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. : )
Thursday, April 14, 2005
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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