Doxil, what can you tell me about this chemo treatment?
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Hi all! I hope everyone is doing well. My second treatment is tomorrow! Going to try to convince my MO to leave off the Decadron this time. I read it impacts the efficacy of Doxil which freaks me out. The first round went well. Some very minor rashes on my arms and some minor HFS. Had my Y90 procedure on my right liver lobe last week. The IR and my MO are convinced that Doxil and the Y90 will work "synergistically". I hope so!
Welcome, Lisa! I was given Decadron and Zofran my first round but looking to drop the Decadron. The side effects are minimal and this is supposed to be a very powerful drug.
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JFL,
Instead of completely stopping the decadron, how about you minimize the dose? I tried going steroid free, and spent most of the month fighting nausea. That was un-fun. For a person my size, the standard dose is 8 mg., and I'm on 4 mg. I might ask to go back to 8 mg., as I'm still having trouble with nausea.
The steroid shouldn't impair Doxil's effect on the cancer, and it is cardio-protective. Something to do with its anti-inflammatory effect on our blood vessels.
Had my 12th treatment two days ago.
Frankly, the thing that gets me down the most is my wonky vision. I'll be getting cataract surgery May 1 and 8, and am looking forward to symmetrical vision. I think it'll be a huge jump in QOL.
For me, Doxil has been very manageable. It hasn't beaten back the mets, but has kept me stable. I have no hand/foot peeling, have kept most of my hair, and love the once a month schedule. The SEs I have are nausea and anemia fatigue. The nausea is kept at bay with Zofran. I'm leery of taking iron supplements for the anemia, because I have read that it can accelerate Doxil's cardiac damage. https://www.ncbi.nlm.nih.gov/pubmed/17599610
Plus, cancer doesn't thrive in a low iron environment. The practical effect is that I'm tired. I take Ritalin for the fatigue, and it keeps me from being a pure sofa slug, but I still have to gear up for physical activity more than I'd like to. The upstairs region of our house has become a foreign land.
But, it is good to be "on the right side of the grass".
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Blainejennifer, thanks for your response. Getting infusion now with no Decadron as I am reading your post. Nausea all month? Oh no, I am not looking forward to that. If it is cardio protective, that is definitely something to consider. My DH found a contraindication of Decadron and Doxil in the official site doctors use to look up drugs. It said it reduces efficacy. Last appointment, he showed my MO and they spent a long time milling over whether to give it to me and even discussed with the pharmacist at the cancer center. I am hoping my side effects are not worse this cycle without Decadron!
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JFL,
Don't let me get in your head! I'll bet you do great without steroids. I'm a delicate flower when it comes to chemo, and will get a funny tummy at the drop of a hat.
I'd love to read that article on steroids and Doxil. Do you have a link available? If it really it better, I should look at ways to achieve it.
All the best wishes.
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My first four infusions were ‘the red devil’. Honestly can’t complain, although they loaded me up with Dex and benedryl pretreatment (made me ravenous). I started losing hair fast after the second infusion. Only nauseous after the first treatment, and only vaguely so on the other 3. It made me pee fire engine red. Besides expected fatigue (not too bad) I didn’t find it unbearable. I expected much worse. Neupogen...THAT was another story!
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Hi Egads! Are you taking classic doxorubicin (Adriamycin/the red devil) or the liposomal formulation (Doxil)? Sounds like you are describing the classic version with more side effects?
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Hi JFL - I stand corrected! It was indeed Doxorubicin. Strangely enough the chemo nurse referred to it as ‘red devil’, I guess because it was red? Anyway, not sure if I had more SEs than usual, I just went with it at the time (4.5) years now.
I had to pull out my original paperwork to answer you...what a creepy experience that was...I keep it put away in the back of a closet...kind of like one stores a lawnmower awayin winter lol!
Hope my original rely didn’t confuse y’all!
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I have read nothing but horror stories about doxil. I think I am going to refuse it. I have not had any quality of life since last June. Nothing is working and maybe it's time to stop being in denial. I can't take nausea, mouth sores, heartburn, continued exhaustion for something that has no guarantee. Telling my family is going to be tough. But it is about me now.
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Lisa,
There's a difference between Doxil and Doxorubicin (aka Red Devil). I've had both. The latter was part of my early stage treatment, and it sucked. I still can't stand the smell of ice, as the nurse had me suck on an ice cube while she pushed the drug to prevent mouth sores. One time, the smell of ice alone sent me into a panic attack in the chair because I knew what was coming. It left me flat on my back for days.
This go around, I've been on Doxil for almost a year now. Still have my hair, and still have very good quality of life. It is a complete difference from Doxorubicin, trust me. Why don't you try it for a cycle or two? You can always stop if it sucks. I'd just hate to see you not take advantage of a pretty good drug. It's once a month administration, a short time in the chair, and pretty minimal side effects (compared to Taxol and Halaven).
It looks like you've just been on the Taxanes. Doxil is in a different family of drug, and you might find that it packs the punch your cancer cells will succumb to.
But, it is your body and your life. Any decision you make will be the right one for you.
Hugs,
Jennifer
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Thinking of you, Lisa. I hate that you have suffered so much in the last year.
My experience with Doxil (liposomal doxorubicin) versus Adriamycin (doxorubicin aka The Red Devil) is similar to that of blainejennifer. Doxil is a breeze and Adriamycin is rough. Egads007 did not take Doxil, she took Adriamycin only and many people confuse the two but they are night and day different.
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I had my first doxil infusion yesterday. So far so good. i had adrymacin in 1998. it was the worst chemo ever. do either of you have it in your liver? I do and i am scared it won't help because abraxane and herceptin failed me.
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LisaJo,
Let me put it this way, before Doxil I had liver lesions. On Doxil, I have one tiny little scar. It's a good drug for me.
Take care,
Jennifer
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Lisa, my liver is about 25-35% mets right now, depending on who I ask and which scan they review. On balance, this is an improvement as 2 years ago, it was about 70% mets. I just started Doxil but have had luck in the past with a subsequent drug working better than the previous one. This is a roller coaster and not necessarily a downhill slope. I just moved over from Abraxane as well. The mechanism of action between the taxanes and doxorubicins is different so they don't necessarily have cross resistance. Am I reading correctly from your profile that you have had mets for nearly 5 years and have made it all that time on only taxane chemos? That in and of itself is very impressive. I don't think many could make it nearly 5 years on taxanes alone.
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Yes, the taxenes were my first chemos. I was lucky to have had some luck on aromasin. But now things are growing. I have to get a liver biopsy because we are not sure I am Her2+. So I hope this doxil works regardless
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I am also on doxil. I just had my 4th dose yesterday. My quality of life is good. I have some fatigue the 2nd week and more tenderness on my feet the third week. I am back to normal the 4th week. My MO is happy with my lack of major problems with side effects. I hope it works well for you.
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I’ve been on Doxil since early December. It has helped shrink my liver mets thus far. Hoping it does the same for you!
Babs
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Hi all. I know some of you have experienced rashes. It looks like the rash effect is kicking up for me this round. Have you found anything that helps the rashes?
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JFL,
I've had all the rashes. What does yours look like? Solid, bright pink slightly raised tissue, or hive-like, or patchy? Usually, my MO will prescribe a steroid cream. The one time it was fungal, he went with Nystatin.
Avoid hot baths and soap, tight clothing in the affected area, yada yada. You know, the whole inflamed skin routine.
Hope it clears up for you.
Jennifer
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Thank you ladies for the encouragement. I don't feel good today. Very tired and I have not been able to go to the bathroom in almost a week. So of course I think my liver is failing. Also have a headache. I am extremely anemic and wonder how to fix that.
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LisaJo,
The constipation is a Doxil thing. What are you taking for relief? If you are doing all the standard things, might I recommend magnesium tablets or a prescription liquid called "lactulose"? The liquid will make it rain poop, so start with a low dose.
As for the anemia, that's a careful dance. Cancer thrives in an iron rich environment, so the anemia is actually bad for cancer. However, too much anemia, and your heart starts working too hard. I manage it with 27 mg. iron tablets, along with vitamin C and B12. I take just enough to get myself to low normal hemocrit values, then I back off. Over the years I've determined that if I don't have shortness of breath going upstairs, my hemocrit level is good enough. You can also determine it by checking your eyelid's insides, and your gums. If they look pink and healthy, you are doing OK. If they are very pale, try some iron.
It makes me laugh when my MO casually refers to my iron levels. I've found that the anemia is the SE most involved in my quality of life, and he treats it as an afterthought.
I'm ten days out from infusion, so I'm feeling kind of crappy too. Nausea and fatigue. I'm just about to wobble over to the kitchen and take a Zofran and get some liquids on board. Fighting my way out of the sofa's gravitational hold. Have you ever had those days when you don't know if you are hungry or nauseous, but making food is too much trouble, so you'll never really find out the answer? That's today.
I hope you feel better soon. Do you have any cold packs you can use for the headache? I find they work faster than a tablet when curing a chemo kind of headache.
Jennifer
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Thank you. So I just had the scariest experience today. I do not feel well on this doxil, and I was supposed to take my grandson to a birthday party. We started walking to my car and my legs were so weak and shaky I literally fell down. Then the sunshine was so bright everything just started swimming-I believe I was getting ready to pass out. I manage to get back in bed and I calmed down and no problem with my eyes. I also have been sleeping constantly for two days. Constantly thirsty, not eating much as I have nausea. Any thoghts?
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I took Doxil successfully for 18 months. JFL-- I had the worst rashes after my first doses- red and itchy, so my onc sent me to a dermatologist and also lowered my dose 25%. The derm doc gave me a strong steroid, but it was the dose change that did the trick, I think. I did well on the med for the remaining 16 months. I am also wondering, lisajo if you are also on too high a dose. It sounds like your blood cells are tanking.
I just started Navelbine and it seems tougher somewhat than Doxil. Not sure if it's working, though.
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Jennifer and Sandilee, thanks for the feedback on rashes. Jennifer, I have a small variety of rash types - some look like pimples (on back), some look like clusters of small, spotty non-raised bumps (on folds of arms where arms bend/inner arm where elbow is located), some look like red, deep, slightly painful chaffing (underarms and area between fingers and down the outside side of my hands). Also, I am getting some Xeloda-like hand foot syndrome on my hands. All still manageable, just annoying and a bit uncomfortable. I have used some Benadryl cream which helps a bit and today started using an over the counter steroid.
On Friday night, day 8 post Doxil, I woke up with an excruciating, splitting headache to where I felt like my head was going to explode and couldn't lay down, suddenly threw up 6 or so times in the course of an hour and then had no more nausea. It seemed a bit extreme for a Doxil response. I never even threw up when I took Adriamycin and don't tend to have many issues with nausea for any reason, including chemo. I honestly was worried I was having some sort of acute brain issue. I am 2 or so weeks out of Y90, which could be contributing as well. I have no idea but it was scary. Would prefer it being attributable to chemo rather than brain issue.
Sandilee, you had quite a run on Doxil. 18 months is great. I have always heard good things about Navelbine. Are you taking it orally or by IV? What are the side effects of Navelbine?
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JFL, yes, I had a longer run on Doxil than most of my doc's patients, in that the heart issues can sometimes be a reason for stopping. Onc had me going to a cardiologist every three infusions for an echo, and my heart stayed strong throughout, so he let me stay on it. I am getting Navelbine by infusion now, and it's every week, which is a pain compared to the Doxil every three week schedule. The first Navelbine dose was too high for me again (seems to be a pattern) and I felt like I had a really bad flu for several days. I had a fever spike of 102 the first day. Then felt weak had, headaches and had a lot of pain in my ribs, spine and liver (where my tumors are.) At my first follow-up my onc lowered my dose 25% like with Doxil and it has been a lot better but I stilll feel kind of weak in the middle of the cycle. For instance, I wanted to go to the market today, but was worried I'd pass out, so I will wait until tomorrow or Tuesday. My red cell count is very low on Navelbine, which probably explains the weakness. Another side effect I noticed this time is anxiety. It resolved in a couple of days, but I hope it was just a fluke. I don't like that at all.
Sorry to hear about your bad reaction. Who knows what could have caused that. Our poor bodies are so abused by all this stuff (while saving our lives) that it's no wonder they rebel. I hope that was just a fluky thing for you. I didn't have any nausea on Doxil, but we are all different. Sometimes constipation can cause nausea, I think. Be sure to mention it to your doctor.
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JFL,
Did you report the headache and vomiting to your medical team? It is something they will want to know. I'm glad it didn't persist, as it sounds absolutely awful!
I have had some pretty kick ass headaches on Doxil. They seem related to allergies, because when I changed out the filters on my air filter, they got immediately better. I am super allergic to dust, but a little too tired to clean as well as I should. I get good results with ice packs to the forehead for the headaches - works faster than pills.
Hope everyone is having a good day.
Jennifer
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I did not report the issue to my MO but my DH (who is a doctor) was with me at the time and did some physical tests (checked my eyes with a light and some other things). I asked him if I should go to the hospital but he thought it wasn't necessary. I will mention it to my MO at my next appointment and consider getting a brain MRI or a full body PET/CT. My current PET/CTs only scan from my nose down.
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JFL,
Your husband is a doctor? That's got to make some things so much easier. Any lingering vertigo or dizziness?
Most of the time we only get scanned from eyes to thighs. If you are truly experiencing some neurological deficits, it might be brain imaging time. If nothing else, it'll be a good baseline.
You are doing this with small kids, right? I bow down to you.
Jennifer
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I have just started Doxil (first I get Perjeta, then Herceptin, finally the Doxil) as of 4/16/18. The Kadcyla I had been on for 2 years stopped working, plus some cells crossed the blood brain barrier and I had brain surgery (suboccipital craniotomy) last August to remove a 3-cm. tumor. All seems fine after some radiation and with MRI surveillance.
I have been Mets to the liver from the beginning (what's the term for that? some Latin word) which was November 2010. Fox Chase Cancer Center, about an hour south of me, has done a bang up job helping me run this course.
I've been on Perjeta before, Herceptin always, but Doxil is new to me. Decadron is not new! Hate the stuff but I wonder how much I'd suffer without it. I will see if they can dial it down a bit as time goes on.
I am two weeks into treatment. On days 4 & 5, I noticed that my usual morning cup of decaf wasn't going to sit well. Then, loose bowels a week later and I took 1 Immodium tablet (only 1, not the usual 2) and ate a lot of bananas. All was well but I had to use every bathroom while out thrift shop shopping with my sister last week. Yesterday (day 15) I had regular (not decaf) coffee and even cocktail sauce (think horseradish! yum!) later that day with shrimp. Stomach OK. So mucosal linings must be normalized by this time.
If I'm going to lose hair, today's the day. I didn't lose any with Perjeta, but Doxil also can cause it. Never mind, my "girls" (wigs on stands on top shelf of my closet) are ready and waiting. I've lost my hair three times and grown it back. Now it's salt and pepper colored and I kind of like it.
Will advise if anything else occurs before my next Tx on May 14th!
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Good luck on your Doxil treatments, Miriam. I didn't lose any hair on Doxil, an my onc considers it one that lets you keep your hair- hopefully you'll be ok that way.
I wanted to mention that I didn't have any Decadron with my Doxil treatments. I asked that it be taken out because I hate the effects (had it with another drug previously.) I had no negative affects from leaving out Decadron. No nausea or after-effects. The main side effect once my dose was straightened out (reduced) was mouth sores which seemed to get worse as time passed. I was able to stay on it for 18 months until progression.
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Does anyone have weak legs on doxil? I literally fell in the parking lot and almost passed out. My onc said chemo doesn't cause weak legs. I have had weak legs since I started taxatore last summer.
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