All About Doxil
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Frisky: I have not had any ups and downs in my blood pressure since being on Doxil, or any of the other chemo medications for that matter. I get an echocardiogram once every three months because any infusion like Doxil, AC etc. can damage the heart. I hope your infusion goes well and you get your BP issues resolved. Nothing to fool with. Please let us know what you find out!
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Wallaby, your headache could be caused by the chemo nurses pushing one of the drugs too fast. Tell them about the headaches and ask them to push slower.
Frisky, have you seen the cardiologist yet?
My onc and I think Doxil is working because I do not have liver pain any more, and the spot that felt hard or swollen is more normal. I get infusion #2 the beginning of December, and we will scan at the end of December.
I have been looking into how it is that we can get this drug just once a month. Apparently the liposomes work like a slow-release pill for about a week. So I am thinking that during weeks 2 and 3 maybe I can ease up on hfs prevention and have a soak in a hot bath, which I never dared to do on Xeloda. Also I read that green tea may interfere with Doxil (food for breast cancer web site). But maybe I can drink it weeks 2 and 3. Do you guys have any info on how Doxil works over the cycle?
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hi all, I have not seen the cardiologist yet...I've been feeling kind of depressed lately, reading these boards and all the mixed messages we all get from our doctors regarding the unreliable TM, the opposite results and readings from pet and bone scans, I can't shake the feeling that the blinds are leading the blinds
Then I read the good news from you Shetland and I feel more hopeful. very happy Doxil immediately fixed your problems.
After a long period of pain free existence, I woke up the week after the infusion with an acute pain located under my left breast. The pain emanated from a spot on my rib cage and the surrounding muscles. I first approached it as if it was an inflammation with an increase of Omega 3 and of course my favorite remedy oil of magnesium applied right on the spot! The pain dissolved immediately and I was of course very happy!
the pain instead returned in the same spot 3 days later as a diffused ache, this time affecting just the muscles...now...many days later it's fading away, but it has nonetheless left me with the feeling that I might be progressing...Doxil is very active one week to 10 days after the infusion, I don't know anything about green tea but my mo told I shouldn't take the doxycycline when I told her I was doing the COC protocol...so I stopped....FOR NOW...
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I had #3 Doxil treatment November 5 with a 10% dose reduction. I was already been having some darkening of the skin and minor allergic reaction for the first 2 infusions. I called my MO last week with symptoms of skin “rash” and burning under the arms. I was told this was normal and common with this chemo. The rash started to spread down my arm, abdomen and leg, painful burnin, turning more to a reddish purple color, complete with skin peeling. It was worse on my right side which is my port side. Yesterday I begged the oncologist to get me an appointment with oncology ER (adtu). They could not help and referred me to a dermatologist specializing in cancer since no one was able to see me the same day.
I have TEC, toxic erythema of chemotherapy as well as carp, Confluent and reticulated papillomatosis. I am quite skeptical as I only received a topical steroid cream to apply to my “rash”. There isn’t t much info on this topic online or the BCO threads. I’m not sure if my liver is processing the chemo properly. I think the only way to resolve the issue is to get it out of my system totally.
I see the MO on Tuesday and have scheduled infusion of Doxil #4 and Zometa.
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Bbpie I'm so sorry to read about the terrible skin reaction from Doxil.. it looks as if we have had similar experiences. My mo did reduce the dose, but now it looks as if it stopped working...
I hope your skin problems get resolved....while benefiting from the treatment.
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Frisky...how long have you been on Doxil? How soon after your skin reaction did you have your next dose? I’m due for another Tuesday along with Zometa. The dermatologist also recommended 200 mg daily of vitamin B6. I’m taking it, but will check with MO. They had me stop all vitamins when I started Taxol.
Hope you allhad a nice a Thanksgiving!
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bbpie...I have been on Doxil for six months and the skin problem came on last month...my last infusion, two weeks ago, was reduced due to the skin discoloration and laceration...
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Oh dear. I just noticed some mild darkening/redness under my arms that extends along my inner arm and down my sides. It’s only two weeks past my first dose.
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whatever you do....don't try to clean the areas...rubbing will lead to lacerations and bleeding...and scars...imagine what this shit is doing to our insides....
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Hi All - So sorry to hear Frisky, bbpie, and Shetland are having skin issues. I have not had those (yet), just continuing Hand and Foot. I hope Doxil is working for you even though you're dealing with the skin issues. I have my next infusion on December 11. So far, my scans have come back as "stable" and my TMs are 37, the lowest they've been since February, 2017. At the moment, Doxil is working for me. I always hesitate to say that because we all know the treatments can stop working at the drop of a hat!
I hope you all had wonderful a Thanksgiving!
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Hello friends, Doxil failed me and I’m moving on to novalbine....good luck to all of you!
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Good luck, Frisky! May navelbine give you great results.
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Good luck, Frisky! I hope your next treatment is the ONE!
Cindy
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thank you guys! I’m starting the Navelbine on Friday...not looking forward to it...good luck to both of you with Doxil, may be effective with minimum Se
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hello new friends
I am starting doxil tomorrow. Tried faslodex/verzenio for 3 months and Xeloda for 3.5 and neither shrunk my liver tumors. 🥴
Questions
Did you lose your hair or just thinning? I am going to try penguin cold caps just to be sure I keep mist of my hair
What are some of the SE out there? I am still healing from HFS on Xeloda.
Any hints or tricks to help through this chemo? I read about a rash
What is the length of time you have been on doxil? My friend with ovarian cancer lasted 1 year and is now going well on a break with only arimidex plus plant based diet.
Thanks for helping with the questions. Hoping for tumor shrinkage. 🙏🏻Need to get control. Will be adding in y-90 treatment if I qualify.
Dee
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Hello, AlabamaDee. Though I have not updated my stats yet, I tried Halaven and am now on monthly Doxil. I just had infusion #2 so am still a Doxil newbie. I use cold gloves and socks, and suck on ice cubes, to stave off neuropathy. I start 15 minutes before and continue 15 minutes after. My severely thinned hair, from Halaven, is actually starting to fill in. I decided I was not up for the time, discomfort, and expense of cold caps. The only tip I have so far is to have the nurse push the Benadryl premed slowly if you tend to react to things, so you won’t get restless, crampy legs. You already know to avoid heat, pressure, and friction on your hands and feet. The redness on my inner upper arms and sides has not worsened and is not painful or itchy, so it isn’t much of a problem. Just keeping an eye on it.
Wallaby, it’s good to hear you are having success with Doxil! May it last a very very long time.
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Welcome Alabama Dee! I was also on Xeloda before Doxil and have H&F. It's better now, for the most part, but still hasn't gone away. My hair has thinned somewhat but nothing to get excited about. The best thing is my last scans were stable, no new disease, my liver lesions have shrunk some more and my tumor markers are now 35! I hope you find success from Doxil and minimal SEs.
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Shetland: Thanks! I'm very pleased but at the same time wary, as we all know things can change quickly with this disease.
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I had 6 cycles of Doxil. Stable now with numbers going down.
My doc said that's it, 6 cycles is max.
I dont understand, if its working why stop.
I will see him beginning of January, and like to have some smart answers.
Thanks
Carol
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Hi, Mamita/Carol. I would have the same question. I do know that heart health is something to keep an eye on. Do you have any history of heart problems? I had a baseline echocardiogram and I assume another will be done at some point. Is your oncologist experienced with treating mbc patients with Doxil? According to my research doxorubicin liposomal/Doxil has a better cardiac safety profile than simple doxorubicin/Adriamycin/Red Devil. Is your oncologist clear on the difference? Is this an individualized decision or a general rule? If a general rule, I would want to know where it comes from. Or maybe he thinks that right now the risks outweigh the benefits for you since you are doing well?
“Comparison of safety and toxicity of liposomal doxorubicin vs. conventional anthracyclines: a meta-analysis”
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Welcome Mamita! I just completed my 8th Doxil infusion on December 12. When I saw my MO on the 11th, I specifically asked her about the life span of Doxil treatment. Her response was that it depended on the health of my heart. I get an echocardiogram every 3 months and, so far, I have no issues. And, obviously, it depends on if it is still working! So far, my TMs have gone from 205 to 35 and my last scans in November were “stable, no new disease” and my liver lesions have shrunk. As we all know, with this disease, treatment regimens have finite lives and each of us reacts to treatment differently. I certainly would want a definitive reason why your MO was going to stop an effective treatment. I was on Ibrance for 18 months (withTMs as low as 21) and if my MO had said “we’re stopping the Ibrance” after 9 months, I would have been upset and would sure as heck have wanted to know why! If you don’t get a satisfactory answer, you could always get a second opinion.
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mamita
my friend with metastatic ovarian cancer was on doxil for a year with good reduction of numbers. She is now on letrazole for maintenance. She went on the plant based diet and her numbers dropped even more.
My papers say that there is a limit to how long to be on doxil but does not say what it is. I read that being on doxil more than a year can make you more at risk for heart issues and mouth cancer.
I know that if something is working we want to stay on it. Maybe you can ask your MO to show you the standard of care and why she is stopping at 6 months.
Any of you taking neulasta or nupagen fo WBC?
Dee
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hello all, i have read back a few pages but wasn't prepared for this side effect. I'm on weekly doxil which I assume is given as lesser strength but i am so out of it, nausea dizziness, worse than any chemo before it makes me wonder what's wrong, is this common? Push was on Tuesday and felt pretty good yesterday. If anyone has any suggestions to get me out of this please give me ideas. I hope to make a formal introduction soon.
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Kayla, I don’t have much to offer. Having had two monthly infusions, I can say that I felt tired, achy and feverish around days 4-6 or 6-7, then better. I think you should call your cancer center’s 24-hour line or after-hours number to check in. Take your temperature.
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Thank you Shetland...I’ll call the nurses. It seems nothing goes normal for me.
Hope I’ll have better news tomorrow.
good night all
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Anyone have severe hand foot syndrome with doxil? I was doing great then on day 11 after my first infusion it hit me hard and I am in so much pain. My hands are red and swollen with the painful cracked skin so I can hardly hold a fork. my feet are burning so bad it is hard to walk. I have mouth irritations too. Xeloda was much less HFS issues and I got a break on that cycle.
I am on day 15 of doxil, thankful that I made it through Christmas with 13 family members at my house. At least my stomach is not affected, but I have been overeating from the stress and holiday goodies- gaining weight I worked so hard to get off this past year. Now I just want to cry.
I will tell my MO on Monday. There is not much they can do. I have pain pills and magic mouthwash I have been using. I had 90 mg of doxil so I guess I will ask for a dose reduction.
I am supposed to fly to Houston on Jan 6 for Y-90 mapping. If I hurt like this I wonder if they will say yes. My labs were fine for being on chemo.
Thanks for letting me vent.
Dee
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Dee, I still have HFS from Xeloda. On Xeloda, I was almost as bad as your description of your symptoms. When I first started on Doxil, I thought it got worse. I also get mouth sores from Doxil. My MO recently reduced my dose from 90 to 72, to see if it would help either of these SEs. I now have much lower TMs since I’ve been on Doxil so I was skeptical about lowering the dose. I do have to say even though I still have HFS and mouth sores, they are not as severe as they were at the higher dose. I do the gloves at night with bag balm occasionally, as I live in a dry climate (Las Vegas) which adds to the dry, cracked skin issue. As for the mouth sores, my insurance wanted an $85 co-pay for the Magic Mouthwash so I said no thanks! I use salt water rinse and also baking soda/water rinse. I struggle through it for the normal range TMs plus my last scans showed “stable, no new disease” and my liver tumors shrunk some more. Even on the lower dose, my TMs have gone down a few more points. I could say “just struggle through it” but we all have our own limits. It’s best discussed with your MO. Good luck! Cind
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Dee, I also have swollen red hands, cracking skin, etc. Small doses of ibuprofen help my hands. Steroid cream also helps if you can get some.
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Thanks Laurie and Cind you encouraged me to keep going at least one more dose.I am going to ask for a dose reduction and steroid cream.
I have Lymphadema in my right arm and hand so I am having trouble with wearing my glove and even putting on my sleeve hurts my hands.
Stupid cancer
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good news - the doxil SEs are beginning to lessen I can actually close my hands (so swollen and painful since Christmas) and I can walk with out the gel socks inside my crocs. I am getting a dose reduction for the next infusion thankfully.
heading to Houston on Sunday for y-90 for liver mets. Thankful for the 2-prong approach chemo and local.
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