Hello.
As a rather large bird reminded me, I haven't updated this blog in awhile...
This Friday, Jim has his ninth chemo treatment, which leaves three left after Sunday (when the chemo is officially over). So far things have been going well, no nausea or massive diarrhea. His cold sensitivity and tingling has increased, but not to the point where is inhibiting him from doing things. He does get exhausted on Sundays and Mondays (but he still goes to work on Mondays).
Once the chemo treatments are done, he can schedule another meeting with Dr Sardi in March or April (we're thinking). However it won't be at St Agnes, Dr Sardi is changing hospitals in February to Mercy Medical (also in Baltimore). It looks like a good move for him, plus he's leaving Dr Esquivel at St Agnes so patients won't be a PMP-specialist short.
All things are at status quo, so my next post probably will be in January 2006 after his last chemo treatment.
Wednesday, November 30, 2005
Monday, October 03, 2005
Fourth Round of Chemo
Hello.
Jim L's had his fourth round of Folfox. No problems with the treatment. He did experience a bit more of the cold reflex. When he drank something cold, his throat felt wierd. Not in a scary way, just different. So we let his drinks warm up after that. Only other thing to note is that after we disconnect the 5FU on Sundays, he is wiped out for the rest of the day. So far that's more than manageable.
Fifth round is scheduled for Oct 7th.
Jim L's had his fourth round of Folfox. No problems with the treatment. He did experience a bit more of the cold reflex. When he drank something cold, his throat felt wierd. Not in a scary way, just different. So we let his drinks warm up after that. Only other thing to note is that after we disconnect the 5FU on Sundays, he is wiped out for the rest of the day. So far that's more than manageable.
Fifth round is scheduled for Oct 7th.
Wednesday, September 14, 2005
Third Round of Chemo
Hello.
Well Jim L got both the port and 3rd round of Folfox chemo done on Friday Sept 9th. He was tired and sore, but glad to be starting the chemo again. Sooner started, sooner over.
He was able to drive down to my parents house on Sat. The whole bunch of us went sailing on the Chesapeake Bay for a couple hours (parents, sister, me and Jim on a 21ft San Juan sailboat). We had a good time (better than Jim's last sail when it was too foggy to see anything - sailed by compass points).
So he's now tired and healing. And the 4th round of chemo is scheduled for Sept 23rd.
Well Jim L got both the port and 3rd round of Folfox chemo done on Friday Sept 9th. He was tired and sore, but glad to be starting the chemo again. Sooner started, sooner over.
He was able to drive down to my parents house on Sat. The whole bunch of us went sailing on the Chesapeake Bay for a couple hours (parents, sister, me and Jim on a 21ft San Juan sailboat). We had a good time (better than Jim's last sail when it was too foggy to see anything - sailed by compass points).
So he's now tired and healing. And the 4th round of chemo is scheduled for Sept 23rd.
Tuesday, September 06, 2005
Update on Status
Hi.
Jim saw the Susquehanna Surgeons this morning and they say his hole is healing well. They have scheduled him for Friday to place another port (opposite side of where the other one was). Chemo is scheduled Friday too. So it looks like things are starting up again. That's both a relief and an "oh my".
We are supposed to go to a wedding this Friday, but Jim's health is our first priority. So he's getting the port and someone from work to drive him from Holy Spirit to the oncologist (I guess). He's not supposed to drive, so I'm assuming someone will take him from the hospital to chemo and then from chemo on home.
The first port wasn't as big a trauma as we expected, so we feel I don't have to miss the wedding to be there... And hopefully he can come down to Maryland to see my sister (Liz) on Saturday, if he's feeling up to the drive (me driving him - he doesn't know that part yet....). I also plan on going up Thur night...
Jim saw the Susquehanna Surgeons this morning and they say his hole is healing well. They have scheduled him for Friday to place another port (opposite side of where the other one was). Chemo is scheduled Friday too. So it looks like things are starting up again. That's both a relief and an "oh my".
We are supposed to go to a wedding this Friday, but Jim's health is our first priority. So he's getting the port and someone from work to drive him from Holy Spirit to the oncologist (I guess). He's not supposed to drive, so I'm assuming someone will take him from the hospital to chemo and then from chemo on home.
The first port wasn't as big a trauma as we expected, so we feel I don't have to miss the wedding to be there... And hopefully he can come down to Maryland to see my sister (Liz) on Saturday, if he's feeling up to the drive (me driving him - he doesn't know that part yet....). I also plan on going up Thur night...
Monday, August 29, 2005
Port to come out
Hi.
Jim's port got infected and the antibiotics killed off the infection, but there is a hole, where fluid was draining out. He saw the oncologist today and he needs to have the port removed. That's scheduled for tomorrow.
Once the area heals, he will have another port installed (probably on the other side of his chest). Then the chemo can resume.
A bit of a setback and a downer for Jim. Hopefully once the other port is in, it will be smooth sailing from there...
Jim's port got infected and the antibiotics killed off the infection, but there is a hole, where fluid was draining out. He saw the oncologist today and he needs to have the port removed. That's scheduled for tomorrow.
Once the area heals, he will have another port installed (probably on the other side of his chest). Then the chemo can resume.
A bit of a setback and a downer for Jim. Hopefully once the other port is in, it will be smooth sailing from there...
Friday, August 26, 2005
Delay
Hello.
We've had a bit of a delay. Jim's port got infected, so he's been on antibiotics for one week. Today he was supposed to restart on chemo (one week late), but the doctor is still worried about the port, so Jim's on a different antibiotic for another week.
So we're hoping that he can restart the chemo next Friday, Sept 2nd. This means he will still be on chemo in 2006, something he was hoping not to do.
But since he's not on chemo we can celebrate my Birthday on Sunday and not postpone it until he feels stronger. : )
We've had a bit of a delay. Jim's port got infected, so he's been on antibiotics for one week. Today he was supposed to restart on chemo (one week late), but the doctor is still worried about the port, so Jim's on a different antibiotic for another week.
So we're hoping that he can restart the chemo next Friday, Sept 2nd. This means he will still be on chemo in 2006, something he was hoping not to do.
But since he's not on chemo we can celebrate my Birthday on Sunday and not postpone it until he feels stronger. : )
Thursday, August 11, 2005
Happy Day
Hello.
We had the meeting with Dr Sardi yesterday to determine if all the cancer was removed by the surgery. He looked at the CT scans and Jim does not have any cancer remaining (i.e., none visible on the CT scan). Such great news!!!
He's supposed to keep having the chemo treatments though... So far he's had two treatments with very little side-effects... Almost no reaction to cold substances, a little bathroom running, and fatigue. He has ten treatments to go and if everything goes well, his last will be done on Christmas Day.
Six weeks after the last chemo treatment, he will need to have another CT scan done and then schedule an appointment with Dr Sardi again (possibly in Feb 2006).
As far as we are concerned, we are on the home stretch of putting this all behind us. Optimistic, yes. But good towards keeping a positive attitude. Thanks for checking in... : )
We had the meeting with Dr Sardi yesterday to determine if all the cancer was removed by the surgery. He looked at the CT scans and Jim does not have any cancer remaining (i.e., none visible on the CT scan). Such great news!!!
He's supposed to keep having the chemo treatments though... So far he's had two treatments with very little side-effects... Almost no reaction to cold substances, a little bathroom running, and fatigue. He has ten treatments to go and if everything goes well, his last will be done on Christmas Day.
Six weeks after the last chemo treatment, he will need to have another CT scan done and then schedule an appointment with Dr Sardi again (possibly in Feb 2006).
As far as we are concerned, we are on the home stretch of putting this all behind us. Optimistic, yes. But good towards keeping a positive attitude. Thanks for checking in... : )
Thursday, July 14, 2005
Chemo start date
Hello.
On Monday July 18th, Jim is scheduled to have the port installed in his shoulder. This will aid in the injection of the chemo drugs and will allow the drugs immediate access to his blood stream. I plan on taking him to this appointment, not knowing how he's going to be afterwards... Groggy, upset, etc...
Starting on July 22nd, Jim will have his first chemo treatment. It's expected to take 3hrs at the oncologists, then he will have a shoulder bag that will inject the 5-FU over a 48hr period. He's set the appointments up for Fridays that way any reactions he may have will be done when he's not at work.
On Monday July 18th, Jim is scheduled to have the port installed in his shoulder. This will aid in the injection of the chemo drugs and will allow the drugs immediate access to his blood stream. I plan on taking him to this appointment, not knowing how he's going to be afterwards... Groggy, upset, etc...
Starting on July 22nd, Jim will have his first chemo treatment. It's expected to take 3hrs at the oncologists, then he will have a shoulder bag that will inject the 5-FU over a 48hr period. He's set the appointments up for Fridays that way any reactions he may have will be done when he's not at work.
Wednesday, July 06, 2005
Met with Oncologist
Hello.
Well, we've met with Dr Gordon (Jim's Oncologist) on Friday July 1st. Jim will need chemotherapy, much to his disappointment. Fortunately Dr Gordon has had experience with patients with PMP. He said his office gets one case per year out of th thousands his office sees.
Dr Gordon prescribed Folfox, which is a common treatment for PMP. Folfox consists of Leucovorin, Fluorouracil, and Oxaliplatin. There are no specific chemo treatments for PMP, but Folfox is one commonly prescribed.
Jim will need to have a port installed in his shoulder, which will allow for direct injection of the oxaliplatin into his blood stream. Jim has an appointment on July 11th with his Harrisburg surgeons for a consult about the port. It will be installed under the skin and should not hamper Jim's movements, but he's not allowed excessive shoulder movement.
So after the port is in place, Jim will go to the Oncologist's once every two weeks for six months for a three-hour injection of the oxaliplatin (and leucovorin), then a 48-hour injection of the fluorouracil. He will carry the fluorouracil in a carry bag during the 48 hour period. At first a nurse will come and disconnect the bag after the 48 hours, but Jim expects to be shown how to do that himself.
Side effects... The big issue... For three days after the oxaliplatin injection Jim will have extreme sensitivity to cold. He's not allowed cold drinks or drinks with ice because he could have a tense time as his throat contracts as a reaction making hard to breathe. It's a temporary condition, but could cause a panic moment or two... Also, limited exposure to A/C, needs gloves to get things out of the frig... Basically he has to be cautious when around cold conditions.
He may also have diahrea (has medicine to combat that) or nausea (also has medicine to combat that). After a few treatments, he may experience numbness or tingling in his fingers and feet (just what he wants to hear) which will fade over nine months after the last treatment.
Hair loss should be minor and no permanent sterility. There may be times where he doesn't want to eat, so I'll have to keep an eye/ear open for that...
Jim also has a CT scan appt on July 20th, the important CT scan! This will show if the PMP is still present. Dr Sardi said he removed it all, but the CT scan will confirm that. Cross our fingers.
The appt with Dr Sardi is Aug 10th at 1pm, where we will go over the CT scan, blood work, and chemo. Hopefully at this meeting we will have a good idea on whether Jim is PMP-free or what the next step will be. Then if Jim has no reoccurances within 2 years, he basically can put this part of his life to bed and move on (if he hasn't already).
That's all for now.
Well, we've met with Dr Gordon (Jim's Oncologist) on Friday July 1st. Jim will need chemotherapy, much to his disappointment. Fortunately Dr Gordon has had experience with patients with PMP. He said his office gets one case per year out of th thousands his office sees.
Dr Gordon prescribed Folfox, which is a common treatment for PMP. Folfox consists of Leucovorin, Fluorouracil, and Oxaliplatin. There are no specific chemo treatments for PMP, but Folfox is one commonly prescribed.
Jim will need to have a port installed in his shoulder, which will allow for direct injection of the oxaliplatin into his blood stream. Jim has an appointment on July 11th with his Harrisburg surgeons for a consult about the port. It will be installed under the skin and should not hamper Jim's movements, but he's not allowed excessive shoulder movement.
So after the port is in place, Jim will go to the Oncologist's once every two weeks for six months for a three-hour injection of the oxaliplatin (and leucovorin), then a 48-hour injection of the fluorouracil. He will carry the fluorouracil in a carry bag during the 48 hour period. At first a nurse will come and disconnect the bag after the 48 hours, but Jim expects to be shown how to do that himself.
Side effects... The big issue... For three days after the oxaliplatin injection Jim will have extreme sensitivity to cold. He's not allowed cold drinks or drinks with ice because he could have a tense time as his throat contracts as a reaction making hard to breathe. It's a temporary condition, but could cause a panic moment or two... Also, limited exposure to A/C, needs gloves to get things out of the frig... Basically he has to be cautious when around cold conditions.
He may also have diahrea (has medicine to combat that) or nausea (also has medicine to combat that). After a few treatments, he may experience numbness or tingling in his fingers and feet (just what he wants to hear) which will fade over nine months after the last treatment.
Hair loss should be minor and no permanent sterility. There may be times where he doesn't want to eat, so I'll have to keep an eye/ear open for that...
Jim also has a CT scan appt on July 20th, the important CT scan! This will show if the PMP is still present. Dr Sardi said he removed it all, but the CT scan will confirm that. Cross our fingers.
The appt with Dr Sardi is Aug 10th at 1pm, where we will go over the CT scan, blood work, and chemo. Hopefully at this meeting we will have a good idea on whether Jim is PMP-free or what the next step will be. Then if Jim has no reoccurances within 2 years, he basically can put this part of his life to bed and move on (if he hasn't already).
That's all for now.
Thursday, May 19, 2005
May 19th - Quick Update
Hello.
St Agnes called Jim and told him he has the low grade PMP. Which is great news. They still want him to have the chemo, so now we are trying to find an oncologist in the Harrisburg area that is familiar with PMP. We got two recommendations from St Agnes, we just need their credentials and Jim to feel comfortable with them.
St Agnes will be sending Jim copies of the pathology final report and the list of chemo drugs that react well with his cancer. That's all we know for now. I'll update later as we learn things.
St Agnes called Jim and told him he has the low grade PMP. Which is great news. They still want him to have the chemo, so now we are trying to find an oncologist in the Harrisburg area that is familiar with PMP. We got two recommendations from St Agnes, we just need their credentials and Jim to feel comfortable with them.
St Agnes will be sending Jim copies of the pathology final report and the list of chemo drugs that react well with his cancer. That's all we know for now. I'll update later as we learn things.
Wednesday, May 18, 2005
May 18th
Hello.
Just got back from the doctor's visit. Things went very well even though they don't have the final pathology report yet (should have that tomorrow).
Jim's incision is healing so well that the hole doesn't need to be packed anymore. They've placed tape pulling both sides together and it's supposed to finish closing by itself. That's a relief, no more dressing changes...
The doctor thinks that Jim has a better than 80% chance of not having the cancer come back (will have a better idea with the pathology report). However, he does want Jim to undergo a 6-month chemotherapy treatment (which kind we should also know tomorrow). The chemo will improve Jim's odds of beating the cancer by more than 10% (so with the 80% we're looking at 90% or better). The chemo won't be started for 1-2 months. Tomorrow they should also be getting us a name of a medical onocologist near where Jim lives, who will perform the chemo treatment.
His next appointment with St Agnes will be in July after he has his CT scan done. So Jim's left with 7 more blood thinner shots (that he gives himself) and 3 more Procrit shots (to be done by his local doctor's office). He will still be taking iron supplements and multivitamins... but that's do-able.
So Jim's not done yet, but the odds are favorable that this will be the one time he needs to go through all of this. : )
I'll update tomorrow with the final pathology report result and chemo treatment.
Just got back from the doctor's visit. Things went very well even though they don't have the final pathology report yet (should have that tomorrow).
Jim's incision is healing so well that the hole doesn't need to be packed anymore. They've placed tape pulling both sides together and it's supposed to finish closing by itself. That's a relief, no more dressing changes...
The doctor thinks that Jim has a better than 80% chance of not having the cancer come back (will have a better idea with the pathology report). However, he does want Jim to undergo a 6-month chemotherapy treatment (which kind we should also know tomorrow). The chemo will improve Jim's odds of beating the cancer by more than 10% (so with the 80% we're looking at 90% or better). The chemo won't be started for 1-2 months. Tomorrow they should also be getting us a name of a medical onocologist near where Jim lives, who will perform the chemo treatment.
His next appointment with St Agnes will be in July after he has his CT scan done. So Jim's left with 7 more blood thinner shots (that he gives himself) and 3 more Procrit shots (to be done by his local doctor's office). He will still be taking iron supplements and multivitamins... but that's do-able.
So Jim's not done yet, but the odds are favorable that this will be the one time he needs to go through all of this. : )
I'll update tomorrow with the final pathology report result and chemo treatment.
Wednesday, May 11, 2005
May 11th
Hello.
No "real" new news... Both Dr Sardi and Paula were out, so we saw Robin Cianos (the IHPC coordinator) who was not able to tells us much. So we have another appointment next Wednesday (May 18th).
It was a good thing that we did have the appoinment even though we didn't get the info we wanted. Jim's covered head to toe in hives... Don't know what from (there was a suggestion that it maybe due to the fact his antibiotic regime just ended, but who knows). So we were able to have a Doctor tell us he can take benadryl for the hives...
No "real" new news... Both Dr Sardi and Paula were out, so we saw Robin Cianos (the IHPC coordinator) who was not able to tells us much. So we have another appointment next Wednesday (May 18th).
It was a good thing that we did have the appoinment even though we didn't get the info we wanted. Jim's covered head to toe in hives... Don't know what from (there was a suggestion that it maybe due to the fact his antibiotic regime just ended, but who knows). So we were able to have a Doctor tell us he can take benadryl for the hives...
Monday, May 09, 2005
May 9th
Hello.
Things are sort of status quo... Jim's right hand is still bothering him (tingling and numbness). He still has a mild fever in the evenings and night sweats... Wound packing and dressing changes are still going on with no fainting spells... : )
We do have an appointment at St Agnes tomorrow at 2pm to have his last staple removed and to find out the final results from the pathology report. Dr Sardi won't be in, but if we have questions we can email/call him later. I'll let you know how tomorrow went tomorow...
Things are sort of status quo... Jim's right hand is still bothering him (tingling and numbness). He still has a mild fever in the evenings and night sweats... Wound packing and dressing changes are still going on with no fainting spells... : )
We do have an appointment at St Agnes tomorrow at 2pm to have his last staple removed and to find out the final results from the pathology report. Dr Sardi won't be in, but if we have questions we can email/call him later. I'll let you know how tomorrow went tomorow...
Wednesday, May 04, 2005
May 4th
Today started off with a suprise... During Jim's dressing change, he passed out. Didn't bump anything on the way down (got him to sit down when he was feeling faint) and I was able to lower him from where he was sitting to the floor in a slow and graceful way... But definitely gave him a shock... He was only out for a few seconds.... Turns out the doctor and nurses thought he looked a little dehydrated yesterday plus I found out he didn't eat much yesterday as well (scrambled eggs, chicken nuggets, and 2 slices of pizza - not enough for one recovering). So gave him some OJ, protein shake, klondike bar, and gatorage and stayed with him until he felt better... Left him with a house stocked with food (crackers, soup, sandwich materials, PP&J, gatorage, V8, milk, left over pizza) and with orders to drink and eat more, so he should be ok until I get home...
Back to yesterday... He got to St Agnes around 1pm and they took blood and urine for testing and took a CT scan... He also got his Procrit injection... And they removed his staples!!!! : ) This ended around 5pm and he drove back to my house and took a long nap...
He has talked with St Agnes this morning (partly about the faint and partly about the results). He's still worried about the fever (it came back last night ~101, with the sweating again...). They said that the test results were coming back normal and if he had the fever again tonight, then they would probably schedule the CT scan for tomorrow. That's all I know for now...
Back to yesterday... He got to St Agnes around 1pm and they took blood and urine for testing and took a CT scan... He also got his Procrit injection... And they removed his staples!!!! : ) This ended around 5pm and he drove back to my house and took a long nap...
He has talked with St Agnes this morning (partly about the faint and partly about the results). He's still worried about the fever (it came back last night ~101, with the sweating again...). They said that the test results were coming back normal and if he had the fever again tonight, then they would probably schedule the CT scan for tomorrow. That's all I know for now...
Tuesday, May 03, 2005
May 3rd
Hello.
We've made it past the weekend and his temperature is still elevated in the evenings (100.7 - 101.8). We called St Agnes yesterday to find out what needed to be done. Waited until 4pm for Jim to talk with Dr Sardi. He was told to see his primary care doctor about the fever and to get a CT scan done to see if he has an abscess inside. That was not a problem since he was to see his primary care doctor anyway because of the Procrit shot and hemoglobin count needed to be done today. Didn't need to hear about a possible abscess (already worried about the temp now an added worry about an abscess)...
After his appointment with his primary care doctor at 10:30 am, Jim is now driving to St Agnes (because his doctor doesn't know the case history and doesn't know what to do for Jim). Plus he didn't get his Procrit shot (which now needs to be done at St Agnes).
I called Robin to gripe about the situation. Turns out Dr Sardi thought Jim was in Enola (not Oxford) and thought it was a shorter distance than going to Baltimore. Understandable, but very worrying for Jim... Also complained about the lack of a contact person for over the weekend. Was told that we were to have called the main hospital number where we would have been connected with the person on-call... Explained that I had called the main hospital number, but had to leave a message with Patient Records (since that was where I was directed). Told Robin that it would be good to put on the release form, who to contact during weekend hours... Jim was really worried over the weekend because of the fever...
That's where we are now... Will update as soon as I know anything more....
We've made it past the weekend and his temperature is still elevated in the evenings (100.7 - 101.8). We called St Agnes yesterday to find out what needed to be done. Waited until 4pm for Jim to talk with Dr Sardi. He was told to see his primary care doctor about the fever and to get a CT scan done to see if he has an abscess inside. That was not a problem since he was to see his primary care doctor anyway because of the Procrit shot and hemoglobin count needed to be done today. Didn't need to hear about a possible abscess (already worried about the temp now an added worry about an abscess)...
After his appointment with his primary care doctor at 10:30 am, Jim is now driving to St Agnes (because his doctor doesn't know the case history and doesn't know what to do for Jim). Plus he didn't get his Procrit shot (which now needs to be done at St Agnes).
I called Robin to gripe about the situation. Turns out Dr Sardi thought Jim was in Enola (not Oxford) and thought it was a shorter distance than going to Baltimore. Understandable, but very worrying for Jim... Also complained about the lack of a contact person for over the weekend. Was told that we were to have called the main hospital number where we would have been connected with the person on-call... Explained that I had called the main hospital number, but had to leave a message with Patient Records (since that was where I was directed). Told Robin that it would be good to put on the release form, who to contact during weekend hours... Jim was really worried over the weekend because of the fever...
That's where we are now... Will update as soon as I know anything more....
Sunday, May 01, 2005
May 1st
Hello...
Things have been going well so far... Jim's sleeping right now... Wore him out by walking a bit too much today (2 miles at Fairhill State Park in MD)...
He has an appointment on Tues with his doctor for a Procrit injection and bood work (to determine his hemoglobin count, when it reaches 11 he stops getting the shots).
Only thing going on now is that his temp is close to normal first thing in the a.m. and then reaches 101 or higher in the evening... Can't tell if this is something to be concerned about or not (we don't feel this constitues an "emergency"). Wasn't given a weekend contact number by St Agnes (an oversight we plan on fixing first thing Monday). Everything else seems ok: no pain to speak of, no inflammation... So Jim will call on Monday and see what we should be doing...
Jim received flowers from his workplace on Saturday. They're very lovely... A good suprise for him... : )
Things have been going well so far... Jim's sleeping right now... Wore him out by walking a bit too much today (2 miles at Fairhill State Park in MD)...
He has an appointment on Tues with his doctor for a Procrit injection and bood work (to determine his hemoglobin count, when it reaches 11 he stops getting the shots).
Only thing going on now is that his temp is close to normal first thing in the a.m. and then reaches 101 or higher in the evening... Can't tell if this is something to be concerned about or not (we don't feel this constitues an "emergency"). Wasn't given a weekend contact number by St Agnes (an oversight we plan on fixing first thing Monday). Everything else seems ok: no pain to speak of, no inflammation... So Jim will call on Monday and see what we should be doing...
Jim received flowers from his workplace on Saturday. They're very lovely... A good suprise for him... : )
Thursday, April 28, 2005
He's Home!!!
Hello.
Picked him up around 4pm today... Temperature was down, so they released him...
Jim had chicken parmesean for dinner, ate some, refrigerated the rest... definitely did him some good to eat yummy food...
We do have to pack one hole... And it's a doosiey... About 3-4 inches long and about 2 inches deep (through the subcutaneous fat layer...) After seeing that, Jim wants to exercise a bit more when he's healed... : )
I'm happy he's out and he's tired and HAPPY he's out... Though he has an appointment next week to take out the rest of the staples.. We're hoping then to find out what "type" of PMP he has and the long term expectations...
Picked him up around 4pm today... Temperature was down, so they released him...
Jim had chicken parmesean for dinner, ate some, refrigerated the rest... definitely did him some good to eat yummy food...
We do have to pack one hole... And it's a doosiey... About 3-4 inches long and about 2 inches deep (through the subcutaneous fat layer...) After seeing that, Jim wants to exercise a bit more when he's healed... : )
I'm happy he's out and he's tired and HAPPY he's out... Though he has an appointment next week to take out the rest of the staples.. We're hoping then to find out what "type" of PMP he has and the long term expectations...
Minor Set-back
Jim had a temperature of 101.4ºF yesterday which kept him from coming home. He was very disappointed.
Also Dr Sardi had to remove a few staples just below his bellybutton to allow the incision to drain (it was getting infected). I'm hoping it's not something we need to keep packing once he's released. Been there done that... Oh well, it's not a big deal if we have to do that again... Atleast this time it would be one hole and not five...
But Jim was able to give himself the blood thinner shot in this thigh yesterday. He thinks he will be able to do this once he's released too... That's good news...
So we'll see what happens today. Hopefully he can be released... I'll let you know.
Also Dr Sardi had to remove a few staples just below his bellybutton to allow the incision to drain (it was getting infected). I'm hoping it's not something we need to keep packing once he's released. Been there done that... Oh well, it's not a big deal if we have to do that again... Atleast this time it would be one hole and not five...
But Jim was able to give himself the blood thinner shot in this thigh yesterday. He thinks he will be able to do this once he's released too... That's good news...
So we'll see what happens today. Hopefully he can be released... I'll let you know.
Wednesday, April 27, 2005
Even Better News
Hello.
Guess who had a normal dinner yesterday (spagetti even)... : )
Also, he's been told by the resident that he may be released today... : )
We're just waiting until he sees Dr Sardi today (mostly for the pathology report and future prognosis) to confirm that he can be release today...
Then its just rest, relax, and recovery at my house... Josephine (my cat) has specifically been instructed not to walk on Jim's stomach...
Guess who had a normal dinner yesterday (spagetti even)... : )
Also, he's been told by the resident that he may be released today... : )
We're just waiting until he sees Dr Sardi today (mostly for the pathology report and future prognosis) to confirm that he can be release today...
Then its just rest, relax, and recovery at my house... Josephine (my cat) has specifically been instructed not to walk on Jim's stomach...
Monday, April 25, 2005
More Good News
Hello.
Both the NG tube and the catheter are out! The bowels are working! And he had the liquid dinner tonight... What progress!!!!! : )
Just waiting for the pathology report now.. He's still on the morphine for pain, but there was talk today of changing to a different pain drug (don't know what).
The upsetting thing for Jim today is that he needs to inject himself once a day for two weeks with a blood thinner once he's released... I'm hoping that on Wed that they can show me how to inject Jim, since Jim is worried about doing it right... Also he's on [Prilosec-wrong] Procrit (to increase his red blood cells). Since he didn't "qualify" for a transfusion, his body needs to create the blood it lossed. I think this needs to be administered by an Oncologist. So Jim needs to find an Oncologist since we sort of skipped that step...
But we're on the home stretch (at least I think so)... Yeah!!!!!
Both the NG tube and the catheter are out! The bowels are working! And he had the liquid dinner tonight... What progress!!!!! : )
Just waiting for the pathology report now.. He's still on the morphine for pain, but there was talk today of changing to a different pain drug (don't know what).
The upsetting thing for Jim today is that he needs to inject himself once a day for two weeks with a blood thinner once he's released... I'm hoping that on Wed that they can show me how to inject Jim, since Jim is worried about doing it right... Also he's on [Prilosec-wrong] Procrit (to increase his red blood cells). Since he didn't "qualify" for a transfusion, his body needs to create the blood it lossed. I think this needs to be administered by an Oncologist. So Jim needs to find an Oncologist since we sort of skipped that step...
But we're on the home stretch (at least I think so)... Yeah!!!!!
Sunday, April 24, 2005
Sunday 4/24
Hello.
Not much to update. Jim did three more walks of five laps each.. : ) His JP drain is gone (he only had one, which is amazing in and of itself) and the tubes providing anesthesia are gone too... (He did the three walks without the extra anesthesia!!!!)... Koodos to Jim
Mostly he slept today... Which is fine, aids in healing... Though at one point he thought he might have a BM, but the feeling went away... Maybe tomorrow...
Unfortunately I have to start back at work tomorrow, so Jim is left to fend for himself. I did leave knowing that he could unconnect himself for a walk when he wants one and reconnect himself when done. All but the leg cuffs (my name for them, they inflat and deflat on his legs to reduce blood clots, don't know the "real" name for them). I'll be able to check up on him (physically) on Wednesday. Until then, you and I will be getting updates from him over the phone (if he remembers the conversation)... ; )
That's all for now...
Jennifer
PS Liz (my sister) meet Anna (Jim's sister in-law)... : )
Not much to update. Jim did three more walks of five laps each.. : ) His JP drain is gone (he only had one, which is amazing in and of itself) and the tubes providing anesthesia are gone too... (He did the three walks without the extra anesthesia!!!!)... Koodos to Jim
Mostly he slept today... Which is fine, aids in healing... Though at one point he thought he might have a BM, but the feeling went away... Maybe tomorrow...
Unfortunately I have to start back at work tomorrow, so Jim is left to fend for himself. I did leave knowing that he could unconnect himself for a walk when he wants one and reconnect himself when done. All but the leg cuffs (my name for them, they inflat and deflat on his legs to reduce blood clots, don't know the "real" name for them). I'll be able to check up on him (physically) on Wednesday. Until then, you and I will be getting updates from him over the phone (if he remembers the conversation)... ; )
That's all for now...
Jennifer
PS Liz (my sister) meet Anna (Jim's sister in-law)... : )
Saturday, April 23, 2005
Fourth Day After Surgery
Hello.
Both Jim's Mom and Aunt have been picked up by Jim's brother Will and family and should be in the Wilkes-Barre area by now...
Jim's doing better... He's up to five laps each time he goes for a walk. And that was three times today! : ) Mostly he spent today sleeping... Which is fine, just means the body is healing...
I do think that his bowels are starting to wake up... Smelt the noxious fumes of flatuluence today though Jim says that he didn't feel anything.. A good sign, but not another hurtle cleared until Jim actual feels the event... I think I was very PC about this event ; )
Right now I'm just exhausted. First surgery, Aunt episode, and playing hostess have worn me out. Tomorrow I'm sleeping as late as I want (Josephine the Cat not withstanding... normally wants to be let outside at 5am)... Good dreams to everyone!
PS Liz, your comment(s) worked. Thanks for checking in... : )
Both Jim's Mom and Aunt have been picked up by Jim's brother Will and family and should be in the Wilkes-Barre area by now...
Jim's doing better... He's up to five laps each time he goes for a walk. And that was three times today! : ) Mostly he spent today sleeping... Which is fine, just means the body is healing...
I do think that his bowels are starting to wake up... Smelt the noxious fumes of flatuluence today though Jim says that he didn't feel anything.. A good sign, but not another hurtle cleared until Jim actual feels the event... I think I was very PC about this event ; )
Right now I'm just exhausted. First surgery, Aunt episode, and playing hostess have worn me out. Tomorrow I'm sleeping as late as I want (Josephine the Cat not withstanding... normally wants to be let outside at 5am)... Good dreams to everyone!
PS Liz, your comment(s) worked. Thanks for checking in... : )
Friday, April 22, 2005
More Good News
Hello.
Jim's Aunt was released from the hospital today. Her sugar levels have stabilized. So now, both she and Jim's Mom are staying at my house. Tomorrow Jim's brother Will and family will be coming down to the hospital to pick them up.
Jim is also making progress... Over three walks today he's done 12 laps around the 7th floor. And he's up to sips of water and ice chips... He's making better progress now than when he was recovering from his appendectomy.
They are going to remove the tubes that deliver a local anesthesia around the incision on Sunday (it's a new 5-day treatment they are trying and Jim's the 5th patient with it, they think it works wonderfully - so do I). Then when his bowels start to work, they'll remove the NG tube. And once he starts eating, then the catheter goes... So he's making real nice progress..
All that's left is waiting for the pathology report from the biopsies Dr Sardi made and those are due early next week...
Thanks for reading...
Jim's Aunt was released from the hospital today. Her sugar levels have stabilized. So now, both she and Jim's Mom are staying at my house. Tomorrow Jim's brother Will and family will be coming down to the hospital to pick them up.
Jim is also making progress... Over three walks today he's done 12 laps around the 7th floor. And he's up to sips of water and ice chips... He's making better progress now than when he was recovering from his appendectomy.
They are going to remove the tubes that deliver a local anesthesia around the incision on Sunday (it's a new 5-day treatment they are trying and Jim's the 5th patient with it, they think it works wonderfully - so do I). Then when his bowels start to work, they'll remove the NG tube. And once he starts eating, then the catheter goes... So he's making real nice progress..
All that's left is waiting for the pathology report from the biopsies Dr Sardi made and those are due early next week...
Thanks for reading...
Thursday, April 21, 2005
Two days later
Hello.
Jim is now on the recovery floor (725-1, meaning room 725 bed 1). He was moved there yesterday around 5pm. He's only on oxygen when he sleeps, he has gone for two walks today (each one was a full lap around the wing), and they are talking about removing the NG tube tomorrow... Definite progress... Part of what is helping is that they are using a new pain-reduction technique. They've implanted two thin tubes, one on each side of the incision opening that provide a local anestisia (sp?) to the incision. This has allowed Jim to feel less pain than he usually would, which is could account for two walks today... He's the 5th patient at St Agnes to have this performed. The 4th patient was also a PMP sufferer and ~5 weeks later she's almost walking a mile...
Good news, Jim kept his bellybutton... Was able to see it today. : )
His Aunt is now in a room too, move at midnight last night (rm 685). They had put her on medicine to try to reduce the sugar highs and lows... They are trying to not have to place her on insulin shots... They are still trying to figure out her low oxygen levels... But she may be released tomorrow...
More news tomorrow.
Jim is now on the recovery floor (725-1, meaning room 725 bed 1). He was moved there yesterday around 5pm. He's only on oxygen when he sleeps, he has gone for two walks today (each one was a full lap around the wing), and they are talking about removing the NG tube tomorrow... Definite progress... Part of what is helping is that they are using a new pain-reduction technique. They've implanted two thin tubes, one on each side of the incision opening that provide a local anestisia (sp?) to the incision. This has allowed Jim to feel less pain than he usually would, which is could account for two walks today... He's the 5th patient at St Agnes to have this performed. The 4th patient was also a PMP sufferer and ~5 weeks later she's almost walking a mile...
Good news, Jim kept his bellybutton... Was able to see it today. : )
His Aunt is now in a room too, move at midnight last night (rm 685). They had put her on medicine to try to reduce the sugar highs and lows... They are trying to not have to place her on insulin shots... They are still trying to figure out her low oxygen levels... But she may be released tomorrow...
More news tomorrow.
Wednesday, April 20, 2005
Post Op
Hello.
Jim started surgery at 9:40am yesterday and was done by 5:40pm. It was a nine hour surgery. Dr Sardi removed his gall bladder, spleen, and part of his colon near where the appendix was. He removed all tumors and mucus. He also took biopsies from Jim's liver and abdominal wall (we should have results back by early next week). So far things look good. No longer-term prognosis yet.
After surgery Jim was taken to ICU and by 10pm the breathing tube had been removed and Jim was breathing on his own. This morning they are just waiting for a bed to open upstairs, then he's out of ICU. Woohoo... Making fast progress...
However, while we were waiting for Jim to come out of surgery. His Aunt was taken to Emergency at St Agnes. We think something about her diabetes went haywire. Her blood sugars were elevated (almost to the point where she was ~1hr away from dying). So she was admitted and sent to ICU. So we had both Jim and his Aunt in ICU last night. She's having a lung scan this morning before we know any more...
I'm heading back to the hospital. Had to wash up and tidy they house incase Jim's Mom needs to stay over (Aunt and Mom are sisters).
Wil update later,
Jennifer
Jim started surgery at 9:40am yesterday and was done by 5:40pm. It was a nine hour surgery. Dr Sardi removed his gall bladder, spleen, and part of his colon near where the appendix was. He removed all tumors and mucus. He also took biopsies from Jim's liver and abdominal wall (we should have results back by early next week). So far things look good. No longer-term prognosis yet.
After surgery Jim was taken to ICU and by 10pm the breathing tube had been removed and Jim was breathing on his own. This morning they are just waiting for a bed to open upstairs, then he's out of ICU. Woohoo... Making fast progress...
However, while we were waiting for Jim to come out of surgery. His Aunt was taken to Emergency at St Agnes. We think something about her diabetes went haywire. Her blood sugars were elevated (almost to the point where she was ~1hr away from dying). So she was admitted and sent to ICU. So we had both Jim and his Aunt in ICU last night. She's having a lung scan this morning before we know any more...
I'm heading back to the hospital. Had to wash up and tidy they house incase Jim's Mom needs to stay over (Aunt and Mom are sisters).
Wil update later,
Jennifer
Monday, April 18, 2005
Pre-Op
Hello.
We arrived at St. Agnes around 9:30am and proceeded through registration. Jim was shown to a room around 10:30am, then the "fun" began. They had to run tests, blood tests (~7 vials worth), EKG, chest x-ray, 50+ questions... He's also participating in a clinical study about bacteria and PMP, they need to collect urine and tumor samples (done during surgery) to test for microbial presence (they suspect a bacteria plays a part in a person getting PMP). Mostly today was spent waiting for the next person to enter and reading through the pauses..
His mom, brother, sister-in-law, and aunt came to be with him through the next two days. He is scheduled for surgery at 7:45 am and will start the process at 6:45am.. So the plan is to get there before he starts the process (me specifically since I have his most recent CT scans) and wait... It's expected that the surgery/chemotherapy will take 6-10hrs.
Two out of three cancer markers came back non-detect (the last marker hadn't been reported yet), which is a good sign. So if everything goes well, he should be in ICU early tomorrow afternoon and then assigned a recover room on the 7th floor a day or so afterwards...
I'll update tomorrow on how the surgery went.
We arrived at St. Agnes around 9:30am and proceeded through registration. Jim was shown to a room around 10:30am, then the "fun" began. They had to run tests, blood tests (~7 vials worth), EKG, chest x-ray, 50+ questions... He's also participating in a clinical study about bacteria and PMP, they need to collect urine and tumor samples (done during surgery) to test for microbial presence (they suspect a bacteria plays a part in a person getting PMP). Mostly today was spent waiting for the next person to enter and reading through the pauses..
His mom, brother, sister-in-law, and aunt came to be with him through the next two days. He is scheduled for surgery at 7:45 am and will start the process at 6:45am.. So the plan is to get there before he starts the process (me specifically since I have his most recent CT scans) and wait... It's expected that the surgery/chemotherapy will take 6-10hrs.
Two out of three cancer markers came back non-detect (the last marker hadn't been reported yet), which is a good sign. So if everything goes well, he should be in ICU early tomorrow afternoon and then assigned a recover room on the 7th floor a day or so afterwards...
I'll update tomorrow on how the surgery went.
Thursday, April 14, 2005
Colonoscopy
Hello.
Jim had his colonoscopy done this morning. He had two biopsies performed. We hope to get results back before Tuesday, but the doctor wasn't sure if that would happen.
They found two suspect polyp areas. Both were near the terminal ileum, which is located near the appendix (if Jim still had one). We were hoping they wouldn't find anything, but considering the PMP (appendix cancer) diagnosis, to have two suspect areas near where the appendix was is not too unexpected. So besides the greater and lesser omentums and gall bladder, it looks like he may have some of his colon removed. That was always a possibility, but I think with two suspect polyps, Dr Sardi will remove that part of the colon as a precaution.
Jim is home resting. And the doctor is supposed to fax the report to Baltimore. So as far as I know right now, we are still on for the MOAS on Tuesday. Jim's coming down to my house on Saturday since he has to be at St Agnes by 10am on Monday. And there is no way I'm letting him drive. : )
Jim had his colonoscopy done this morning. He had two biopsies performed. We hope to get results back before Tuesday, but the doctor wasn't sure if that would happen.
They found two suspect polyp areas. Both were near the terminal ileum, which is located near the appendix (if Jim still had one). We were hoping they wouldn't find anything, but considering the PMP (appendix cancer) diagnosis, to have two suspect areas near where the appendix was is not too unexpected. So besides the greater and lesser omentums and gall bladder, it looks like he may have some of his colon removed. That was always a possibility, but I think with two suspect polyps, Dr Sardi will remove that part of the colon as a precaution.
Jim is home resting. And the doctor is supposed to fax the report to Baltimore. So as far as I know right now, we are still on for the MOAS on Tuesday. Jim's coming down to my house on Saturday since he has to be at St Agnes by 10am on Monday. And there is no way I'm letting him drive. : )
Tuesday, April 05, 2005
Jim has decided
Hello.
Jim has decided to have Dr Sardi perform the surgery.
We had a good interview with Dr Sardi. He mentioned that he will remove all the tumors and mucin before he considers the operation finished. Also will use the cells to grow in a lab inorder to test different chemo drugs and find out which one works better for Jim (something not mentioned by Dr Sugarbaker). And said that Jim needed to have a colonoscopy so Dr Sardi can see the condition of the colon and to look for any other issues in the colon (ex. additional PMP or other cancers). Said that very recent data seems to point towards a bacteria as the agent that causes the PMP. His IPHC coordinator, Robin, gave us (and another PMP patient, Chris) a tour of the facilities at St Agnes (didn't get a tour at WHC). Unfortunately Dr Sardi was not able to give percentages like Dr Sugarbaker. Was a bit conservative on his diagnosis. Definitely said that Jim had PMP and that he could do something about that. But specifics on reoccurance or quality of life projections couldn't be made until after the surgery, when he will know which kind of PMP Jim had. (I used had because I'm being hopeful, since it will be after the surgery)
After our appointment on Wed (3/30/05), we had decided to ask a few more questions of Dr Sugarbaker and Dr Sardi. Jim emailed Robin, Dr Sardi's IPHC coordinator, and I called Dr Sugarbaker's office. Jim's questions were more regarding the insurance coverage [covered by BCBS], the number of PMP surgeries performed [was not specific, but have done many], and the success rate [>47% for all surgeries, higher percentage for PMP specific surgeries]. I asked Ilsa (Dr Sugarbaker's wife and point of contact) about whether they thought a colonoscopy was needed [not needed, they don't look for any other problems outside the PMP], did they "type" the cancer and figure out which chemo drug worked best [no, could do that for an extra charge - not covered by insurance], what were the research topics that Dr Sugarbaker was investigating [improvement on the surgerical procedure], and did they think a second opinion was necessary [no, they don't usually suggest one]. Ilsa also said that complete removal of the tumors and mucin was more important than the actual type of PMP. Based on these answers and impressions of both surgeons, Jim decided on Dr Sardi.
So his surgery has been scheduled for April 19th. I'm taking that whole week off and his family will come down Mon through Wed... Now all Jim needs to do is get the colonoscopy and try not to think of the surgery. Fortunately his birthday is April 11th, so maybe I can distract him with that for now... : )
Jim has decided to have Dr Sardi perform the surgery.
We had a good interview with Dr Sardi. He mentioned that he will remove all the tumors and mucin before he considers the operation finished. Also will use the cells to grow in a lab inorder to test different chemo drugs and find out which one works better for Jim (something not mentioned by Dr Sugarbaker). And said that Jim needed to have a colonoscopy so Dr Sardi can see the condition of the colon and to look for any other issues in the colon (ex. additional PMP or other cancers). Said that very recent data seems to point towards a bacteria as the agent that causes the PMP. His IPHC coordinator, Robin, gave us (and another PMP patient, Chris) a tour of the facilities at St Agnes (didn't get a tour at WHC). Unfortunately Dr Sardi was not able to give percentages like Dr Sugarbaker. Was a bit conservative on his diagnosis. Definitely said that Jim had PMP and that he could do something about that. But specifics on reoccurance or quality of life projections couldn't be made until after the surgery, when he will know which kind of PMP Jim had. (I used had because I'm being hopeful, since it will be after the surgery)
After our appointment on Wed (3/30/05), we had decided to ask a few more questions of Dr Sugarbaker and Dr Sardi. Jim emailed Robin, Dr Sardi's IPHC coordinator, and I called Dr Sugarbaker's office. Jim's questions were more regarding the insurance coverage [covered by BCBS], the number of PMP surgeries performed [was not specific, but have done many], and the success rate [>47% for all surgeries, higher percentage for PMP specific surgeries]. I asked Ilsa (Dr Sugarbaker's wife and point of contact) about whether they thought a colonoscopy was needed [not needed, they don't look for any other problems outside the PMP], did they "type" the cancer and figure out which chemo drug worked best [no, could do that for an extra charge - not covered by insurance], what were the research topics that Dr Sugarbaker was investigating [improvement on the surgerical procedure], and did they think a second opinion was necessary [no, they don't usually suggest one]. Ilsa also said that complete removal of the tumors and mucin was more important than the actual type of PMP. Based on these answers and impressions of both surgeons, Jim decided on Dr Sardi.
So his surgery has been scheduled for April 19th. I'm taking that whole week off and his family will come down Mon through Wed... Now all Jim needs to do is get the colonoscopy and try not to think of the surgery. Fortunately his birthday is April 11th, so maybe I can distract him with that for now... : )
Thursday, March 31, 2005
After Dr Sardi meeting
Hello.
We met with Dr Sardi yesterday. No.1 Jim L does have PMP and needs the surgery. However, Dr Sardi was a little vague (conservative might be a better word) on how Jim L. would do after the surgery. He said he would have a better idea after the surgery when Dr Sardi can figure out what kind of PMP Jim L has... Dr Sardi does think that Jim L has the no- to low-cancerous type since Jim L has no symptoms and because the tumors have not grown (or not significantly) since the CT scan done in Sept 2004.
It's now up to Jim L (plus asking a few more question to both doctors) to decide which Dr to have perform the surgery... Both Drs can do the surgery and IHPC, it's just a question of which one Jim L feels can "cure" him... Dr Sugarbaker did say that he considers his surgery in Jim L's case to be curative.... 80% chance of >5yrs...Dr Sardi was more conservative in his opinion, but brought up some good points and even recommended a colonoscopy (that Dr Sugarbakerdid not suggest)...
Will update this when we've talked with both doctors and once Jim L has made a decision...
We met with Dr Sardi yesterday. No.1 Jim L does have PMP and needs the surgery. However, Dr Sardi was a little vague (conservative might be a better word) on how Jim L. would do after the surgery. He said he would have a better idea after the surgery when Dr Sardi can figure out what kind of PMP Jim L has... Dr Sardi does think that Jim L has the no- to low-cancerous type since Jim L has no symptoms and because the tumors have not grown (or not significantly) since the CT scan done in Sept 2004.
It's now up to Jim L (plus asking a few more question to both doctors) to decide which Dr to have perform the surgery... Both Drs can do the surgery and IHPC, it's just a question of which one Jim L feels can "cure" him... Dr Sugarbaker did say that he considers his surgery in Jim L's case to be curative.... 80% chance of >5yrs...Dr Sardi was more conservative in his opinion, but brought up some good points and even recommended a colonoscopy (that Dr Sugarbakerdid not suggest)...
Will update this when we've talked with both doctors and once Jim L has made a decision...
Monday, March 28, 2005
Currently, what we know
Hello. My name is Jennifer Stanhope and this Blog was created to keep family/friends updated on my boyfriend's current fight with cancer. I've provided a little timeline on what we know and when we learned it.
On Sept 2nd 2004; Jim L had an emergency appendectomy performed after being diagnosed with appendicitis by his regular physician. The surgeon was curious about how the appendix had ruptured and sent fragments to the Air Force Pathology Laboratory for analysis.
Sept 21, 2004; the surgeon requested that Jim L come into the office because he had "found something." We saw the surgeon who explained that the pathology report came back with the findings of mucinous adenocarcinoma (pseudomyxoma peritonei, PMP), a rare cancer. This cancer starts in the appendix, after the appendix bursts (in some people, they never feel the rupture) the cancer "seeds" itself throughout the abdominal cavity. Unlike typical cancers, PMP does not spread through the blood or lymph systems. This cancer causes accumulation of mucin (a mucus-like substance) to gather in the abdominal cavity until it smothers the organs, which causes eventual death.
Sept 24, 2004; Jim L had a CAT scan performed. Currently the best way to detect PMP is by a CAT scan, which shows the mucin as voids in the abdominal cavity.
Jan 10, 2005; we traveled to Washington, D.C. to the Washington Cancer Institute to meet with Dr Sugarbaker, a leading PMP surgeon about Jim's options and about what PMP was. The Air Force Pathology Lab had suggested seeing Dr Sugarbaker and since the PA surgeon hadn't seen PMP before and based on the standard treatment, knew that the hospitals in the Harrisburg area were not equiped to provide this treatment, he also said to see Dr. Sugarbaker. When diagnosed with or have the symptoms of PMP it is imperative to see a PMP specialist since most cases of PMP are misdiagnosed. Dr. Sugarbaker told Jim that he did have PMP and that he required surgery/chemotherapy or he would die from the PMP in the next few years. The surgery/chemo treatment was developed by Dr. Sugarbaker and it consists of cytoreductive surgery and heated intraperitoneal chemotherapy. Known as the "Mother of all Surgeries" (MOAS) by the PMP community. For Jim, that meant the removal of the greater and lesser omentum, gall bladder, belly button, and possibly more of his colon followed by the two rounds of heated chemotherapy, one while still in surgery and the other in ICU. The good news was that Dr. Sugarbaker expected that Jim had a 90% chance of not having PMP after the surgery/chemo. The down side is that Dr. Sugarbaker's office is not in-network with most insurances. Therefore, they requested a sizeable deposit (tens of thousands of dollars) before they performed the surgery/chemo (currently scheduled for April 19th), with the final cost upwards of $40,000 or more. Side note; the hospital is in-network and shouldn't cost Jim more than a $1,000 or so.
So we have an appointment with Dr Sardi with St Agnes Hospital in Baltimore, MD on March 30th 2005 to provide Jim with a second (less-costly) surgical option. Dr. Sardi is in-network with Jim's insurance, he learned the surgery/chemo treatment from Dr Sugarbaker, and I've heard only good things about Dr. Sardi. One positive aspect about this is that Jim will have a second opinion on whether he has PMP or not (he's getting a second CAT scan done plus blood work). Dr. Sugarbaker was unable to tell us definitely that Jim had PMP based on his CAT scan since it was done soon after his appendectomy (inflammation from the surgery could have been acting as "noise" in the CAT scan) and so Jim has had a quiet voice back in his head saying, "Do I really have this?" At least we will find out that much. Then after the appointment, Jim has to figure out what he wants to do next based on what Dr. Sardi says... As of now, we're keeping the surgery date with Dr. Sugarbaker and I'll update this Blog with Jim's decision....
On Sept 2nd 2004; Jim L had an emergency appendectomy performed after being diagnosed with appendicitis by his regular physician. The surgeon was curious about how the appendix had ruptured and sent fragments to the Air Force Pathology Laboratory for analysis.
Sept 21, 2004; the surgeon requested that Jim L come into the office because he had "found something." We saw the surgeon who explained that the pathology report came back with the findings of mucinous adenocarcinoma (pseudomyxoma peritonei, PMP), a rare cancer. This cancer starts in the appendix, after the appendix bursts (in some people, they never feel the rupture) the cancer "seeds" itself throughout the abdominal cavity. Unlike typical cancers, PMP does not spread through the blood or lymph systems. This cancer causes accumulation of mucin (a mucus-like substance) to gather in the abdominal cavity until it smothers the organs, which causes eventual death.
Sept 24, 2004; Jim L had a CAT scan performed. Currently the best way to detect PMP is by a CAT scan, which shows the mucin as voids in the abdominal cavity.
Jan 10, 2005; we traveled to Washington, D.C. to the Washington Cancer Institute to meet with Dr Sugarbaker, a leading PMP surgeon about Jim's options and about what PMP was. The Air Force Pathology Lab had suggested seeing Dr Sugarbaker and since the PA surgeon hadn't seen PMP before and based on the standard treatment, knew that the hospitals in the Harrisburg area were not equiped to provide this treatment, he also said to see Dr. Sugarbaker. When diagnosed with or have the symptoms of PMP it is imperative to see a PMP specialist since most cases of PMP are misdiagnosed. Dr. Sugarbaker told Jim that he did have PMP and that he required surgery/chemotherapy or he would die from the PMP in the next few years. The surgery/chemo treatment was developed by Dr. Sugarbaker and it consists of cytoreductive surgery and heated intraperitoneal chemotherapy. Known as the "Mother of all Surgeries" (MOAS) by the PMP community. For Jim, that meant the removal of the greater and lesser omentum, gall bladder, belly button, and possibly more of his colon followed by the two rounds of heated chemotherapy, one while still in surgery and the other in ICU. The good news was that Dr. Sugarbaker expected that Jim had a 90% chance of not having PMP after the surgery/chemo. The down side is that Dr. Sugarbaker's office is not in-network with most insurances. Therefore, they requested a sizeable deposit (tens of thousands of dollars) before they performed the surgery/chemo (currently scheduled for April 19th), with the final cost upwards of $40,000 or more. Side note; the hospital is in-network and shouldn't cost Jim more than a $1,000 or so.
So we have an appointment with Dr Sardi with St Agnes Hospital in Baltimore, MD on March 30th 2005 to provide Jim with a second (less-costly) surgical option. Dr. Sardi is in-network with Jim's insurance, he learned the surgery/chemo treatment from Dr Sugarbaker, and I've heard only good things about Dr. Sardi. One positive aspect about this is that Jim will have a second opinion on whether he has PMP or not (he's getting a second CAT scan done plus blood work). Dr. Sugarbaker was unable to tell us definitely that Jim had PMP based on his CAT scan since it was done soon after his appendectomy (inflammation from the surgery could have been acting as "noise" in the CAT scan) and so Jim has had a quiet voice back in his head saying, "Do I really have this?" At least we will find out that much. Then after the appointment, Jim has to figure out what he wants to do next based on what Dr. Sardi says... As of now, we're keeping the surgery date with Dr. Sugarbaker and I'll update this Blog with Jim's decision....
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