Doxil side effects - whoa!

JoWin615
JoWin615 Member Posts: 150 Member

I posted this on the Inspire board a few days ago.  If you are on both, please excuse the repetition.

"I'm beginning to realize how lucky I've been in the past with the severity of the side effects I've felt with the two other chemo combos I've been on. (Does that even make sense?!). I had Taxol/Carbo, and a huge amount of Gemzar/Carbo, and never once was I rendered unable to function. But this Doxil/Carbo has taken me by surprise. I've had two treatments so far. The queasiness, burning skin pain all over my body, painful heaviness in my legs, is not going away in 3-4 days like with the other combos. I try to accomplish one meaningful task each day, but all I really want to do is crawl back into my bed/nest. I'm going to Seattle on 7/17 to a favorite cousin's memorial service. (Died in June of colon cancer. His death hit me hard, because I was suddenly socked in the gut with my own mortality). I am really looking forward to seeing lots of family, but am terrified of feeling too crappy to enjoy the celebration, so I have to figure out a way to rally. I've already gotten the 3rd treatment put back a week because of this trip, so maybe that'll help. Just writing all this down has helped already! Thanks, everyone. Too bad I can't give you all the hourly fee you deserve!"

Since I wrote this, I do feel a bit better, but the symptoms come and go without warning.  My chemo nurse said what I am describing is very typical of Doxil side effects.  She will talk to the doc and suggest maybe lowering the dose for my next treatment on 7/28.  I'd love to hear anyone else's experience with Doxil, positive or negative.

Meanwhile, have a safe and relaxing 4th of July.

Cheers, Jo

Comments

  • poopergirl14052
    poopergirl14052 Member Posts: 1,183 Member
    Hi Jo

    I have never been on Doxil....what does your Dr. suggest...there must be something to help with your side effects. I am sorry you lost a lved to cancer...it sucks. Hopefully you will be able to go to his service. Pace yourself...rest in between ..stay hydrated. Stay strong.... Val......ps I am on Carbo and it is a very tough drug...I am on Carbo/Taxatore ..I am in bed a good week

  • lovesanimals
    lovesanimals Member Posts: 1,366 Member

    Hi Jo

    I have never been on Doxil....what does your Dr. suggest...there must be something to help with your side effects. I am sorry you lost a lved to cancer...it sucks. Hopefully you will be able to go to his service. Pace yourself...rest in between ..stay hydrated. Stay strong.... Val......ps I am on Carbo and it is a very tough drug...I am on Carbo/Taxatore ..I am in bed a good week

    Dear Jo

    I'm so sorry for the passing of your dear cousin.  Side-effects really suck but I hope that the lowering of your next dosage helps out.  I don't have any personal experience with your latest chemo cocktail but perhaps other women who do have experience will respond.

    Happy and safe 4th of July to you too.

    Kelly

  • ovarian_support
    ovarian_support Member Posts: 44
    My mother takes Doxil

    My mother takes Doxil plus and experimental drug in her trial.  The doctor prospcribed some anti-nausea pills to take.  One is given as an injection at the time of her infusion and the other is to be taken as needed.  I don't know if that is something your doctor has tried yet or not.  As for the the blisters, my mother doesn't get them on the hands and feet like the doctors said she would but instead one cropped up on her elbow and another smaller one on her finger.  I guess everybody reacts differently.  She was told to apply a lot of lotion and try not to do anything that would damage her skin, so immediatly after treatment she tries to stay off her feet and doesn't touch anything too hot; wears soft clothing.  I don't know if that helps you or not.  The doctors told her to use lotion that contains lanolin.  I hope the Doxil helps, I hear it's a great drug and both my mothers current and previous doctor recommend she start the study if only for the Doxil alone so I think that says a lot for the drug.  Have a safe trip.

  • Mimi13
    Mimi13 Member Posts: 1

    My mother takes Doxil

    My mother takes Doxil plus and experimental drug in her trial.  The doctor prospcribed some anti-nausea pills to take.  One is given as an injection at the time of her infusion and the other is to be taken as needed.  I don't know if that is something your doctor has tried yet or not.  As for the the blisters, my mother doesn't get them on the hands and feet like the doctors said she would but instead one cropped up on her elbow and another smaller one on her finger.  I guess everybody reacts differently.  She was told to apply a lot of lotion and try not to do anything that would damage her skin, so immediatly after treatment she tries to stay off her feet and doesn't touch anything too hot; wears soft clothing.  I don't know if that helps you or not.  The doctors told her to use lotion that contains lanolin.  I hope the Doxil helps, I hear it's a great drug and both my mothers current and previous doctor recommend she start the study if only for the Doxil alone so I think that says a lot for the drug.  Have a safe trip.

    Doxil

    I have had 4 doxil/carbo rounds with few sued effects other than fatigue for few days. I take nausea meds & miralax. When getting infusion they put my feet & hands on ice to slow down circulation. No hand foot problems so far. 

  • Mwee
    Mwee Member Posts: 1,338
    Hi Jo

    I'm so sorry to hear of your loss. I was on Doxil for 6 rounds and I found it hard to tolerate. I have found that tweaking the dosage of some of these chemos can make all the difference. Here's hoping that the next round is easier. (((((Hugs))))).   Maria

  • 123Miley
    123Miley Member Posts: 94
    I was on Doxil for most of

    I was on Doxil for most of last year - but not in combo with anything else.  I too had skin and some fatigue and stomach issues.  But they were manageble.   My stomach issues eventually got worse - but not from the doxil.  Was probably caused by scar tissue that was closing off my intestine.  I have since had surger for that and went on Gemzar in January - just started topotecan this week. 

    On the Doxil I laughed that I didn't have hand and foot syndrome - I had head to toe syndrome!  During infusion and for the first few days after I was careful to wear soft and somewhat lose fitting clothes.  It was so bad after the first few treatments that it even hurt to take a shower.  My hands were mostly bothered by typing and using the mouse.  But it did get better -sort of like my body adjusted.  I would just randomly get scabby places on my chest and my legs were ususally covered in little red needly bumps - it actually just looked like I had a bit of a tan from a distance!  I was quite sun sensitive. 

    No telling how much the carbo is contributing to side effects - I have had carbo twice - always with taxol though.   I had lots of fatigue with that combo.  Like the other posters they maybe can adjust the dose slightlly and help some of that.

     

  • JoWin615
    JoWin615 Member Posts: 150 Member
    Update - trip to Seattle

    I am pleased to report that the side effects that I so dreaded did not happen, and I had a fabulous trip!  We were surrounded by family, friends, and love. Together we gave my dear cousin a glorious send off on his next journey. Thanks to all for your kindness, support, and advice. 

    Today I had Doxil/Carbo #3. So my next challenge comes at the end of this week, when we leave for North Carolina to take care of our 2 1/2-year-old granddaughter for a week. Keep those positive vibes and good luck prayers coming!

    Cheers,                       

    Jo

  • pandagypsy
    pandagypsy Member Posts: 113 Member
    JoWin615 said:

    Update - trip to Seattle

    I am pleased to report that the side effects that I so dreaded did not happen, and I had a fabulous trip!  We were surrounded by family, friends, and love. Together we gave my dear cousin a glorious send off on his next journey. Thanks to all for your kindness, support, and advice. 

    Today I had Doxil/Carbo #3. So my next challenge comes at the end of this week, when we leave for North Carolina to take care of our 2 1/2-year-old granddaughter for a week. Keep those positive vibes and good luck prayers coming!

    Cheers,                       

    Jo

    great news!

    I was so glad to read your post from today!  Even if the reprieve was temporary, you got to do something that was really important to you.Laughing That is something that really sucks with chemo, you never really know how the next round is going to effect you.....as my Dr. said, remember, it's cumulative.  I make plans to do things tomorrow, and my husband has to stop me and say, Let's see how you feel tomorrow, and we can go from there. But I am so happy you got to have the trip you so needed!

    HUGS!!!!!         Linda