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christine22
christine22 Member Posts: 7
in Peritoneal Cancer #1
Hi im new i just found you guys and have had ppc for 3 yrs.I went to my OB GYN and kept complaining for yrs about pain she sent me for an ultrasound and did a pap smear and said there was nothing there!This didnt happen just once it happened many times and i felt like she thought i was a hypocondriact(sry for spelling)So i went to my PC and he sent for a ct scan and found it ! Unfortunately it was stage 3 by then!I went for my debulking surgery had a full hysterectomy did 6 rounds of chemo (carbo and taxol) I went into remission for 3 yrs and now its back and im scared to death!! My Dr wants to start me on chemo again the same kind and im wondering if there is anything else out there that would work? I have seen Doxil come up a few times and Xyotol can someone tell me about them and the side effects.Oh my Dr also said my ppc is very slow growing. I just read an article that recurring ppc is basicly down hill from there.I am so glad i found this it is so hard talking to my family they say they understand but they dont.





Christine

Comments

  • stella65
    stella65 Member Posts: 152
    #2
    Hello
    Hi Christine, goodness you had a good remission, I am sorry you have had it creep back but you do understand that this type of cancer does not go away as such but can be stablized for periods of time, no body knows for how long but 3 yrs seems very good, I hope you can have more chemo and keep it at bay for another 3, everyone here understands what you are going through so you will get support and hopefully some answers to your questions. My mum first went to the doc with pain and they said they could find nothing, she felt like you, that they thought she was imagining it all! Even now they have found the PPC they still insist the pain is not the cancer! But the hospice she went to for pain managment have got it under control at last, for which we are all very grateful. Lots of love to you, SueX
  • Carolyn68
    Carolyn68 Member Posts: 39
    #3
    Christine, I think that is the nature of this beast...to re-occur....I am 18 months of remission....PPC Stage 3c, full hysterectomy, omentum removed. June 2010....carbo/taxol/avastin 6 months, Avastin for 16 months. Just finished Avastin Oct 27th. Go back to see onc in two weeks. My onc has given me a good prognosis...she says many of her patients get to the 10 year mark....she has never talked to me about re-occurrence....but she knows I know. I am 61 and a healthy person before all this started...many times you will read where people have 2-3 re-occurences.....many times with same drug that has worked before. I believe DOXIL is a discontinued drug....lots on news lately about it... that is good your PPC is very slow growing, because usually they say it grows rapidly. Stay aboard....there is lots of support here.....no, family has no clue, other than to help out and be your support....but, we can't do this without them. Some people don't realized how serious PPC is....but, it has come along way in the last 5 years...pray that we are good stats...and I think so far, you are! Hang in there....good luck...and prayers your way...
  • christine22
    christine22 Member Posts: 7
    #4
    Carolyn68 said:

    Christine, I think that is the nature of this beast...to re-occur....I am 18 months of remission....PPC Stage 3c, full hysterectomy, omentum removed. June 2010....carbo/taxol/avastin 6 months, Avastin for 16 months. Just finished Avastin Oct 27th. Go back to see onc in two weeks. My onc has given me a good prognosis...she says many of her patients get to the 10 year mark....she has never talked to me about re-occurrence....but she knows I know. I am 61 and a healthy person before all this started...many times you will read where people have 2-3 re-occurences.....many times with same drug that has worked before. I believe DOXIL is a discontinued drug....lots on news lately about it... that is good your PPC is very slow growing, because usually they say it grows rapidly. Stay aboard....there is lots of support here.....no, family has no clue, other than to help out and be your support....but, we can't do this without them. Some people don't realized how serious PPC is....but, it has come along way in the last 5 years...pray that we are good stats...and I think so far, you are! Hang in there....good luck...and prayers your way...

    Thank you so much and any information is greatly welcomed. I am going for a 2nd opinion at Yale New Haven Hospital i am hoping they can tell me more then my Dr has.As i read every ones posts i write things down to ask my Dr.I am hoping Yale can do more for me since it is a much bigger Hospital.I am also curious about the port put in the belly (Intraperitoneal Chemo) I have also heard that your 1st remission is your longest after that it comes comes back sooner? Again Thank you for your help and thoughts and prayers!! Christine
  • christine22
    christine22 Member Posts: 7
    #5
    stella65 said:

    Hello
    Hi Christine, goodness you had a good remission, I am sorry you have had it creep back but you do understand that this type of cancer does not go away as such but can be stablized for periods of time, no body knows for how long but 3 yrs seems very good, I hope you can have more chemo and keep it at bay for another 3, everyone here understands what you are going through so you will get support and hopefully some answers to your questions. My mum first went to the doc with pain and they said they could find nothing, she felt like you, that they thought she was imagining it all! Even now they have found the PPC they still insist the pain is not the cancer! But the hospice she went to for pain managment have got it under control at last, for which we are all very grateful. Lots of love to you, SueX

    Thank You
    Thank you for responding I hope i can get it into remission again but my Dr told me the first remission is the longest after that it comes back quickly so this time i have to leave my port in which i hate. i guess its time to get my wigs out and scarves :( Thank you again Christine
  • TexanByChoice
    TexanByChoice Member Posts: 44
    #6
    christine22 said:

    Thank you so much and any information is greatly welcomed. I am going for a 2nd opinion at Yale New Haven Hospital i am hoping they can tell me more then my Dr has.As i read every ones posts i write things down to ask my Dr.I am hoping Yale can do more for me since it is a much bigger Hospital.I am also curious about the port put in the belly (Intraperitoneal Chemo) I have also heard that your 1st remission is your longest after that it comes comes back sooner? Again Thank you for your help and thoughts and prayers!! Christine

    First welcome Christine. I know what you are feeling. I was DX in Aug. 2009. Had basically the same surgery with a little extra, did 6 courses of taxol/carbo and was NED until Feb 2011 (not as long as you); then my CA 125 went up from 4.9 to 40, back on another 6 treatments same chemo. OK until Jan 2012 and CA marker back up from 6.1 to 13.4. Will have blood drawn again end of month....so scared. But my doctor said that the periods of NED would be shorter and if it is back, she may want to add AVASTIN or after another 6 rounds, put me on maintenance of taxol alone for a year. :( None of this sounds inviting. wish you well and who knows you may get another 3 yrs of NED. Prayers are with you. The fact is, there is no cure so we just hafta do our best. Hope you get good news at Yale.

    Shirley
  • MarisaUK54
    MarisaUK54 Member Posts: 41
    #7
    TexanByChoice said:

    First welcome Christine. I know what you are feeling. I was DX in Aug. 2009. Had basically the same surgery with a little extra, did 6 courses of taxol/carbo and was NED until Feb 2011 (not as long as you); then my CA 125 went up from 4.9 to 40, back on another 6 treatments same chemo. OK until Jan 2012 and CA marker back up from 6.1 to 13.4. Will have blood drawn again end of month....so scared. But my doctor said that the periods of NED would be shorter and if it is back, she may want to add AVASTIN or after another 6 rounds, put me on maintenance of taxol alone for a year. :( None of this sounds inviting. wish you well and who knows you may get another 3 yrs of NED. Prayers are with you. The fact is, there is no cure so we just hafta do our best. Hope you get good news at Yale.

    Shirley

    Avastin
    Hello ladies...

    I live in London and was diagnosed in October 2010. I am in remission from PPC Stage IIIc since having my last chemo in April 2011. Pretty much the same as you lovely ladies, full hysterectomy, de-bulking, 6 rounds of Carbo/Taxol and then monitoring 3 monthly when they check my CA125 levels. All good so far and the last reading was 8(from 1800 at diagnosis), which is great and I hope it will continue that way for as long as possible but could you tell me what Avastin is?
    I have read the word over and over again here and presume it is some kind of maintenance drug but would love you or indeed anyone to explain. I don't know if it is used here in the UK but any knowledge is useful should I need treatment again.

    Wishing you all the courage to fight; I was told this was only given to the strong...

    Fondly,
    Marisa

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