Fill Out Your Profile to share more about you. Learn more...

All About Doxil

wallaby715
wallaby715 Member Posts: 183

As I haven't seen a specific page related to just Doxil treatment, I thought I'd start one because that is likely my next treatment progression and I've seen little discussion of it here. So, who has been on Doxil? What were the SEs? How did it affect you after the treatment, i.e. how long were you not feeling well or completely "down"? How long have you been on it? Anything else you can think of to relate would be helpful! Thank you!

Cindy

«13456712

Comments

  • tina_marie
    tina_marie Member Posts: 67

    I'm definitely interested in this thread. I start Doxil next week. Thanks for posting, Tina

  • Yndorian
    Yndorian Member Posts: 236

    I think doxil is lyposomal doxorrubicina (like Adriamicyn which is not lyposomal) I had Adriamicyn in my AC cycles. Is the famous red chemo. I had it with cytoxan, so I can't separated the SE from one to other. My SE: low wbc, nauseas, gum sores, bone pain and of course all my hair was out at week 2

  • Yndorian
    Yndorian Member Posts: 236

    I've just realized that I wrote in a stage IV only forum. I'm sorry

  • wallaby715
    wallaby715 Member Posts: 183

    Hi TinaMarie!

    Glad this post interested you. I haven't started Doxil yet but am scheduled, tentatively pending scan results, to start the end of this month. I am on Xeloda now and apparently it has stopped working :( I had A/C on my first rodeo with this back in 2006 and it was horrible! I'm hoping, and my MO says so, that this is not as debilitating as the A/C treatments were. At least it's only scheduled for once every 4 weeks. I'm hoping we both gain some information and insight into the treatment. Thanks for responding!

  • wallaby715
    wallaby715 Member Posts: 183

    Yndorian: It's OK, I'm glad for any participation and information. I also had A/C, Red Devil, in my first rodeo with this stuff back in 2006. Yep, by the second treatment my hair was coming out in clumps! It was the week of Christmas and I finally stood in front of the mirror and said "why am I trying to keep this hair?? It's going to come out regardless of what I want!". So I got in the shower and shaved it all off with a razor! I felt so much better after that! According to my MO the Doxil they give to Stage IV patients is different - less toxic and supposedly no hair loss. I'm hoping for less severe SEs, i.e. nausea, fatigue but I'll find out the end of this month!

    Good luck to you!

  • tina_marie
    tina_marie Member Posts: 67

    Going for my Doxil 'teach' today... tomorrow is my 1st Doxil treatment, will keep you posted!

  • wallaby715
    wallaby715 Member Posts: 183

    Tina: Please let me know how it goes! I'll be interested to find out what they "teach" you about it. I don't see my MO until April 29, so will get the scoop then. However, if my danged insurance company doesn't approve the two scans, I won't be having my first treatment on the 30th. Good luck!

  • tina_marie
    tina_marie Member Posts: 67

    My "teach" was good... I usually sit with the PA (who's a smart cookie!) and she goes through all the complications, side effects and any questions that I have... she spent about a half hour with me. This is nice because the MO basically says this is what treatment we are going to do and why... then they set up the teach with the PA to go over all the details.

    So what I learned about Doxil is it is in the same category of the AC treatment... which I handled very well except for becoming nutrapenic (sp?) where my wbc would drop considerably. This was good news for me because I'm coming off Taxol which I wasn't handling well at all.

    So today at 12:15 I have my 1st treatment... she said they give me the drip very slow the 1st time to be sure there's no reaction. I told her I was going to take a lorazepam, but she offered to add that to my premeds in the IV..

    Good luck with getting your scan's approved... I'll keep you / everyone posted on how it goes today.

  • tina_marie
    tina_marie Member Posts: 67

    Had my 1st Doxil today.. . no issues at all at with the infusion.. and doing well so far. Im actually heading out to hear somebody speak at my church. Doing well so far.. I'll keep posted about SE.

    Have a good night all.


  • wallaby715
    wallaby715 Member Posts: 183

    Tina: Glad to hear your infusion went well. I hope the days following are SE-free, or as good as possible! Keep us posted!

  • tina_marie
    tina_marie Member Posts: 67

    Wallaby715 - I will, How are you doing? Any update on your progression or hopefully lack of??


  • wallaby715
    wallaby715 Member Posts: 183

    Tina: still waiting for the imaging facility to call me for an appointmet for the CT/Bone scans. Supposedly they get the approval from the insurance company and then call me to make the appointment - at least that is always how it worked in the past. The silence is worrying me but I haven't received a denial letter from the insurance yet so I think I'll call my doctor's office tomorrow a.m. and see if they've heard anything from them. I need the scans so my MO can make a decision. I also have to have an echocardiogram but no sense in scheduling that if there haven't been any scans! Did your MO have you get an ECG? In 2006, I had to get a MUGA scan before I could have the A/C.

    Still bloated up like the Hindenburg so I'm thinking Xeloda has run it's course even though I am on my week on this week. I don't particularly feel bad just the bloating is SO uncomfortable! If I have to move on with treatment, I'd just as soon get at it!

    Cindy

  • wallaby715
    wallaby715 Member Posts: 183

    Hi Tina,

    I know it's Easter today but I have been wondering how you are doing after your treatment? Wishing you a peaceful day with family.

    Cindy

  • tina_marie
    tina_marie Member Posts: 67

    Hi Cindy... I feel like I did after the AC treatment... just very drained and weak... starting to feel better this weekend... I remember when I was on the AC treatment after the 1st weekend I started to do better. Then later the 2nd week while on AC tx... my WBC would start to drop... so hopefully that won't happen this up coming week.

    I did hav a nice day with family... what about you? Do you go to church for Easter?

  • wallaby715
    wallaby715 Member Posts: 183

    Hi Tina - Gald to hear you are feeling better. I remember A/C well. I got mine every other week on a Thursday. On Fridays I'd feel like I was on a rocking boat with a queasy stomach! Saturday and Sundays I'd be like a dish rag. Of course, as treatment went on, recovering stretched over more days. Did you have any nausea? I know with A/C they gave me Decadron in the IV but even the day after I had some queasy stomach issues but no vomiting. I also had Zofran for the nausea. I'm hoping to avoid the queasy stomach stuff this time around. I'm just hoping it starts taking care of the bloating from the ascites...that is really driving me crazy! I have the appointmets for two of my scans, CT and bone. Now for the electrocardiogram and I'll be set. All this chasing around is irritating.

    As for church, no, I don't go but not because I have any aversion to going but just got out of the habit and an organized church. I grew up in a small New England town that looks like it came off the picture on a postcard! My parents were active in the First Parish Church and even worked on the church suppers they had. When we moved to California when I was not quite 8, they never went to church again. Didn't think about that much then as I was a kid and they were working really hard to establish our new life in Cali. I used to go to church with neighbors and later with friends from junior and senior high but never really stuck with one. My mom used to say we were "home baptists"...LOL. I do believe and I do believe in life after death - I've had too many examples not to. Off to call the cardiologist! Have a good one!

  • msmann63
    msmann63 Member Posts: 54

    Hello All -

    I am 3+ year (this time) MBC patient with bone Mets. During this time, I’ve received (in order) Taxotere, Ibrance & Letrozole, Abraxane, and most recently, Taxotere again. I’m scheduled to start Doxil on Thursday. After reading about this drug and from info I’ve received from members of other forums on other sites, I have to say I’m afraid of this drug. I have had MAJOR side effects from every infusion drug I have received. I’m concerned about the SE from this one.

    Any info you can share will be greatly appreciated.

  • wallaby715
    wallaby715 Member Posts: 183

    msmann63: When I heard I was going to go on Doxil, I looked on this website for information about it. It was scattered all over pages relating to different mets locations people had. So I thought I'd have a page exclusively for Doxil just to get more information in one place. So far, Tina and I are the only ones who have responded. As you can read, Tina has just had her first infusion of Doxil. I will start mine likely in about 10 days or so. My MO has said that Doxil is less toxic than A/C, the Red Devil (Adriamycin/Cytotoxan) that I had for my first chemos in 2006. I'm hoping she's right and that I'll only have the "dish rag" response to Doxil, not the "queasy, I must be on a rocking boat" reaction I had with A/C! She also stated that the infusions would be once a month, not the every other week schedule of A/C, which would allow a longer period of recovery before the next infusion. Please stay tuned to see if we can attract more people to this page and thus get more information out there. Good luck with your first infusion Thursday - I'll be thinking of you! Please let us know how it goes.

    Cindy

  • msmann63
    msmann63 Member Posts: 54

    Thank you, Cindy! I’ll let you know how it goes. I’m the “queen of side effects”. Praying they aren’t severe with this one.


    Bridget

  • tina_marie
    tina_marie Member Posts: 67

    oh wow... lots of catching up to do... I'll post back later!

  • wallaby715
    wallaby715 Member Posts: 183

    Tina: Are you doing OK?

  • msmann63
    msmann63 Member Posts: 54

    Hi guys -

    Received first Doxil treatment yesterday. Had a bag of steroids, a drip antinausea med, and an anti-nausea injection. Waiting for my Nulasta On Pro to do its thing by 5pm.

    No issues with the infusion. I'm taking nausea meds every 6 hours faithfully. Have slept nearly continuously since yesterday, but that keeps me off my painful, blistered feet. I've felt like a dishrag today. Will wait and see if I develop any other side effects (mouth sores, digestive issues). Praying that I don't.

    How are you guys?

    Bridget

  • tina_marie
    tina_marie Member Posts: 67

    Hi Ladies... yes I'm doing ok.. I'm on day #10 after my 1st Doxil day 7-8 I was completely wiped. I'm feeling better today. But I've been dealing with other pain issues in my right shoulder and right abdomen. MRI showed more lesions in my bones so they are going to send me for radiation and then a sono on my abdomen.

    Besides the fatigue, and starting with mouth sores, I really haven't had any major side effects.


  • msmann63
    msmann63 Member Posts: 54

    Hi Tina - I’m glad you’re tolerating the treatment well. My 1st was yesterday. Other than sleeping a lot, I’ve had no other side effects yet. I know it’s early.

    You are in my prayers!

    Bridge

  • wallaby715
    wallaby715 Member Posts: 183

    Tina & Bridget: Glad to hear you are both doing reasonably well. If mouth sores are a SE, I'm sure not looking forward to that! I had those when I was on Affinitor/Exemestane and they were terrible. I hope you can keep them under control, Tina.

    Well, I am dealing with either incompetence or just downright not doing your job! Today I was supposed to have my CT scan, checking in at 3:30, which I did, after trying to down 32 ozs. of water (hard to do when you're blown up like a balloon with ascites!). So I go through having my paperwork processed and paid the co-pay, go sit down to be called, and I can hear the check-in guy (a kid, younger than my son but very nice) say to his co-worker that the two referrals they received from the doctor's office don't match. One says chest/abdomen with contrast and the other says "with and without contrast". They said they had tried to contact the doctor's office since April 22nd but they haven't called them back! He called the doctor's office again while I was sitting there and they were already gone! Needless to say, with contradicting referral orders, they couldn't do the scan. I was torn between picking up the chair and tossing it through the window or sitting down and crying. I just wanted to get it over with and get to the treatment! He said he will call them Monday a.m. and then let me know and maybe they could combine the CT with the bone scan on Tuesday. That would probably be a miracle. I'm SO uncomfortable with the bloat and now just both angry and discouraged. I'm generally an optimist but it's getting more difficult to maintain that outlook. I just want to get started on the treatment and get some relief from the ascites issue.

    I hope both of you have a great weekend as free from SE's as possible! I will be captaining my recliner for most of the weekend!

    Cindy

  • msmann63
    msmann63 Member Posts: 54

    Cindy - I'm so sorry you're getting the medical runaround. Been there and it's frustrating. I pray they can get the issues resolved quickly! You are in my prayers!

    Bridge


  • wallaby715
    wallaby715 Member Posts: 183

    Thanks Bridge - those of us going through this know how hard it is to both fight the disease and a bureaucracy! Hope you are doing well this weekend!

    Cindy

  • msmann63
    msmann63 Member Posts: 54

    Hello Ladies:

    Just checking in and checking on how you are doing. I'm not too bad, just tired all the time since Thursday's treatment. Constipation seems to be an issue, so out came the Miralax (TMI. I know). Not much of an appetite. Still taking nausea meds around the clock so as to not have that issue. Lots of muscle and bone pain from the Neulasta, despite the Claritin, but that will pass. The foot blisters are still nagging me.

    I hope y'all are doing well. Always in my prayers...

    Bridget

  • ABeautifulSunset
    ABeautifulSunset Member Posts: 600

    I was on Doxil for three months. Unfortunately it didn't work for me, but I sucked on ice the entire time I was in infusion, and I never got one mouth sore.

    Sunset



  • msmann63
    msmann63 Member Posts: 54

    Thank you for the ice cube tip, Sunset. They had me hold a block of ice in my hands, but mentioned nothing about the mouth. Wish I knew what to do with my foot blisters which developed during Taxotere treatment.

    I hope you are doing well. Have you switched to another chemo

  • wallaby715
    wallaby715 Member Posts: 183

    Sunset: Great tip on the ice! What other SEs did you have while you were on the Doxil?

    Cindy