Mucinous ovarian Cancer

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MrCLINY
MrCLINY Member Posts: 10
edited December 2014 in Ovarian Cancer #1

Ok, hello. I'm new here. My wife was discovered to have a Mucinous Ovarian cancer seventeen months ago. Had surgery to remove a softball size tumor at that time. She was told she was stage IIIA. Since it was Ovarian cancer of the Mucinous type was started out with Oxalipatin and 5FU. This did not work as her CA125 and more importantly CA19.9 numbers went up. So a second group of drugs was tried, Gemzar and Abraxane. After awhile the numbers again went up. A third drug was added Avastin to the mix, which seemed to work but she than had a very bad reaction to the Avastin. So the chemo was stopped and a PET scan was done and a new 4 inch tumor was found on her stomach. This was removed almost a year to the day of her first surgery. A third drug was than use Carboplatin-Taxol. After the last treatment again like the first two after first coming down the numbers are going up. Her CA125 was down to 6 but is back up to 19 but the CA19.9 is up to 430. I have notice no one here talks about CA19.9 numbers yet for a Mucinous cancer that is more important than CA125. The question is is there anyone else fighting a Ovarian Mucinous cancer?

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  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #2
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    Hi MrCLINY

    I am so sorry that your wife is in this battle.  While I myself have not been diagnosed with mucinous ovarian cancer, there may be other women on this board who have been and who can respond to you with their personal experience. 

    Sending lots of positive thoughts and prayers to you and your wife that the next treatment produces positive results.

    Kelly

  • MrCLINY
    MrCLINY Member Posts: 10
    #3
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    PET Scan

    Ok, so got the PET Scan reading the other day. The Oncologist went over it and the latist blood test. Even though the CA numbers all went up, he did not seemed overly concerned at this time? The scan read. " a focus of intense hypermetabolism in the posterior pelvis with a maximum SUV of 8.5 fused to a loop of small bowel. likely represents a small implant. Also a new focus of intense hypermetabolism with max SUV of 5.4 which correlates with 6x4 mm node, consistent a nodal metastasis. "

    Now this does not sound good to me but he has taken my wife off chemo for a couple of months to give her a rest since he feels things do not look to serious. Aways had a good feeling with this doctor but not completely comfortable.

    Thanks for you good wishes Kelly

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member
    #4
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    MrCLINY said:

    PET Scan

    Ok, so got the PET Scan reading the other day. The Oncologist went over it and the latist blood test. Even though the CA numbers all went up, he did not seemed overly concerned at this time? The scan read. " a focus of intense hypermetabolism in the posterior pelvis with a maximum SUV of 8.5 fused to a loop of small bowel. likely represents a small implant. Also a new focus of intense hypermetabolism with max SUV of 5.4 which correlates with 6x4 mm node, consistent a nodal metastasis. "

    Now this does not sound good to me but he has taken my wife off chemo for a couple of months to give her a rest since he feels things do not look to serious. Aways had a good feeling with this doctor but not completely comfortable.

    Thanks for you good wishes Kelly

    Hi MrCLINY

    I do not know what the results of the scan mean.  Ask the oncologist to explain more clearly why he believes that things do not look too serious.  If you and your wife still are not completely comfortable, can you get a second opinion from another oncologist?

    Kelly

  • MrCLINY
    MrCLINY Member Posts: 10
    #5
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    Update

    Well it's been awhile and things are ok at this time. Saw the Oncologist the other day and he seems happy with the last blood test. The CA19 & CA125 numbers have been steady for the last two blood test, at 124 and 7. So he is keeping my wife off of chemo for another couple of months to give her a rest. Yet we know there was activity seen on the last PET scan. Wife feels fine just tires fast. THe only problems at this time is her right leg lymphedema ( which she most wrap each night and wear a special stocking all day ). Plus due to a blood clot that was found in her arm, must take a shot each morning of a blood thinner. Even with all that she is happy to be off chemo for awhile. I'm the only one worried since she does not like to talk about what could be going on, so we don't. 

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
    #6
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    MrCLINY said:

    Update

    Well it's been awhile and things are ok at this time. Saw the Oncologist the other day and he seems happy with the last blood test. The CA19 & CA125 numbers have been steady for the last two blood test, at 124 and 7. So he is keeping my wife off of chemo for another couple of months to give her a rest. Yet we know there was activity seen on the last PET scan. Wife feels fine just tires fast. THe only problems at this time is her right leg lymphedema ( which she most wrap each night and wear a special stocking all day ). Plus due to a blood clot that was found in her arm, must take a shot each morning of a blood thinner. Even with all that she is happy to be off chemo for awhile. I'm the only one worried since she does not like to talk about what could be going on, so we don't. 

    Wish I had a hubby, but then,

    Wish I had a hubby, but then, I would only want one like you who is out there reading, looking, and asking the questions! 

    You can only get so much chemo in your life, so a break with hopes that she doesn't have to go back to it might be a good approach. 

    Not familiar with a CA19 - but I am going to look for it now.  How often does your wife see the gyn/onc?  Every 3 months? 

  • MrCLINY
    MrCLINY Member Posts: 10
    #7
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    Numbers up

    Well it looks like my wife's marker numbers are starting to go back up. After three low test numbers in a row, this has put her in a negative place of mind. Plus she is starting to have pain and uncomfortable feelings in her stomach area. While her next meeting with her Oncologist is still a month away, I think a call to him is in order. Jo had a good summer off of chemo but I feel that it may have also given the cancer a running start. In truth I was fearing the stomach pain and discomfort. As to what route the Oncologist will take this time, I have no idear.

  • MrCLINY
    MrCLINY Member Posts: 10
    #8
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    MrCLINY said:

    Numbers up

    Well it looks like my wife's marker numbers are starting to go back up. After three low test numbers in a row, this has put her in a negative place of mind. Plus she is starting to have pain and uncomfortable feelings in her stomach area. While her next meeting with her Oncologist is still a month away, I think a call to him is in order. Jo had a good summer off of chemo but I feel that it may have also given the cancer a running start. In truth I was fearing the stomach pain and discomfort. As to what route the Oncologist will take this time, I have no idear.

    Ascities and Pleural Effusion

    While it seems Joann has developed both ascites of the abdomen and Pleural Effusion of the lung. Both being malignant. She had 2 liters removed the other day from the abdomen. While she is feeling fine ( except for her lymphedema of right leg ) her CA19.9 & CA125 numbers have started to go up. Her Oncologist has even suggested that we try Avastin again. Since she had such a bad reaction to it last time, it sounds almost like he is out of ideas and this is a last ditch effort. The chemo, Doxil can cause heart trouble and so can Avastin, both at the same time worries me. It is up to Jo if she's going to try it but I just don't know. I guess need to just trust in the Doctor and God.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,369 Member
    #9
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    MrCLINY said:

    Ascities and Pleural Effusion

    While it seems Joann has developed both ascites of the abdomen and Pleural Effusion of the lung. Both being malignant. She had 2 liters removed the other day from the abdomen. While she is feeling fine ( except for her lymphedema of right leg ) her CA19.9 & CA125 numbers have started to go up. Her Oncologist has even suggested that we try Avastin again. Since she had such a bad reaction to it last time, it sounds almost like he is out of ideas and this is a last ditch effort. The chemo, Doxil can cause heart trouble and so can Avastin, both at the same time worries me. It is up to Jo if she's going to try it but I just don't know. I guess need to just trust in the Doctor and God.

    MrCLINY, I am not a doctor so

    MrCLINY, I am not a doctor so I will pray to God for you and your wife.

  • ioanna
    ioanna Member Posts: 43
    #10
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    MrCLINY said:

    Ascities and Pleural Effusion

    While it seems Joann has developed both ascites of the abdomen and Pleural Effusion of the lung. Both being malignant. She had 2 liters removed the other day from the abdomen. While she is feeling fine ( except for her lymphedema of right leg ) her CA19.9 & CA125 numbers have started to go up. Her Oncologist has even suggested that we try Avastin again. Since she had such a bad reaction to it last time, it sounds almost like he is out of ideas and this is a last ditch effort. The chemo, Doxil can cause heart trouble and so can Avastin, both at the same time worries me. It is up to Jo if she's going to try it but I just don't know. I guess need to just trust in the Doctor and God.

    MrCliny I am really sorry for

    MrCliny I am really sorry for your wife. She shouldn't have to go through this. No one should. Have you tried asking another doctor? A second opinion may help you more than you think..

  • MrCLINY
    MrCLINY Member Posts: 10
    #11
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    ioanna said:

    MrCliny I am really sorry for

    MrCliny I am really sorry for your wife. She shouldn't have to go through this. No one should. Have you tried asking another doctor? A second opinion may help you more than you think..

    Happy New Year ??

    Well, as to talking to a second Doctor, Jo has had two Ongologist since almost day one. Since the cancer is of a mucinous type, her Ovarian Ongologist brought in a very highly thought of colon Ongologist ( since most colon cancers are mucinous ). In fact for most of Jo's treatments he was in the lead. That is till his including avastin in the chemo and I almost lost her. Than he wanted Jo to have HEPIC surgery. When we desided it was to radical, he dropped her as a patient. The other day ( New Years eve ) one of the nurses from the hospital called to check on Jo and remind her about this weeks doctors appointment. She also told Jo her marker numbers have tripled. Kind of put a Happy New Year in the dumps for Jo. So we are going in Monday to see the Ongologist and see where do we go from here. Thank you for your interest and support.

  • abrub
    abrub Member Posts: 2,174 Member
    #12
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    MrCLINY said:

    Happy New Year ??

    Well, as to talking to a second Doctor, Jo has had two Ongologist since almost day one. Since the cancer is of a mucinous type, her Ovarian Ongologist brought in a very highly thought of colon Ongologist ( since most colon cancers are mucinous ). In fact for most of Jo's treatments he was in the lead. That is till his including avastin in the chemo and I almost lost her. Than he wanted Jo to have HEPIC surgery. When we desided it was to radical, he dropped her as a patient. The other day ( New Years eve ) one of the nurses from the hospital called to check on Jo and remind her about this weeks doctors appointment. She also told Jo her marker numbers have tripled. Kind of put a Happy New Year in the dumps for Jo. So we are going in Monday to see the Ongologist and see where do we go from here. Thank you for your interest and support.

    Alternative to HIPEC

    At Memorial Sloan Kettering, in NYC, they do a different Intraperitoneal chemo for the mucinous tumors - I had it for my appendix cancer (which was found on my ovary, and is commonly misdiagnosed as ovarian cancer.)  At 7+ years out from a Stage 4 dx, I am doing great.

    I don't know where you are, if MSK is an option, but that might be worth considering.  PM me if you have questions - I don't follow these boards as much any more (but do get notified if there is a Private Message.)

    Alice

  • Huppy
    Huppy Member Posts: 2
    #13
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    abrub said:

    Alternative to HIPEC

    At Memorial Sloan Kettering, in NYC, they do a different Intraperitoneal chemo for the mucinous tumors - I had it for my appendix cancer (which was found on my ovary, and is commonly misdiagnosed as ovarian cancer.)  At 7+ years out from a Stage 4 dx, I am doing great.

    I don't know where you are, if MSK is an option, but that might be worth considering.  PM me if you have questions - I don't follow these boards as much any more (but do get notified if there is a Private Message.)

    Alice

    Hi,
    im new to the site. I

    Hi,

    im new to the site. I live in singapore & my wife's ovca story sounds very much like mrcliny's. Also mucinous with ambiguous origin.So far we've been on carbo/plaitxel & most recently oxyliplatin/avastin/xeloda. Ca19.9 trending up to 280. Last ct scan was clean. thinking of hipec now.  you seem to have been successful in your treatments. Could you tell me what IP combination you had at MSK?

    thanks!

    Huppy

  • Huppy
    Huppy Member Posts: 2
    #14
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    MrCLINY said:

    Happy New Year ??

    Well, as to talking to a second Doctor, Jo has had two Ongologist since almost day one. Since the cancer is of a mucinous type, her Ovarian Ongologist brought in a very highly thought of colon Ongologist ( since most colon cancers are mucinous ). In fact for most of Jo's treatments he was in the lead. That is till his including avastin in the chemo and I almost lost her. Than he wanted Jo to have HEPIC surgery. When we desided it was to radical, he dropped her as a patient. The other day ( New Years eve ) one of the nurses from the hospital called to check on Jo and remind her about this weeks doctors appointment. She also told Jo her marker numbers have tripled. Kind of put a Happy New Year in the dumps for Jo. So we are going in Monday to see the Ongologist and see where do we go from here. Thank you for your interest and support.

    Hi MrCLINY,
    I hope this

    Hi MrCLINY,

    I hope this message finds you & Jo well.  

    I am new to this site but I can't help but read the similarities between Jo's & my wife's case. She's also mucinous ovca dx in 2013. At that time they thought it was borderline with unknown origin. A year before she had a hysterectomy for stage 0 cervical tumor. So we went for the 6 cycles of carbo/placitaxel & 25 sessions of radiation after which the ca19.9 started trending up. A laproscopic biopsy revealed some atypical cell changes around the abdomen.  So had 4 rounds of oxyliplatin/avastin with oral xeloda.  The markers actually dropped quite a lot, before going up again.  CA19.9 is currently around 280.

    CT is now being scheduled & HIPEC is being suggested now...

    Apart from some numbness in the fingers, fatigue & more frequent urination, she is generally very well & still works full time.

    Please let me know how you both are getting on....I hope we can find a way to beat this.

    God bless

    Huppy

  • kavitale@yahoo.com
    kavitale@yahoo.com Member Posts: 1
    #15
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    Mucinous Ovarian Cancer

    HI....I was diagnosed in 2013 with stage 1A mucinous ovarian cancer.  Docs were able to remove it.  It was the size of a 6-month fetus.  Started Chemo right after surgery for total hysterectomy and other things.  My CA125 numbers have been going up very very slowly now almost 2 years after.  Am still within normal range, but the jump from 9 three months ago to 15.2 today is alarming.  I went to a seminar hosted by a slew of gynecological oncologists and unfortunately, not much is known about mucinous cancer.  They "think" it's genetic..but that's about it.  Frustrating for me to not know more..but there's really not a lot written about it.

  • anicca
    anicca Member Posts: 334 Member
    #16
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    Look at this post

    May be helpful re new treatment approaches.

     

    http://csn.cancer.org/node/290205

  • Trp35
    Trp35 Member Posts: 2
    #17
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    I was diagnosed 2years ago with mucinous ovarian cancer

    hello... well my ovarian cancer has returned:( anybody else out there still?

  • marinagorevski
    marinagorevski Member Posts: 4
    #18
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    abrub said:

    Alternative to HIPEC

    At Memorial Sloan Kettering, in NYC, they do a different Intraperitoneal chemo for the mucinous tumors - I had it for my appendix cancer (which was found on my ovary, and is commonly misdiagnosed as ovarian cancer.)  At 7+ years out from a Stage 4 dx, I am doing great.

    I don't know where you are, if MSK is an option, but that might be worth considering.  PM me if you have questions - I don't follow these boards as much any more (but do get notified if there is a Private Message.)

    Alice

    I need more info

    Hello Alice,

    will you please give me more info about the HIPEC alternative? My email is marinagorevski@gmail.com

    thank you

    marina

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #19
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    marinagorevski said:

    I need more info

    Hello Alice,

    will you please give me more info about the HIPEC alternative? My email is marinagorevski@gmail.com

    thank you

    marina

    New Topic

    Hi Marina,

    You may wnat to start a new discussion to have your question addressed.  This is an old thread and your question might be missed.

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