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

Welcome, Miriam. Amazing you have been living with liver mets "de novo" since 2010. It is great to hear about long-term liver mets survivors.

Lisa, no weak legs linked to Doxil for me but I have only done 2 cycles. However, I do have lingering effects from Abraxane neuropathy - legs or ankles occasionally give out but that seems to be slowly but surely improving since I started Doxil. My feet have started to hurt badly on the bottom in the last few days. I am hoping it is the Abraxane neuropathy reversal starting to take place - the formerly compete numbness in my feet going through a pain phase before resuming normal sensation - as opposed to Doxil hand-foot syndrome, but who knows.

Jennifer, no residual side effects like dizziness or vertigo. Feel normal except more tired than usual and a decreased appetite from the Y90. The side effects from that are starting to gear up. Hoping they pass quickly.

Nouzay, bummed to hear Doxil isn't working for you. Very disappointing. Abemaciclb and Halaven are both good options. Those two are probably next in line for me. I don't know whether Abemaciclib is better with or without hormone therapy but I plan to try it without (which is a higher dosage), as I am clearly hormone therapy resistant at this point. The most challenging side effect of Abemaciclib is diarrhea. Halaven is very effective and sounds very tolerable and I only hear positive things from those on it. It causes hair loss but no one seems to complain much about too many other harsh side effects.

Also, if you are interested in Y90, keep pushing or go around your MO to consult with an interventional radiologist who is up to date on the current use of this in breast cancer (the protocols for its use in liver or colon cancer are very different, which I learned from my MO after he investigated this treatment). My MO initially said no and the first IR I consulted initially said no as well. The protocols for its use in breast cancer have changed very rapidly in the last year or so. I found one of the best IRs for Y90 and he told me I am an "ideal candidate". Most MOs (even top notch MOs) and generalist IRs or IRs who perform Y90 for other cancers are not up to speed. I had to educate my MO and now he is a proponent and does a lot of research about it on his own. I suspect my MO will begin using it for other patients now. Your MO definitely has a say in your treatment but it is your life at the end of the day, both figuratively and literally, and sadly, we have to do a lot of advocating for ourselves. I didn't need a referral from my insurer to schedule the IR consult or the Y90 but it depends on which plan you have.

Hi all! I have been a lurker on this site for over a year - thought it was high time to join. I will be starting Doxil next Friday after failing my first ever chemo - Xeloda. It worked for about eight months with mixed results, liver and a few bone mets just started up again, lung mets and other bone mets gone and healing, new met in my epidural. I tolerated it very well after the intitial se adjustment period. Constipation was a bummer throughout for me though. I had mild hf initially and of course fatigue. Iced my feet, soaked them and elevated them if i felt it coming on. Walked around barefoot a lot and urea cream for dryness. I also took B6 and B12.

I'm hoping I tolerate Doxil as well as Xeloda and get good results. This will only be my second chemo, but fourth protocol - hormonals were an epic fail for my very er+ bc. I swear Tamoxifen caused my stage 4 dx, but I can't prove it, although I have read studies that say lobular can rev up on tamoxifen! Unlike most people, I actually had MORE menstrual cycles on it. Wee! We may try everolimus+exemestane at some point. Foundation showed nothing, but suggested this combo to overcome resistance.

lisa, have you told your doc about your extreme fatigue? I doubt it is from the Doxil. Are you perhaps anemic at this point? Maybe there is something they can do to mitigate your situation. Can you get in for some blood work to see what's going on?

Bobbipinz, welcome to this group! Did you ever ice your feet during chemo or just at home when you were having issues? I hope Doxil treats you well.

My hand foot on Doxil is ramping up very quickly, which has thrown me for a loop. I was not expecting it. I am considering trying to ice during chemo. My rashes are getting pretty brutal too. Can't wear tank tops or short sleeve shirts or my work dresses without freakish rash areas showing. The fact that I did not take Decadron last infusion may have something to do with it but I really don't want to take Decadron for many reasons.

Lisa, I am sorry you are suffering. It is not likely from the Doxil but is definitely something that needs addressing. I hope you can get some answers and some relief.

I have been having trouble with hot foot as well. I have these keen ice packs designed to act as booties, and they provide a lot of relief. I also elevate my feet, and walk around as barefoot as I can because the cold floor is so soothing. For the first time on Doxil, I noticed that I had puffy ankles a few days ago. I will be mentioning that to my MO. Doxil can be cardiotoxic, but anemia can stress the heart too, resulting in ankle/foot edema.

No rashes, so I feel as if I've dodged a bullet there, JFL. They must be quite uncomfortable.

Second cataract surgery coming on Tuesday. It will be nice to have symmetrical vision. I have to say that I hate the way I look without glasses. Without eyebrows, and with very sparse lashes, I look like a naked mole rat. Glasses distract the eye from bags and wrinkles. As soon as possible, I'm going to have fancy progressive reading glasses made up, so that I can have my face jewelry back.

LisaJo, I have constant trouble with anemia. Are you getting the shortness of breath too? I think that's the SE I hate the most. I live in a two story house, and have to climb the stairs three at a time, with a pause, so that I'm not gasping for air at the top of the stairs. It helps to remember that cancer cells do not thrive in a low iron environment. What is your medical team recommending for the anemia and the thirst (which can be a symptom of anemia)? I have to drink constantly throughout the day, or I get quite tired. Best of luck with managing the side effects.

JFL- thank you for your response! You mentioned your preference to do Verzenio without Faslodex.. I'm interested to know your line of thoughts on this one .. my understanding is that Faslodex acts differently than other hormonal treatments in your signature so how did you determine you're hormonal resistant?

Since, I know you did cold caps like me, do you have any info on how effective cold caps are with Halaven?

Sandilee- Thank you for your valuable response as well! How's your experience with Navelbine so far?? It seems you had a long run on Faslodex, 3 years is that right?? But that was when you were bone mets only??

I've been waiting for the foundation one report since Xeloda failed me too soon and that was three months ago!!! They couldn't get enough tissue from my liver biopsy then tried my initial breast biopsy with no luck 😩 the doctor is suggesting some kind of blood test through the foundation one but I'm not sure that'll be informative enough

Any thoughts??

CelebrateLife,

Yup - hotfoot is what spouse and I call the hand/foot syndrome. My feet get swollen, reddish, and feel hot. I've cornered the market in peppermint lotions and salves to make the feet feel better. It seems to help.

Nouzay, I took Falslodex and Aromasin at the same time for 15 months (with Ibrance added halfway through that time period). My MO didn't want me on an AI alone when I was diagnosed due to pregnancy and tons of circulating estrogen. The Faslodex addressed the circulating estrogen while the Aromasin stopped my body from producing future estrogen. When I progressed, it was a major explosion and like nothing I have seen since. A good 70% of my liver was mets at that time. I am worried hormone therapy stokes my cancer to become even more aggressive now that I have become resistant to it.

Celebrate life, I have been putting Aveno deep repair moisture cream and coconut butter on my hands and feet and wearing fluffy socks and gloves while I sleep. I went out today and bought some benadryl cream, cortisone gel, excipial urea cream and Eucerin excema lotion - to attempt to address the hand foot and the rashes. I also have been taking ibuprofen for the foot, hand and rash pain. My rashes are deep red, raw and cracked open in some places. And I soaked my hands and feet in ice water this evening. i probably need to lower the dose although I don't like doing that.

Birkenstocks rule! The cork footbeds keep my feet from overheating, and when I do have increased foot neuropathy, the flat heel and flexible footbed keep me as agile as possible. I simply can't/won't wear any other shoe now.

Yes, they are ugly. But, so is a broken bone from a fall.

Hope the Doxil gang is doing OK. I am climbing out of the fatigue well that occurs 10 - 14 days after infusion.

Jennifer

Jennifer, what is the schedule you have experienced for various Doxil issues? I see you have fatigue day 10-14. I haven't gained a good grasp at the timing of all the issues - hand foot, fatigue, nausea, rashes, yet. Doxil is unique in that it seems to have some element of time released medicine.

JFL,

It's a "Your Mileage May Vary" situation. I get a chemocrash two days after treatment related to the steroids. It's two to three days of fatigue. Then I get very anemic on days 10 - 14ish. I can tell because oral mucosa gets really pale, and I get short of breath doing almost anything. Day 18, I'm almost normal, then infusion starts the cycle all over again.

But, I'm stable. On the right side of the grass, you know?

How are you doing?

Jennifer

The rash keeps getting worse in places, raw and open skin around my underarms on the back side and back of arms. It doesn't itch and I have never touched it but is just raw and looks like when a child skins his or her knee. It hurts to lift my arm fully as if it will split open the skin. Will plan to put antibiotic ointment on it tonight after reading the feedback here. I will plan to ask for dose reduction and go back to Decadron for now. Hoping the rash doesn't get worse in the mean time. I have nearly 2 weeks left until my next infusion.

So after my 6 cycleof Doxil my body has rashed. I’m in Paris babysitting my grandson and boy is this itchy. Wrote to my mo last night. In the meantime the pharmacist gave me a salve to use. Any advice?!??!!!

Babs

NouzayO, Thanks for the idea about udderly smooth foot cream. Something else to try. However, this has been a rough week. More blisters, more pins and needles pain, more swollen. I am pretty sure there will be a dose reduction, hold a month, or new treatment. My days are now mostly horizontal with feet up. That means QOL sucks....

For me, it is all about QOL....