialist, Dr. L, in Detroit to find out what additional information needs to be submitted along with the CT scans for assessment to determine if Pete is a candidate for the proceedure.
Not wanting to leave any stone unturned, we'll make copies of the CT DVDs and send out to the RFA specialist in north Jersey, and also to a radiation oncologist, but I don't know if he has a specific doctor picked out. I don't know if the radiation oncologist who treated him after the brain tumor was removed is the one he'll choose to go to.
Moving forward sure feels better than going backward or standing still.
Tuesday, August 10, 2010
Deep Breath, Then Back to Taking One Day at a Time - August 10, 2010
The appointment with Dr. W was for 1:45 today. Pete had decided that it would be prudent to resume the DTIC, but administer Doxil along with it, so that was one of the first things that was discussed. Dr. W felt that this was a reasonable thing to do because multiple agents are generally more effective than a single agent, which is something I had read in much of the research that I had done.
Pete and I asked questions of Dr. W and he graciously, patiently and thoroughly explained every one and then asked us if we understood or had any additional questions. He epitomizes, in my opinion, the way every physician should treat a patient.
I had made a list of chemo drugs, some approved by the FDA for treatment of various cancers, but not sarcoma and others are "investigational" drugs. However, all were suggestioned by people in various sarcoma and other cancer communities as having shown, in some instances, to be effective in reducing or stabilizing soft tissue sarcoma.
Those that are FDA approved can be prescribed by a physician for treatment of sarcoma, but the problem arises if the insurance company refuses to pay for them because they're not approved specifically for sarcoma.
Those that are "investigational" drugs are in clinical trials. They have not yet been approved by the FDA for use in the treatment of any cancer. However, if the drug, in the course of the clinical trial, shows that it may be an effective treatment, a doctor may petition that it be provided to a patient for whom all existing therapies have failed. This would allow the drug to be provided for compassionate use. It's not an easy thing to do; it takes quite a bit of time, a whole lot of paperwork and it can be very frustrating. And since the drug is still in trials, it has not yet been documented how well it works, or if it works at all. How to pay for the drugs, if they are approved for compassionate use, is a whole other story.
Along with my "chemo list" I had come prepared with a series of other questions. One of them involved Doxil, the drug that is going to be combined with the DTIC. Doxil is a derivative of Adriamycin (aka Doxorubicin). Adriamycin is cardiotoxic, meaning it damages the heart muscle, and therefore has a lifetime maximum dose. Doxil apparently has a less toxic effect on the heart, but Dr. W did say that Pete will have to have periodic echocardiograms or mugascans to check on heart function.
The bottom line is that Pete has an appointment next Wednesday, August 18, for his first infusion of the DTIC + Doxil combination. He'll have to have an echocardiogram done before then.
That's about it for now.
Pete and I asked questions of Dr. W and he graciously, patiently and thoroughly explained every one and then asked us if we understood or had any additional questions. He epitomizes, in my opinion, the way every physician should treat a patient.
I had made a list of chemo drugs, some approved by the FDA for treatment of various cancers, but not sarcoma and others are "investigational" drugs. However, all were suggestioned by people in various sarcoma and other cancer communities as having shown, in some instances, to be effective in reducing or stabilizing soft tissue sarcoma.
Those that are FDA approved can be prescribed by a physician for treatment of sarcoma, but the problem arises if the insurance company refuses to pay for them because they're not approved specifically for sarcoma.
Those that are "investigational" drugs are in clinical trials. They have not yet been approved by the FDA for use in the treatment of any cancer. However, if the drug, in the course of the clinical trial, shows that it may be an effective treatment, a doctor may petition that it be provided to a patient for whom all existing therapies have failed. This would allow the drug to be provided for compassionate use. It's not an easy thing to do; it takes quite a bit of time, a whole lot of paperwork and it can be very frustrating. And since the drug is still in trials, it has not yet been documented how well it works, or if it works at all. How to pay for the drugs, if they are approved for compassionate use, is a whole other story.
Along with my "chemo list" I had come prepared with a series of other questions. One of them involved Doxil, the drug that is going to be combined with the DTIC. Doxil is a derivative of Adriamycin (aka Doxorubicin). Adriamycin is cardiotoxic, meaning it damages the heart muscle, and therefore has a lifetime maximum dose. Doxil apparently has a less toxic effect on the heart, but Dr. W did say that Pete will have to have periodic echocardiograms or mugascans to check on heart function.
The bottom line is that Pete has an appointment next Wednesday, August 18, for his first infusion of the DTIC + Doxil combination. He'll have to have an echocardiogram done before then.
That's about it for now.
Saturday, August 7, 2010
Dropped in the Middle of the Ocean - August 7, 2010
My son and I travelled to Manhattan for his appointment with his oncologist, Dr. K at MSKCC. It was a somber meeting in light of his latest CT report, so here's a synopsis:
The first line of chemo, Gem/Tax, failed. The second line, AIM, also failed. The third, DTIC, was effective in shrinking all lung mets initially, but after four more rounds the second scan showed mixed results. That's all they have. There are no other meds, no other chemos, that have been shown to be effective against sarcomas.
So what happens now? Maybe a clinical trial? The doctor gave us the names of 2 doctors, one in Newark, NJ, at the University of Medicine and Dentistry, and a second in San Antonio, TX. Both are involved in clinical trials for various cancers including sarcomas. She suggested we contact both and see if Pete would be eligible for any open trials. She also told Pete that she would give him some "informed consent" forms to read through, in case he would like to be included in a Phase I trial at MSKCC. (I'll get to THAT a little later.)
I asked the doctor about the research I had done and showed her the list of drugs/trials I had found. Going down the list, she pointed out that Pete would not be considered a candidate for one reason or another. The exclusions were that he had brain mets, he had already been on a chemo that is in the same class as the one being tested, he has the wrong kind of sarcoma, etc.
She mentioned briefly that since he did have that positive response to DTIC, which is a single agent, it can be administered along with an additional drug, in this case Doxil, a derivative of doxorubicin. It seems that introducing a second agent sometimes kicks things back into motion.
So where does that leave us? I have to admit that I felt as though Pete and I had been dropped into the middle of a vast, empty ocean.
By the time we got home it was too late in the evening to place any calls, and we did not have time nor the energy to recover from this "kick in the gut" and digest what had taken place. As it was Friday, we would have two days to think, discuss, and research so that we could formulate a plan. We need to be on our feet and running first thing Monday morning.
The first line of chemo, Gem/Tax, failed. The second line, AIM, also failed. The third, DTIC, was effective in shrinking all lung mets initially, but after four more rounds the second scan showed mixed results. That's all they have. There are no other meds, no other chemos, that have been shown to be effective against sarcomas.
So what happens now? Maybe a clinical trial? The doctor gave us the names of 2 doctors, one in Newark, NJ, at the University of Medicine and Dentistry, and a second in San Antonio, TX. Both are involved in clinical trials for various cancers including sarcomas. She suggested we contact both and see if Pete would be eligible for any open trials. She also told Pete that she would give him some "informed consent" forms to read through, in case he would like to be included in a Phase I trial at MSKCC. (I'll get to THAT a little later.)
I asked the doctor about the research I had done and showed her the list of drugs/trials I had found. Going down the list, she pointed out that Pete would not be considered a candidate for one reason or another. The exclusions were that he had brain mets, he had already been on a chemo that is in the same class as the one being tested, he has the wrong kind of sarcoma, etc.
She mentioned briefly that since he did have that positive response to DTIC, which is a single agent, it can be administered along with an additional drug, in this case Doxil, a derivative of doxorubicin. It seems that introducing a second agent sometimes kicks things back into motion.
So where does that leave us? I have to admit that I felt as though Pete and I had been dropped into the middle of a vast, empty ocean.
By the time we got home it was too late in the evening to place any calls, and we did not have time nor the energy to recover from this "kick in the gut" and digest what had taken place. As it was Friday, we would have two days to think, discuss, and research so that we could formulate a plan. We need to be on our feet and running first thing Monday morning.
Subscribe to:
Posts (Atom)