Doxil, what can you tell me about this chemo treatment?
Comments
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So sorry Robin! I hope you are feeling better! I have the heartburn too. I take pepcid daily (and sometimes tums too), and sometimes twice a day. They gave me a prescription of compazine for nausea. I'm just sick of the acid reflux. I also am having a hard time eating because of it (I've lost 20lbs in the past 6 months, not a bad thing for me, but I don't think I'm getting what I need, I do take a multi vitamin though). I have my blood work appointment tomorrow, and am going to ask her if there as something else I can take for the acid reflux. I also have had a sore throat since Sunday (I waited for when I see her tomorrow, I hate going more often than every two weeks), no fever, hopefully she can do something, and I don't have to go to my primary too! Chirps, I'm glad you didn't get too much damage with the tree!
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Chirps and Noni, The good news is the pain and nausea are gone! The bad news is I had blood work yesterday and after 1 round of Doxil my tumor marker went up 24 points. This is the largest jump Ive ever had, so I am nervous. My MO called tonight to tell me she wants me to have a CT scan when I come back in 2 weeks. She is already talking about changing treatments!?? I had my second treatment yesterday and I feel the doxil has not had time to work.
Has anyone experienced a TM rise after receiving just one round of Doxil??
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Oh, Robin! So happy that your SE have let up, indeed! The TM tests aren't always perfect. See http://www.kantrowitz.com/cancerpoints/tumormarker... which talks about this kind of thing. Try to relax until you have more information. I don't know "how many points" it can be off because I just haven't learned about this kind of thing.
And I can't answer your Q about TM increase after starting Doxil --- or any other chemo! --- but maybe someone else knows! You might post a new thread about TM during chemo. Doxil might be a bit different, as you probably know, because it tends to have kind of a delayed effect, relatively speaking, from what I understand. That's the "fat / lipid" part.
Make sure you're going to be getting followup TM tests. Which TM test are you getting?
Lynne I hope you're feeling better! I haven't had acid or reflux, not even before any of this cancer & chemo, so no ideas about what could help. That's indeed not good if you're losing a lot of weight. My appetite has been poor at times so I get concerned sometimes about intake too... Let us know how the blood is; I'm doing mine today also. Some of my liver numbers were wonky at chemo time and I hope they're back to normal...
Noni, how are you faring with the adriamycin? I hope it's working for you!
I had crummy (not severe) nausea plus headaches and some lightheadedness over past few days, eve of of Day 5 thru eve of Day 7, but feeling like I might be past that now...hope so anyway. Fun family plans for the upcoming Easter weekend!
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Chirps, Thanks for the link! I am hoping the antibiotic I was on, or the infection I had increased my markers. My MO does the CA 15-3 test. Yesterday was day 1 after receiving my chemo and I felt great all day! Today I am nauseous and feel week. Such a change from yesterday. My MO wants me to come in the day before my next chemo and get blood work and tumor markers done. Based on those results she will decide to either stay the course or move to something else. I feel she is always too quick to move on, never giving a drug its full potential. I hope you are now past the side effects for this past round. When does your MO plan to do a scan?
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Lynne, I have been taking digestive enzymes for the past 3 days and I have had no heartburn or acid reflux. I also take 40mg of Nexium in the morning. The enzymes have been a real blessing for me!!
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Robin my MO plans scans every 12 weeks AFAIK. Every 3 doxil Tx.
What are your enzymes called? That is fantastic!
I 'd suspect your fatigue is at least in part due to the iv steroids wearing off. Although I was told I'd probably see this on day 3. I did feel very fine on day 1 and day 2. Do your nausea meds help?
Sorry but I really don't know what to say about your concern about mo. Seems before even she suspected giving insufficient time to one of yours. I wonder if you could consult another mo. I think its important to have confidence in mo. This also makes me wonder if there are nccn guidelines for this kind of thing.
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Robin check this out. https://csn.cancer.org/node/201083
Linda on that thread says tm ca125 commonly increases at first when using doxil. See her oct 18 2010 post. I have no idea where she gets this factoid or what if any conditions apply. I was out prowling for general doxil info and experiences when I read this ... waiting for meds to kick in so I can return to sleep.
Don't know if or how this might apply to your situation but I wanted to share with you.
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My blood work came back fine on Friday. I was given magic mouthwash (of course my insurance wouldn't cover it, 47.00 later...) for mouth sores, that she think are also in my throat. She looked and said it didn't look like strep, but she put me on Augmentin for 7 days, after I told her we were leaving on vacation in 3 weeks. Still having issues swallowing anything harder than yogurt. I think it's a little better. Of course, I forgot to ask her about the acid refux, since I had been dealing with the sore throat, and that was my main concern (I will ask the PA at the next appointment). Next chemo (number 3) is the 28th. Having CT and Bone scans, the second week in May.
Robin, I am sorry to hear of all your troubles. My oncologist has always waited after 3 months before scan
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Chirps, The enzymes I have been taking are called Pure Encapsulations Digestive Enzymes Ultra. I can't believe how much they have helped. My MO normally does scan every 3 months but since getting liver mets, she is scanning sooner. I don't mind her being cautious, but also don't want her to get rid of a treatment that might be working. And since I get my doses cut in half every 2 weeks....It takes 2 treatments to equal 1 whole treatment for you ladies.
Thanks for the link Chrips! I am going to print it out and show my MO. I am not ready to abandon another treatment too soon.
Lynne, sorry to hear you are dealing with a sore throat. I had esophagitis when I was getting Proton Therapy to my chest and neck and it was just awful. It felt like I was swallowing glass, so I stuck to yogurt and ice-cream.
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If you ladies haven't tried this already, for when you require soft foods, using something like nutri bullet is something you might find helpful. It pulverizes foods to make drinkable. And adding ice can help make it refreshing or numbing ... sort of. Higher wattage than magic bullet. You get benefits of fiber and etc in the foods, unlike juicer.
Also Robin one bco member mentioned tm going up while on effective chemo, will try to get more info as to references. Am traveling so on.off Internet.
I looked up a tm lab for me and it doesn't appear to go up when I have this active cancer. Sounds like this marker isn't too helpful to me in my current case! I had to postpone labs from Friday to today so maybe I'll learn something later...
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I've had two treatments of the Doxorubicin and the 2nd was much better than the first. I think I still had Doxil in my system the 1st time around.
I've heard TM aren't reliable during active chemo, so I'm not quite sure what to say. If your MO is thinking of changing things up so soon, see if Doxorubicin is an option.
The moth sores are the absolute pits. I had them so bad I couldn't even swallow a sip of water. My insurance didn't cover magic mouthwash either, but it was worth every penny. I've got mouth sores with the new treatment but not nearly as severe.
I need to complain about radiation tho. I had 10 sessions on my spine and it caused such pain and acid reflux that I regret ever having it done. I was supposed to have 15 but quit after ten. It was just too much, and here it is more than a week and a half later and I am still dealing with the madness. I am taking anti nausea meds around the clock as well as two acid reflux meds, and I am still unable to eat. I keep going to MO for fluids, and need to go back again tomorrow. I'm so weak and miserable. I know milk is one of the worst things to drink for reflux, but it's the only thing that will allow my meds to go down. Radiation ruined my whole digestive system and it was supposed to be targeted only to my spine. Bah humbug!
I am so tired and that towel has already been thrown in more than once.
I wish everyone a peaceful and restful night.
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Noni, so sorry to hear of your troubles. I hope it gets better with time. I had radiation on my spine, 5 years ago, when the cancer first returned. I did 10 sessions, and did not get any relief from the pain (I did this after I had a kyphoplasty on a compression fracture in a vertebra), but did not have the stomach issues, and I had them laying on my back, not my stomach, because of the back pain.
Chirps, thanks for the info on nutri bullet.
The magic mouthwash and/or Augmentin worked. It took almost the entire week to get back to normal swallowing (I lived on yogurt, applesauce, popsicles and ice cream too), but it's better now. Only issue I have now is after a week of diarrhea from the antibiotic (even with taken an probiotic every day), my entire bottom is raw and sore and I think I have another yeast infection. Have only had 2 in my entire life (I'm 55), and have now had one every time I've been on an antibiotic (3 times) in the past 6 months. If it's not one thing it's another! Tomorrow, is my 3rd chemo day for Doxil. I hope it goes as well as the 2nd one! I will be getting scans the Monday after I come back from vacation (the 16th) to see if this drug worked, and blood work and results that Fri (although I get my scan results the next day, when I pick up the scans and reports from radiology, I like to know ahead of time).
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Hi to All, I just began Doxil, it will be once a month, and I wanted to learn more about what kind of side effect patterns other women are noticing. Basically, can I expect a few days of feeling yucky, then get back to decent for a couple of weeks before the next infusion?
At treatment, they had me put ice bags above and under my ankles, and gave me some to hold. I have had experience with crippling hand foot syndrome while on Xeloda, until my dose was cut. I want to avoid the burning feet thing if possible! Does ice in drinks during treatment sessions help with mouth soreness?
Anything about fatigue, nausea or scrambled thinking would be great! I have ondansetron ready for heartburn.
Best of luck to all, I am happy to have found you. Hugs, Mame
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Hi Mame. I don't seem to get the mouth sores till about 2 weeks after chemo. I rinse my mouth all the time with water and brush after each meal, and I still end up with sores. I haven't tried ice drinks, but I do drink water and juice during the chemo, I even have eaten a sandwich , the past two times since it was lunchtime.
I have had fatigue, worse the first week. I don't eat much for the first few days after, a little nauseous, but the compazine helps. Never have been sick. I also have the hand foot syndrome. I had it on xeloda too. My feet were worse then, this time my fingertips are taken a beating. I take vitamin b6 .for it, it helps. I use Udderly Smooth cream in the am, and Vaseline with socks in the pm. I also get the scrambled thinking. The wrong words come out, or I repeat myself. I just tell my husband and kid s to just go with it.
I hope this helps and good luck on Doxil.
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I most likely will be starting Doxil after failing Xeloda, we will be doing a liver biopsy on Wed of next week to make sure it hasn't changed from Her2-..Not looking forward to losing my hair,
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Keetmom,
Sorry you have to join us! I too went from Xeloda to Doxil, thinking that I would be losing my hair, it has thinned (as it did with my other treatments), but 85 % don't lose their hair. I've had 3 treatments (once a month), and still have my hair (and it's down to my waist). Good luck with your biopsy! I'm having my scans tomorrow, to see if the Doxil is working.
Lynne
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Well, after three cycles of Doxil, I am moving on to the next one. My scans showed shrinkage of my lymph nodes, lung nodes, and some liver lesions, but there were new liver and bone mets. I am starting Taxotere on Friday (every 3 weeks, instead of 4, and blood work done on week 2). I am having a friend (who is a hairdresser), cut my waist length hair (which is probably half the thickness it once was), and saving the pony tail/braid (so I can stick it onto a baseball hat and out the back, once my hair falls out). It will be the first time I cut my hair short and the first time I dye it (at 55!). I am going blonde with light pink highlights (it's light brown with grey highlights right now). I am picking out a wig too (UGH!).
I'll be thinking of all of you! Good luck! Hugs!
Lynne
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Doxil Folk,
After Halaven for 14 months*, I'm joining y'all in Doxil land.
From what I have read, some of you have had digestive troubles, nausea and stomach emptying issues. I am armed with Zoran, Compazine and Reglan. I've also added some probiotics - thanks to your collective wisdom!
You've said that blood counts will be at their lowest from day 10-14. Does that feel like anything? I have had slightly low RBCs, but have no idea what neutropenia might feel like.
How long does the infusion take?
Most of you kept your hair, it seems like. I'm am super bald from the Halaven, and would welcome some sort of fuzz.
Thanks for all your advice and information. I'll be having my first infusion next week, and am looking forward to a one on/three off schedule. They've not mentioned showing up for lab work mid-cycle. How many of you have had to do that?
* I took a four month CMF break, as Halaven was hard.
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I am starting tomorrow..glad to have someone with me..
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Had a allergic reacton no Doxil for me...had 2 drops of meds
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Oh no! I'm glad they caught it very early, and that you are OK.
What did it feel like?
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Throat swelled shut, coughing, turned bright red, it was scary..just a few drops of the drug
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Keet , What a scary experience! I am so glad they caught it right away. Any allergic symptoms today? Plans for something else? I have had two Doxil treatments so far, and I can tolerate it, but don't know if its working on mets. Take care of your self.
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STarting Taxol on Monday, seem ok today....they filled me with drugs and made me do a bag of fluids...ok now
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I am staring CMF on the 19th followed by nuesleata the following day. I am stage 2, grade 2 ILC. How about you? Would love to chat out way through this process
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Had my first infusion of Doxil yesterday, after a two week break having finished with Halaven.
It was stunningly routine. They accessed the port, took labs, and started saline while waiting for the labs.
Labs came back fine, so they started the pre-meds, Aloxi (anti-emetic) and Dexamethasone (steroid). That took about 30 minutes. After clearing all saline from the line with dextrose, because Doxil is mixed with dextrose, and turns into Doxyrubin in a saline environment, they started the Doxil with a really slow drip. For the next two fifteen minute segments, they checked on my response to the infusion, slightly bumping up the drip speed each time. When I showed that I probably wouldn't be having an adverse reaction, they set me at the standard drip rate. Next time, I should get the standard 90 minute infusion.
At home, I had some lip/mouth sensitivity, the bottom of my feet felt hot, and I was pretty tired. All that has resolved by this morning.
I had read that some people taking Doxil have to get an echocardiogram before treatment, and show up for weekly labs during treatment. I was told that this is not standard practice in the Stage 4 breast cancer cohort. The feeling is that they don't want to know every little detail about cardiac troubles, as then they would have to discontinue Doxil. Once a month seems fine to check in on the old ticker through the labs and reported symptoms. Perhaps it is because my blood pressure is consistently 120/75 ish and I remain quite active.
I am hoping to have a good response to this drug. I must say - I had a lesion on my hip giving me trouble, and this morning I haven't felt a squeak from it.
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hey ladies,
I've been a lurker on this forum for years off and on, never really an active contributor, but as my local support group isn't really able to help with Doxil info/feedback I've found myself here more often!
I started Doxil in November 2016, 4 week cycle. Here have been my SEs:
-Extreme fatigue and headaches hit me on days 4-6 after my infusion. Day 7 I wake up and magically it's all gone and I feel pretty normal the rest of the cycle. Acupuncture has really helped w headaches and neuropathy.
-Neuropathy is pretty bad weeks 1&2 but improves during weeks 3&4. Lots of lotion and self hand massages help.
-Mild nausea but not bad week one, I take compazine or ondansetron if needed.
-I got thrush one round, since then I've been better about brushing teeth right after eating and keeping mouth clean
-Round 2 I thought I'd decrease my oral steroids because my nausea was so mild, but then during week 2 I got a terrible skin rash under my arms and on thighs! Went back to full steroid dose and this hasn't been a problem again!
- Last two rounds (May and June, so rounds 7&8) I've gotten a one day, random high fever w chills (102.5) during week 3. Both time we did labs, blood cultures, urine samples, flu and step tests and all were negative so my Onc is thinking it must be a delayed Doxil reaction. It goes away in 24 hours.
I have kind of dry feet but haven't had bad hand foot syndrome or mouth sores at all. I've had two scans and both have shown significant response on doxil. I have mets in abdominal soft tissue, adrenal glands, and chest lymph nodes. This is great news especially since I'm so heavily pretreated!
Anyways, just wanted to pitch in to our small doxil group!
Kristie
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Thanks for the very helpful description, Kristie, of your experiences with Doxil. It sounds like you take oral steroids daily, woulld you tell us what and how much? I am having a painful skin rash at the top insides of my legs, and itching on my back in the last few days. I don't want these symptoms to get worse, but I am not eager to have large amounts of steroids in my system, either. A small dose might be ok for me. I will bring his up at my next infusion, in 10 days. I also am seeing and feeling tight, red skin on my palms. I can use the same stuff I used with Xeloda for that. Mouth sores come and go, and I find that salt and baking soda rinsing is helpful twice a day. Italics got switched on by mistake.....
Fatigue hit me hard days 10 to 15 pr so, so I was really dragging then this month. I am better, but my overall stamina is reduced from before Doxil. Thanks again for sharing, it was very helpful to me. How are you others doing right now?
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I was on Doxil for 11 months and it was mostly a breeze with the exception of rashes. I had the most terrible rash under both my armpits and on my side. I itched really bad and starting blistering. It took a month for it to clear that only happened once. Then sometime in the fall I started wearing boots and got a terrible rash on my feet. I thought I had athletes foot. This lasted for a two months. I started using so many different type of ointments and the rash went away. Well I've worn those boots on several occasions and my feet are fine. So that was a side effect from Doxil.
I would also like to add I was never on any steroids or benadryl on thus chemo.
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Thanks, Geeper! This kind of info is so helpful. You had a good run with that treatment, 11 months is a long stint. How are you doing now
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