Doxil, what can you tell me about this chemo treatment?

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DeeDee45
DeeDee45 Member Posts: 30

After failing on ibrance/faslodex, my onc wants to start me on Doxil.  My onc mentioned hand and foot syndrome and possible hair loss, but I would like to hear from someone who has actually been on the treatment about the side effects you have faced. Thanks in advance. 

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited December 2016

    DeeDee,

    If you go the left of this page, you'll see a list in blue that has various headings. Open the search heading, and input "doxil" as your key word. You'll have to do it several times, perhaps, as your browser's autocorrect will try its best to change it to "dioxin". Then limit the search to stage 4, so that you get posts about late stage use of doxil, which is different from early stage use of the drug.

    Like many others here, I had it as part of my early stage treatment. It was a specific push into my IV that lasted for about 4 minutes. It was known for causing an awful taste in the mouth during the push, so they gave us popsicles. The cold also helped keep the drug from being picked up by oral tissue, which helped avoid mouth sores. Sadly, popsicles - to this day - make me want to hurl by association.

    It's a drug I am most familiar with as a drug of last resort, which means nothing really, as I could be stunning in my ignorance. But, do ask your MO why she doesn't want to try some of the other second line chemos, like Xeloda, Navelbine, Gemzar or Halaven. They are all heavy hitters, without the cardio-toxicity that doxil can bring to the party.

  • DeeDee45
    DeeDee45 Member Posts: 30
    edited December 2016

    Thank you Jennifer. Did you have a good result from Social?

  • Geeper
    Geeper Member Posts: 164
    edited December 2016

    Hello Dee Dee, I've been on Doxil since July and close to being NED from the neck down. My hair is two inches long and I dont have hand and foot syndrome. I get doxil once a month and Ive had no side effects with the exception of a little fatigue.

  • DeeDee45
    DeeDee45 Member Posts: 30
    edited December 2016

    Geeper, Thanks so much for replying.  I've been really worried about doing chemo again.  It's a relief to hear that it wasn't horrible for you.  Hopefully it will be the same for me. And CONGRATULATIONS for being near NED, that is awesome.

  • DeeDee45
    DeeDee45 Member Posts: 30
    edited December 2016

    Jennifer, that should have said, did you have a good result from Doxil?


  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited December 2016

    DeeDee,

    Doxil was part of my early stage treatment. I'm Stage 4 now, so it's not pertinent. Given that, I will say that it was six years between early stage treatment and Stage 4 diagnosis for me, and for four years I was "bone only".

    I've been stage 4 for five years now, and I keep getting stronger and better, compared to how I was at Stage 4 diagnosis (just full of bone mets and rib fractures, getting out of bed caused profound pain). If Doxil had any part in all that, then I am thankful.

    Have you talked to your MO about her choice of Doxil over other chemotherapies? I am riddled with curiosity.

  • RosesToeses
    RosesToeses Member Posts: 721
    edited January 2017

    Interestingly, at my last appointment my onc also mentioned Doxil if my next scans confirm that my current Xeloda is starting to fail.  She felt it was a good drug and the once-a-month dosing and less severe side effects would be a good fit for me.  I wonder if there's been new studies or something for it to come up like this recently?  At any rate I'm glad you asked the question and thanks Jennifer and Geeper for the info!

  • intothewoods
    intothewoods Member Posts: 449
    edited January 2017

    Hello Dee Dee,

    I'm on doxil and cytoxan for after progressing on faslodex. I've had six treatments and I get them every three weeks. No hair loss, no vomiting, no diarrhea, no hand-foot syndrome and no mouth sores although I do sip ice water during that infusion. My infusion lasts about 30 minutes. The only side effect that really gets to me and who knows if its the doxil or the cytoxan but I experience what my onc calls "dyspepsia" on days 4-8. It's hard to describe- not heartburn, not really nausea, but this kind of queasy, soury stomach full throated sensation is best I can do. Prilosec helps some.

    I hope you tolerate it well!

    Best,

    Lisa

  • Lynne
    Lynne Member Posts: 641
    edited February 2017

    After Ibrance not working at all, I am now going to start Doxil (as soon as I have a port put in). I will be having it once a month. 90 min infusion (not counting the steroid infusion before). When I was first diagnosed Stage 4, 7 years after first being diagnosed Stage 1 in 2005, I was put on Faslodex, it lasted 1 1/2 years. Then we tried Femara, it did not work. Then Xeloda for 2 years. Ibrance was the next one. I've had Zometa infusions through the past 4 1/2 years at stage 4. I'm hoping this one works. Glad to hear that those of you who have been on it, don't seem to be having many side effects. Wish me luck!

  • Lynne
    Lynne Member Posts: 641
    edited March 2017

    I had my port (awake the entire time, I didn't like that at all) put in 10 days ago (it's still bruised!), and had my first chemo on Wed. I used the numbing cream before my appointment, and didn't feel the them putting the needle in (it took 2 tries). I had my steroids and zometa (I get every 3 months) before hand and then they started the Doxil. It was quiet, only 2 old guys sleeping and myself, so I started reading my book. 5 minutes later, I felt my throat closing a little. Then a lot. I rang my bell and 3 nurses (that's all that were working back there that day) and the two physician assistants, came running over to me. The shut off the chemo, and started a saline. They gave me benadryl, pepcid, and some more steroids, through the port. I was having a hard time breathing, chest pain in the middle and to the left, back and hip pain and I felt like I was going to pass out. It took a half hour before I could breath normal again. Then they started up the chemo again, at half the speed. I was ok. They they decided after half an hour to increase the speed a tiny bit. I could feel my body get warm, so I asked my husband if my face was getting redder. He said a little. My nurse heard him and came running over. She asked what was going on. I told her my breathing was a tiny bit harder, so again I was shut down for a half hour. They kept me at half speed until 5 when they closed. I only got 2/3rds of the chemo. Next time (the 30th) they said they will give me the benadryl and pepcid before hand. I also have to take steroids for the 2 days before the chemo. They again will start me at 1/2 rate and slowly try to bring me up. I'm starting at 9, so I'll get my entire infusion. I went to the ER last night, after I had a fever for 24 hours (also have a headache and shoulder/neck aches, probably a side effect from steroids/Doxil). I found out I have a kidney infection. On antibiotics for the next 10 days. Hopefully it works and I don't have another reaction to the Doxil. Anybody else have this happen to them?

  • rpoole1962
    rpoole1962 Member Posts: 413
    edited March 2017

    Hi Lynne, I will be starting Doxil this Friday if all goes well with the port. After reading your experience, I have to admit I am a little nervous. This will be my first chemo since 2011 when I was initially diagnosed with early stage breast cancer. I will be getting infusion every 2 weeks instead of every 28 days. How are you feeling now?

    Robin

  • intothewoods
    intothewoods Member Posts: 449
    edited March 2017

    Hi Robin,

    i just had 9 cycles of doxil with cytoxan and did fine. I was every three weeks. No issues during the infusion and I do not have a port. I think doxil is the one that can cause mouth sores so I drank water with lots of ice during that infusion- I read somewhere that can help. Some fatique and acid reflux but I continued to work and would take a day off when needed. Happy to say I had a complete response. Stopping now because there is a maximum amount you can take and I was close to it.

    Best of luck to you! I think you will do well.

  • rpoole1962
    rpoole1962 Member Posts: 413
    edited March 2017

    Thanks! So glad to hear you had a complete response. I hope I do, but I'm not getting cytoxan. Thanks for the ice tip I will definitely try it.

  • Lynne
    Lynne Member Posts: 641
    edited March 2017

    My blood work Friday came out fine. My counts look good. I asked the oncologist what happens if I have another allergic reaction, on the 31st (I get it every 4 weeks). She said we would have to move on to the next chemo, taxane. They are going to premed me with the benadryl, pepcid, and 1/2 hr steroid infusion, as well as me taking 2 decdron for the two days before the infusion. They are also going to keep me at half the rate (3hr instead of 1 1/2 hr infusion), since I was ok with it going that slow. Long day at the oncology office. I start at 9:15 with blood work, probably won't get out of there until at least 1:15. I guess I'll pack a lunch. Praying that I don't have another allergic reaction. I like to breathe!

    Glad you did well on Doxil, intothewood.

    Robin, I'm thinking of you. Praying you do well. This was my first chemo (I opted out when I was originally diagnosed Stage 1 in 2005. I did the Oncotype Dx test, and I had only and 8% chance of recurrence in 10 years. Mine came back in my spine and lungs 7 years later.). I am feeling well now. Finished my Cipro for the kidney infection. My primary made me double up on my blood pressure med, since the steroids increased that. I think it is a little too low this week. I sometimes feel faint getting up. She's going to call me tomorrow (it's been 2 weeks). We may just double up on my chemo week and then go back to normal. I'm a little tired, and my feet peeled a little (I use vaseline at night with socks, and udderly smooth during the day), but other than that no after side effects. Maybe every 2 weeks, will be easier for you. Good luck!


    Lynne

  • rpoole1962
    rpoole1962 Member Posts: 413
    edited March 2017

    Thank Lynn! I hope you do better on the 31st. Seems like if they slow the drip down, you should be ok. I pray you have great results on this chemo!!

    Robin

  • Lynne
    Lynne Member Posts: 641
    edited March 2017

    Thanks, Robin!

  • rpoole1962
    rpoole1962 Member Posts: 413
    edited March 2017

    I had my first treatment of Doxil on Tuesday. They gave me a pre-treatment of pepcid, benadryl, steroid, and anti nausea meds. Then they started the Doxil very slowly and every 15 minutes or so, sped it up just a bit. They started me out on 20mg per squared metered inch and I will receive treatment every 2 weeks. My MO said they would up the dose to 25mg if all goes well with first treatment. I did not have any problems at all. I have been taking my Zofran around the clock and I have no nausea! The neulasta on body injector gave me the dose last night. At first I had some arm and hand bone pain, but took tylenol and it went away. My back muscles were achey so I used a heating pad. I still feel great and hope I continue to feel good.

    Lynne, Good luck tomorrow with your infusion. I pray you have no allergic reactions with your infusion. A slow drip with no reaction is better than speedy drip! My MO gave me the option of doing monthly Doxil or every 2 weeks because you have less chance of side effects. I am thinking if all goes well, I may want to switch to monthly.

    Let me know how your treatment goes tomorrow! I pray everyone on this treatment will have a complete response!!

    Robin



  • Lynne
    Lynne Member Posts: 641
    edited April 2017

    Robin,

    Glad to hear you had no problems with your treatment!!

    My second treatment went well on Friday. I took 2 Decadron a day, on Wed and Thurs. They gave me benadryl and decadron with my hydrocortisone infusion, a half hour before my chemo. Benadryl made me dizzy, that wore off after half an hour. They started the doxil at half speed, for half an hour, then went up to full speed. No issues! My husband stayed the entire time (I told him to leave and come back, but he wouldn't!). I guess he felt guilty about leaving the first time, and me having the reaction. I got the neck and back pain and headache again (not as pounding), and felt lousy (lots of acid reflex) for a few days again. I also had chills and a low grade fever the past 2 evenings (not tonight yet...). I took tylenol and a cool shower, and it went away for a bit then started back up. My husband made me call the oncology office. They said as long as I wasn't having any other symptoms, to keep doing what I was doing. He said if it happens again tonight, he's dragging me to the ER. UGH! Fingers crossed it's not happening. I feel better today, so hopefully no more issues until next treatment.

    Lynne


  • rpoole1962
    rpoole1962 Member Posts: 413
    edited April 2017

    Hi Lynne, Glad to hear you didn't have any problems this time. I felt fine after my first treatment until the neulasta was injected the following day. I had unbelievable bone pain in my spine and back side of my ribs. It was a pounding pain and would be worse when I first stood up and took a few steps. It would pound with every heartbeat, sort of like a migraine does. That pain lasted for 4 days and finally went away. Now the fatigue has set in and constant nausea! I was taking Zofran every 8 hours like clockwork to avoid the nausea and now the Zofran doesn't seem to work. I always have a big problem with nausea and I'm just miserable. My next treatment is coming up next Tuesday, and I may opt out of the neulasta if my counts are good.

    Did you get the nuelasta?

  • Chirps
    Chirps Member Posts: 91
    edited April 2017

    Starting Doxil tomorrow... much to do today but I wanted to touch bases here! Looks to me "not many" of us, eh?

  • rpoole1962
    rpoole1962 Member Posts: 413
    edited April 2017

    Welcome chirps, there are not many of us at all. It makes me wonder why? Good luck with your treatment tomorrow and let us know how it goes!

    Robin

  • rpoole1962
    rpoole1962 Member Posts: 413
    edited April 2017

    Hi Lynne, Today is day 11 after receiving my Doxil. I have a low grade fever of 100.7 and feel like I have the flu! I did not think I would have any side effects this far into it. My MO said I would feel bad a couple of days! Yeah Right!!!

    Is that how you felt when you had the low grade fever?

    Robin

  • Chirps
    Chirps Member Posts: 91
    edited April 2017

    Howdy!

    Doxil #1 went off totally fine (started almost 24 hrs ago). What a relief! I'm leaving for the afternoon soon but will be checking in here hopefully later this weekend. I think yesterday is counted as Day 1. Really I have felt only the steroids so far. I have blood work on Day 8 ("8" if I know how to count the day numbers correctly). They say I'll get the Nuelasta only if my blood work then is very low.

    Robin, what is your cycle interval---4 weeks? That's what mine is. I was told "Your counts would typically be at their lowest day 10-14 after chemo, recovering around day 21" as a general rule. This might be what's underlying your symptoms? But you had the shot, so I'd think you'd not have terribly low counts now?! Sorry you're feeling so crummy :( ... hopefully you'll pull out of it soon! Did you call to talk to someone about your symptoms? Hope you're not getting sick. Please consider calling (if you haven't yet) to get their input. Personally I'd call! NOT to worry you, just to make sure your team is informed and will be keeping you out of trouble!


  • rpoole1962
    rpoole1962 Member Posts: 413
    edited April 2017

    Thanks Chirps, I did call my MO and she told me to to the ER in case I was neutropenic. They ran several different blood test and I was not neutropenic, but my WBC was high at 16,000. They told me I had some kind of infection, but not sure what. The ER doctor said it was probably viral. He put me on a 6 day corse of antibiotics. I feel much better today but I am wiped out energy wise. I am supposed to have my next chemo on Tuesday. I am glad your first chemo went well and I hope you are free from side effects. Let me know how you are doing.

    Robin


  • Chirps
    Chirps Member Posts: 91
    edited April 2017

    HI Robin, so glad you had it checked out! Not sure why they'd give antibiotics if they think it's viral but maybe just for in case it's bacterial. ? Soooo good that you're feeling better! Now you hopefully can rest up with some serious napping. Tuesday will be here before long... sounds like you're on a 2 week cycle, so maybe things they tell me about what to expect will be different for you, idk!

    Robin I see you had xeloda for a spell... when you're up to it can you tell me how that went for you? There's talk about that Tx as a next option for me.

    Today I discovered that one of my huge trees fell against my house while I was gone to Chemo! Wind and rain. Ugh!

  • rpoole1962
    rpoole1962 Member Posts: 413
    edited April 2017

    Chirps, Yes you are correct I am on a 2 week cycle. The ER doctor gave me the antibiotics in case it was bacterial, but thought it might be viral. I was on Xeloda for a short time and my MO didn't think it was working and wanted to switch treatments. AT the time she switched me my tumor markers dropped 20 points. So she admits that we didn't give Xeloda enough time. I had severe nausea the entire time I was on it. I didn't get hand and foot, but then again, I wasn't on it long enough.

    I hope your house did not get damaged!

  • Lynne
    Lynne Member Posts: 641
    edited April 2017

    Welcome Chirps! I am also on the 4 week cycle. I've had 2 treatments so far. Will have blood work on Friday. Sorry to hear about the tree. Glad your treatment went well. I was also on Xeloda for 2 years and the only side effect I had was the hand foot syndrome (my feet peeled a few times), but I started taking 100mg of B6, and that stopped it. I went on Ibrance after it stopped working, for 6 months (it did not work at all), and then started Doxil.

    Robin, my fevers started after a couple days the first time. They went high as 102. I went to the ER the first time, and found out I had a kidney infection (3 days after the first chemo). I was put on cipro. I had the same thing happen the second time around. It started 2 days after chemo, with chills, and temp from 99 to 102. I took some tylenol and a cool shower, and it went down the first night (Sunday), it happened again in the morning and I called the office. The nurse called me back and said the PA said to just keep doing what I was doing, unless other symptoms happen. They didn't. I guess this is just how my body acts to it. I'm glad you went to the ER. Chirps is correct that our immune system bottoms out between day 10-14 (that's when I have my blood work in between, 2 weeks after my chemo). I'm glad you are feeling better.

  • rpoole1962
    rpoole1962 Member Posts: 413
    edited April 2017

    Having a hard time on Doxil. I have been in bed the entire two weeks since my treatment. The nausea has been bad and for about the last week my stomach is sore to the touch and when I lay on my side it hurts. It even hurts when I get up and move around. The nausea is 24 -7 and I have some of the worst heartburn I've ever had. I am supposed to have treatment #2 tomorrow and I am thinking of stopping this drug. I have a bad feeling that every chemo is going to effect me this way.

    :(

  • Chirps
    Chirps Member Posts: 91
    edited April 2017

    Robin, oh Dear! So sorry you're having all this trouble. They gave you multiple nausea meds didn't they? I think mine are zofran each 8 hrs as first line, and a 2nd medication (cannot find name) if that's not enough. I wonder if your symptoms are from whatever bug you might have? And if so it might run its course with time? So sorry you're feeling so sick. I hear your discouragement but please don't give up hope... are you able to stay hydrated or keep anything down? Hope you're feeling better soon.

    Lynne thanks so much for all the helpful info. Really appreciate!

    Got lucky with tree, now cleared away along with another. House still needs repair but looks like it won't be bad, the flexible spruce limbs seemed to protect much of the roof where a lot of the tree came to rest.

  • Noni
    Noni Member Posts: 327
    edited April 2017

    Robin, I had terrible heartburn on Doxil too. Keep up with the two nausea meds (Zofran and maybe combazine or reglan) and you can add prilozec or similar. Could the stomach and side pain be the start of the rash? I had the rash head to toe and it was the worst on my elbows and sides. The pain was there even when the rash wasn't as visible.

    I wish you all luck with the Doxil.

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