Treat the high CEA or wait?
Steven
Comments
-
CEA up
Hi Steven,
I have not had the same experience as you but would just like to set the record straight in case there is a misunderstanding. When your CEA goes up and your oncologist suggests treatment, you are not treating the CEA. CEA is just a tool in monitoring cancer activity. It does not always work as a good tool for some people (IE they could have very low CEA levels and yet have very active cancer in their bodies). The fact that once your CEA level started rising and you had a PET scan which showed traces in your lymph nodes and mets in your abdomen/pelvis (??), then that probably indicates to your oncologist that there is cancer activity starting to act up.
Did they decide that the "light traces" of mets (I've never heard that term before... either there are mets or there aren't... they could be very small right now, is that what you mean by light traces?) were too small to do surgery, or that surgery is not an option? The chemo is one form of treatment to shrink the mets and possibly keep them under control so that they don't grow.
What you need to do is sit down with your oncologist and ask just what is it that was found and what are the treatment options for them. The chemo is not to bring the CEA levels down, but to shrink the mets/lesions/tumours. As they shrink or, if possible, are killed off, then the CEA will naturally lower.
Does this make sense?
Hugggggs,
Cheryl0 -
In the same boat, considering both paddles!
I am in the same boat as you, although my CEA doesn't tend to get QUITE as high as yours. Mine was around 100 at last recurrence prior to surgery to remove a tumor the size of a soccer ball. Did 6 months followup chemo (initially I was diagnosed IIIA, did resection and 6 months chemo). I am 2+ years out since the surgery for my last recurrence and my CEA is beginning to climb once again. I did as you did, back in January I began another round of chemo (FOLFIRI) to get the numbers back down. It did go down, but only 2.5 points. At last appt, which was last week, my CEA is up to 19 and has been on a steady incline over the past few months. CT and PETs only show a minor "possible" in my midline fascia lower abdomen. Onc suggested going back on chemo. As far as I'm concerned, 2.5 points wasn't enough to justify the crap that is FOLFIRI! For now, I am continuing with Avastin every 3 weeks. I figure whatever is trying to organize in there is getting zapped and deprived of it's blood supply every 3 weeks, so I'm good with that until further evidence of recurrence. I DID read something that I will probably follow up on 1st of the year. If you have scattered metastasese in the abdomen, lots of tiny implants, they don't tend to show up on any scans because they tend to be too flat and small individually to show up. Could possibly be what's occurred, especially in light of the recurrence I had on my right ovary, in my omentum and a few small tumors in the fat lining of my abdominal wall. I had large amounts of ascites that was drained regularly while i was waiting for surgery. I didn't have the hot chemo wash at that time, they thought my cancer was a new primary. I will probably meet with Dr. Levine at Baptist Hospital to discuss the possibility of scatter metastasis and having tumor reduction/removal in combo with the hot chemo bath (I think it's referred to as HIPEC). I'm with you, man, the chemo just sucks, and I need evidence that it's worth it before moving forward. Strangely, I am more up for the possibility of surgery than I am for IV chemo... I guess because it's shorter duration and relatively fewer side effects, although the Heated IntraPEritoneal Chemotherapy (I think that's what it stands for) can be pretty rough. Just what I'm considering, how about you?
mary0 -
Hot chemo washmsccolon said:In the same boat, considering both paddles!
I am in the same boat as you, although my CEA doesn't tend to get QUITE as high as yours. Mine was around 100 at last recurrence prior to surgery to remove a tumor the size of a soccer ball. Did 6 months followup chemo (initially I was diagnosed IIIA, did resection and 6 months chemo). I am 2+ years out since the surgery for my last recurrence and my CEA is beginning to climb once again. I did as you did, back in January I began another round of chemo (FOLFIRI) to get the numbers back down. It did go down, but only 2.5 points. At last appt, which was last week, my CEA is up to 19 and has been on a steady incline over the past few months. CT and PETs only show a minor "possible" in my midline fascia lower abdomen. Onc suggested going back on chemo. As far as I'm concerned, 2.5 points wasn't enough to justify the crap that is FOLFIRI! For now, I am continuing with Avastin every 3 weeks. I figure whatever is trying to organize in there is getting zapped and deprived of it's blood supply every 3 weeks, so I'm good with that until further evidence of recurrence. I DID read something that I will probably follow up on 1st of the year. If you have scattered metastasese in the abdomen, lots of tiny implants, they don't tend to show up on any scans because they tend to be too flat and small individually to show up. Could possibly be what's occurred, especially in light of the recurrence I had on my right ovary, in my omentum and a few small tumors in the fat lining of my abdominal wall. I had large amounts of ascites that was drained regularly while i was waiting for surgery. I didn't have the hot chemo wash at that time, they thought my cancer was a new primary. I will probably meet with Dr. Levine at Baptist Hospital to discuss the possibility of scatter metastasis and having tumor reduction/removal in combo with the hot chemo bath (I think it's referred to as HIPEC). I'm with you, man, the chemo just sucks, and I need evidence that it's worth it before moving forward. Strangely, I am more up for the possibility of surgery than I am for IV chemo... I guess because it's shorter duration and relatively fewer side effects, although the Heated IntraPEritoneal Chemotherapy (I think that's what it stands for) can be pretty rough. Just what I'm considering, how about you?
mary
Mary,
My husband has colon cancer dx Jan 2006. When they went in to do the first surgery, they found many seedlings on his peritineal wall, so on the second surgery they removed most of the wall and did the hot chemo wash - here in Cananda they call it The SugarBaker Protocol. What they did to Bill was to swish the hot chemo (104 degrees) all around the abdomin for 90 minutes after surgery was complete. Then they sewed him up and inserted 4 tubes into the abdomin, they then put 1 liter of hot chemo in thru the tubes and they leave it in for 23 hours - drain it out and leave dry for 1 hour, and they filled him up again for another 23 hours. This they did for 5 days straight. This did make him feel ill, as well as him having the pressure in the abdomin area. We were told if he had that proceedure that he chances of NED were good. I am sure that it did get a lot of the seedlings that may have been left behind. He did however have a reoccurance this spring when it spread to his bladder, so now he not only has an illostomy, but an illoconduit as well (a small price to pay). His Cea level has also been rising (it has been a good marker for him). He has been in constant pain in the tailbone area since the surgery in March. They told us they THINK it is cancer, but cannot tell from the CT scan. Mean while he has ended up in the hospital twice with what has turned out to be abcesses in that area, and it has had to be drained both times. He was to start radiation on the 9th, but the abcess reoccured and he ended up in the hospital, so for the time being radiation has been put on hold. We are starting to think that this is an abcess and not cancer. They are planning to do another CT scan and see if there is any change there. It makes me very mad that they would think to put him thru the radiation when they are not positive that the cancer has reoccured. Plus just before this happened they told Bill that they may go with 30 treatments after they told us 3 weeks earlier that 25 was the max - has anyone heard of them doing 30? They said they wanted to go agressive. I think someone up above was watching out for us in the instance, and now they will do more testing and blood tests before proceeding.
Merry Christmas & all the best in the New Year!
Sue0 -
thank you for the informationCanadaSue said:Hot chemo wash
Mary,
My husband has colon cancer dx Jan 2006. When they went in to do the first surgery, they found many seedlings on his peritineal wall, so on the second surgery they removed most of the wall and did the hot chemo wash - here in Cananda they call it The SugarBaker Protocol. What they did to Bill was to swish the hot chemo (104 degrees) all around the abdomin for 90 minutes after surgery was complete. Then they sewed him up and inserted 4 tubes into the abdomin, they then put 1 liter of hot chemo in thru the tubes and they leave it in for 23 hours - drain it out and leave dry for 1 hour, and they filled him up again for another 23 hours. This they did for 5 days straight. This did make him feel ill, as well as him having the pressure in the abdomin area. We were told if he had that proceedure that he chances of NED were good. I am sure that it did get a lot of the seedlings that may have been left behind. He did however have a reoccurance this spring when it spread to his bladder, so now he not only has an illostomy, but an illoconduit as well (a small price to pay). His Cea level has also been rising (it has been a good marker for him). He has been in constant pain in the tailbone area since the surgery in March. They told us they THINK it is cancer, but cannot tell from the CT scan. Mean while he has ended up in the hospital twice with what has turned out to be abcesses in that area, and it has had to be drained both times. He was to start radiation on the 9th, but the abcess reoccured and he ended up in the hospital, so for the time being radiation has been put on hold. We are starting to think that this is an abcess and not cancer. They are planning to do another CT scan and see if there is any change there. It makes me very mad that they would think to put him thru the radiation when they are not positive that the cancer has reoccured. Plus just before this happened they told Bill that they may go with 30 treatments after they told us 3 weeks earlier that 25 was the max - has anyone heard of them doing 30? They said they wanted to go agressive. I think someone up above was watching out for us in the instance, and now they will do more testing and blood tests before proceeding.
Merry Christmas & all the best in the New Year!
Sue
Sue, I appreciate the info on your husband's experience. The HIPEC doesn't include anything after the initial 90 minutes of abdomenal wash (at least what I was going to get didn't). They cut out what they can, temporarily close up the abdomen, wash it for 90 minutes with the hot chemo, then reopen and close all incisions (with the idea of attacking all open incisions with the chemo before closing them). You have to be in ICU for at least 3 days. I haven't heard of the continual wash for 5 days; that must have been hell for all of you! Sounds like he is definitely having a go with it and I hope he feels better soon. Actually, I believe the difficulty of the procedure is really the reason why I didn't get it during my last recurrence surgery; my mother was dying of lung cancer and if I had had that procedure done, it's a good bet i wouldn't have been lucid enough to speak with her before she died. As it was, I wasn't able to make the 7 hour drive to be with her, but my brother picked me up and brought me there for the funeral. I know that God has a plan and he knew I needed to be there when my mother passed and be there for my girls as they mourned their Nanny.
I agree with you about not starting radiation until they can confirm that there actually is a recurrence of cancer that will respond to such treatment! UMMMMM exactly what are they going to radiate if they don't confirm? An already infected area? Oh, I am sure THAT would be pleasant and successful! NOT!!!! You keep on them to find what is causing your husband's pain!
Merry Christmas and God be with you now and into the future.
mary0 -
Sugarbaker Protocolmsccolon said:thank you for the information
Sue, I appreciate the info on your husband's experience. The HIPEC doesn't include anything after the initial 90 minutes of abdomenal wash (at least what I was going to get didn't). They cut out what they can, temporarily close up the abdomen, wash it for 90 minutes with the hot chemo, then reopen and close all incisions (with the idea of attacking all open incisions with the chemo before closing them). You have to be in ICU for at least 3 days. I haven't heard of the continual wash for 5 days; that must have been hell for all of you! Sounds like he is definitely having a go with it and I hope he feels better soon. Actually, I believe the difficulty of the procedure is really the reason why I didn't get it during my last recurrence surgery; my mother was dying of lung cancer and if I had had that procedure done, it's a good bet i wouldn't have been lucid enough to speak with her before she died. As it was, I wasn't able to make the 7 hour drive to be with her, but my brother picked me up and brought me there for the funeral. I know that God has a plan and he knew I needed to be there when my mother passed and be there for my girls as they mourned their Nanny.
I agree with you about not starting radiation until they can confirm that there actually is a recurrence of cancer that will respond to such treatment! UMMMMM exactly what are they going to radiate if they don't confirm? An already infected area? Oh, I am sure THAT would be pleasant and successful! NOT!!!! You keep on them to find what is causing your husband's pain!
Merry Christmas and God be with you now and into the future.
mary
Hi Mary,
We were lucky because there are only 4 or 5 doctors in all of Canada who do that proceedure and we had to travel 300 miles to have it done. It was really rough and he had to spend 4 days in a high observation surgical room. But if we knew it would increase his chances he would do it again. After his last surgery in March to remove his bladder they just did the 90 minute wash again - which did make him ill.
I am not comfortable with the radiologist doctor, and have all spoken to the head of patient services at the cancer centre, and she will help us to change doctors in a flash if need be. I can see myself becoming this doctor's worst nightmare... But until they can say without a doubt that it is cancer we will not be doing the radiation. But in the mean time they have to do another surgery to get rid of the abcess that keeps reoccuring.
Hugs,
Sue0 -
Treat the high CEA or wait?CherylHutch said:CEA up
Hi Steven,
I have not had the same experience as you but would just like to set the record straight in case there is a misunderstanding. When your CEA goes up and your oncologist suggests treatment, you are not treating the CEA. CEA is just a tool in monitoring cancer activity. It does not always work as a good tool for some people (IE they could have very low CEA levels and yet have very active cancer in their bodies). The fact that once your CEA level started rising and you had a PET scan which showed traces in your lymph nodes and mets in your abdomen/pelvis (??), then that probably indicates to your oncologist that there is cancer activity starting to act up.
Did they decide that the "light traces" of mets (I've never heard that term before... either there are mets or there aren't... they could be very small right now, is that what you mean by light traces?) were too small to do surgery, or that surgery is not an option? The chemo is one form of treatment to shrink the mets and possibly keep them under control so that they don't grow.
What you need to do is sit down with your oncologist and ask just what is it that was found and what are the treatment options for them. The chemo is not to bring the CEA levels down, but to shrink the mets/lesions/tumours. As they shrink or, if possible, are killed off, then the CEA will naturally lower.
Does this make sense?
Hugggggs,
Cheryl
First of all many thanks to everybody taking part in this discussion. Most of my reply however applies to Cheryl's discussion. Thanks Cheryl very much but I must say there is a misunderstading as it was in my first subject about "Spontantenious CEA drop". I know very much that it is not the CEA what we need here to treat or eventually cure. What I tried to point out is that in my case, up to now, there is no strong evidence of the actual recurrence of the desease. My doctors are saying "probably", "supposedly" etc. this and this spot of 2mm ( 1mm=40mils ) on the scan could mean met's, blah, blah, blah. Please don't misunderstand me again, based on the high CEA I strongly beleive that I have a recurrent CC but I want to see ( or feel ) more what we could see on the scans. You might know even healthy people have darker, brighter areas and spots on a CT scan. My onco doesn't beleive much of the PET scan which was actually ordered by my surgen. This showed again some very questionable spots of possible metabolistic activity. He said PET scans are still not reliable enough. He was regularly ordering the CT scans, however in these two years there are no spots on the series of CT scans which are growing at all! And in this two year periode I was on chemo only about 4 months. He still relying on couple of small spots the radiologist found. Even the radiologist is pointing out that there are no tumors or ascites anywhere on the scans. Finally, I didn't mention yet, two years ago when my CEA went up and after the first CT showed some places of possible met's, my surgen ( together with me ) decided to do a small operation and take those spots out. This turned out to be a mistake, he could not find anything but healthy tissue. Afterwards he named that surgery: "Exploratory surgery". I hope now you can understand why I am questioning: do I need to suffer from chemo now, basically just to suppress the high CEA, or wait when the recurrence become more evident. This could also give you an idea why I am interested in cases ( if that could happen at all? ) when the CEA spontaneously goes down. Thanks, and all the Best, Steven0 -
Number of treatmentsCanadaSue said:Hot chemo wash
Mary,
My husband has colon cancer dx Jan 2006. When they went in to do the first surgery, they found many seedlings on his peritineal wall, so on the second surgery they removed most of the wall and did the hot chemo wash - here in Cananda they call it The SugarBaker Protocol. What they did to Bill was to swish the hot chemo (104 degrees) all around the abdomin for 90 minutes after surgery was complete. Then they sewed him up and inserted 4 tubes into the abdomin, they then put 1 liter of hot chemo in thru the tubes and they leave it in for 23 hours - drain it out and leave dry for 1 hour, and they filled him up again for another 23 hours. This they did for 5 days straight. This did make him feel ill, as well as him having the pressure in the abdomin area. We were told if he had that proceedure that he chances of NED were good. I am sure that it did get a lot of the seedlings that may have been left behind. He did however have a reoccurance this spring when it spread to his bladder, so now he not only has an illostomy, but an illoconduit as well (a small price to pay). His Cea level has also been rising (it has been a good marker for him). He has been in constant pain in the tailbone area since the surgery in March. They told us they THINK it is cancer, but cannot tell from the CT scan. Mean while he has ended up in the hospital twice with what has turned out to be abcesses in that area, and it has had to be drained both times. He was to start radiation on the 9th, but the abcess reoccured and he ended up in the hospital, so for the time being radiation has been put on hold. We are starting to think that this is an abcess and not cancer. They are planning to do another CT scan and see if there is any change there. It makes me very mad that they would think to put him thru the radiation when they are not positive that the cancer has reoccured. Plus just before this happened they told Bill that they may go with 30 treatments after they told us 3 weeks earlier that 25 was the max - has anyone heard of them doing 30? They said they wanted to go agressive. I think someone up above was watching out for us in the instance, and now they will do more testing and blood tests before proceeding.
Merry Christmas & all the best in the New Year!
Sue
Sue,
I don't know if it helps, but I am on #20 of 28 radiations. They told me 25 was the initial course, then they do 3 smaller 'booster shots'. I say they can shoot me as much as it takes to get the tumor. I know it doesn't answer your other question "is it necessary?", but it's what I know from my experience.
God Bless, Vicki0 -
treatmentsVickiCO said:Number of treatments
Sue,
I don't know if it helps, but I am on #20 of 28 radiations. They told me 25 was the initial course, then they do 3 smaller 'booster shots'. I say they can shoot me as much as it takes to get the tumor. I know it doesn't answer your other question "is it necessary?", but it's what I know from my experience.
God Bless, Vicki
Vicki,
Thanks for your reply. So I am guessing that 30 is not out of the question.
I guess now we just have to wait and see.
Thanks,
Sue0 -
updatemsccolon said:In the same boat, considering both paddles!
I am in the same boat as you, although my CEA doesn't tend to get QUITE as high as yours. Mine was around 100 at last recurrence prior to surgery to remove a tumor the size of a soccer ball. Did 6 months followup chemo (initially I was diagnosed IIIA, did resection and 6 months chemo). I am 2+ years out since the surgery for my last recurrence and my CEA is beginning to climb once again. I did as you did, back in January I began another round of chemo (FOLFIRI) to get the numbers back down. It did go down, but only 2.5 points. At last appt, which was last week, my CEA is up to 19 and has been on a steady incline over the past few months. CT and PETs only show a minor "possible" in my midline fascia lower abdomen. Onc suggested going back on chemo. As far as I'm concerned, 2.5 points wasn't enough to justify the crap that is FOLFIRI! For now, I am continuing with Avastin every 3 weeks. I figure whatever is trying to organize in there is getting zapped and deprived of it's blood supply every 3 weeks, so I'm good with that until further evidence of recurrence. I DID read something that I will probably follow up on 1st of the year. If you have scattered metastasese in the abdomen, lots of tiny implants, they don't tend to show up on any scans because they tend to be too flat and small individually to show up. Could possibly be what's occurred, especially in light of the recurrence I had on my right ovary, in my omentum and a few small tumors in the fat lining of my abdominal wall. I had large amounts of ascites that was drained regularly while i was waiting for surgery. I didn't have the hot chemo wash at that time, they thought my cancer was a new primary. I will probably meet with Dr. Levine at Baptist Hospital to discuss the possibility of scatter metastasis and having tumor reduction/removal in combo with the hot chemo bath (I think it's referred to as HIPEC). I'm with you, man, the chemo just sucks, and I need evidence that it's worth it before moving forward. Strangely, I am more up for the possibility of surgery than I am for IV chemo... I guess because it's shorter duration and relatively fewer side effects, although the Heated IntraPEritoneal Chemotherapy (I think that's what it stands for) can be pretty rough. Just what I'm considering, how about you?
mary
I have, indeed, followed up on requesting an appointment with Dr. Levine at Baptist. I am scheduled to meet with him on Feb 4th; I am psyched! I hate just waiting around for something, or nothing as appears to be Steven's case, to show up to prove the CEA! I am going to see what he has to say about the probability of peritoneal implants, etc. I will have to go online and get as much information as possible so I am ready with the right questions when I go in!
mary0 -
Holey Freaking Moley!!msccolon said:update
I have, indeed, followed up on requesting an appointment with Dr. Levine at Baptist. I am scheduled to meet with him on Feb 4th; I am psyched! I hate just waiting around for something, or nothing as appears to be Steven's case, to show up to prove the CEA! I am going to see what he has to say about the probability of peritoneal implants, etc. I will have to go online and get as much information as possible so I am ready with the right questions when I go in!
mary
I had never heard of a hot chemo wash before. I swear I will never complain about any ache or pain again knowing how you went through that hell!! My aches and pains seem very trivial compared to that! Mary, the absolute best of luck to you if you go through that! You'll be on my wall of fame!!
Jorie0 -
CEA hot chemo washMoonDragon said:Holey Freaking Moley!!
I had never heard of a hot chemo wash before. I swear I will never complain about any ache or pain again knowing how you went through that hell!! My aches and pains seem very trivial compared to that! Mary, the absolute best of luck to you if you go through that! You'll be on my wall of fame!!
Jorie
I've never heard of the hot chemo washes before either. Just got on this support network. Had colon cancer, tumor that spread out of colon, into overy and lymph nodes. My CEA was only 7. So for me is not good indicator. Had surgery and chemo, which I quit early. Now just having colonoscopy every 2 years and CEA level every 4 months. Never had a PET scan. No insurance, medicaid only at this point. Does anyone think I am not being monitored enough? It has been four years now.
Pam0 -
Update
I spoke with Dr. Levine on Feb 4th as scheduled and surprise, surprise, he also believes it's peritoneal implants. After much consideration, I have scheduled to have the IPHC procedure done on May 18th. He sent me home with a cute little brochure and I will include my favorite parts: "Disseminated Peritoneal Cancer (DPC) is an advanced stage of cancer that is spread widely on the lining surfaces of the abdominal cavity...Untreated, DPC is always fatal". Thanks for THAT information! "...Removal of the tumor may involve the removal of various organs that are not considered essential for life ... the gall bladder, the spleen, the colon, omentum, the stomach..." In other words, we can just leave the abdominal cavity empty, with various tubes going to the outside of your body for egress and ingress of nutrition!
On another note, on Thursday I will be involved with a media event regarding colon cancer awareness! Yea!!! A few local newspapers and even a small radio station is expected! The usual educational information will be included, but I will be part of the portion where actual survivors of the disease, at various stages of survival, will be allowed to tell our story! Since I tend to have a big mouth, I get to go first when it's our turn! I'm thinking I will TRY to make it short, so the others have a chance to speak, but once you get me started, watch out!
ETA: original date of 25th was changed to 18th
mary0
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