Need help makidng decision for Maintenance stage of PPC

Dorthyann
Dorthyann Member Posts: 3
in Ovarian Cancer #1
So glad to find this site - the success stories are so encouraging and discussions so informative.

I was orginally diagnosed with stage 4 ovarian cancer by on oncologist in FL. He did not offer any encouragement for curing or maintaining my cancer. I came home to IL and went to the Cancer Treatment Center in Zion IL which has been wonderful. They have been very encouraging and so far very successful with the treatment.

My cancer has been correctly diagonised as Primary Peritoneal Carcinoma. I have had 6 treatments of taxol/carboplatin. My blood tests now show all tumor markers down (below acceptable range) and the C Scan was good. Because I responded so well I now have two options for my next step.
1. Surgery plus Heated Intraperitoneal Chemo (The chemo is circulated in the abdomen after surgery and before the incision is closed.) Is major surgery and requires 1-4 wks in the hospital.
2. Additional chemo treatments (6) with the drug Avastin. Avastin is easier to tollerate so will not feel as tired etc. as with the first rounds of chemo but it can cause perforation of the instestines.

Would love to hear from anyone who has knowledge or experience with eilther of the above. I am having a hard time making the decision.

Comments

  • upsofloating
    upsofloating Member Posts: 466 Member
    #2
    That's great that you have
    That's great that you have responded well to the chemo teatment. A number of posters on the Uterine board have a similar cancer -uterine papillary serous ca, behaves and is treated essentially as ovca and ppc. Songflower who posts there underwent that surgical treatment in the past year and could provide insights for you. Re the Avastin issues - a recent study that I believe was posted on this site found incidence perforations were mostly in those whose treatment included surgical intervention on intestines. You could research this for your decisionmaking. These are just suggestions as I have no experience with either. I have upsc, initial diff diagnosis upsc vs ovca vs ppc.
    I am sure you will hear from others who may have more exprience than I.
    Take care. Annie
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #3
    upsofloating said:

    That's great that you have
    That's great that you have responded well to the chemo teatment. A number of posters on the Uterine board have a similar cancer -uterine papillary serous ca, behaves and is treated essentially as ovca and ppc. Songflower who posts there underwent that surgical treatment in the past year and could provide insights for you. Re the Avastin issues - a recent study that I believe was posted on this site found incidence perforations were mostly in those whose treatment included surgical intervention on intestines. You could research this for your decisionmaking. These are just suggestions as I have no experience with either. I have upsc, initial diff diagnosis upsc vs ovca vs ppc.
    I am sure you will hear from others who may have more exprience than I.
    Take care. Annie

    IP chemo vs Avastin
    Dorothy: Welcome to the board and sorry you have to meet us this way.

    You have a very difficult decision to make and you will most likely get more information that you know what to do with.

    Re: Surgery--There is a surgical technique called "the Sugarbaker procedure" for PPC that is an extensive & radical debulking surgery that includes removal of a LOT of internal organs. Before you sign up with surgery, have a big discussion with the gyn/onc who will be doing your surgery so that you know what to expect. It sounds like you have some time to make your decision as you are not pending a bowel obstruction.

    Since you initially sought treatment at Cancer Treatment Center of America (did I understand you correctly?), you may do better than the average person diagnosed with PPC and may be able to avoid surgery. The cancer can never be removed completely surgically--however, with ovarian cancer (which often splatters all over the pelvic/abdominal cavity), the best outcome for survival is related to the skill of the surgeon in doing "optimal debulking" (to remove as much visible cancer as possible).

    Re: Avastin--I recall the risk of complications with Avastin as being those who had cancer implants on the intestions were more at risk for bowel perforation as the tumors died off from the cancer having the blood supply cut off. If you do a search for the word "Avastin" above, you will see all the postings from survivors who have used/are using Avastin. I think the best use of Avastin is with a second chemo agent; although there are some women making progress using Avastin as a single agent.

    Re: intraperitoneal (IP) chemo--That's another topic that you can do a discussion board search on. I have not had that experience and I am thankful that it was not an option for me. I read research on the quality of life after doing IP chemo and there was more fatigue and depression in the women who had IP vs IV chemo--I think the "progression-free survival" for IP chemo is very similar to those who were using "dose-dense taxol" which is a lower dose weekly taxol treatment.

    Tina Brown posted about a long-term PPC survivor so you have every reason to be hopeful that you will be one, too.

    Best wishes with your treatment decision.
  • lulu1010
    lulu1010 Member Posts: 367
    #4
    Good to have options
    I too am a PPC patient. I was treated with carbo first and then I had hoped for the surgery with the IP but ended up just having robotic surgery so was not able to have the heated IP.I have a neighbor who had it and has done well although the circumstances were a little different. I plan to have that heated IP in my arsenal of weapons if I ever need and get the chance to use it.
    I really dont have any info about the Avastin. I am sure you can find others with much knowledge about it. I used carbo/taxol after surgery and I am almost finished with it.
    Making decisions has never been easy for me and I have found it one of the most stressful parts of this disease. All I can tell you is to get as much info as you can and I am sure you are in good hands at the Cancer Treatment Center and they can answer questions and give you good guidance. Best of luck! I will pray that you make the best decision and get healthy soon.Hugs!
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #5
    LaundryQueen said:

    IP chemo vs Avastin
    Dorothy: Welcome to the board and sorry you have to meet us this way.

    You have a very difficult decision to make and you will most likely get more information that you know what to do with.

    Re: Surgery--There is a surgical technique called "the Sugarbaker procedure" for PPC that is an extensive & radical debulking surgery that includes removal of a LOT of internal organs. Before you sign up with surgery, have a big discussion with the gyn/onc who will be doing your surgery so that you know what to expect. It sounds like you have some time to make your decision as you are not pending a bowel obstruction.

    Since you initially sought treatment at Cancer Treatment Center of America (did I understand you correctly?), you may do better than the average person diagnosed with PPC and may be able to avoid surgery. The cancer can never be removed completely surgically--however, with ovarian cancer (which often splatters all over the pelvic/abdominal cavity), the best outcome for survival is related to the skill of the surgeon in doing "optimal debulking" (to remove as much visible cancer as possible).

    Re: Avastin--I recall the risk of complications with Avastin as being those who had cancer implants on the intestions were more at risk for bowel perforation as the tumors died off from the cancer having the blood supply cut off. If you do a search for the word "Avastin" above, you will see all the postings from survivors who have used/are using Avastin. I think the best use of Avastin is with a second chemo agent; although there are some women making progress using Avastin as a single agent.

    Re: intraperitoneal (IP) chemo--That's another topic that you can do a discussion board search on. I have not had that experience and I am thankful that it was not an option for me. I read research on the quality of life after doing IP chemo and there was more fatigue and depression in the women who had IP vs IV chemo--I think the "progression-free survival" for IP chemo is very similar to those who were using "dose-dense taxol" which is a lower dose weekly taxol treatment.

    Tina Brown posted about a long-term PPC survivor so you have every reason to be hopeful that you will be one, too.

    Best wishes with your treatment decision.

    PPC cancer free
    That is right. I have a girl friend who has PPC and has been cancer free for almost 4 years. She had ascites and her numbers were in the thousands at diagnosis but she is cancer free. She is now on 6 monthly check ups and her numbers are always in single figures.

    Tina xx
  • kikz
    kikz Member Posts: 1,345 Member
    #6
    lulu1010 said:

    Good to have options
    I too am a PPC patient. I was treated with carbo first and then I had hoped for the surgery with the IP but ended up just having robotic surgery so was not able to have the heated IP.I have a neighbor who had it and has done well although the circumstances were a little different. I plan to have that heated IP in my arsenal of weapons if I ever need and get the chance to use it.
    I really dont have any info about the Avastin. I am sure you can find others with much knowledge about it. I used carbo/taxol after surgery and I am almost finished with it.
    Making decisions has never been easy for me and I have found it one of the most stressful parts of this disease. All I can tell you is to get as much info as you can and I am sure you are in good hands at the Cancer Treatment Center and they can answer questions and give you good guidance. Best of luck! I will pray that you make the best decision and get healthy soon.Hugs!

    I had ip chemo
    post surgery but not the way you describe. I had it through a port in my abdomen. It made me feel like...well, not good but the results are excellent. My current CA125 is three. I am 7 months out from my last chemo and do feel tired a lot. I also have a lot of aches and pains but for the most part I feel great. Welcome and hope you find this board as helpful as I have.

    Karen
  • Cafewoman53
    Cafewoman53 Member Posts: 735 Member
    #7
    Avastin
    I am currently getting six rounds( every 21 days ) of Avastin after completing six rounds of carbo/taxol I was diagnosed IIIc with vascular and lymph involement. If you trust your drs. go with their judgement they are the experts. The Avastin is much easier to take so far a minor rise in blood pressure and joint and muscle pain which limits my daily movements but I had bad arthritis before the Avastin. Good Luck
    Colleen

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