Not the news I wanted to hear: platinum resistant/more surgery needed

pjdreams
pjdreams Member Posts: 77
in Ovarian Cancer #1
I was diagnosed with recurrent ovarian cancer back in November 2010, started 6 rounds of carbo/taxol (which put me in almost 1 year remission back in 2009). Along with the chemo I was on a research trial for morab. Found out last week that the numerous tumors in my abdomen are not shrinking (initially scans showed some shrinkage). but now they are not shrinking a new tumor has developed on my right abdominal wall. There is also a mass near my colon his worried about along with one near my liver and who knows where else. He said it's like sand all over the abdomen.

So after 4 of the 6 infusions, chemo was stopped (including the morab). I'm scheduled for debulking surgery this week along with possible colon resectioning.

My original diagnoses was Stage 1 grade 2 clear cell (had the usual surgery and 6 rounds of carbo/taxol) so we are quite devastated with this latest development. The doctor says I will surely get more chemo following the debulking surgery if they can find one that is non-platinum based to kill any remaining microscopic cells.

I'm especially worried about the possibility of a colon re-sectioning/colostomy. Has anyone had had experience with this ?

Prayers are appreciated.

Paula

Comments

  • Mwee
    Mwee Member Posts: 1,338
    #2
    hugs being sent your way
    I had a colon resection with my original debulking surgery. I was told that about 9 inches of my colon was removed and that it was replaced by large intestine that would take over the job. That was back in 2006. I did not have to have a colostomy, although I know that others on this board have. Best of luck with your surgery!
    (((HUGS))) Maria
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #3
    good luck
    You'd think stage 1 would buy you a lot more time but I know that clear cell is a nasty bugger. I stopped counting how many areas I have. I know I do have areas around my liver and areas in my abdomen.

    I had a illeostomy and several bowel resections with my inital surgery. I had my ostomy reversed after 5 rounds of IV chemo. Is there anything inparticular you want to know? Did they say an ostomy is definate?

    Good luck!!!
  • wendybill
    wendybill Member Posts: 84
    #4
    nancy591 said:

    good luck
    You'd think stage 1 would buy you a lot more time but I know that clear cell is a nasty bugger. I stopped counting how many areas I have. I know I do have areas around my liver and areas in my abdomen.

    I had a illeostomy and several bowel resections with my inital surgery. I had my ostomy reversed after 5 rounds of IV chemo. Is there anything inparticular you want to know? Did they say an ostomy is definate?

    Good luck!!!

    Colostomy
    My mom had a colostomy after she developed a fistula immediately following her initial debulking. I have been closely involved in her "colostomy experience". I have helped her pick out the supplies that worked for her and helped with changing her skin barrier. I also did some reviewing of the colsotomy internet boards offered through the two major supply companies. Here is what I learned: the beginning is tough because you are still figuring out which system is going to work best for you ( two piece vs one piece, disposable bags vs. reuseable bags and skin barriers that are cut to fit or Pre cut.) So there is a learning curve. To meet that, you will have a nurse at the hospital and maybe even at your home who specializes in colostomies. This is a nice bit of support. They really carried my mom through until she could take care of things herself. On line, the folks there talked about how hard the first months were and how things did get better. My mom really struggled at first but has improved in her acceptance. I'm going to be honest and tell you that the smell is really out of this world. HOWEVER--- they have remarkable biological eliminator sprays that you will use in the hospital. I made sure and bagged as many bottles as possible and then later ordered from Amazon the same stuff. I was hopeful that the colostomy bag would fill like twice a day on a schedule but that was not the case for my mom. The filling was more constant than we expected. She has gotten so good at taking care of it that no one would have been the wiser at Christmas when we stayed with her. I was impressed at how good she got with dealing with it. The stoma does make noise kind of like a stomach and that is sort of weird but not so bad. My mom would like the reversal if she can get it but we are not sure. It was harder than I expected but definitely adaptable. Good luck.
    Wendy
  • pjdreams
    pjdreams Member Posts: 77
    #5
    wendybill said:

    Colostomy
    My mom had a colostomy after she developed a fistula immediately following her initial debulking. I have been closely involved in her "colostomy experience". I have helped her pick out the supplies that worked for her and helped with changing her skin barrier. I also did some reviewing of the colsotomy internet boards offered through the two major supply companies. Here is what I learned: the beginning is tough because you are still figuring out which system is going to work best for you ( two piece vs one piece, disposable bags vs. reuseable bags and skin barriers that are cut to fit or Pre cut.) So there is a learning curve. To meet that, you will have a nurse at the hospital and maybe even at your home who specializes in colostomies. This is a nice bit of support. They really carried my mom through until she could take care of things herself. On line, the folks there talked about how hard the first months were and how things did get better. My mom really struggled at first but has improved in her acceptance. I'm going to be honest and tell you that the smell is really out of this world. HOWEVER--- they have remarkable biological eliminator sprays that you will use in the hospital. I made sure and bagged as many bottles as possible and then later ordered from Amazon the same stuff. I was hopeful that the colostomy bag would fill like twice a day on a schedule but that was not the case for my mom. The filling was more constant than we expected. She has gotten so good at taking care of it that no one would have been the wiser at Christmas when we stayed with her. I was impressed at how good she got with dealing with it. The stoma does make noise kind of like a stomach and that is sort of weird but not so bad. My mom would like the reversal if she can get it but we are not sure. It was harder than I expected but definitely adaptable. Good luck.
    Wendy

    Thank you
    Ladies,

    Thank you so much for your kind support and replies. My surgery is tomorrow and whether I'll need a colostomy will be determined then. Praying the answer is No but we'll see.

    Pj
  • kayandok
    kayandok Member Posts: 1,202 Member
    #6
    pjdreams said:

    Thank you
    Ladies,

    Thank you so much for your kind support and replies. My surgery is tomorrow and whether I'll need a colostomy will be determined then. Praying the answer is No but we'll see.

    Pj

    Paula,
    wishing you the best on your surgery! Hang in there, and take it a day at a time. You are a fighter, and you wil be ok, I know it!
    kathleen
  • cfont11
    cfont11 Member Posts: 115
    #7
    New
    Dear pjdreams,

    I had emergency surgery last year to unblock my colon. That is when it was found I had ovarian cancer, stage 3C. In June 2010 I had a colostomy done. Due to my condition, I could not have cancer surgery at that time. The colostomy was in the middle of my abdomen, which was the only place the dr. could put it. It was above my surgical incision that was large, deep and open. Because of the location and the size of the stoma, I had problems for 6 months with the bags leaking and leaking into the wound. It was a very difficult time for my husband, who bore the brunt of the care and changing of the skin barrier and bags and taking care of the wound. We only had visiting nurses for a short time. I was told by 2 different surgeons that the colostomy could be reversed when I had surgery for the cancer. I had surgery in Jan., a hysterectomy and debulking. My colon was too damaged to be able to reverse the colostomy. However, the dr. did take down the colostomy and give me an ileostomy which will be permanent. That was hard to come to terms with but now it is a piece of cake to deal with. My main concern is the cancer. I have microscopic cells left and as soon as my surgical wound heals, will be having 2 chemo treatments. I had 6 treatments of taxol/carbo last year. If you have to have a colostomy, it is not the end of the world. You will get used to it and will be able to deal with it easily. It sounds like you are a strong women and will make it through this ordeal. I am praying for you and good luck with the surgery.
  • anicca
    anicca Member Posts: 334 Member
    #8
    Dear Paula,
    I'm guessing
    Dear Paula,

    I'm guessing you've the surgery already. I hope first, that you are doing well and recovering without too much pain and discomfort, and second, that you did not need a colostomy. Whatever the outcome, stay strong and know that we are all praying for you.

    DB
  • Christine B.
    Christine B. Member Posts: 137
    #9
    wendybill said:

    Colostomy
    My mom had a colostomy after she developed a fistula immediately following her initial debulking. I have been closely involved in her "colostomy experience". I have helped her pick out the supplies that worked for her and helped with changing her skin barrier. I also did some reviewing of the colsotomy internet boards offered through the two major supply companies. Here is what I learned: the beginning is tough because you are still figuring out which system is going to work best for you ( two piece vs one piece, disposable bags vs. reuseable bags and skin barriers that are cut to fit or Pre cut.) So there is a learning curve. To meet that, you will have a nurse at the hospital and maybe even at your home who specializes in colostomies. This is a nice bit of support. They really carried my mom through until she could take care of things herself. On line, the folks there talked about how hard the first months were and how things did get better. My mom really struggled at first but has improved in her acceptance. I'm going to be honest and tell you that the smell is really out of this world. HOWEVER--- they have remarkable biological eliminator sprays that you will use in the hospital. I made sure and bagged as many bottles as possible and then later ordered from Amazon the same stuff. I was hopeful that the colostomy bag would fill like twice a day on a schedule but that was not the case for my mom. The filling was more constant than we expected. She has gotten so good at taking care of it that no one would have been the wiser at Christmas when we stayed with her. I was impressed at how good she got with dealing with it. The stoma does make noise kind of like a stomach and that is sort of weird but not so bad. My mom would like the reversal if she can get it but we are not sure. It was harder than I expected but definitely adaptable. Good luck.
    Wendy

    Question for Wendy
    Hi Wendy, Your mom's experience with the smell of changing the colostomy bag and the frequency of changing it is much like mine. Could you tell me the name of the biological eliminator spray she uses? Also, with changing the bag so often I have found that I would run out of my monthly supply unless I use the drainables or wash out the one time disposables. Did your mom encounter this? What type works for her? I am impressed that she can take care of it all! I am able to drain/change my bags, but the colostomy is located on my right side a few inches above my belly button, and is at an angle that I have a hard time seeing it or knowing the shape to cut the barrier as the stoma changes shapes and size from time to time. Your mom is a strong woman to be able to do it all, I know!

    Paula, I too pray that I will be able to have a reversal. But after the last six months since I was diagnosed, I agree with Wendy, I have adapted to it. Best wishes to you.
    Christine
  • Rookerbird
    Rookerbird Member Posts: 100
    #10
    Hoping all went well with your surgery. I too was diagnosed with clear cell (Stage 2, high-grade, poorly-differentiated). I am also platinum-resistant, but having luck with Doxil.

    I had six rounds of Taxol/carboplatin, and my PET a month after finishing showed new growths. Went on to radiation, then a maintenance drug called Femara. The growths were stable, so I took a breather and unfortunately they grew. My oncologist sent me to M D Anderson for a second opinion, and both doctors chose Doxil for second-line chemo. It's working! After three treatments, Doxil has shrunk the tumors by three-fourths! Stay hopeful...you have many options.

    The list of chemos my doctors were planning to try was:
    Doxil
    then Taxotere
    then Topotecan
    then Gemzar

    Other women on this board are taking Avastin.

    Sending prayers your way,
    Kathy

Discussion Boards