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

Lisa, any info back on your biopsy yet? I know it can take some time for results to come back.

I had my 3rd Doxil today. The excruciating rash around the midpoint between cycles last round did improve to somewhat tolerable after a few days of pure heinousness. In addition to the pain under my arms that made it hard to sleep, it hurt so badly to walk for a few days it really concerned me. It really looked/felt like a 3rd degree burn that started from the inside. It blistered and peeled off and the skin underneath looked fine. Most of it is gone with the help of time and over-the-counter hydrocortisone now but I did show my MO the residual rash on the outskirts of where it was and he too commented that it looked like a burn. I asked to go back on the Decadron for now and he lowered my dose from 50mg per square meter of body surface to 40. Apparently, 50 is the max ratio for Doxil and drug efficacy and activity is seen going down as low as 25. He also told me to continue with the over-the-counter cortisone cream I started using in the later stages of the rash and call if I need something stronger once the rash comes. I read the drug manufacturer website and it warns to avoid any pressure on body areas such as hands and feet the day before through 4 days after treatment. My DH did some additional research and learned that in addition to a more standard-type rash, this drug can also cause a rash due to necrotizing fat cells near the capillaries/skin from the liposomal binding aspect of Doxil. The liposomal fat necrotizes in the body and is then removed via the skin. He suspects the burning-type rash is from that. Ewww!

Lisa, I hope the biopsy brings you the info you need re: HER2 status and any other profile details that may help you.

I do feel a bit of fatigue but also felt fatigue on Abraxane before Doxil. Overall, other than the skin issues, I feel a lot better than on Abraxane as it was getting to the point it was difficult to control my feet and lower legs at the end. I felt awkward and off balance at times and had challenges wearing my heels at work. Towards the end, I had to plan my movements throughout the day at work to minimize walking around at all, the same as I had to do on Taxotere. The feeling and control is returning to my feet/legs although I still have a long ways to go. Having eyebrows and lashes makes me feel better because I don't look as sickly. On balance, I feel like I am "alive" again.

Well, I had my second doxil treatment yesterday. Did not sleep all night. My blood work was the best in a long time, then I get my liver panel this morning and my ALP is 212 and my ASt is high. So now I think doxil won't work. Plus, I got my biopsy report and I have changed from er+pr+to negative. They have to do the fish test on my sample because the Her2 came back at +2. My doc thinks I will now be triple negative. I hear there is not much out there for that. I am so sad. My poor daughter broke down today. She doesn't want to lose me. I try to have hope-but everytime I do I get hit with something new. Plus I am constipated!!!!ugh

Lisa Jo,

Had my 2nd Doxil on 5/14. Needed 1 or 2 Immodium on separate occasions and ate a lot of bananas (my potassium is often low due to the blood pressure meds I take so I figure it's a good thing to slow down any intestinal drama). I also take 2000 mg Lysine/day to ward off mouth sores. It works.

I haven't said much yet because I'm still new on Doxil. They give me Herceptin and Perjeta first. I've been on Herceptin since I was DX Stage 4 in Nov. 2010. Perjeta is a bit of a necessary nuisance (again, intestines don't love it). I've also been on Taxol, Tamoxifen, AI's, Taxotere and finally Kadcyla. All eventually stopped working once they'd run their course.

I don't sleep well the first few nights due to Decadron's (steroid) bad SE's. Still, Decadron will prob keep me away from hand/foot syndrome. I try to think of the stuff I've got to get done those days and tear into it like a nut. It works to see this from that angle.

All in all, I'm feeling OK. Tired, yes. No hair loss! My "girls" in the closet are watching me (they're my gang of wigs, lol.)

CT scan will be scheduled for August, I suppose. We will see then if this is working or not.

Therese, sorry.

JFL, what do you do to enhance your eyebrows and lashes? I have practically zilch of either. I use an angled brush with dark powder to make "brows" and eyeliner for the missing lashes.

Love to all you ladies.

Miriam

I am starting Navelbine on Wednesday, anything you can tell me about this... how are you, do you have a port, are you tired, hair loss, weaknees, weight gain or loss. It is an "older" drug, I understand, soo it has been hard for me to get info. Anything would be infomration. Thanking you in advance and wishing you lots of success.

The bathing bunny is hilarious! Jennifer, keep us posted on next steps.

I am having a tough round from my 3rd Doxil with my feet. My feet are covered with blisters, including one on each big toe that covers nearly the entire top and wraps around the back. My feet were burned so badly from the inside out this round, I was worried some of my large joints in my feet below my skin were damaged as well. I am three weeks out of last treatment and still have more blisters cropping up each day. I also have a rash over most of my trunk and some other places but at least it isn't too painful or extreme this round, a major improvement from last round. I have also been getting hyperpigmentation. I am typically fair skinned but currently, my stomach and back look like I spent the summer on the beach. I had no idea my body could turn on a deep tan overnight without prompting from the sun.

I have my Y90 scheduled for next Tuesday and went in today for pre-procedure lab work. My AST and ALT each doubled and are out of normal range. They don't move around much and stay in normal range even when I have an extremely large tumor load so I am concerned. I don't know if it is from the Doxil itself (a side effect), the Doxil working (flare), the Doxil not working (progression) or from Y90 damaging healthy cells. I also had tumor markers done today but those are not yet back. Those may help to understand what is going on. Have any of you had issues with liver enzymes (particularly AST and ALT) jumping up from Doxil? I did some research and an NIH site called LiverTox.nih.gov, which provides data on drug-induced liver toxicity, stated that up to 40% of Doxil patients experience elevated liver enzymes.

Z, I am going to ask for my dose to be lowered (which fits in with the standard protocol for side effect toxicity grade this round). I had the dose lowered the last round so this will be the second time. It is likely I will also need to postpone the chemo, which I don't like but do understand is probably necessary. Last round, my rashes and blisters fully healed up between rounds, almost overnight. Not sure that will happen this round but I have 8 more days. It is odd because the most painful blistering areas from last round didn't cause me any trouble this round. And the major feet blisters are new this round. Rashes are a moving target. The issue is also that Doxil is somewhat time-released. Patients are recommended to reduce all friction and heat to the body 1 day before treatment - 5 days after treatment which is difficult for anyone who lives a mildly active lifestyle, showers and needs to do things like bathe children and wash dishes. What has really punished my feet is a few 3-mile walk/runs I did. I thought I was in the clear when I did them but that was not the case. Doxil works by preferentially going into highly vascular areas (tumors, heart and certain hot, high-friction or injured areas of the skin). The medication gets dumped into cells below the skin's surface and the body has a hard time clearing the medicine from there. It gets stuck there a bit. On top of that, a second cause of the rashes is the necrosis of the liposomal delivery formulation, which is then released through the skin. I have also thought about the liver - rash connection. Not sure which is leading which here.

JFL. I saw the derm at Mskcc due to my body rash. He gave me cleobetasol and since my hands were so bad he had me ice my hands and told neuf my feet start to bother me then I should ice them Just an FYI for you

Bab

JFL,

I did not ice, but from day one, I put lotion on my feet and hands. My hands were fine, but the feet became an issue. It just seemed like overnight the blisters just popped up. I do think the heavy smearing of the lotion helped. I used aquafor, and lots of it, twice a day.

Therese

JFL

The derm has me ice during the infusion

Bab

The appointment for PET review on Friday wasn't great, but it wasn't as horrid as I was expecting.

I've gone from three tiny liver lesions to two. One is big, about 6 cm, but dead in the middle, like a clump of perennials that needs to be divided, with a lil' buddy lesion right next to it. No new bone mets, but the SUV on a few have jumped from 6 to 14. I can feel the darn things - rib cage and thoracic vertebrae.

It was a weird appointment though. I truly like my MO, but lately have felt like I wasn't getting the practice's full attention. It has grown immensely in the last few years. Normally, when I progress, MO has a plan already mapped out for what is to come. This time, he was like "Well, you have to go find a good trial." I'm already in increased pain now. My cancer moves fast. I have been wittering on about trials for the last couple of months, so I get where he's coming from, but is that how it goes? I'm just sent off to find a good trial?

I used this site's trial finder, and emailed what felt like a thousand trial coordinators. Let me tell you, the inclusion/exclusion criteria doesn't always tell the full story. Some trials are already full. Some are for TN or BRCA only, but it's not mentioned. I'm too heavily pre-treated for some, and my DVT excluded me from one juicy trial. Why am I having to do this, though? I don't feel capable.

I find myself in the position of being jealous of TN pathology. TNs have a higher mutagen rate in their tumor tissue that makes them a better candidate for immunotherapy treatment. When I first joined CancerClub, being ER/PR+, HER2- was the best place to be. Then Herceptin, and its sequels made being HER+ almost a good thing, and I think that immunotherapy is going to do the same thing for TN.

MO has requested my original mastectomy tissue for mutation analysis, so he's doing that, at least. I'm going to call them tomorrow, and talk to them about how abandoned I feel. I think I'm just bummed about progression, more than anything else.

Blainejennifer, sorry you have to endure your doctor's nonchalance in the midst of MBC. That is so not respectful on so many levels.

Granted I might be off as I am going by your listed therapies in your signature, but it doesn't seem like you have exhausted all possible chemos or drugs! It's frustrating to have to be the one bringing it up to a freakin' MO but some do need pushing in order to be proactive (Italian doctors need ten times more urging than American ones and it is soo unpleasant. End of rant)

Anyway, although you already used Taxol, I understand Abraxane binds with cancer cells in a different way. It might be worth inquiring. I think you said somewhere else AIs never did anything for you but maybe your onc could look into a different combo like Tamoxifen+Verzenio/Ibrance/Kisquali or Verzenio by itself. Also it doesn't seem like you used Afinitor. I am pretty sure I read it can be combined with other drugs other than Aromasin.

Hang in there! I know it's hard but nothing is set in stone.

Daniel

I hope everyone is doing well on their current Doxil cycles. My blisters have almost healed up on my feet - just the two healing on my big toes left, deflated, improving and no longer causing problems. However, now the entire outer level of my skin is shedding like a lizard on the bottom and sides of my feet. I have never seen the bottom of my feet so soft but cannot enjoy it as it is too sensitive. I have never found myself wanting my body to create a callus on my feet. I was scheduled to have Doxil tomorrow but rescheduled for next Friday. I had my second Y90 to my left liver lobe on Tuesday. My MO wanted me to take a week or two off after Y90 before my Doxil infusion so this is not a delay in my MO's mind, only mine. I am encouraged about the literature on the synergistic effect of Doxil on Y90 and vice versa. Praying it plays out that way in my liver.

I had my 4th Doxil on Friday. My dose was lowered agains and I ditched the decadron again since it did not help with the "fire feet" last round. I did a bit of icing my feet and hands during the infusion and have been icing my feet and hands nightly since 2 days prior to chemo which I plan to continue for at least 5-6 days post chemo if not the entire time. I am resisting the urge to go walking/running (my feet are healed and feel great now) during this 2 days prior - 6 days post chemo time period. Also, last time I had a few small blisters on the outside of my thighs from the seam on my pajamas so I ditched those as well. My liver enzymes are returning to normal which is a big relief.

Thinking of all of you and hope everyone is making it through. Doxil is great in so many ways and extremely harsh in so many other ways.

JFL,

I had what appeared to be a blister like open sore on my left side of my abdomen that started up a week ago (10 days after my 3rd Doxil tx).

Unlike a blister, I couldn't trace what caused it. Also unlike a blister, perhaps more like cystistis, 2 layers or so of skin just went "missing" and a blister usually has draping skin around the wear area, usually an area with tougher skin.

I continue to try and nurse it, though it's been messy (sticks to underpants & all dressings). It's not in the line where the elastic hits the skin, so I can't determine its source.

Onc says perhaps it's from Doxil but we don't yet know.

Anyone else with this?

Thanks in advance.