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

Hi MameMe, Im glad the information was helpful. Im doing well. Im on a clinical trial and doing well. Thank you!

Hi everyone,

I have been on Doxil since October. The first few infusions were fine- no real side effects. Around February I developed the blistery rash that some of you have mentioned. It was so itchy and uncomfortable that my onc sent me to a dermatologist, and also lowered my dose of Doxil by 1/4. The dermatologist gave me a steroid cream, and between that and the lowered dose, the rash went away and hasn't come back.

I haven't had the heartburn problem, but I have had a lot of gas. Not painful- just sometimes embarrassing. I find if I eat a lot of yogurt, which I enjoy, it helps.

The infusion before last, early June, I started getting mouth sores. They became very painful, to the point where liquid smoothies were the only thing I could enjoy eating. In thinking about why I had them this cycle, and not previously, I remembered that I had stopped to get a hot coffee on my way to my treatment, and sipped in during my session. Don't do this!! I am sure that is why my mouth sores came on. All of the blood vessels opened up letting the chemo in. Recognizing that this might have triggered them, I took thermal mugs of ice and iced water and sipped it the entire time through my treatment early this week. Well, the improvement is remarkable. For the last few days I have had NO mouthsores. They all went away. So to the person who wondered if ice would help, I say for me, definitely yes. I've decided to avoid hot drinks altogether on this drug. I'll take my morning coffee lukewarm. It's worth it.

My hair is fine, my feet and hands are fine (unlike with Xeloda) and overall, I feel very well.(now that my mouth has cleared up. ) My CEA started at 900+ in October and they have been falling ever since. The last test was at 34! So if I can stay with this for awhile, all is good.

The thing that would bump me off, besides rising markers, would be any heart issues. My oncologist is paranoid about the heart and this drug, so he has me getting an echocardiogram every two cycles. It's a bother, but he says if the drug damages my heart, it can't be fixed. So if it can catch any problems before they become severe, it's worth it.

I have been stage 4 since 2011. I feel very fortunate to be here, to be feeling well, and not looking to shabby, either. Best of luck to all of you. This drug has been one of the best for me, both in side-effects and effectiveness.

Hello All, This Doxil thread seems to have stopped in July. Would love to connect with other who are on Doxil as I just started today!

Cheers!

Kimberly

Hi BlaineJennifer, Thank you so much for responding. I didn't have a lot of time to prepare. I was going to start a clinical trial but then my tumor markers increased by 350 points the week after my PET scan which showed progression. Since I wasn't originally treated with an Anthrycyclin; both my MN MO and my Boston MO thought Doxil would be the best choice to knock this beast back. Honestly, I don't think the chemo has been bad but the Nuelasta shot is killing me. Seriously worst pain I have ever had with nothing but Advil on offer for pain relief. Since I became very consitpated with the Doxil hesitated to take anything that would increase this side effect. Do you think I will get adjusted to the Nuelasta shot? Cause it has been horrible!

I am so glad to get feedback from someone on this drug. There doesn't seem to be many of us!

Warm blessings to you,

Kimberly

Hi Sandilee,  thanks so much for your post.  It's the first real post I've read about Doxil and certainly it sounds very encouraging.  I am starting next week after I have an echocardiogram.  I'll remember the suggestions you posted as I'm sure they will help.    Keep writing, please.  And keep feeling well.  bless you!

Hi Ladies!

I'm getting my first Doxil infusion as I type. I recognize some names here from other threads and I am happy to see folks doing well! I heard the side effects will be minor and I'm excited to move off of weekly Taxol. Either the Taxol or cancer was causing such fatigue it was hard to function without the Ritalin my onc prescribed. Good to know about the possible mouth sores. The Xeloda gave me such mouth sores I didn't want to talk or swallow- luckily I have a bunch of steroid mouthwash left over from that. Looking forward to sharing and hearing progress!

Bethany

Hello LivinAZ44, HarrysMom and Mimito3,

I have been really down since starting Doxil at the end of August. I literally couldn't get my mojo back until about three days before my second infusion. Second round has been easier -- only taken me 2 weeeks to get my energy back. Lots of problems with rash. I find magnesium at night and staying away from raw veggies helps with the gas and bloating. Hope this regime keeps us progression free for a good long time!

Kimberly

Kimberly,

Just had my sixth treatment two days ago.

I get very few side effects: some fatigue right after the infusion from steroid crash, and then I get the droops day 10 - 14 of the cycle. Just lately, I've been getting some mouth soreness during the droops, but I swish with a baking soda/salt water solution, and that seems to help. I also sip on pineapple juice, as the malic acid is very soothing to inflamed mucous membranes. It's an old singers' trick for when you have a wonky throat.

I use a dusting powder made for jock itch on my trunk, and it helps to keep the rash down. For my face, I slather it with coconut oil, and that seems to manage the skin flakes and blotching. Make sure you are wearing breathable, natural fabrics so that heat and moisture isn't trapped against your skin. I've also found that if I get too hot, the fatigue really shows up, so no long hot showers and baths, and I have to be careful working outside when it is hot.

I have a suspicion that there are few of us on Doxil as two years ago, there was a massive shortage of the drug, and I think some Oncs might still have trouble getting their hands on an adequate supply. Because of the conditions in Puerto Rico, that scenario may show up again. Already, my hospital is having trouble sourcing small saline bags and some of the attendant equipment. About 30% of Oncology medications used world-wide are made in PR, and those factories are struggling right now.

My TMs are stable, and I'll be getting scanned in about three weeks, so I'll report back as to how I'm doing on Doxil. I asked my Onc about the 9 month limit that I had heard about for treatment, and he said that it was very dependent on the patient. So, if my heart is doing OK, and I'm still responding well to Doxil, we plan on going till something other than an outdated guideline says stop. It's been a fairly easy protocol for me, so the longer, the better

Hi gals,

I just want to encourage all of you on Doxil to hang in there. I noticed that some of you have the rash which I had after a few treatments. Would your onc consider lowering your dose a bit? My lowered dose has still been very effective, and the rash has never come back. I do still get some mouth sores, but not too bad if I take the ice chips.

This is a full year on Doxil for me, and my CEA has dropped from 900+ to 16. My onc has said that I can ride this one out as long as my heart stays strong. He is a bit nervous about that, but so far my echocardiograms, every two cycles,have been fine. I always feel a bit like I may jinx my luck when I post that I'm doing well, but I wanted anyone considering Doxil to know that it can be a good one for some people. I hope to get several more months on this- not sure what is next for me, but it's hard to imagine it will be as easy as this has been.

One other thing I noticed from several postings is that some of you have a steroid crash from the infusion steroids. Because I never felt good on Dexa when they put me on it to keep swelling down when I first recurred, I requested from the beginning that they don't put it in my mix. So I just get an anti- nausea drug and the Doxil, no steroid. I don't have any crash or notice any effect at all from my infusion. I don't know if this suggestion would work for anyone else, but it works for me.

Just checking in, as I have been on Doxil for 7 months, starting my 8 th next week. I am thrilled to see that a few more of us are using this chemo. My dose was reduced by about 25% after I got a florid rash that really bothered me. Now I seem to get sensitive skin, but don't break out. Light weight pj pants help keep my legs from getting a rash, so I wear them at night and at home. I am getting less fatigued in the last month, hurray! I am noticing more hair in the drain after a shampoo, so yes, its starting to thin more. That I don't care for. I was told to try 24 hr Claritin to help reduce the chance of getting the rash. It might have helped, I used it for three months. For mouth sores, I use baking soda and salt as a rinse, and although it doesn't sound very effective, it really helps for me. So glad to see this thread revived! Best of luck to you all, Mame x

Hi Doxil Gals! Just checking in to see how everyone is doing?? I am two weeks into my fourth round and am feeling very well apart from the side effects. Previously, I was getting wiped out for about 10 days -- just incredible fatigue. But after consulting with my MO at Dana Farber, he suggested that my MN MO try the Doxil without a Nuelasta shot. Presto! I have had energy all month. Tomorrow will tell if my white blood counts are going too low. Last scan showed "moderate regression" of tumors both in the liver as well as my bones.

Take care everyone!

Kimberly

BlaineJennifer, I know what you mean about mid-month fatigue. Yesterday I heard that my TMs were down another 150pts so I have gone from 1200 to 316 since August 28th. I should be dancing a jig! And I am....really. It is just that I am mid-cycle and feel tired and emotional. Hate my short hair which is falling out....hate how tired I feel all the time especially during the season when I "want" to bake and wrap gifts and decorate. It's weird. I am grateful but crying at the same time.

Hope everyone is still seeing great results from this drug!

Kimberly

Thanks for the cheer-up! Feeling better today and am wondering if the fatigue has anything to do with big drop in tumor markers? Anyway, hair is just hair. Taking time to enjoy the season. Have a great holiday!

Kimberly

Mameme,

I was going to blame my increased fatigue on the short days and cold weather. Everything seems harder when the days are grey and cold. I've also had trouble with SAD previously, and chemo doesn't help.

My TMs are stable, and have been for months, and I'm still pooped out. I do one thing, and rest. Then I do another thing, and rest. After about three or four things, I just stay resting. I do not know how I would manage if I were alone, as my spouse is a worker bee around the house. Like you, if I walk, I have to take some household chore off the list.

Is anyone getting eye troubles from this drug? I'm developing cataracts at 56! And, there's been an increase in the floaters and the flashers. Had my eyes checked yesterday, and there's nothing scary going on, but I really hate having disco eyeballs.

Stay snug, everyone.

MameMe and BlaineJennifer,

Thank you so much for sharing your experiences on this drug.

I get random side effects each month. Lots of rash on my torso and then tons of skin itching and shedding as the rash subsides sometime after week three. This month the HFS is better but mouth sores are worse.

My eyes have been a mess since I started with Ibrance last spring and I no longer drive at night. My previous eye doctor was hopeless and have a new appointment in early January to get a thorough exam.

Have either of you had bizarre swelling of a wrist or ankle joint? This evening my hubby and I noticed that my left wrist had a huge red and swollen bump on it ....looked down and ditto for my left ankle. No fever. So weird.

I don't do well with errands but if I keep to shorter but more frequent walks during the day (add up to four miles total) and putter around the house I am ok. It is going out at night that really kills me for the subsequent day so am pretty careful about night time activities.

Sending positive thoughts for a release from deep fatigue!

Kimberly