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

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  • kachincolor
    kachincolor Member Posts: 118
    edited December 2017

    Hi Kaption, Welcome. We are a small group but several of us are doing well on this drug. I didn't have Adriamycin during my initial treatment so it is a new drug for me. I was originally 1b in January 2015. Had Taxotere and Cytoxan, followed by radiation and 12 months of Femara when it was discovered that my cancer had progressed to stage 4 in the bones and liver. Have progressed through Xeloda and the Ibrance/Faslodex combo. Tumor markers were escalating in August and have now dropped by 60% since then. Scans show moderate regression.

    Very sorry you have experienced progression and are looking at a change in treatment. Sending well wishes and support.

    Kimberly

  • Kaption
    Kaption Member Posts: 3,192
    edited December 2017

    Thank you, Kimberly. My MO said this was not a common track, Adriamycin followed by Doxil.

    My bc background started in 2005 with stage 0 (!), with lumpectomy and radiation and then Tamoxifen. In 2012 the other breast also created a stage 0. I got aggressive and did a bmx. But, by 2013 after several months of complaining about a backache I was dx with mets to the bone (spine, hips, ribs). Stayed in my bones on Taxotere, Herceptin, perjetta ( I was HER positive then.) After mutations to HER2 negative I was on Ibrance & Femara a year. Then I added one brain lesion ( radiation and now apparently stable), blew through Faslodex, Xeloda and Abraxane in a total about 18 months adding liver mets and now one lung met.

    So, it’s time to put the brakes on this thing if possible. All soft tissue mets are small at this time. Just worried about the time when these slow but smart cancer cells start speeding up.

    Had my se talk with NP yesterday about Adriamycin. My main current issue is lack of stamina. Looks like that will continue to be true.

    I look forward to learning from you all.



  • kachincolor
    kachincolor Member Posts: 118
    edited January 2018

    Hi Kaption, Hope this note finds you well and that you had a lovely holiday season. I just got back from my 5th infusion of this drug and am happy to report that my tumor markers continue to move downward. This is the first treatment that I have been on that actually has consistently knocked the cancer back. It is kind of strange after all sorts of negative news for the past three years. Still working through various rashes and consistent heart-burn but the drug seems to be working for me!

    Sending warm blessings,


    Kimberly

  • Kaption
    Kaption Member Posts: 3,192
    edited January 2018

    Thanks Kimberly! I have had 3 pretty quicks fails in a row. So, I'm also looking for some better results.

    As I said, I've started with Adriamycin and will take it for 3 or 4 cycles before switching to Doxil. I had my first treatment last Wednesday. It was a rough weekend with nausea ( but no vomiting!) and fatigue. Feeling better today. I see my doctor tomorrow for labs and to make sure I'm tolerating this. Hope I can hang on!

    Glad to hear of good results.



  • kachincolor
    kachincolor Member Posts: 118
    edited January 2018

    Kaption, I didn't understand that you are doing Adriamycin first! Oh! No wonder you had an off weekend! Glad to hear you feeling better today. Well, I will pray that this knocks the Beast back and that you can maintain on Doxil. Because overall I am finding this pretty tolerable. I don't know if you get Hand/Foot Syndrome with Adriamycin, but most of us get it with the Doxil. Trick is to keep hands/feet hydrated as much as possible.

    Sending you warm blessings, high blood counts and praying this drug works!


    Kimberly

  • kachincolor
    kachincolor Member Posts: 118
    edited January 2018

    Hi Kaption, how are you holding up? When is your next infusion?

    My tumor markers have dropped 80% since I started on Doxil in August. PET scan confirmed that some tumors had gone dormant and my liver tumors and shrunk considerably. Best yet, my liver enzymes are all in the normal range -- so I am feeling well. The downside for me has been this horrible sun burn/itchy kind of rash that I have from my ankles to my neck. I have done a lot of treatment for it -- Benadryl, Liquid Ocean, Hydrocortisone cream, Sarna Cream, Eucerin cream...it is just getting ridiculous actually because I feel so well otherwise. I use bag balm on my hands and feet and that seems to keep the hand foot syndrome to a minimum. Just wish I could figure out this whole rash thingy. MO has nothing innovative to offer except steroids and I want to avoid that as much as I can since that will mean no sleep for me!

    Ah well. Hope you are doing well! Wish there were more gals using Doxil....feels a little lonely here ;)

    Cheers,

    Kimberly

  • Kaption
    Kaption Member Posts: 3,192
    edited January 2018

    I’m doing better, Kimberly. It was a tough week and a half with 2 boosters of IV fluids. But, Sunday I started feeling better. This is the worst nausea of any treatment I’ve had. I rarely vomit. But, did during this time. But, if I can get a week and a half of being able to function, I’ll feel lucky. Next infusion is the 17th.

    Your TM and scan results sound reassuring. Something to celebrate for sure. The rash is scary. Do you keep benedryl on hand in case it really starts feeling like an allergic reaction?

    Hope you can keep getting the good news.


  • kachincolor
    kachincolor Member Posts: 118
    edited January 2018

    Kaption, So glad to hear you are doing better. Sounds nasty though. That nausea thing is tough. So sorry that it wipes you out for a week and a half. I promise you are going to find Doxil a breeze after what you are going through.

    Not many women get the rash as extensively as I have gotten it. MO called me to day to remind me that I seem to get ALL the skin side effects and hardly any of the GI or other side effects. She offered prednisone but we both agreed that I would rather burn/itch a bit on Benadryl and Hydrocortizone. If it gets worse then I will do the steroid pack for a week.

    Thanks for writing!!

    Kimberly


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

    Kimberly, thanks for keeping this thread alive. I am not on Doxil but it will likely be my next treatment so I have been following this thread for a while. Do you also take any sort of daily over-the-counter non-drowsy antihistamine for the rash (such as a 24-hour Allegra or Zyrtec pill)? Wondering if that would help in addition to the Benadryl, etc.

    Kaption, I so feel for you on the "red devil". Such a tough treatment but also very effective. I hope you can switch to Doxil soon. Do adriamycin and Doxil cross the blood brain barrier?

  • Kaption
    Kaption Member Posts: 3,192
    edited January 2018

    That’s a good question, JFL. My one brain lesion has been stable for a year, so I didn’t discuss it with my MO. But I just pulled up some research that indicates onedanstron ( Zofran) actually supports Adriamycin in getting through the bbb. I am pretreated with onedanstron and have certainly taken quite a bit in the past 2 weeks.


  • babs6287
    babs6287 Member Posts: 2,021
    edited January 2018

    I have joined you in the world of Doxil. Before my 3 week trip to Paris for my dd to give birth to my grandson, my mo decided to give me Doxil instead of Halaven cause it stays longer in the body. I came back this past Sunday and saw my mo yesterday. She discussed staying on Doxil now so I had my second infusion last night. I am chock full of tests and procedures for the next 3 mos- having Y 90 to my liver on 2:20 & 3:22. She felt that since I tolerated Doxil so well it would be easier for me than coming in weekly for treatment and I agreed.

    I had two SE from the last treatment. -lots of shedding and a rash where I had rads in my back. I hope that’s all I get!

    Bab

  • kachincolor
    kachincolor Member Posts: 118
    edited January 2018

    Bab, Welcome to our little group! I am loving being on Doxil. (I mean if one must have chemo to stay alive!) It has knocked my tumor markers down 80%, and gives me three really functional weeks--which I will take thank you very much! I tend to have skin issues so I am getting the se of hand/foot syndrome. But I put cocoanut oil, or shea butter, or Aquaphor on my feet every night with socks and have no problems standing, walking or hiking. At first I got the rash only where I had rads and under my arms. By the fifth round, however, I got rash and sloughing skin really badly. Started on Benadryl, Hydrocortisone cream and Zyrtec and I am on my way to Florida spotty but feeling totally comfortable.

    My Minnesota MO originally had me taking a Nuelasta shot the day after my infusion, but it really wiped me out. My Boston MO didn't believe I needed Nuelasta given the time release aspects of this drug and he turned out to be completely correct. So I literally get an anti-nausea drug and the Doxil and after day four or five I am good to go. Oh! I forgot to mention I get a kind of punky feeling --not quite heartburn and not quite nausea but itsn't not bad and a "little" food always fixes that feeling.

    I saw photos of your darling little grandson. Congratulations!! I am a grandmother as well. Four little ones under four: Lily, Mae, Isla and Henry. Nice it worked out for my daughters to go into production so I could at least get to know them!!

    Let us know how you do on the Doxil!!

  • kachincolor
    kachincolor Member Posts: 118
    edited January 2018

    Bab, Welcome to our little group! I am loving being on Doxil. (I mean if one must have chemo to stay alive!) It has knocked my tumor markers down 80%, and gives me three really functional weeks--which I will take thank you very much! I tend to have skin issues so I am getting the se of hand/foot syndrome. But I put cocoanut oil, or shea butter, or Aquaphor on my feet every night with socks and have no problems standing, walking or hiking. At first I got the rash only where I had rads and under my arms. By the fifth round, however, I got rash and sloughing skin really badly. Started on Benadryl, Hydrocortisone cream and Zyrtec and I am on my way to Florida spotty but feeling totally comfortable.

    My Minnesota MO originally had me taking a Nuelasta shot the day after my infusion, but it really wiped me out. My Boston MO didn't believe I needed Nuelasta given the time release aspects of this drug and he turned out to be completely correct. So I literally get an anti-nausea drug and the Doxil and after day four or five I am good to go. Oh! I forgot to mention I get a kind of punky feeling --not quite heartburn and not quite nausea but itsn't not bad and a "little" food always fixes that feeling.

    I saw photos of your darling little grandson. Congratulations!! I am a grandmother as well. Four little ones under four: Lily, Mae, Isla and Henry. Nice it worked out for my daughters to go into production so I could at least get to know them!!

    Let us know how you do on the Doxil!!

  • MameMe
    MameMe Member Posts: 425
    edited January 2018

    Hi to my Doxil buddies, I was off site for awhile, so am catching up now. At nine, 10? months of tx, the fatigue weeks were getting worse. My onc. is trying every five week infusions, and if that doesn't help, she will reduce the dose again. No further trouble with the rash since the first reduction in dose. I notice a kind of queasiness in the first week after tx, but its not enough to require omeprazole or the like, yet.

    My ca 15-3 isn't doing much, its always drifting between 60 and 75. I don't know why they bother with it for me. I read about huge changes for some people, and high numbers in the hundreds. Kachincolor, your situation amazes me. I love your positive attitude! Kaption, its awful to hear that you need to have the adriamycin, I know that is a merciless compound. Hang in there. Welcome, Babs, and hope this works well for you.

    The new year has brought with it a renewed sense of hope. I am amazed to be heading into year 4 with MBC, in pretty good shape. I know that I have a fortunate situation, slow growing tumors and a strong response to chemo's. I want to have as much pleasure as possible this year. I wish we all lived closer to one another, but maybe we can build the connection more here. I will pitch in more, I promise!

    Hugs to all, Mame

  • babs6287
    babs6287 Member Posts: 2,021
    edited January 2018

    Hi

    I had my second Doxil last week. It really isn’t bad at all Thank God. Today I had my Y90 mapping. Long day! I hope the Doxil works cause once a month is a pleasure! From the last treatment my TMs went down just a few points not much of a dent They’re still in the 700’s.

    Kacincolor grandkids are the best. That’s why we have kids!!!!

    Babs

  • Kaption
    Kaption Member Posts: 3,192
    edited January 2018

    I had my second Adriamycin treatment. It went smoothly and I’ve fewer se because of a little more steroids. Although, pretty wiped out this morning.

    The possibily bad news came the next day with my TMs. Red devil is supposed to work quickly. My first TMs after treatment took a significant jump up. So, MO is moving scan up to happen before 3rd treatment. Best case news would be TMs are from increased bones mets. But, she said my lungs did not sound as clear and I have certainly been coughing more. So, Feb 2 scan will provide some insight. I have no idea what the next step would be.

    *sigh*


  • MameMe
    MameMe Member Posts: 425
    edited January 2018

    Kaption, I hope you will keep us posted about this marker jump. So baffling when you do a specific treatment and have conflicting signs of effectiveness. So sorry to hear you need to do this particular chemo. Pulling for you, K. Mame

  • Kaption
    Kaption Member Posts: 3,192
    edited January 2018

    Thanks Mame. Caught me off guard. My usual reaction is early good results that dwindle soon after. I haven’t had a long term response since one year on Ibrance and Femara that lasted a year. Everything else has been 6 months or less.

    I’ll let you know about the scan.

    Thank you for the support.


  • babs6287
    babs6287 Member Posts: 2,021
    edited January 2018

    Kaption hopefully this is just a spike due to tumors dissolving. Keep us posted!

    Babs

  • NouzayO
    NouzayO Member Posts: 79
    edited February 2018

    Hi ladies,

    Looks like I’ll be joining this small group of Doxil users soon. After miserably failing xeloda (only 3 cycles), my MO recommended either Halaven or Doxil. The once a month and possiblity of keeping hair is really attractive.

    I was diagnosed at 37 while pregnant stage 4 with bone and liver mets de novo. As you all can imagine my life has never been the same since. I go through these hope and despair cycles with every new treatment I follow. In only 16 months since I started treatments, I already burned three bridges: Ibrance/ femara, abraxane and Xeloda!

    I want to keep fighting for my baby and my older kids but it just feels that the odds are not in my favor sometimes.

    I’ve read through the whole thread ( it’s a comparatively short one), and was wondering about the fatigue and the neutropenia ... I was neutropenic on Ibrance and ended up in the ICU for 10 days !! I think that was the worst experience ever! But from what I read those who do take neulasta seem to have even more fatigue.

    Did most of you keep their hair?? I did the cold caps on abraxane and that saved a lot of it .. it was a pain in the butt but I think it meant a lot for my kids to see their mom somehow looking normal. That’s partly why I prefer doxil over Halaven fir now.

    I’m going for an echo nect week to see if I even qualify for doxil.. we’ll see. Just thought I’d introduce myself just in case ;)


    Btw, I don’t know if it’ll be enough but I tried aloe vera gel along with the urea cream during Xeloda and seemed to have been working for the hand foot syndrome. Just thought this may help someone out there.


    Love you all .. sending virtual hugs and pra



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

    NouzayO,

    I've done Halaven and am currently on Doxil. Hands down, Doxil is easier - less anemia, less fatigue, no hair loss. The schedule is also great, one week on, three weeks off. I'm entering my 9th month of treatment.

    I will tell you that the SEs are cumulative, and that in this ninth month, I am tired. I've had some other health blips that have contributed to the fatigue, so I won't blame Doxil entirely.

    Talk to your MO about Neulasta. I have heard that the colony stimulators like Neupogen and Neulasta might contribute to tumor growth. http://www.oncologynurseadvisor.com/oncology-nursi...

    Here's to a good long run on whatever treatment you choose!

  • NouzayO
    NouzayO Member Posts: 79
    edited February 2018

    Thank you Blainejennifer for your reply!! That’s really reassuring to hear .. I have noticed that not a lot of people have Doxil in their signature but those who do are mostly ER/PR + and Her2 - (like myself) so that may mean that it’s a good choice for people of a similar dx. I guess I need some strong chemo to knock down the liver mets but I feel the AC is too aggressive so maybe that’ll be a good compromise.

    What is CMF? Why do people use it in the middle of a treatment and go back to same medication

    Hope you continue to get great results from Doxil and reach NED soon <3

  • babs6287
    babs6287 Member Posts: 2,021
    edited February 2018

    I’m leaving Doxil and will probably go back on Halaven. My TMs rose like crazy. Scans on 2/21 but for me anytime I have that big a jump it’s meant progression. My mo is trying to move up my y90 due to this. Will know tomorrow

    Babs

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

    Babs,

    So sorry about the TMs!

    Can I ask about going back to Halaven? Did you leave it because of SEs or rising TMs? I ask, because I'd love to go back to Halaven, but had to leave it because of a minor progression.

    It's a good drug, and I hope that it gives you great results.

    Jennifer

  • babs6287
    babs6287 Member Posts: 2,021
    edited February 2018

    Hi Jennifer

    I left Halaven because I was going to Paris for my grandsons birth for 3 weeks so my mo put me on Doxil monthly so I could go. Obviously the Doxil is not working. I’ll be going back to Halaven after my y90 which is on 3/2. My next Halaven txt is on 3/8

    Babs

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

    Babs,

    Thank you for the information. As much as Doxil and I quibble like an old married couple, it looks like I'm going to be on it the longest of all my regimens. Shockingly, it's been a year. All my cardio stuff looks OK, so we'll keep going.

    Doxil keeps me stable - that's it. I'm going to have some radiation for a hot spot in my hip, and I've already had some for my back. TMs are in the middle 300s.

    Doxil also gives me colitis and fatigue. But, if it keeps working, I'll keep eating applesauce and white toast.

    Good luck with the Halaven. It's a really good drug, and the only one that's ever gotten me to NEAD.

    PS: This month will mark 6 years at stage 4 for me. Time has not flown :)

  • kachincolor
    kachincolor Member Posts: 118
    edited March 2018

    Hello All, I am sorry for the long absence. I was in Florida for the month of February and tried to take a "cancer vacation" --no writing, no research and no blood tests for four blessed weeks! I am sorry Babs that Doxil wasn't your ticket but glad you have something in your pocket that works for you. Blainejennifer it is inspiring to hear how you have been on this drug a year. I just had my 7th treatment on Thursday and my tumor markers continue to drop. On the CA 27.29 I have gone from 1200 to 139 -- but the fatigue and nausea the first week are getting a bit tougher to manage. I had really bad skin rash last month and had to take some steriods to manage it.

    Hello NouzayO! Welcome to our little group. I've kept almost all of my head hair but lost my eyelashes and most of my body hair. Weird I know. I started using Latisse in November and I now have enough eyelashes to put some mascara on so that is helpful from the appearance standpoint. I think Doxil is relatively easy. I get four miles of walking in on the day of my infusion and the morning of the next day. Then I go down for about three days before I start to get my energy back. I tried Nuelasta at the beginning but a consulting Oncologist suggested that I could manage without it due to the time-release aspects of Doxil. Skipping the Nuelasta has been very helpful and my white cell counts are better than when I was on Ibrance.

    My biggest suggestion with Doxil is to stay away from hot drinks, baths/showers and tight clothing the first four days after infusion. Mouth sores and rashes seem to be manageable when I stay cooler those first few days.

    Warm blessings,image

    Kimberly

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

    Got the scan review today. Still stable. TMs floating in the 360s. Doxil continues.

  • babs6287
    babs6287 Member Posts: 2,021
    edited March 2018

    Blainejenn love hearing stable for you!

    Babs

  • kachincolor
    kachincolor Member Posts: 118
    edited March 2018

    Blainejennifer, Fabulous news about the stable Tumor Markers!! So inspiring.

    Babs, how is your grandson doing?? You must be getting photos!

    The attached photo keeps me smiling! This is my oldest grand-daughter Lily Bryte. Do you remember when you felt fconfident in your bathing suit?? Such joy in girlhood!

    Warm blessings and wellness,

    Kimberly


    image

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