Strategies for dealing with Cisplatin?

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zenmama
zenmama Member Posts: 29
edited April 2015 in Ovarian Cancer #1

I certainly don't recally why I chose the name "zenmama" when I joined this board way back way.  Must have been wishful thinking.  Or maybe more positive thinking at the time.  Anyway, I don't feel very "zen". 

Does anybody have any experience and tips for coping with Cisplation? I have had many rounds of Carboplatin, which I did not find fun, but marginally tolerable in retrospect now, and Taxol I can deal with (I have been fortunate in that my neuropathy has stayed in the realm of numbness and clumsiness and not pins/needles/pain).  I have been taking Emend and Zofran and Maxran (or Metonia or something - the nurses call it Maxran) for naseua, so that isn't the problem.  It is overwhelming mental distress and inability to eat anything - fortunately I can still drink water).  I get Taxol by itself two weeks out of three and then Cisplatin added on the first of the three-week cycle (since I had a reaction to Carboplatin I can't be treated with it it any longer), and it feels lik all hell breaks loose.  I can't even focus on a movie, and certainly not a book or magazine.

I saw somebody on the board that had been treated with cisplatin for years.  I have had three treatments and am on the verge of telling my doctor that I can't do any more.  And she had told me after my first treatment that the dose I was getting wasn't all that high!  That I shouldn't even need the Emend (the nurses told me to ask her for it).

My mind has been in some dark places over the past three days since my treatment, and I am at my wits end.  I actually found myself feeling envious of a couple of obituaries I read thinking that those souls were over the worst.  At the same time that I am so looking forward to winter being over and good weather and want to live!!  This drug is crazy-making for me!   I am almost equally afraid of giving it up in case it is what is working!

I do take an anti-depressant (with the exception of the couple of days when I don't feel like swallowing anything)!

This is my third recurreance, stage IIIC  diagnosis 13 years ago, so I have been very fortunate and have done very well up to now - got through the first two recurrences without any issues, so very, very fortunate.  This darn cisplatin!!

Thank you for reading.  Have a peaceful and fun Sunday.

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,368 Member
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    zenmama, I can't help with

    zenmama, I can't help with any ideas for cisplatin, but I just googled "ovarian chat boards" and a few others have popped up.  This is a wonderful site but there are other sources out there for ovarian cancer that might be able to help.  I am not sure how 'active' they are, that is important, and I am betting you have to register to post, but ou might be able to "search" their sites.

    Hang on!!!  You are in my thoughts and prayers.

  • khsherwood
    khsherwood Member Posts: 33 Member
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    Cisplatin

    Hi zen mama, I think you are doing great to get this far on Cisplatin. I was on it for only one round before my doctor switched me to Carboplatin, which I am tolerating quite well. I did have to miss treatment a few times due to severe anemia and severe neuropathy but I am actually going to have my last treatment today. Hooray! 

    You too will get there. I was brought up not to complain about aches and pains so I feel like a jerk complaining to my doctors but in this case you absolutely have to tell your doctors everything. I can't believe that they are ok with you not being able to eat. Be honest. Tell them everything that's going on. They should be able to find a way to adjust or change your meds so you can tolerate the treatment better. My doctor has been very  concerned  with  my quality of life during treatment and yours should be too.

    Hang in there. Fight for your life or if you can't, find someone who will. 

    Kelly

  • zenmama
    zenmama Member Posts: 29
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    Cisplatin

    Hi zen mama, I think you are doing great to get this far on Cisplatin. I was on it for only one round before my doctor switched me to Carboplatin, which I am tolerating quite well. I did have to miss treatment a few times due to severe anemia and severe neuropathy but I am actually going to have my last treatment today. Hooray! 

    You too will get there. I was brought up not to complain about aches and pains so I feel like a jerk complaining to my doctors but in this case you absolutely have to tell your doctors everything. I can't believe that they are ok with you not being able to eat. Be honest. Tell them everything that's going on. They should be able to find a way to adjust or change your meds so you can tolerate the treatment better. My doctor has been very  concerned  with  my quality of life during treatment and yours should be too.

    Hang in there. Fight for your life or if you can't, find someone who will. 

    Kelly

    Thank you very much Kelly and

    Thank you very much Kelly and No Time for Cancer.  I see the doctor today.  We'll see if she has anything to say (she is usually pretty closed-mouth), or if I just say I can't do it anymore with that drug.

     

  • Ro10
    Ro10 Member Posts: 1,561 Member
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    Zenmama I am sorry the Cisplatin is so hard for you

    I have stage 3-C UPSC diagnosed on 1/09.  I had a reaction to carbo during my 9 th treatment.  I was switched to Cisplatin.  I have had 10 treatments of the Cisplatin.  My treatments have always been every three weeks combined with Taxol.  Nausea was always my main problem.  I used compazine, Ativan, zofran and a patch called Sancuso.  It was a patch that I wore for a week after the chemo.  I have also had three recurrences.  The last was treated with radiation (SBRT) to a paratracheal lymph node.

    Before my last round of chemo I found something on the internet called " Mouthcote"  spray.  I had such a metallic taste with my second round of chemo.  Everything tasted like metal, even water.  I did not have that taste with the third round of chemo, so I did not use it.  Lemon drops and black licorice is also supposed to  help the taste.

    I am sorry the Cisplatin is working on your mind.   I am glad you do have an antidepressan.   Maybe you need something added to it. Cancer is certainly wearing on the mind and body.  The treatments take their toil on each person and their families.  I hope you are feeling better since you originally posted this.  In peace and caring.

  • Mwee
    Mwee Member Posts: 1,338
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    Cisplatin

    So sorry to hear that you're having a tough time with the cisplatin. I became allergic to carboplatin and took Cisplatin for 3 1/2 years along with Gemzar. It worked very well for me, but it was not at all easy to tolerate. I had extreme constipation, fatigue, and generally felt fluish for a full week after each infusion. 

    I'm on my first round of Avastin and Topotecan and although it seems more tolerable than the cisplatin, I'm anxious to see if this will be able to keep me stable.

    I'm coming up on my 9 year survival anniversary and I also feel fortunate, but this endless cycle of treatments is hard to endure.

    ((((( hugs))))))).   Maria 

  • pandagypsy
    pandagypsy Member Posts: 113
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    Hi

    I'm sorrry to hear of your troubles with cisplatin...yes, it sucks........to put it mildly.  It probably wasn't the best solution, but I "self medicated" for my very worst days.  My husband cringed when I told him what I did, but I slept thru the day, not even feeling "guilty" for missing a day. I have been on Prozac for many years, which does help with coping.  I also take Restoril and xanax, and just took an extra dose so I would sleep thru the nastiest days. Pharmeceuticals aren't the answer, I get really upset with all of the fighting against medical marijuana; I think that would be far less harmful than doing what I resorted to. I had breast cancer twice in the early 80's, and I basically had to "suck it up", didn't even have the "pre-chemo" cocktail for nausea they now give. Diagnosed with stage IV ovarian cancer Feb. 2009, reoccurance in April 2014. Makes me laugh inside when everyone tells me "how strong I am"..."what a fighter and survivor I am".  I just have a LOT of crutches.  I do hope you get better, and find some way of dealing with all the nastiness. These discussion boards are a GREAT support system.

  • zenmama
    zenmama Member Posts: 29
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    Thank you

    Thank you very much Ro10, Maria, and Pandagypsy. 

    The chemo nurse basically suggested that I try to sleep as much as possible for three days.  I do have a relaxant (something like Ativan, but I forget what it is), so I think I will try that - it definitely knocks me out for the night, so maybe I can take it during the day and sleep more.  The nurse also suggested that I might want to come in for extra hydration the day after chemo since I am not drinking the recommended two-litres of water after chemo.  Of course that means getting up and getting to the hospital....  She said that people who drink more water seem to do better - but that means the unpleasantness of anything passing the lips.   The doctor suggested I may want to return to my family doctor and get something more in terms of an antidepressant.  Anyway, I'm counting down the days until my next treatment next week with trepidation.

    Thank you very much again for your advice and support.  It is much appreciated!