Doxil/Cisplatin for Second recurrence

nancygt
nancygt Member Posts: 86
edited March 2014 in Uterine/Endometrial Cancer #1
After CA 125 doubling (50 to 100),I just got results of PET scan and as suspected (CA 125 has been reliable indicator for me) and this time it is around the margins of my lungs - 4 to 5 small tumors.Brief summary: hysterectomy/oopharectomy 12/08 followed by 2 rounds of carboplatin/taxol sandwiched with 30 external radiations and 3 brachytherapy. Less than 6 months after all that was done, I had first recurrence in paraaortic lymph nodes which was sucessfully treated by IMRT for six weeks and 7/2010 clear PET scan. Now 4 months later it is back - I am not candidate for hormones and been tested fo Lynch syndrome, Her 2 Neu and P53 but negative for all.
I am glad that we can wait until after New Years to start treatment as that gives me 4-5 weeks to enjoy holidays,etc as I have no symptoms (other than some of the GI baggage many of us have after abdominal/pelvic radiation). Although I tolerated the carboplatin/tazol reasonably well, I am somewhat scared of the side effects I read about for Doxil/Cisplatin combined regiment. Fortunately my heart is strong so I don't worry so much about that. But I get depressed at the thought of 6 months ( 8 treatments every 3 weeks)and positive attitude is flagging.I know this treatment regimen was brought up several years ago and seems pretty typical for recurrent Ovarian cancer and I did check that board. But have any of you in the UPSC community had first hand experience with these drugs that you can share. Thanks because that is all I want to read right now as I have been to Drug mrs.NCI, ACS websites and that was pretty gloomy.

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #2
    Please read Linda's posts
    Nancygt:

    Please see Linda's very descriptive and helpful posts. Also, Songflower's. Both of these ladies have been on Doxil. Linda just finished her third round.
  • lociee
    lociee Member Posts: 102
    #3
    Doxil
    I had doxil several times after carbo/taxol and 30 radiations. Of all the treatments I found Doxil the least invasive. It was the radiation that still has lingering and painful results.
  • nancygt
    nancygt Member Posts: 86
    #4
    Kaleena said:

    Please read Linda's posts
    Nancygt:

    Please see Linda's very descriptive and helpful posts. Also, Songflower's. Both of these ladies have been on Doxil. Linda just finished her third round.

    Thanks
    Thanks for pointing me there as I found Linda's posts on Doxil very informative as always. I have printed some fo the ones about Doxil precautions and await with great interest her post on her midterm PET scans since her CA 125's have fluctuated. My CA 125 has been a reliable indicator for me and I know I would have freaked out if it started going up during treatment. Although I got excited when it went down to 9 after the six months of surgery and sandwich protocol, after the first recurrence (even with clean PET scan at end of IMRT targeted radiation)it held at 50 for 4 months until recent recurrence where it jumped to 100. My onc says there typically is a new normal after recuurence treatment that isn often in the 50-100 range. He however felt it was significant that it doubled as those sort of exponential increases tend to be more meaningful than "percolating" changes (seems to use rule of thumb that 10 to 15% not a concern unless a steady pattern upward in that range over time.
    I still would love to know if anyone has experienced Doxil combined with Cisplatin as that sounds like a pretty potent combo - while I do not look forward to six months of combined side effects, it is on 21 day cycle which hopefully gives you some good time the week before next treatment, it will be mostly during winter where I won't miss pool and gardening time, and my onc feels this combo gives me best chance for lengthier remission.
    So since the storms have stopped and the sun is out, I think I will go shopping for Fur Lined Crocs (did not even know they existed - what an education cancer is !), eat lunch at my favorite spicy Greek restauraunt and maybe go see the latest Chick flick and not let cancer dictate my life for the enxt month.
  • Sara Zipora
    Sara Zipora Member Posts: 231
    #5
    lociee said:

    Doxil
    I had doxil several times after carbo/taxol and 30 radiations. Of all the treatments I found Doxil the least invasive. It was the radiation that still has lingering and painful results.

    Starting Doxil next week
    Thanks to Linda's posts I have plush lined crocs, they only had red in my size but they make me smile. I also have Eucerin cream, and taken all the waistless dresses out of my closet and lined them up for 'duty' for the week of Doxil/ Carboplatin. The Doc, one of the developers of Doxil, says they have tweaked med so reaction are Low, he said first week care should be taken re hot drinks, hot food ( temperature) and hot showers, also shoes and clothes should not be tight fitting. Nurses said reaction in third week post chemo. Linda's reaction was toward the end of three weeks, am I right Linda? So I'm geared up for two cycles of four weeks each.
    Good luck with your rounds.
    May we all have good news and happy healthy holidays,
    Sara Zipora
  • kkstef
    kkstef Member Posts: 688 Member
    #6
    Sara Zipora said:

    Starting Doxil next week
    Thanks to Linda's posts I have plush lined crocs, they only had red in my size but they make me smile. I also have Eucerin cream, and taken all the waistless dresses out of my closet and lined them up for 'duty' for the week of Doxil/ Carboplatin. The Doc, one of the developers of Doxil, says they have tweaked med so reaction are Low, he said first week care should be taken re hot drinks, hot food ( temperature) and hot showers, also shoes and clothes should not be tight fitting. Nurses said reaction in third week post chemo. Linda's reaction was toward the end of three weeks, am I right Linda? So I'm geared up for two cycles of four weeks each.
    Good luck with your rounds.
    May we all have good news and happy healthy holidays,
    Sara Zipora

    You are READY!
    Sara, It sounds like you are all prepared for your Doxil treatments and I am confident that you will have minimal side effects. After reading all of the comments Linda posted it sounds like just following the do's and don'ts is almost a full time job there for a while.

    Hang in....you can do it! We are all pulling for you!

    Karen
  • Sara Zipora
    Sara Zipora Member Posts: 231
    #7
    kkstef said:

    You are READY!
    Sara, It sounds like you are all prepared for your Doxil treatments and I am confident that you will have minimal side effects. After reading all of the comments Linda posted it sounds like just following the do's and don'ts is almost a full time job there for a while.

    Hang in....you can do it! We are all pulling for you!

    Karen

    Thanks Karen!
    Dear Karen,
    Thanks for your speedy reply and optimism to my post.
    Sara Zipora
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #8
    Sara Zipora said:

    Thanks Karen!
    Dear Karen,
    Thanks for your speedy reply and optimism to my post.
    Sara Zipora

    Your oncologist seems very aggressive.
    Every oncologist has a different strategy for each patient. If you've had addominal radiation in addition to pelvic radiation, and did IMRT on your para-aortic nodes, and your oncologist wants to add Cisplatin to your Doxil, he is really taking an aggressive approach with you. She must feel your bone marrow and body can handle it.

    I am physically a strong person, but my bone marrow (RBC, WBC, & platelets) always get too low more quickly than I wish. I had a big heart-to-heart with my 3 oncologists and set some goals for myself, and you may want to do the same: I want to live as LONG as I can, but I also want to preserve a high QUALITY OF LIFE. My goal is to be symptom-free, so that my cancer doesn't make me feel sick, but I also don't want side affects from the TREATMENTS to begin to cramp my style in any significant way. For me, the decision has been to take SINGLE agent chemo drugs, given sequentially, instead of going for the one-two punch of a chemo cocktail. That strategy may change if this 'one-chemo-at-a-time' plan really begins to fail me (like single agent Doxil largely failed me). But it is lovely to be able to go out for dinner and take a normal crap and work and play and FEEL GOOD, even in treatment. I think everyone will be surprised if I ever go back into a full remission, and so if the remainder of my life will be in treatment, then let it be a treatment where I don't need anti-nausea drugs or pain pills or sleeping /anxiety pills; a treatment regime where I feel healthy and can live a normal life; a regime where my treatments are meerly an interruption of a very full busy happy life. You may not be ready for that kind of thinking yet (or ever!); you may still have a shot at a prolonged remission. I just throw it out there because I think Doxil/Cisplatin isn't going to be a walk in the park. Do-able, but harder than Doxil alone. ((((Sara))))
  • Always Hopeful
    Always Hopeful Member Posts: 234
    #9
    lindaprocopio said:

    Your oncologist seems very aggressive.
    Every oncologist has a different strategy for each patient. If you've had addominal radiation in addition to pelvic radiation, and did IMRT on your para-aortic nodes, and your oncologist wants to add Cisplatin to your Doxil, he is really taking an aggressive approach with you. She must feel your bone marrow and body can handle it.

    I am physically a strong person, but my bone marrow (RBC, WBC, & platelets) always get too low more quickly than I wish. I had a big heart-to-heart with my 3 oncologists and set some goals for myself, and you may want to do the same: I want to live as LONG as I can, but I also want to preserve a high QUALITY OF LIFE. My goal is to be symptom-free, so that my cancer doesn't make me feel sick, but I also don't want side affects from the TREATMENTS to begin to cramp my style in any significant way. For me, the decision has been to take SINGLE agent chemo drugs, given sequentially, instead of going for the one-two punch of a chemo cocktail. That strategy may change if this 'one-chemo-at-a-time' plan really begins to fail me (like single agent Doxil largely failed me). But it is lovely to be able to go out for dinner and take a normal crap and work and play and FEEL GOOD, even in treatment. I think everyone will be surprised if I ever go back into a full remission, and so if the remainder of my life will be in treatment, then let it be a treatment where I don't need anti-nausea drugs or pain pills or sleeping /anxiety pills; a treatment regime where I feel healthy and can live a normal life; a regime where my treatments are meerly an interruption of a very full busy happy life. You may not be ready for that kind of thinking yet (or ever!); you may still have a shot at a prolonged remission. I just throw it out there because I think Doxil/Cisplatin isn't going to be a walk in the park. Do-able, but harder than Doxil alone. ((((Sara))))

    Can't agree with you more
    Dear Linda,

    Your "Life Plan" is exactly what I have discussed with my docs and we are all in full agreement. I have come to accept that this is a chronic cancer requiring on and off treatment...hopefully more off than on...for the rest of my life. That life, though, has to be a pain free one that is not imposed upon by the side effects of the treatments.

    It is now our job to enjoy life to it's fullest (something ALL should do, not just those who are ill)! LIVE, LOVE, LAUGH!!!

    Peace and hope, JJ
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #10
    Always Hopeful said:

    Can't agree with you more
    Dear Linda,

    Your "Life Plan" is exactly what I have discussed with my docs and we are all in full agreement. I have come to accept that this is a chronic cancer requiring on and off treatment...hopefully more off than on...for the rest of my life. That life, though, has to be a pain free one that is not imposed upon by the side effects of the treatments.

    It is now our job to enjoy life to it's fullest (something ALL should do, not just those who are ill)! LIVE, LOVE, LAUGH!!!

    Peace and hope, JJ

    I was told upfront that my UPSC was not curable, but treatable
    When I was diagnosed with stage III-C UPSC in January 09 my onocologist told me that my cancer was not curable, but could be treated like a chronic disease. So that has been my mindset all along. I have been treatment free for 16 months, but expect to need treatment again. I had my CA 125 and CAT scan again today, but will not get the results until Dec 21 when I go to the doctor. It will be interesting to see what he has to say.

    I agree with Linda that I want the best quality of life I can have. I tolerated the first round of treatments pretty good and hope I do that well with the next treatment plan---whatever that might be.

    I plan to continue to live my life to the fullest. I like JJ's advice to Live, Love and Laugh. In peace and caring.
  • Songflower
    Songflower Member Posts: 608
    #11
    Ro10 said:

    I was told upfront that my UPSC was not curable, but treatable
    When I was diagnosed with stage III-C UPSC in January 09 my onocologist told me that my cancer was not curable, but could be treated like a chronic disease. So that has been my mindset all along. I have been treatment free for 16 months, but expect to need treatment again. I had my CA 125 and CAT scan again today, but will not get the results until Dec 21 when I go to the doctor. It will be interesting to see what he has to say.

    I agree with Linda that I want the best quality of life I can have. I tolerated the first round of treatments pretty good and hope I do that well with the next treatment plan---whatever that might be.

    I plan to continue to live my life to the fullest. I like JJ's advice to Live, Love and Laugh. In peace and caring.

    I took doxil and avastin
    I took doxil and avastin. I had HIPEC with carboplatin sandwiched between four of these chemo's (total of 8). I have bad neuropathy so she did not treatme with the carbo. I got good results from my treatment. Go to the Doxil websit and sign up for the nurse to call you. I iced my feet and hands down during chemo and then kept a foot soaker with ice water and also soaked my hands in ice water for the first 5 days for about 20 min four times a day. This is time consuming but it works. Carbo can be tough but alot of women do very well with it. I am glad your Doctor is taking such an agressive approach. It is hard to look ahead to all that chemo. Eventually we developed a routine and my hubby and I cooked at home (he did the cooking) and we rented fun movies instead of going out. I got a kindle book and did some reading. Rest and take care of yourself. Being a warrior is hard work. Let us know how it goes. One at a time.

    Love,
    Diane

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