Medical Forum / General / General / March 2007
Ping , Howard M
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betsyb - 25 Mar 2007 01:07 GMT Can you help this fella? He is visually impaired so I am posting his plea for help here. Any words of wisdom will be appreciated. BetsyB
"J W" <jonboy42@webtv.net> wrote in message news:<2576-46057E2B-600@storefull-3252.bay.webtv.net>... Well folks it appears that I'm a goner according to my latest CT scan posted below and my oncologist. 6 weeks ago Prior to getting these two doses of irinitican or CPT-11 at the strongest dose I was fine except for a high CEA of 215. The bulky adenopathy in the porta hepatis is blocking my lymph nodes from draining if I'm reading it right so now I've got swollen lymph nodes all over the place. 3 weeks ago my blood tests showed normal bilirubin, ALT & AST, only alkaline phophotase was high at 300 but hat's been running high for over 6 months and had actually come down from 400. Now the CEA is 331, bilirubin is 2.2, ALT & AST are off the chart at 551 & 422. I'm completely jaundice,itchy all over, pee is ice tea color, liver, stomach and back are giving me lots of pain. Taking diluadid but not helping much. Onc was nice enough to tell my primary doc but not me that my time was short, how short he didn't say. Dec. 06 PET scan showed some retrocrural lymph nodes lightig up but they appeared normal on CT scan
It seems the immediate problem is this liquid edema blocking the liver drainage. I asked why we couldn't go in and drain that or remove it and he said no surgeon would touch me with liver numbers that high but how else can we get rid of that blockage without going in? I'm not getting much help here. I don't know how log my liver will continue to function at these levels and if the swelling gets any bigger it will block it off entirely.
Onc thinks the answer is to change the irinitican to a lower dose every week and add erbitux. He thinks that will shrink the swelling That sounds like BS to me. Common sense dictates if your liver has a partial blocking of the waste exit and you have cirrosis issues then pouring more toxins in doesn't seem like a good idea to me. I've had a hard time tolerating this CPT-11 and judging from the disease progression it isn't working in fact it seems like the cancer likes the stuff. I've been 15 months since surgery with no visible tumors, now after two doses of this stuff they are popping out all over. Any ideas? What can be done to deal with this blockage so the liver can drain properly? Is there anything or should I call the priest?
Prior CT examination 12/14/06 showed none of this
Findings: There is marked interval worsening in the patient's disease burden. Most notably, there is now bulky adenopathy at the root of the mesentery extending up into the porta hepatis and posterior to the pancreas. There is also some adenopathy extending down the aortic chain and into the right retrocrural area. This is all concerning for metastic disease.
The bulky adenopathy in the porta hepatis appears to be compromising the lymphatic drainage as there is now periportal edema, predominantly in the left hepatic lobe. I do not see evidence of actual metastasis to the liver, however.
There also are at least two, punctate, subcentimeter nodules idenified in the right lung base that were not clearly present previously. This may represent very early metastatic desease to the right lung base as well. There is stable diverticular desease to the sigmoid colon, without diverticulitis.
***Impression:
1. Marked interval worsening in the appearance of the abdomen and pelvis with extensive adenopathy at the root of the mesentery, extending to the retroperitoneum and up into the porta hepatis.
2. The adenopathy appears to be compromising the lymphatic drainage from the liver as there is now periportal edema.
3. Punctate, subcentimeter nodules in the right lung base. These were not present previously and are also concerning for possible early metastatic disease.
 Signature "Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, Starbucks in the other, totally worn out and screaming, "WOO HOO what a ride!"
Howard McCollister - 25 Mar 2007 01:55 GMT > Can you help this fella? He is visually impaired so I am posting his plea > for help here. Any words of wisdom will be appreciated. [quoted text clipped - 69 lines] > not present previously and are also concerning for possible early > metastatic disease. I'm a little handicapped by not knowing what the original cancer was, but, regardless it appears to have extended quite rapidly. Of the various organ systems affected by the metastatic process, it's the blockage of the common bile duct and probably portal vein that are causing you the most symptoms - they reside in the porta hepatis and the tumor appears to be choking them off..
Surgery to improve drainage there is really a bad idea. The porta hepatis is a tricky place to work under the best of circumstances and in this situation the risks far outweigh the benefits. Even if such an operation were possible and doing it extended your life, it's unlikely that it would extend it much beyond the recovery from the operation. In this situation, the only thing that might be considered would be using CT or ultrasound to guide one or more catheters through the skin and into the liver bile ducts. Without imaging or knowing you, there's no way I could guess whether or not it's feasible - it's something you should ask your doctors about though...percutaneous transhepatic bile duct cannulation. By decreasing the jaundice, some of your symptoms may ameliorate. It may not be possible if your coagulation is affected, or if your venous pressures are too high from compression of the portal vein.
Whatever it is you have, I'm sure you're aware that it's past the point of reversal and is rapidly advancing as the tumor burden exponentially increases. I'm sure it's the goal of your doctors to keep you as comfortable as possible over these next few weeks, and I hope they can accomplish that.
HMc
betsyb - 25 Mar 2007 02:08 GMT  Signature "Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body, but rather to skid in sideways, chocolate in one hand, Starbucks in the other, totally worn out and screaming, "WOO HOO what a ride!"
>> Can you help this fella? He is visually impaired so I am posting his plea >> for help here. Any words of wisdom will be appreciated. [quoted text clipped - 98 lines] > > HMc Howard I am posting this to alt.support.cancer. John cannot get this group on webtv. Thank you for responding so quickly. BetsyB
J W - 25 Mar 2007 02:23 GMT Thank you Mr. McCollister for answering me I am a stage 4 colon cancer patient. I was diagnosed 12/22/05 with large mucosal mass on right ascending colon with signet ring cell mets to omentum and peritoneum. Debulking surgery to remove the mass as well as omentum and peritoneum was done on 12/23/05 all visible cancer was removed with clean margins, 13 of 13 lymph nodes checked positive for cancer. I have gone through one chemo protocal last year of folfox with avastin which helped but disease still progressed. That ended in sept 06. I was sent to baltimore to Dr Esquivel st agnes hospital in january this year for cytoreductive surgery with HIPEC (heated interperitoeal chemo) this procedure was not done because when he went in laproscopcaly to look, no cancer or implants were seen in the peritoneal cavity. This new developement has been a complete suprise as I was fine and walking 3 miles a day just a few weeks ago and Prior CT examination 12/14/06 showed none of this. My primary doctor at first suggested a stint via endocopic method to open up the blockage but for some unknown reason my oncologist told her no. My CEA has however continued to climb I started a second chemo protocal of irinitican or CPT-11 every 3 weeks roughly 8 weeks ago. Prior to getting these first two doses of irinitican or CPT-11 at the strongest dose I was fine except for a high CEA of 215. If I'm reading this CT scan report right (scan report posted below), the bulky adenopathy in the porta hepatis is blocking my lymph nodes from draining. So now I've got swollen lymph nodes all over the place. 3 weeks ago my blood tests showed normal bilirubin, ALT & AST, only alkaline phophotase was high at 300 but that's been running high for over 6 months and had actually come down from 400. Now the CEA is 331, bilirubin is 2.2, ALT & AST are off the chart at 551 & 422. I'm completely jaundice,itchy all over, pee is ice tea color, liver, stomach and back are giving me lots of pain. Taking diluadid but not helping much. My oncologist was nice enough to tell my primary doctor but not me that my time was short, how short he didn't say. Dec. 06 PET scan showed some retrocrural lymph nodes lightig up but they appeared normal on CT scan It seems the immediate problem is this liquid edema blocking the liver drainage. I asked why we couldn't go in and drain, remove or put in a stint it and he said no because no surgeon would touch me with liver numbers that high but how else can we get rid of that blockage without going in? I'm not getting much help here. I don't know how long my liver will continue to function at these levels and if the swelling gets any bigger it will block it off entirely. My oncologist thinks the answer is to change the irinitican to a lower dose every week instead of every 3 weeks and add erbitux. He thinks that will shrink the swelling That doesn't sound right to me. Common sense dictates if your liver has a partial blocking of the waste exit and you have cirrosis issues from prior chemo then pouring more toxins in doesn't seem like a good idea to me. I've had a hard time tolerating this CPT-11 and judging from the disease progression it isn't working in fact it seems like the cancer likes the stuff. I've been 15 months since surgery with no visible tumors, now after two doses of this stuff they are popping out all over. Any ideas? What can be done to deal with this blockage so the liver and lymph nodes can drain properly? Is there anything that can be done or should I call the priest? I mean up until I started this CPT-11 a few weeks I felt fine despite rising CEA and was walking 3 miles a day with no motor problems or pain, now it sounds like they are just writing me off.
3/21/07 CT SCAN REPORT Findings: There is marked interval worsening in the patient's disease burden. Most notably, there is now bulky adenopathy at the root of the mesentery extending up into the porta hepatis and posterior to the pancreas. There is also some adenopathy extending down the aortic chain and into the right retrocrural area. This is all concerning for metastic disease. The bulky adenopathy in the porta hepatis appears to be compromising the lymphatic drainage as there is now periportal edema, predominantly in the left hepatic lobe. I do not see evidence of actual metastasis to the liver, however. There also are at least two, punctate, subcentimeter nodules idenified in the right lung base that were not clearly present previously. This may represent very early metastatic desease to the right lung base as well. There is stable diverticular desease to the sigmoid colon, without diverticulitis. ***Impression: 1. Marked interval worsening in the appearance of the abdomen and pelvis with extensive adenopathy at the root of the mesentery, extending to the retroperitoneum and up into the porta hepatis. 2. The adenopathy appears to be compromising the lymphatic drainage from the liver as there is now periportal edema. 3. Punctate, subcentimeter nodules in the right lung base. These were not present previously and are also concerning for possible early metastatic disease.
Howard McCollister - 25 Mar 2007 14:37 GMT > Thank you Mr. McCollister for answering me I am a stage 4 colon cancer > patient. I was diagnosed 12/22/05 with large mucosal mass on right [quoted text clipped - 13 lines] > open up the blockage but for some unknown reason my oncologist told her > no. A stent placed across the sphincter of Oddi via ERCP is a often a consideration in cases of obstructive jaundice due to tumor compression, but it's not usually possible at this advanced stage. I still think consideration should be given to transhepatic drainage as I mentioned, though - it's the only way they might be able to get your bilirubin down and relieve you of the jaundice and its effects.
As near as I can tell from your description, you have had pretty much state-of-the-art treatment. I understand the emotional ups and downs you've been through since December of '05 and I'm desperately sorry that you're in this situation after such a valiant fight.
HMc
J - 25 Mar 2007 21:29 GMT > > Thank you Mr. McCollister for answering me I am a stage 4 colon cancer > > patient. I was diagnosed 12/22/05 with large mucosal mass on right [quoted text clipped - 27 lines] > > HMc Thank you, Dr. McCollister. Transheptaic drainage, technically simple? http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=7 101105&dopt=Abstract>
Does not extend life but palliative, is my read on that.
<http://www.blackwell-synergy.com/links/doi/10.1111/j.1572-0241.1999.01622.x/abs/>
"Although endoscopic procedures exist that relieve jaundice or restore enteral nutrition, they can be impossible to perform for technical or anatomical reasons. We propose a palliative approach for these patients that includes transcutaneous common bile duct drainage, progressive dilation of the transhepatic channel over 1 wk, and, finally, insertion of a permanent silicon catheter that drains bile into the duodenum and is combined with an enteral feeding line. We report three patients whose metastatic abdominal tumors had led to simultaneous jaundice and gastric outlet obstruction, neither of which could be treated endoscopically. In all patients, the transcutaneous bile drainage catheter combined with the enteral feeding line was inserted and tumor symptoms resolved rapidly. As a result, the patients chose to return to home care with enteral nutrition and pain medication."
Would he find a surgeon searching sages? http://www.sages.org/ or another webpage? Or do you know of some. He's in the Palm Coast, Fla area. Thank you. J
Howard McCollister - 26 Mar 2007 15:32 GMT >> > Thank you Mr. McCollister for answering me I am a stage 4 colon cancer >> > patient. I was diagnosed 12/22/05 with large mucosal mass on right [quoted text clipped - 68 lines] > Thank you. > J Yes, palliative only. No, not technically simple. Usually, it wouldn't be a surgeon doing that, it would be an interventional radiologist. I have no idea if Jon is a suitable candidate, based on anatomy or his current medical condition.
Sorry, I don't know of any specific doctors in that area, but transhepatic drainage is a relatively high-powered technique and more likely to be found in larger medical centers. Florida is kind of a land unto itself relative to medical care there. The only high-powered institution that comes to my mind is Mayo Clinic Jacksonville.
HMc
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