Mucinous Adenocarcinoma

zigswife
zigswife Member Posts: 61
edited March 2014 in Colorectal Cancer #1
In my obsessive reading about all the details of my husband's cc, I am finding that the characteristic of being "mucinous" is not fantastic. Are there other stage IVs out there who have this characteristic of their tumors- I would feel much better hearing from you!

Thanks!
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Comments

  • polarprincess
    polarprincess Member Posts: 202 Member
    #2
    hi
    I am not stage IV but i responded on another thread about 2 people i knew from my hospital that had the mucinous adenocarcinoma..and i know years later they are both still alive and disease free..in fact one is running a daycare.. so hopefully that gives you some hope!!
  • zigswife
    zigswife Member Posts: 61
    #3
    polarprincess said:

    hi
    I am not stage IV but i responded on another thread about 2 people i knew from my hospital that had the mucinous adenocarcinoma..and i know years later they are both still alive and disease free..in fact one is running a daycare.. so hopefully that gives you some hope!!

    Thank you so much!

    Thank you so much!
  • trish07
    trish07 Member Posts: 138
    #4
    zigswife said:

    Thank you so much!

    Thank you so much!

    Husband with mucinous carcinomas...
    My husband has been battling this rare condition since Nov.07. When you have time maybe you could give some backround of your experiences. I would love to be a support to you. Also stage IV.
    Bless you and take care, Trish
  • bdee
    bdee Member Posts: 304
    #5
    Mucinous Adenocarcinoma
    I was diagnosed as Stage IV with mucinous adenocarcinoma in January 2009. I had ten pounds of the mucous removed then four liters of sterile water flushed out the rest. I now have seven tumors under or around my spleen, liver, lower right and left abdominal cavity and in the perinatal wall. I was on oxialplatin, 5FU and Avastin for the first three months, but the oxi was killing me faster than the cancer would, so now I'm only on 5fu and Avastin since March. My tumors are not going away, four are slightly larger and three are slightly smaller. I have some pain from the tumors, but my CEA is only 3.4 so my doctor will not suggest any more surgeries or a bone scan until my CEA reaches 5.
    My husband and I have read so much on mucinous adenocarcinoma and talked to other doctors who tell us that the heated chemo is really the only way to get rid of the tumors. But Arkansas does not have a doctor who performs this procedure and the one person I know personally who went through the procedure still has tumors. More than I do, so we are not going to go that route unless we have to.
    If you want to get in touch with me, please don't hesitate.

    Debbie
  • bdee
    bdee Member Posts: 304
    #6
    trish07 said:

    Husband with mucinous carcinomas...
    My husband has been battling this rare condition since Nov.07. When you have time maybe you could give some backround of your experiences. I would love to be a support to you. Also stage IV.
    Bless you and take care, Trish

    Mucinous carcinomatosis
    How is your husband doing? I was diagnosed in January 2009 and still reading all kinds of scary statistics. What chemo is your husband on?
    I, also, am Stage IV but my doctor calls it Stage IV colon cancer.

    Debbie
  • zigswife
    zigswife Member Posts: 61
    #7
    bdee said:

    Mucinous Adenocarcinoma
    I was diagnosed as Stage IV with mucinous adenocarcinoma in January 2009. I had ten pounds of the mucous removed then four liters of sterile water flushed out the rest. I now have seven tumors under or around my spleen, liver, lower right and left abdominal cavity and in the perinatal wall. I was on oxialplatin, 5FU and Avastin for the first three months, but the oxi was killing me faster than the cancer would, so now I'm only on 5fu and Avastin since March. My tumors are not going away, four are slightly larger and three are slightly smaller. I have some pain from the tumors, but my CEA is only 3.4 so my doctor will not suggest any more surgeries or a bone scan until my CEA reaches 5.
    My husband and I have read so much on mucinous adenocarcinoma and talked to other doctors who tell us that the heated chemo is really the only way to get rid of the tumors. But Arkansas does not have a doctor who performs this procedure and the one person I know personally who went through the procedure still has tumors. More than I do, so we are not going to go that route unless we have to.
    If you want to get in touch with me, please don't hesitate.

    Debbie

    Debbie-
    I'm not sure the
    Debbie-
    I'm not sure the extent to which this characteristic will play a roll in my husband's treatment and they way they described it is that the tumors have musinous features. The only thing the doctors have really mentioned about it is that it may make it difficult for the tumors to show up on the PET scans. All the other information I've seen on it is from reading on the internet and it seems that there are some varying opinions about how it changes the prognosis. I would love to get some information from you about what you've found out about it!
  • bdee
    bdee Member Posts: 304
    #8
    zigswife said:

    Debbie-
    I'm not sure the
    Debbie-
    I'm not sure the extent to which this characteristic will play a roll in my husband's treatment and they way they described it is that the tumors have musinous features. The only thing the doctors have really mentioned about it is that it may make it difficult for the tumors to show up on the PET scans. All the other information I've seen on it is from reading on the internet and it seems that there are some varying opinions about how it changes the prognosis. I would love to get some information from you about what you've found out about it!

    Tumors
    My tumors showed up fine on my first PET scan right before my surgery, but I'm not having another PET scan until my CEA reaches 5. I know all seven of them show up on my CT Scans. I have one of those every three months. Has your husband had surgery yet? Was mucous removed?

    Debbie
  • zigswife
    zigswife Member Posts: 61
    #9
    bdee said:

    Tumors
    My tumors showed up fine on my first PET scan right before my surgery, but I'm not having another PET scan until my CEA reaches 5. I know all seven of them show up on my CT Scans. I have one of those every three months. Has your husband had surgery yet? Was mucous removed?

    Debbie

    It sounds like its a feature
    It sounds like its a feature of the tumors but they're still relatively small so it doesn't sound like they've gotten too out of control yet. Our surgeon (for the colon resection) said we should have the PET scan (What? The UVA oncologist said it wouldn't show up?!?) so we are waiting to get the appointment for it. I'm hoping the PET scan will help determine any other spots (there is some discussion about where else it is showing up) of concern. My goal is for them to take as much of his liver as they need to so that they can get all that *&@#$ out of there!
  • bdee
    bdee Member Posts: 304
    #10
    zigswife said:

    It sounds like its a feature
    It sounds like its a feature of the tumors but they're still relatively small so it doesn't sound like they've gotten too out of control yet. Our surgeon (for the colon resection) said we should have the PET scan (What? The UVA oncologist said it wouldn't show up?!?) so we are waiting to get the appointment for it. I'm hoping the PET scan will help determine any other spots (there is some discussion about where else it is showing up) of concern. My goal is for them to take as much of his liver as they need to so that they can get all that *&@#$ out of there!

    My tumors
    My tumors are in anything, they are around in under my spleen liver and all around my abdominal cavity. According to my onc, he will be doing the PET scan to determine if the cancer has spread outside of the abdominal cavity. I'm scared about that.
    Did you husband have a lot of mucous taken out of his abdomen when he was operated on? Did the mucous start in his appendix?

    Debbie
  • taipei
    taipei Member Posts: 33 Member
    #11
    mucinous adenocarcinoma
    I was dx with this kind of charcteristic of tumors on June 2003, met to liver and lungs, after surgeries, 3 kinds chemo, I am ned since aug 2007, praise the Lord.
  • bdee
    bdee Member Posts: 304
    #12
    taipei said:

    mucinous adenocarcinoma
    I was dx with this kind of charcteristic of tumors on June 2003, met to liver and lungs, after surgeries, 3 kinds chemo, I am ned since aug 2007, praise the Lord.

    What chemo?
    I would like to know the name of the chemo drugs you took. Maybe I can ask my doctor about them because he's not giving me that much hope of ever being ned, just keeping the tumors down with 5FU and Avastin.

    Thanks and congrats,
    Debbie
  • zigswife
    zigswife Member Posts: 61
    #13
    bdee said:

    My tumors
    My tumors are in anything, they are around in under my spleen liver and all around my abdominal cavity. According to my onc, he will be doing the PET scan to determine if the cancer has spread outside of the abdominal cavity. I'm scared about that.
    Did you husband have a lot of mucous taken out of his abdomen when he was operated on? Did the mucous start in his appendix?

    Debbie

    Debbie-
    I responded to your
    Debbie-
    I responded to your post and my computer got unhappy and apparently the post never made it- sorry! Anyway, the onc said there was mucous in the cells so it sounds like it is a characteristic of the tumor rather than something it is actively producing (especially since the mass in his colon had apparently been there for about five years).

    Have you had the PET scan yet? One onc said the tumors wouldn't show up on the PET scan but the surgeon said they could and has ordered one. I'm curious as to whether yours showed up or not.
  • bdee
    bdee Member Posts: 304
    #14
    zigswife said:

    Debbie-
    I responded to your
    Debbie-
    I responded to your post and my computer got unhappy and apparently the post never made it- sorry! Anyway, the onc said there was mucous in the cells so it sounds like it is a characteristic of the tumor rather than something it is actively producing (especially since the mass in his colon had apparently been there for about five years).

    Have you had the PET scan yet? One onc said the tumors wouldn't show up on the PET scan but the surgeon said they could and has ordered one. I'm curious as to whether yours showed up or not.

    PET scan
    I had a PET scan the day before my surgery, but not since then. My surgery was in late January. My onc says he won't do another one until my CEA has gone back up to 5, now it is 3.4. It goes up every month, so I am expecting another PET in October. I do have CT Scans every three months and the tumors show up fine on them, even my littlest tumor at .8cm.

    My mass was fast growing. DId your husband's mass start in his appendix?

    Debbie
  • zigswife
    zigswife Member Posts: 61
    #15
    bdee said:

    PET scan
    I had a PET scan the day before my surgery, but not since then. My surgery was in late January. My onc says he won't do another one until my CEA has gone back up to 5, now it is 3.4. It goes up every month, so I am expecting another PET in October. I do have CT Scans every three months and the tumors show up fine on them, even my littlest tumor at .8cm.

    My mass was fast growing. DId your husband's mass start in his appendix?

    Debbie

    It started in his colon and
    It started in his colon and has spread to his liver, most likely to a pancreatic lymph node, and hopefully that's it. We get the PET scan on Wednesday- do you remember how long it took before the results were available for yours?
  • bdee
    bdee Member Posts: 304
    #16
    zigswife said:

    It started in his colon and
    It started in his colon and has spread to his liver, most likely to a pancreatic lymph node, and hopefully that's it. We get the PET scan on Wednesday- do you remember how long it took before the results were available for yours?

    PET scan
    The surgeon had the results the very next day before my surgery which was at 8:30 a.m.

    Debbie
  • trish07
    trish07 Member Posts: 138
    #17
    bdee said:

    What chemo?
    I would like to know the name of the chemo drugs you took. Maybe I can ask my doctor about them because he's not giving me that much hope of ever being ned, just keeping the tumors down with 5FU and Avastin.

    Thanks and congrats,
    Debbie

    bdee- and zigswife; started in Appendix
    Wanted to make sure you saw my post, so I started a new topic titled mucinous adenocarcinoma of the appendix- Stage 1V.
  • taipei
    taipei Member Posts: 33 Member
    #18
    first was
    first was folfiri(5fu,leucovorin, camptosar) for about one year, then folfox about 6times, stabilzed, for 6mo, third was avastin and xeloda for maintence, about 11 months, then left lower lung wedage resection, aug 07 had right side wedage resected. Hope this would help, God bless you.
  • taipei
    taipei Member Posts: 33 Member
    #19
    ct scan result
    I had abdomen and chest scan on 8/26/2009, saw the onc this morning, his is happy, I am happy, another NED scan, Praise the Lord. God bless you all.
  • juliebeth
    juliebeth Member Posts: 21
    #20
    just joined
    What is your husband's status now. I have mucinous adenocarinoma of the app. stage 4.
  • juliebeth
    juliebeth Member Posts: 21
    #21
    taipei said:

    first was
    first was folfiri(5fu,leucovorin, camptosar) for about one year, then folfox about 6times, stabilzed, for 6mo, third was avastin and xeloda for maintence, about 11 months, then left lower lung wedage resection, aug 07 had right side wedage resected. Hope this would help, God bless you.

    surgery
    I have been told that if you have ca in the lung then you cannot have surgery. Who did your surgery

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