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

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  • gramen
    gramen Member Posts: 179
    edited August 2018

    Thank you Kimberly!

    So glad we can communicate and share our experiences, worries, etc. Today I'm thankful for this thread.

    Will get Doxil and Avastin on Monday. Can't wait, my chest and abdomen hurt due to mets.

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  • kachincolor
    kachincolor Member Posts: 118
    edited August 2018

    Hi Ladies! A bit more activity on this thread which is nice. I am a little shy about posting but I feel like I know a bit about Doxil so that makes me braver :)

    Gramen, I am thankful to be able to connect with others too! Good luck with your infusion on Monday and I wish you the easiest of times with side effects.

    Amy, I hope everything went well today.

    Liwi, Welcome and it is nice to meet you on this thread

    Tennille, Digestion side effects are rough. All I can say is don't drink coffee or anything hot the night before or the morning of your infusion (for mouth sores); I suck on ice and drink ice water during my hour infusion and continue with lots of ice water the rest of the day. I go to an Integrative medicine clinic and get some pretty strong pro-biotics which I take twice a day. Acupuncture helps with other digestive issues for me.

    The single best thing I love about Doxil (besides my hair of course) is the long break inbetween infusions. I feel like the side effects come and go in a pretty manageable way. I will get a wave of nausea or weakness or fatigue that might last 20-40 minutes but never the whole day. On occasion I have an "on the couch" day where I am really fatigued but generally I have pretty good days overall. I have travelled significantly in the last year, including two months in Florida and Italy and camping in National Parks/Hiking.

    I know some people have a real difficult time with this drug -- but after everything from the start of my diagnosis being a fail, I am pretty jazzed about Doxil.

    Warm blessings,

    Kimberly

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  • JFL
    JFL Member Posts: 1,947
    edited August 2018

    Liwi, welcome to this group! One round down.

    Tennile, the every 4 week schedule seems odd as it is not used for other chemos (of which I am aware, at least). It is not that the side effects are so bad, one needs 4 weeks rather 2 or 3 like other chemos. The issue with Doxil is that it stays on one's body and keeps recirculating for a long time as it goes undetected by the immune system based on its liposomal formulation. Healthy cells can clear it out when it circulates through repeatedly but cancer cells cannot and occasionally, it deposits into skin cells that have been damaged due to cuts, friction, irritants, overly hot conditions and/or sweating skin and cannot be cleared out.

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  • Teachermom2
    Teachermom2 Member Posts: 81
    edited August 2018

    Hi Everyone,

    Ok...i had my first infusion yesterday and I tried to follow all the advice I had been given. I sucked on ice cubes..iced my hands and feet...I took a near cold shower the night before. I just hope it works! The BIGGESt thing was I ditched the cold caps...it was a huge step and I am so worried. I have worked so hard to keep what I have, I just hope I don't fall in the 15% that loses it. Ugh

    I am currently sitting with a cold coffee and red steroid cheeks. The rain has stopped for a while and I will head out to try an dead head and bring my flowers back to life a little.

    I hope everyone is feeling well and has a great weekend!💕

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  • EMAW
    EMAW Member Posts: 132
    edited August 2018

    Thanks, TeacherMom2,

    Where do you live? I ask because I live in southeastern Pa. and have recently discovered a non profit that has successfully raised monies to help us girls who are either recently diagnosed or are Stage IV. Unite For Her offers a "passport" which allows multiple options of free support off the chemo grid. Stuff like YMCA membership, CSA membership (free local - Lancaster -vegetables once/week), accupuncture, massage and so on. If you are Stage IV, the passport booklet is renewed every 6 months. Here is their website: https://uniteforher.org/. I initially considered not attending their Wellness Day hosted by Fox Chase Cancer Center back in June. I am generally not interested in spending time discussing my cancer so I don't attend any support groups and thought this was another. Instead, I was happily surprised. Their nutritionist will meet me at my local grocery store next month and she will fill my cart with $100 worth of "healthy" groceries and charge it to UFH. It will take up 1 or 2 of my passport voucher blocks. Then, she will come back to my home and make a meal for us. That's another block off the passport. I intend to get to my YMCA in the next few days (I'm on a Doxil break until Aug.27th). Can't remember how many blocks that uses.

    How are you feeling after a few days?

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  • Teachermom2
    Teachermom2 Member Posts: 81
    edited August 2018

    Hi All!

    Well...a week in and so far so good, but I am not sure when side effects kick in. I have been trying to follow all the preventative rules and just keeping my fingers crossed. I am open to ALL advise and tips

    Miriam, thank you so much for the info, that sounds like a wonderful organization. I live about an hour north of NYC and do not have a program like that. How wonderful to have such support and good for you for taking advantage of it. I am freakishly private and have trouble allowing myself to accept help.

    I hope everyone is feeling well. Enjoy your weekend!

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  • kachincolor
    kachincolor Member Posts: 118
    edited August 2018

    Hi Teacher, I am glad you are feeling well after a week!! I think I got the rashes that I got around week three. I also find that I have days that are lower energy or more digestive upset that seem to follow a kind of weekly pattern. But generally I have found this drug pretty manageable and glad you have, so far, too!

    Hope all of you are comfortable on this treatment and getting great results!

    My tumor markers were starting to move a little upwards but scan showed minimal to no progression. So we shortened the time between treatments so I am paddling a little harder to manage the fatigue. Seriously, I just have to walk more and bike more which is just soooooo counter-intuitive for me. Praying that my next tumor marker reading (on the 6th of September) will remain stable!

    Warm blessings to all,

    Kimberly

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  • gramen
    gramen Member Posts: 179
    edited August 2018

    Finally had Doxil infusion yesterday. Is my 6th chemo since metastatic but I am so scared, not sure why! So far okay, hope it kicks in soon and gets my lungs in better shape.... please universe, give me a break!!!

    Still fighting insurance to get Avastin approved for suspected necrosis in brain spots.

    Glad we have a place to share, nobody else gets this!!!




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  • kachincolor
    kachincolor Member Posts: 118
    edited August 2018

    Gramen,

    I am praying that this drug works for you too! Of course being through so many treatments is scary! This whole mess is scary!

    Sending love and hope,

    Kimberl

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  • Teachermom2
    Teachermom2 Member Posts: 81
    edited August 2018

    Kimberly thanks for the info. So far so good...mouth sores...yuck, but managing. I hope to avoid the rashes but I know that is unrealistic. I feel like I am waiting for the other shoe to drop.

    It’s been HOT these last few days, I can’t wait for fall!! In my world the perfect temp is between 70 and 75. Then I can still get away with my flip flops but I am not miserable,

    I hope everyone is feeling well!! Have a great weekend!!!

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  • Tennille76
    Tennille76 Member Posts: 92
    edited August 2018

    Day 12 after my first infusion. So far so good side effect wise but we will see I guess. Just want my tumours under control. Heart scan showed my ejection fraction at 45% and it needs to be at 50% to stay on Doxil so off for an echo on the 12th.

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  • BC110615
    BC110615 Member Posts: 7
    edited September 2018

    Hello Tennille,

    I just started Doxil on Friday 8/31/18. I have not had an echo yet but will in the next week or so. My onc did not want to wait to start me on the drug since I had been with no treatment for two weeks. Please keep me posted on your side effects. I also took eribulin from Jan 2018 - August - 2018 ( 22 weeks - 2 on and 1 break week was the pattern). Good luck on your next echo. Thanks Liz

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  • BC110615
    BC110615 Member Posts: 7
    edited September 2018

    Hello

    Just started Doxil on August 31, 2018. Thanks for the good explanation of why the cycle is every 4 weeks. Hope you will continue to do good.

    Thanks

    Liz


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  • JFL
    JFL Member Posts: 1,947
    edited September 2018

    Hi Liz, welcome to the Doxil group. I hope this med kicks back your BC. I didn't have an echo until after 4+ months. My MO also did not want to delay treatment. From the beginning, I planned to have echo at 3 month point but had a lot going on at that time. My echo in August was good. Can't remember exact numbers but MO said my ejection fraction looked better than most healthy people.

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  • Tennille76
    Tennille76 Member Posts: 92
    edited September 2018

    Hi Liz

    No side effects as yet but due to a huge tumour on my brachial plexus, I need to take a break from treatment to get radiation which will increase my risk of skin issues but at this point I couldn't care less as I've lost about 90% function in my arm and suffer from pain every day. Good luck and I'm sure you will do fine

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  • gramen
    gramen Member Posts: 179
    edited September 2018

    Just dropping by to say hi!

    I can't believe this treatment is every 4 weeks! First round did kick my butt with fatigue. Also mouth sores, now my throat. And I can tell HFS is already back (I had it with my previous treatment, Xeloda). So enough complaining.

    How many rounds you had before getting a scan to see how Doxil was working. This better works. I've been failing treatments since March. Halaven/herceptin, then Xeloda/herceptin. Now just Doxil.... ugh!!!

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  • JFL
    JFL Member Posts: 1,947
    edited September 2018

    Gramen, I had a scan after 3 months. Have you looked into Y90 radioembolization or other local treatments for your liver mets? There is a thread on local liver treatments you may want to check out. I, as well as some others, recently had Y90. Y90 is indicated for persons with more widespread liver involvement that does not qualify for therapies reserved for a few tumors.

    As for Doxil recommendations, be super gentle on your feet and hands 1-2 days before infusion and 5-6 days afterward to prevent issues. Doxil goes largely undetected by the immune system and circulates through the body longer than most chemos. No friction or heat to the extent it can be avoided around that time. Wear loose shoes and clothing and soft socks around that time. The rashes and/or feet issues may be tough rounds 2 and 3 but typically improve after that. I have found the hand foot issues with Doxil are different than Xeloda. Xeloda was more skin focused whereas Doxil issues crop up a little deeper down in the tissue and brim to the surface of the skin. I describe it as fire feet, which includes swelling and pins and needles in addition to any peeling, blisters, etc. I had a rough time rounds 2 - 3 but have only minimal hand/foot issues now. Also, no hot drinks around the time of infusion to prevent mouth sores but that pretty much goes for all chemos.

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  • gramen
    gramen Member Posts: 179
    edited September 2018

    JFL,

    Thank you so much for the tips. I'm at a point that I just try to survive everyday and forget about these things. I know, how dramatic, but that's how it feels.

    Wishing you much success with the Y90 procedure! I followed that for a while, but my timeline is pretty outdated. Kadcyla melted away my liver mets 1.5 years ago. But then I had progression to brain and lungs.

    Right now lungs are my main issue. Since last summer we thought I had pneumonia, after 3 months biopsy showed it was cancer, then taxol helped but I suspect my Dr took me off prematurely (after 10 rounds), then struggling to find something since. I just had 1.5 liters of fluid drain from rt pleural effusion and a few days later .8 liters from the lt. We keep draining hoping Doxil will start working and dry them up.

    I need to do some research and see if there's something along the lines of radiation or something that could help my lungs...

    Thank you so much!


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  • Liwi
    Liwi Member Posts: 298
    edited September 2018

    Today I had my 2nd Doxil infusion. I’m icing my feet several times a day like I did last time, also hands. Both are quite warm which is the opposite of my norm as I’ve always had excessively cold hands and feet. When I had my Teach with the nurse practitioner she mentioned one thing some people said worked is to put Ban roll on deodorant on their feet and hands so I’m trying that too. Has anyone else heard of this?

    Hoping for minimal side effect for all of us and mostly hoping this chemo works on our cancers,

    Healing thoughts for all.

    Barb
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  • Teachermom2
    Teachermom2 Member Posts: 81
    edited September 2018

    Barb looks like we are on the same schedule, I had my second Doxil infusion yesterday as well. Last round I was fortunate, had some yucky feeling days, and a few mouth sores, but all tolerable. I am fearing the effects this time as most say it is infusion 2&3 that impact the most :( great. I just want it to work!! I haven’t heard of using ban roll on.... interesting.

    I hope all are feeling well!!

    Amy


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  • JFL
    JFL Member Posts: 1,947
    edited September 2018

    Jennifer or anyone else, how did you handle Doxil-induced anemia? I now have it. Jennifer, I recall you had anemia issues at some point. Really not interested in doing a blood transfusion down the line if I can avoid it

    Amy, I haven't heard about using deodorant specifically but it makes sense since at least part of the issue is thought to be caused by Doxil traveling to the skin through sweat. When I had major rashes under my arms from Doxil, I did notice the skin where I put deodorant was unaffected while the “back fat" area, upper inner arms and sides below underarms - all areas around the armpit had a dark red, blistery rash. Since hearing about the sweat connection, I try to minimize situations my feet or hands will sweat.

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  • Tennille76
    Tennille76 Member Posts: 92
    edited September 2018

    Anyone else feel liver pressure during their 'break time' after infusion?

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited September 2018

    JFL: I took 27 mg iron supplements during the worst days of the cycle. Take them with B12 and Vit C for best absorption.

    My hemocrit never got great, but I floated right over the cut off point. Cancer likes iron too, so I felt the need to be careful.

    I also wanted to avoid transfusions for when I "really" needed them, and I'm leery about the red cell stimulators as the word is not in about their tumor enhancing properties. I mean, if I need them to keep from dying, OK, but otherwise I'll exercise caution.

    Best of luck to you.

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  • JFL
    JFL Member Posts: 1,947
    edited September 2018

    Thanks, Jennifer. I am worried about taking iron supplements as I too have heard they fuel cancer. I am eating lots of iron rich foods and hoping things pick up by the next round. This has been giving me insomnia and restless leg syndrome on top of the fatigue.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited September 2018

    JFL:

    You are parenting a young child too, right? Salutations!

    For the restless legs and insomnia, have you tried keeping your minerals up to par? I benefit from magnesium, calcium and potassium supplements. My legs get weird without them.

    Jennifer

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  • kachincolor
    kachincolor Member Posts: 118
    edited September 2018

    Hello Doxil Ladies,

    I have had 14 rounds of Doxil to date. First medication that has actually worked for me!! I ditto all the advice about avoiding heat and sweat the day before infusion and for a few days afterwards.

    Tumor markers have stopped dropping and are now doing a two-step dance up and down. Scan shows only slight progressionwhich is lovely. I have enjoyed the freedom between infusions every 28 days, and went to Telluride at the beginning of the month. Unfortunately, it looks like I might have ONJ so having a number of appointments to sort this out.

    Like Jennifer I find magnesium, potassium and calcium great for restless or cramping legs as well as the combo before bed seems to help me sleep.

    Warm blessings,

    Kimberly


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  • chef47
    chef47 Member Posts: 76
    edited September 2018

    Hi ladies! I am jumping in with starting Doxil this week on the 20th. I started reading this topic from the beginning and really appreciate all that has been given to this thread already. I was diagnosed stage 3 in 2013 and then stage 4 this past January. I started with tamoxifen and had progression then went to weekly taxol and was stable on that but I had gotten really sick with fevers, fatigue and just felt like I’ve had the flu or something for almost 2 months now, been thru every blood test possible and the only thing the drs can say is that it tumor fever, so onto Doxil I will go. I had stopped taxol back in June I think, I only had 8 or 9 weeks. Anyway I’m kind of hoping that I will actually feel better once the chemo starts getting rid of the cancer! This might seem foolish to think I will feel better on chemo but honestly I’ve pretty much been in the bed for 2 months without treatment, besides radiation for bone mets pain, so it’s not that far of thinking right? Looking forward to bonding over the red drink with y’all;)
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  • JFL
    JFL Member Posts: 1,947
    edited September 2018

    Chef, welcome to Doxil. I hope it starts working right away for you. Did your doctors scan you when they thought you had tumor fever to confirm you it was not working? I see you noted your cancer was stable at the time. Why did your doctors and you decide to go without treatment since June? You must feel relief to finally be resuming treatment. Be sure to let us know how your first Doxil goes on Thursday.

    Jennifer and Kimberly, thanks for the info regarding cramps/restless legs. I take calcium but do not take any magnesium or potassium. Need to look into that.

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  • chef47
    chef47 Member Posts: 76
    edited September 2018

    jfl, hi and thanks for the welcome. It’s all been confusing, I had just had a bone scan showing stable in bones, small improvements in lungs and liver. We were pretty happy. Then the next week the fevers started. Doc wanted to do petscan but ins denied. They sent me to infectious disease to rule out anything they may have missed. Nothing was abnormal. They had me on several diff antibiotics. No improvement. They just said I was too sick to do the chemo. I was very weak, lots of increased pain, intense sweating and chills, everyday or night fevers from 99.9 to 102. Finally one night I started vomiting and diarhea and was hospitalized, there they did more testing, more antibiotics. They did ct scans there and it showed small progression. So idk, basically my onc says that the fever shows that the cancer is being active? So the taxol wasn’t doing a good enough job. He said something about clone or rogue cells that don’t respond? I know I’ve asked the same question you have and they always say something really smart that I just can’t relay back? Lol it makes sense when I’m there? So the other question about not being treated for this long is since he wanted to change chemos, he chose Doxil, I had just seen the radiation oncologist who pretty much promised with very little side effects he could get rid of the agony I was in from leg/ pelvis pain. Doxil and chemo don’t get along well so I couldn’t start Doxil until a week or so after last rad. To be honest slithers are still some days recently that I’ve felt too weak and sick to get back to chemo. But I felt ok today, it comes and goes. My hope is that since I’ve been so sick for awhile now that when I start Doxil and it does it’s job I will feel improvement:) I will def let y’all know how it goes. I pretty much read back from the beginning and learned so much from all of you already. Is this still an active group? How many are we? I noticed that several here had to change treatments and left the group and their absence was felt even by me;) lol it’s just so nice to have people to talk to and learn from, and never have to be alone in this again:)
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  • chef47
    chef47 Member Posts: 76
    edited September 2018

    hey guys, also wondering how Doxil has affected your appetites/weight

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