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All About Doxil

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Comments

  • wallaby715
    wallaby715 Member Posts: 183

    Hi Nancy,

    I'm sorry you have such a bad reaction to the various chemos. I have been really struggling with my hands and feet lately. I was off the ibuprofen because of having the port put in and when I took my first one last night, it made a world of difference in my hands and feet. I know it's an anti-inflammatory but I didn't realize how much it was keeping the H&F at bay. My hands and feet are much better today and, needless to say, it has greatly improved my attitude!

    Hoping for better days for us all! Hugs and prayers all around!

    Foxy in her lair!

    image


  • Nancylm
    Nancylm Member Posts: 83
    Such a nice treat to see Foxy again. It so brightened my morning. Abbey likes to perch up high, but Charley will only climb as high as the sofa. Nancy



  • wallaby715
    wallaby715 Member Posts: 183

    Glad to hear that the picture cheered you up! My two love their tall kitty tree that is up in my master bedroom. They usually sleep there all night. The picture of Foxy was taken in Virginia and I no longer have that little tree but do have another small one that has a hammock type bed on it and they won't go near it! Cats!

    Cindy

  • msmann63
    msmann63 Member Posts: 54

    Hey Sweet Friends -

    This is short and sweet because I am still trying to get my head and feelings wrapped around it.

    Saw my Doc today and had 3rd Doxil treatment, along with the Xjeva (sp) shot and Nulasta On-Pro. Tumor marker has increased again to 129. It’s been a steady incline since September of last year. I have a PET Scan scheduled for July 13th and follow up appointment with Doc. We’ll see what the scan shows and what the plan is. He’s pretty convinced that another change in chemo will be in order, but wants to get scan results first. Funny, but my first thought when he mentioned changing, was that I’ll lose my sweet, sweet, friends I’ve made in all of you. 😢I’m disappointed, to say the least. Trying to keep a positive attitude. That’s hard today as I need to let it all sink in.

    I pray y’all all are doing well...including your fur babies. I’ll write more later. In the meantime, I am continuing to pray for us all! 💕💕💕🙏🏻🙏🏻🙏🏻

    Bridget

  • Nancylm
    Nancylm Member Posts: 83

    Bridget, I was thinking the same thing and will dearly miss our friends here if we have to move on. Maybe we can tag along on here if there is no objection. We need each other's support especially if a change in chemo is coming. I am waiting for a scan too and I'm also wondering what my genetic test will reveal. Do you know what chemo will be next? Thinking of you tonight. Praying for our doctors as they work to save our lives and for us too. 🙏🙏🙏🐾 Nancy










  • msmann63
    msmann63 Member Posts: 54

    I would love to hang on here. There’s something about a small group that fills us with love and extra understanding.

    Doc mentioned Xeloda in addition to another infusion chemo. I can’t remember the name. My brain was scrambled.

    I’ll let you know the plan.

    Love y’all! 💕💕

  • wallaby715
    wallaby715 Member Posts: 183

    Bridget & Nancy: I would be sad if you were not on this thread anymore just because you moved to a different treatment! I agree the small group is more enjoyable, at least to me. I still go on the All About Xeloda page because they have some good ideas for H&F because most of them have it but it's hard to keep up there are so many posting!

    I surely have no objection to both of you remaining on this thread no matter what treatment you end up on. I'm interested in how you are doing as people, not just participants in a certain type of chemo!

    Please keep us all updated on what the next moves for your treatments end up being.

    Hugs and prayers to all! Heart

  • msmann63
    msmann63 Member Posts: 54

    Thank you, Cindy. Your love and acceptance mean so much.

    Has 3rd and probably last Doxil infusion on Thursday. I’ve had some 🤢 and 🤮 most of Friday. That was a different reaction for me. The blisters are clearing up, but the neuropathy has not. Still difficult to walk. Doc increased my Neurotin dosage to, hopefully, get some relief.

    I just feel like a dishrag. Zero energy. I’m sure it will pass.

    Will give you info as I have it. In the meantime, I’m praying for us all! 💕💕🙏🏻

  • wallaby715
    wallaby715 Member Posts: 183

    Bridget: I hope this finds you feeling better. I have my infusion on this coming Friday. One part will be easier and that is the port! No more sticking in my left arm. Feeling a little better than last week, I'll enjoy it while I have it until Friday!

    Cindy

  • msmann63
    msmann63 Member Posts: 54

    The port makes a huge difference! I’m glad you got it.

    It’s been a blah day. No energy and just so very sad today. 🤷🏻♀️

    I’ll be praying that your treatment Friday goes well with few SE.

    💕💕💕

    Bridget

  • Nancylm
    Nancylm Member Posts: 83

    I've had a little cough for a few days....just an annoying tickle. Seems to be going away today. My scan will be on the 8th and follow up with MO on the 11th. Wondering if taxol will be next. I'm praying that I can tolerate whatever it might be. I don't have a very good track record with the chemos.

    Bridget, Hope you are feeling better. Hope to hear from you soon. Cindy too! 💖💖💖🙏🙏🙏🙏

  • wallaby715
    wallaby715 Member Posts: 183

    Hello Ladies! Well, went to my MO on Thursday. Had been feeling pretty good in the energy department. Hands and feet had been doing better. Thursday evening walked upstairs and got lightheaded and very out of breath (much more than usual). Woke up Friday morning with basically zero energy. It was all I could do to see my son off to Seattle (thank goodness he had a rental car and drove himself to the airport!). I did manage the infusion Friday at 10:30. Not as bad today but achy from the Zometa. My MO said scans and an electrocardiogram before next visit at end of July. No results back yet for tumor markers from blood test on Thursday. Interested to see those.

    Hope you all are doing better. Prayers! Cindy

  • Nancylm
    Nancylm Member Posts: 83

    hi Cindy, hope you continue to feel okay. It’s hard to predict how each of us will feel as our bodies have to deal with all the chemicals we throw at it. I’ve been dealing with bronchitis and finally this morning I went to urgent care. Now I have a antibiotic and an inhaler. Scan on Monday. 🙏🙏🙏




  • wallaby715
    wallaby715 Member Posts: 183

    Hi Nancy, hope you are feeling better. Boy, I've had some rough days since last Friday. I got my infusion Friday AM. I mentioned in my previous post how I'd had an "upset" Thursday night but got the infusion OK Friday. That was the end of the last good time! I have been barely, and I mean, BARELY able to pull my self out of the recliner. I have felt so weak and have had a somewhat elevated heart rate. My son was here again part of the time but with his two big German Shepherds, which didn't exactly overjoy me, I have to be honest. My Lab loved playing with them and they all swam in the pool but the added hair and mess wasn't what I was needing at that moment. Today I have managed to get up, get breakfast, sit through a sort of palpitating episode and now am in my office typing this. My ant infestation has come back so I gave in and called the exterminator! He'll be here tomorrow. UGH!!! I hate feeling like this and I hate not being able to take care of myself 100%!!! I'm trying to make sure I eat and eat enough plus added in some calcium tabs as I just had the Zometa infusion and low calcium can sometimes make your heart do strange stuff.

    Sorry to be such a whiner but I'm really frustrated! When I can type more I'll tell what else happened to me on Thursday (yesterday) morning!

    I need all the prayers you can gin up for me, I think! Hugs, Cindy

  • Nancylm
    Nancylm Member Posts: 83
    Cindy, So sorry you are having many bad days. That was happening to me last Doxil treatment. I kept waiting to feel better, but it just didn’t happen. I skipped my last treatment and still feel sick. Are you able to sleep? I feel like that is my only escape, but I don’t ever get enough. My grandson came for a week over the holiday and tried to help, but I don’t like for him to see me so sick. I have a scan tomorrow morning and treatment on Thursday. I’m hoping for a new plan and will let you know soon. Hoping for better days for all of us. Thinking of you! Nancy
  • wallaby715
    wallaby715 Member Posts: 183

    Hi Nancy,

    I have been sleeping OK except for a couple of nights where I had the heart sound wooshing in my ears all night! That was when I felt the worst. Since I haven't called my MO to tell them what is going on, I think I'm going to do that this afternoon. There must be some solution to feeling like you have no blood in your body! I have to be able to function by myself here and feeling like this is not going to get it done.

    Please let me know how your scan went today. Prayers for us all! Cindy

  • msmann63
    msmann63 Member Posts: 54

    Hello My Friends:

    I’m sorry I’ve been out of touch recently. Have not felt well lately. Just so tired all the time. My sore, blistered feet are giving me fits. The numbness has dissipated since doc increased my neurotic dosage, but nothing helps the blisters and soreness.

    I have a PET Scan today then doc on Thursday. I guess we’ll make a decision on chemo then. I’ll let y’all know the results.

    Not very talkative today, but please know that I’m praying for y’all daily! 💕💕

    Bridget

  • Grannax2
    Grannax2 Member Posts: 2,387

    X has failed me. So, I'm wondering what's next.

    Doxil sounds like it's a possibility. I had The read Devil in 93. They said I got my lifetime maximum. I looks like lots of you had it at the beginning and are still able to take Doxil. No hair loss is good but it sounds like it makes you pretty sick. Has anyone had a scan to see if it's working? I have. Mets in my lung, mediastinal lymph node and lots in my liver. All of off them kept on getting worse, X did nothing ..

  • wallaby715
    wallaby715 Member Posts: 183

    Hi Grannax2: I was on X also and on the X thread. I, too, had the Red Devil my first time around in '06. Doxil is different than the A/C in that they coat it with a liposome so it is not as harsh as A/C. My MO mentioned a limit for Doxil but so far, she has not given me anything more concrete as to when that limit will be reached. Except for a recent bout with anemia, which required a transfusion of 2 units of blood, I have tolerated the Doxil pretty well. Be aware it does cause H & F, just like Xeloda! I thought I was going to get rid of H & F but nope! I also have mets in my right lung, my liver and extensive bone mets. I had my third infusion on 6/28 and my tumor markers went from 105 to 88. Hoping for another drop when I get my next infusion on 7/24. I also get Zometa along with the infusion so have some SEs from the Zometa but they're very short duration. All in all, as long as they keep my Hemoglobin levels up, all is as well as can be expected. Everything makes you tired where chemo is concerned!

  • wallaby715
    wallaby715 Member Posts: 183

    Hi Bridget: So sorry you have not been feeling well. I did an overnight in the hospital last Friday night to get 2 units of blood. My hemoglobin was so low I could hardly stand up. Certainly feel much better now! Please let me know how your doctor's appointment was and what's going on with chemo for you. Praying for all of us!

    Cindy

  • wallaby715
    wallaby715 Member Posts: 183

    Nancy, I hope you are feeling better. Please let us know how you are doing.

    Cindy

  • Grannax2
    Grannax2 Member Posts: 2,387

    Wallaby. Thanks for the info. My doc still hast called. I don't know what the hold up is. I'm ready to get this show on the road.

    So it's working for you. I didn't know it caused HF too. Bummer. But no hair loss? I'm hoping she'll choose this for me. My tumor markers don't correlate with my disease.

    How often are infusion? I have mets in right lung, mediastinal node and lots in my liver. I don't have it in bone so I won't be getting zometa. I am slightly anemic now and I know that might get worse.

    I'm 71. So I know age will factor in. I'm also diabetic. Thanks for information.💞

  • msmann63
    msmann63 Member Posts: 54

    My friends, this will probably be a long post and I will try to give you as much info from my appointment with my doc as I can remember. I'm still digesting it all and my chemo brain does not function quickly.

    1. The PET Scan showed no new activity or progression. The areas from last PET in January are still there but it seems they are not growing fast.

    2. My tumor marker has made another jump (up to 159) which confused me. As I said above, the cancer is probably still growing, but not at a rate that would show on the PET, but enough to show on the tumor marker. So, it seems the Doxil is really not working.

    3. There is a brand new one-of-a-kind drug (pill form) called Piqray which has just been released by the FDA. It looks to be very promising after the clinical trials. The patient has to have a biopsy submitted and test positive for a mutation called PIK3CA. I tested positive...the only one of his patients to do so. So, if we can work out some kind of funding to help with the copay (these chemo pills are usually wickedly expensive) since Medicare patients are not eligible for the standard copay assistance from these drug companies. Hopefully, there will be some sort of grant $ available since it's a new drug. We'll have to see. If it's not doable, then I will return to infusion which Medicare does cover. Go figure that one out.

    So, that's where we are for now. I will stay on this chemo until we have an answer.

    I thank you for your prayers and ask that you continue them through this next leg of this journey. 🙏🏻🙏🏻💕💕💓 I am certainly praying for you!!!

    BTW: Have I told y'all lately how awesome my doc is!! 💕

  • wallaby715
    wallaby715 Member Posts: 183

    Grannax2: Just an FYI, my tumor markers dropped from 88 to 71 on my last blood draw on the 16th. So, yes, the Doxil is working for me. My hair is thinning but not breaking off like A/C. Now that my hemoglobin is back up, I'm feeling a LOT better. We'll see how that plays out as my next infusion is this Wednesday.

    My infusions are once a month but I don't know if there's a different schedule or not. I just turned 70 on the 15th. so age is a factor for me too. I do have it in my bones and liver/lung but they seem to be under control, so far!

    Cindy

  • wallaby715
    wallaby715 Member Posts: 183

    Bridget: What were your tumor markers before they went to 159? I seem to be very sensitive to changes in the cancer vs. the tumor markers. I forget where your cancer is, i.e. bones, liver, lungs, etc. Sometimes you can get "tumor flare" from some medications which doesn't necessarily mean that the cancer is growing. I see that Piqray is used in conjunction with Fulvestrant.

    It really sucks that because you are on Medicare you cannot get assistance with copays from the manufacturer. Pfizer paid for mine the whole time I was on Ibrance. I also have assistance now for the Doxil.

    I hope that if this medication change is necessary that it is successful for you. I will be praying for you for a good treatment path.

    Cindy

  • Nancylm
    Nancylm Member Posts: 83
    Hi ladies, it’s been so quiet here (me too). I check often hoping to hear that everyone is doing okay. I’ve had tests, s cans, and a new treatment plan. Off Doxil, now on Taxol. Had first low dose infusion yesterday and I’m feeling no obvious SE’s yet. 2 weeks on then 1 week off schedule. I was sick most of July with bronchitis. I’m thinking of you and hope for updates soon. 😪🙏🙏🙏
  • wallaby715
    wallaby715 Member Posts: 183

    Hi Nancy! So good to hear from you. I have been checking here also and it has been quiet. Glad to hear you are doing better and are on a new treatment plan. I'm hoping you tolerate it well. I am doing better since I received the blood transfusion. I went in this Wednesday for a blood draw so they could check my hemoglobin levels. It was 9.9 so they gave me the Aranesp injection. That was a no-sweat injection, even though it was in the abdomen...I didn't even feel it! My chemo will be on the 21st. I did better with my last chemo tx because my hemo was back up. Hardly any side effects and only a little from the Zometa that lasted only a day. All in all, I'm much better! Hope to hear from the other girls soon! :)

  • Nancylm
    Nancylm Member Posts: 83
    Hi Cindy Glad you are doing so well. I’ve never had a transfusion. I am 9.9 at this time and heard them say I wasn’t low enough. I’ve had a miserable allergy attack...coughing, sneezing, runny nose . I cough so hard that I gag. However after saline and Afrin nose sprays it seems to be breaking up. Today is my second treatment of taxol. My first wasn’t bad at all. Fatigue and sore aching muscles. This time I will get a higher dose,but I hope it won’t have bigger SEs
    I don’t know where our members went, but we can wait for them to return or new members to join. Hope you and your furry one have a great day. 🐶🦊🐈


  • wallaby715
    wallaby715 Member Posts: 183

    Hi Nancy,

    I hope your treatment today went well. My MO called yesterday to tell me that my scan looked good. I see her on Tuesday, the 20th. I also am having allergy issues. It's either my eyes running or my nose, and mostly both at the same time! Some sneezing but sneezing has never been a big part of my allergy symptoms.

    Yes, I hope our other members are doing well...maybe just busy.

    Take care!

  • Nancylm
    Nancylm Member Posts: 83
    Cindy, I have been having allergy issues as well. My problem was a tickle throat that wouldn’t stop and the runniest nose ever. Every time I coughed I had a major flood from my nose. Then I developed a sore throat, and I decided to go to urgent care for a quick check up. Dr.put me on an antibiotic, but it’s unknown if the symptoms are from chemo or simply alllergies. My 2nd treatment is over and now a week off. I feel good today and I’m grateful for that. Are you taking Claritin ? My MO recommended it, but it didn’t seem to do much at all. My son gave me Alkaseltzer cold plus and that dried up my nose right away. Best news on your good scan! ❤️ To hear that. 🙏🙏🙏