UK trial Paclitaxcl and Cisplatin info needed please

Mum2Joe
Mum2Joe Member Posts: 2
in Ovarian Cancer #1
My lovely mum Patricia is 56yrs young and was diagnosed with primary peritoneal carcinoma at the end of Oct 2011. She's having 4th chemo (paclitaxcl + carboplatin) on 25th Jan then surgery (debulking I think they call it) on 16th Feb. She's been asked if she'd like to take part in a trial involving IV and IP infusion of Paclitaxcl and Cisplatin. We are very confused and don't know what to do for best. Has anyone else trued these drugs? Can anyone give us some information? My mum has recently read somewhere that PPC has very bleak outcome and she is even more scared now. Your stories would really help my mum and family too as we feel very isolated, as it's quite a rare cancer.

Kind regards

Lindsay x

Comments

  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #2
    HI
    Hi, I hope your mom is deal well with the chemos. I have had IV Cisplatin with Etoposide. The combo made me feel pretty crappy but got a NED from it. Cisplatin is harder on the kidneys than Carboplatin...so please make sure your mom drinks as much fluid as possible. There are ladies here who have had the IP and/or IV chemo.

    They should be able to advise you more on that note.

    I think we have all had some sort of debulking. They literally go in there and take out what cancer they can. Survival rates go up if the surgeon, knows what they are doing. The should ideally debulk as much cancer as possible. That way the chemo takes care of the rest.

    I am glad you founds us. I am glad I found this group. I have gotten many a good advice from these wonderful ladies. Things may look bleak but please remember each fight is unique.
  • Mum2Joe
    Mum2Joe Member Posts: 2
    #3
    Radioactive34 said:

    HI
    Hi, I hope your mom is deal well with the chemos. I have had IV Cisplatin with Etoposide. The combo made me feel pretty crappy but got a NED from it. Cisplatin is harder on the kidneys than Carboplatin...so please make sure your mom drinks as much fluid as possible. There are ladies here who have had the IP and/or IV chemo.

    They should be able to advise you more on that note.

    I think we have all had some sort of debulking. They literally go in there and take out what cancer they can. Survival rates go up if the surgeon, knows what they are doing. The should ideally debulk as much cancer as possible. That way the chemo takes care of the rest.

    I am glad you founds us. I am glad I found this group. I have gotten many a good advice from these wonderful ladies. Things may look bleak but please remember each fight is unique.

    thank you
    Thank you for the info. Do I wait for people to reply or can I ask members who have had this treatment directly. Not sure how this all works. Sorry x
  • lauripiper
    lauripiper Member Posts: 28
    #4
    Mum2Joe said:

    thank you
    Thank you for the info. Do I wait for people to reply or can I ask members who have had this treatment directly. Not sure how this all works. Sorry x

    IP and IV
    I have had IP and IV chemo with those 2 drugs and I am now 11 months with no recurrence. I assume this trial is to test IP therapy for PPC? For ovarian cancer there have been several trials of IP therapy and the NCI (National Cancer Institute) recommends IP therapy for all patients because it improves survival. Unfortunately a lot of dr.'s don't do it because it is supposed to be more difficult for the patient. I insisted on it and had no problems with it. All chemo is difficult and everyone's reaction is different. I would think there would be a good chance that IP therapy will be proven effective for your mom's cancer as well.
  • carolenk
    carolenk Member Posts: 907 Member
    #5
    lauripiper said:

    IP and IV
    I have had IP and IV chemo with those 2 drugs and I am now 11 months with no recurrence. I assume this trial is to test IP therapy for PPC? For ovarian cancer there have been several trials of IP therapy and the NCI (National Cancer Institute) recommends IP therapy for all patients because it improves survival. Unfortunately a lot of dr.'s don't do it because it is supposed to be more difficult for the patient. I insisted on it and had no problems with it. All chemo is difficult and everyone's reaction is different. I would think there would be a good chance that IP therapy will be proven effective for your mom's cancer as well.

    Go for it!
    If I were your mum, I would go for the trial. The IV/IP chemo for ovarian cancer has proven to have better results than IV alone.

    Will she be put into either the IV or the IV/IP group? Hopefully, she will get the IP treatment. Best wishes to you both.
  • paris11
    paris11 Member Posts: 159
    #6
    carolenk said:

    Go for it!
    If I were your mum, I would go for the trial. The IV/IP chemo for ovarian cancer has proven to have better results than IV alone.

    Will she be put into either the IV or the IV/IP group? Hopefully, she will get the IP treatment. Best wishes to you both.

    IP Chemo
    I had IP/IV carbo and taxol. I am 18 months PFS. I would do it again.

    Connie
  • taiga
    taiga Member Posts: 75 Member
    #7
    paris11 said:

    IP Chemo
    I had IP/IV carbo and taxol. I am 18 months PFS. I would do it again.

    Connie

    IP Chemo
    I had taxol and cisplatin by IP. I completed all 6 cycles. They do carefully monitor your urine output and kidneys with the cisplatin. It was manageable, you just feel really pregnant after the infusion. There are also some people who had hearig loss from the cisplatin. I think IP is the way to go it dumps that chemo right where you want it. I was in a trial GOG-252
  • kikz
    kikz Member Posts: 1,345 Member
    #8
    taiga said:

    IP Chemo
    I had taxol and cisplatin by IP. I completed all 6 cycles. They do carefully monitor your urine output and kidneys with the cisplatin. It was manageable, you just feel really pregnant after the infusion. There are also some people who had hearig loss from the cisplatin. I think IP is the way to go it dumps that chemo right where you want it. I was in a trial GOG-252

    I also had taxol and cisplatin by IP
    post debulking surgery. I had a total of eight infusions in three cycles. I had a really difficult time ending up in the hospital twice for a total of 13 days during the three cycles. My oncologist decided I would not have the final infusion because my body couldn't take it. But I too am NED which makes it all worthwhile.

    In November of 2010 when I went for my post-chemo checkup with my gyn/onc, he said the post-surgery chemo was icing on the cake. He is very frank with me about the scary possibilites of this disease so when he tells me something good, I take it to heart.

    The hard part for me was not knowing when I was just chemo sick or I really needed medical attention. Make sure to check with the doctor when anything feels wrong. Let the doctor determine what needs attention. I could have saved myself a lot of torture if I had called my doctor instead of waiting until I was very ill.

    Good luck.

    Karen
  • MarisaUK54
    MarisaUK54 Member Posts: 41
    #9
    Positive thoughts...
    Hello Lindsay

    I am in London, aged 54 and was diagnosed like your mum, in October 2010. Exactly a year ago today I had debulking surgery and made an excellent recovery. I have my next 3 month check next week and my CA 125 levels are staying low and I feel very well. I had the 6 Paxitaxol/Carboplatin (think that's right!) chemo's so I cannot comment on Cisplatin or any trials but hopefully some of the lovely ladies here can offer advice. As for PPC having a bleak outcome, read more on here and become inspired for your mum and indeed for you. Sometimes I feel it's harder for those looking on and I certainly hated seeing my three children (30, 26 and 19yrs),concerned and sad about my illness. With their positive outlook though, we battled through and now we refer to it as "a bad dose of the flu"!
    My daughter told me a lovely thing back in 2010 when I was diagnosed; she said mummy, they only give this to the strong...I always remembered this and it often gave me the strength to keep going and I was buggered if PPC was gonna beat me!

    Keep an open mind and read more on this site...it's uplifting.
    All the best
    Marisa

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