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

Hi all -

I’m currently been on Halaven for 11 months and may have progression (not known yet but TMs went up which have always for 11 years indicated progression.) TMs have been steady the last 3 1/2 months even though way above normal and now went up 32 points today. Started my 17th round of the 3 week cycle today and we will do my TMs again at the end of this cycle. If they have gone up again, I’m sure I’ll do a scan and probably end up changing chemos. I’ve been on many chemos/treatments and Doxil is one of the few left, and no option will be an easy one. I’ve been through all the known less difficult ones already.

I’m trying to be proactive and see the experiences of each person that has tried Doxil. The PA did say Doxil is harsh but didn’t elaborate when I brought it up. Lisajo - sorry you are having a difficult time on Doxil. JFL & Miriam - you both seem to be managing the crappy blisters. Babs and Blainejennifer - have followed you through several threads. Always good to read your posts. Sorry blainejennifer for yourprogression.

I would appreciate any thoughts you have. From what I have read the last few pages it seems some of the side effects come out of nowhere.

Thanks so much in advance!

Southern

Thanks JFL. I am not happy to hear that and I do remember reading your posts about this. I will just try to be extra vigilant so that I can head these things off at the pass. I very much appreciate your helping out with mentioning your side effects as the Doxil is a little bit unusual. My CT scan, however, shows that it appears to already be starting to work. I had a scan on June 23rd and got the results the other day and my liver tumors have shrunk slightly and that's good news.

Miriamwill

I am very fatigued on Doxil. I had the rash after my May treatment. I’m pretty constipated and have nausea. Thank god it’s only once per month

Babs

Cycle 4 update - feel like I am on a different medication. It is now day 15 and no major problems with feet or anywhere else on skin. Zero rashes this round, which is a first. Not sure if I am out of the woods but in prior rounds, the feet issues and rashes elsewhere would crop up between day 5 through day 12. Also, I spent the last 2 days walking around theme parks all day long with no issues and not even the need to ice my feet at the end of the day. I did put in a lot of effort to take many precautions the days leading up to the infusion through one week afterward. If that truly is the "problem zone", that would simplify things to take it easy then and resume normal routine outside that time.

Miriam, I use lotion with urea in it and aloe vera. However, as you note, since the skin is burned from the inside out, there is little the lotion can do. The best recovery was keeping friction off the areas and time. Mine took a very long time to recover. The best recommendation for next round is to consider the day before through 5-6 days infusion a blackout period where as much activity and friction should be avoided as possible. That seems to be the window that will cause problems later in the cycle. Delayed side effects. I feel for you! Hope your burns heal soon.

Well I’m going off Doxil Had scans which show progression. I see my Mo next week to decide what’s next. Getting scary!!!!!

Babs

I received my PET results today and they were a bit weird but appear to be positive. Right lobe = no metabolic activity anywhere in the lobe but new areas noted and increase in size in some places. Left lobe = decrease in metabolic activity which is only slightly above normal now and size is stable. The lack or or decreased metabolic activity is great. The size increases are likely linked to Y90 (at least I hope!), which can cause inflammation, edema and previously undetected areas of necrosis where the Y90 zapped cancerous cells that were not previously visible on the CT portion of the PET/CT. I should have a better read on my next PET/CT 3 months from now. Not sure how much of a factor Doxil is either way. I suspect the results are primarily driven by Y90 but one never knows. Bone mets continue to remain stable/healed with no metabolic activity for over 3.5 years now.

Babs, disappointing to hear about scan results. Did you have a mixed response with improvement in one area and progression in another? I will be interested to hear what you and your MO decide for your next treatment.

Hi Everyone!

Looks like I might be switching over from Halaven. Ugh..and I liked Halaven. Sad right?! I liked my chemo.

Anyway, I coldcapped with Halaven and have had pretty good results, thinned a little, but not enough to make it noticeable, and those areas are starting to grow back..yay! I have read Doxil is easy on the hair, but my MO says no..

Help...what’s the truth? And would continuing to cold cap help? Any advice on the switch would be great

Teachermom, you can ditch the cold caps! Doxil (liposomal doxorubicin) doesn’t cause hair loss. I did 7 months of cold caps on Abraxane before this and it was super traumatizing. I even had to wear a wig toward the end despite cold caps but it was nevertheless worth it. A lot of my hair grew back on Abraxane and I have a lot of thick hair the first few inches now which could probably hold extensions or a halo just fine at this point. My hair overall is “long” but very, ver thin at the end. People often confuse Doxil with first generation Adriamycin (doxorubicin) which causes hair loss, nausea Andre fatigue. My only issues with Doxil have been rashes and inflamed feet.

Hi Everyone,

Well sadly Halaven stopped working for me, and I am moving on to Doxil. I have been reading posts, but am hoping for advice on side effects. Also, I cold capped with Halaven and had great success, do I continue with Doxil? I am hearing mixed reviews...

I hope you all are feeling well!!

I hate this miserable ride we are on. Cancer sucks.

Hi Teachermon, welcome to the Doxil crew. I am sorry that Halaven stopped working. You shouldn't need to continue with your cold caps. Your eyebrows and lashes should start filling in soon which is awesome! My only major issue on Doxil has been rashes - a little worse than I could fathom as far as pain is concerned the first few rounds. On round 2, I developed large blisters covering my entire big toe on each foot and a sense the skin on my feet was being burned from the inside out, but, since then, Doxil has been very manageable, probably easier than any of my other treatments. However, I keep a watchful eye out and take precautions in hopes of avoiding another major skin issue. I have heard that the rashes are somewhat self-limiting and typically crop up on cycle 2 or 3.

My biggest key recommendation, which I learned after the fact and I had I known earlier, I may have avoided the worst of my blister problems on my feet - avoid any friction on or trauma to your skin and be very gentle with your entire body, especially hands and feet, 1 day before through 5-6 days after Doxil infusion. No tight clothes, minimize hot water touching skin (from hand washing, to showers, to dishes - dial down the temp when possible), no running, no pedicures. Also, consider preventatively soaking hands and feet in ice water 1-3 times a day during this time. This is supposed to be time period when any friction on the skin can lead to subsequent rashes, which usually develop around day 12 or so but can happen at any time. First cycle, I developed rashes where I had a bandaid over my blood draw site the day of infusion, rashes where the seam of my PJ's touched my body when I slept on my side, rashes and raw skin where my wrists rested on my home laptop when I am typing - hypersensitivity to friction I didn't even realize was occurring. I have also noticed that I seemed to fare worse when I didn't sleep a sufficient number of hours during that time period. The body needs extra repair time to move the Doxil out of the skin, which, along with tumor sites that are very vascular and have leaky veins, is a key location where the chemo will transport itself. Since I started laying low during that key time period, I haven't had any major issues and now have resumed running and pedicures during the other 3 weeks of the Doxil cycle with no problem.

I am hoping I can remain on Doxil as long as Kimberly as this drug is very doable and having hair is nice too!

Hi TeacherMom,

I totally second what JFL says about rashes. I take a cool shower the night before my infusion, I wear a bralet/cammy instead of a bra. I do not shower for three days afterwards because I can't discipline myself not to turn up the hot water. I don't use a heating pad, or anything that will bring heat to my skin. I haven't had as much difficulty with clothing friction as others except in my bra area.

Doxil comes with a side effect called hand/foot syndrome. I found this side effect much more mild than when I was on Xeloda. JFL described tender feet and I have issues with this too. I got blood blisters from little bumps/bruises. My feet get hot and very sensitive. I use cooling gel socks most nights during the first week and that seems to keep it at bay--similar to what JFL described. My skin gets really dry so after the first four days (again keeping an eye to keeping your skin cool/breathable) I use a good oil to moisturize my skin.

So far we are trying to milk all the time I can get out of Doxil while we look for a trial. My MO in MN is looking at an oral taxane and my MO at Dana Farber is looking at a HER3 study. I have a lot of research...but if these aren't possibilities, it looks like Halaven for me. What kind of cold-cap system did you use??

Cheers!

Kimberly

Hi Gramen, You have every right to be discouraged! I went on Doxil after fails with Taxotere and Cytoxan; Xeloda, Faslodex and Ibrance and all aromatase inhibitors. I have been on Doxil for 13 cycles. It knocked my tumor load down by 90%. Sometimes it just takes a lot to find the right drug.

Let us know if there is anything we can do to support you with this new plan.

Sending love and hope,

Kimberly

Hi Amy,

Sending love and hope as you transition to this new treatment plan. Honestly, I recurred from stage 1b within a year and nothing worked for me. This one did the trick -- knocked The Beast way back and has given me time to look towards my next options. I used Penguin Cold Caps too...but I just don't know if I can do it once a week. When I used them the first time it took eight hours each cycle.

I am prone to constipation. If you are, I would encourage you to pre-medicate with whatever you use to keep your digestive system going. I only needed Kytrile for anti-nausea as a pre-med. No Nuelasta shots (thank God) and my white blood counts stayed reasonable.

The rashes can be a bit of a drag...I used a Medrol steriod pack during one cycle and that helped enormously. There is also topical steriod cream that works too.

But I love, love, love the freedom between infusions.

Again, wishing you all the best for a peaceful and easy infusion tomorrow.

Warm blessings,

Kimberly

Hi All

I too am about to start Doxil on Monday after Halaven kept my liver and bone mets stable but growth in other areas and Abraxane kept the other areas stable but caused growth in my liver.

So far I have kept my hair during all chemos but it has thinned out and gone white. I also have no eyebrows.

I have the worst digestive tract ever so usually cop the nausea, stomach issues and mouth ulcers.

My question is this how does Doxil compare regarding general quality of life compared to the other 2 chemos? I worry because of the 3 week break that the side effects may be worse.