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Weekly Doxorubicin

GG27
GG27 Member Posts: 1,308

There doesn't seem to be a lot of information on SE's of this treatment, only the monthly infusions. Perhaps this is used more in Canada? But if anyone has any personal insights into this treatment, i would love to hear. I start it today. My body seems to really dislike any new treatment and I get really bad SE's Any tips & tricks would be appreciated. thanks!

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Comments

  • moderators
    moderators Posts: 7,886

    Hi GG,

    This page from the main Breastcancer.org site on Doxil (Doxorubicin) lists possible side effects with links to pages that offer tips to help manage them. Hopefully this will help you know what to expect or prepare for!

    Good luck with your treatment!

    --The Mods

  • GG27
    GG27 Member Posts: 1,308

    Thanks Mods for the link. that info is generally for the 28 days cycle. seems like the once a week with no breaks may be a canadian protocol. had it yesterday, few SE's so far. hoping for some real life experiences.

  • pajim
    pajim Member Posts: 930

    Hi GG27! Raising my hand here. I'm on my second week. The first week kicked my butt. MO didn't want to do a second week but we agreed to extra support. I'm so not used to anything kicking my butt so everyone is unhappy (MO, DH, office folks, me)

    Day 1-3 were easy. The steroids cover everything.

    Day 4 was OK,

    Day 5 I got the sleepies. I assume this is my version of "chemo fatigue". I don't get physically weighty or tired, I just fell asleep at the drop of the hat. And considering that I spent the day playing bridge at the tournament, oy. As soon as someone started to think I fell asleep.

    Day 6 sleepies were gone. But instead I felt like someone had knocked my legs out from under me. I couldn't move. I'm rehabbing hip surgeries so that's a problem. Most likely I would have done better to do more exercise but moving was really tough. Achy creaky everywhere (I'm in my 50s)

    Day 7 was OK

    Day 8 I woke up planning to drive myself to work but the room was spinning a bit. Being the good safe adult that I am I got a ride to work then a wheelchair push to the cancer center. Where I was asleep when my MO walked into the exam room. He was not happy.

    They gave me a liter of fluids along with 15 mg/m2 instead of 20mg/m2. They helped a lot. I'm scheduled for more fluids on Monday. In addition MO gave me a prescription for decadron to keep away the sleepies. I took one today. Dry mouth much better than narcolepsy.

    That's a long exigesis for my advice. Drink. A lot. (if you can) Ask for steroids at home and don't feel bad about taking them.

    On Wednesday we measure TMs. If they're headed down I get a week off then another hit. If they aren't we switch [back] to alpelisib.

    Usually I have fewer SEs than anyone. I hope for your sake it's reversed this time. Hang in there!

  • GG27
    GG27 Member Posts: 1,308

    Thanks for your reply Pajim!

    Are you taking dexamethasone every day? I was given it in premeds along with zofran and asked about it, they said not to bother...hmmm, interesting. we'll see how this week shapes up. i forgot to ask what the dose was, i will ask on friday.

    I feel "normal" today, but will be on the lookout for the things you mentioned. I have cataract surgery next Thursday, day before my second push, so it will be interesting.

    hope you do better on alpelisib than i did, holy moley that was a terrible one for me. lasted all of 10 days even with dose reductions. did great on palbo, 30 cycles before problems and then blew thru halavan as well, though my MO thinks that her replacement should have dose reduced me & given it more than 3 cycles. she thinks we might circle back to that if doxil doesn't do the trick.

    thanks! cheers GG

  • pajim
    pajim Member Posts: 930

    The first week I only had the 12mg of dexamethasone they gave me as premed. They also gave Zofran and aprepitant premed. I have Zofran at home (I have everything at home) but only needed to take one. Monday I think.

    This time because I was getting the sleepies and generally looked awful my MO gave me dex to take if I needed it. 4mg pills. I took one this morning so we could go to the museum and I plan to take one tomorrow because of the bridge tournament. My MO and I have been together a long time. In fact, I had to report in today on how I was doing because he worries. He knows I won't take any drug unless I need it.

    With no offense to those who are too sick to move (been there), I try not to sit on my butt all day. First it's bad for my hips and second it's bad for my attitude. I do a lot better if I'm distracted with something.

    Oh, and did I mention the shortness of breath? Comes with the inability to move very well. Sigh.

    I had trouble moving with alpelisib as well, but it wasn't anywhere near as bad as this. I ended up with the full full body rash. They hadn't had much experience with the drug and my MO is protective so he pulled me immediately. Now that he has many other patients and 2 more months experience he's willing to go again.

    oooh, cataract surgery. Good luck! Let me know how it goes. I have a big one (now, new) in my left eye. So far they're correcting with new glasses. It's due to all the steroids from chemo.

    Happy Saturday!

  • Kayla250
    Kayla250 Member Posts: 125

    Good Evening GG27 and pajim.

    For my first 2 doses cycle 1, so day 1 and day 8 put me in the ER; I had the inability to keep anything down including my pain breakthrough. I too was given zofran cant remember about Dex though. They dropped dose from 20 to 10mg/m2. and gave me a brand new antinausea, Akynzeo. And everything has been tolerable since. Although I think the dose in 1/2 might be to my detriment.

    GG - Having to face cataract surgery must be such another headache to deal with. I wish you a speedy recovery.

    Pajim - wishing you good luck at the tournament tomorrow. Have great time!

    Sleep well,

    Maureen

  • GG27
    GG27 Member Posts: 1,308

    good evening to you both.

    pajim, interesting to see that we have both been at this since 2008, it's a long haul sometimes, not so much when things are going well, but at times... good luck at the bridge tournament, I used to play with my parents but mainly as a fill in for the "dummy", it's too much strain on my brain to consider these days. I stay very active in my garden and house renovations, that may be partly why i'm still doing ok as i stay as active as i can. i had that horrid body rash on the alpelisib trial as well as vomiting & diarrhea, awful, awful, awful. not allowed to take anything to combat those SE's while on a trial, now they mitigate everything.

    Maureen, thank you for finding my thread, i misled you a bit as to where it was. posting late at night isn't the best. like you i worry about dose reductions, fingers crossed that this one works for you, all of us. i hope you're feeling a bit better, you've had such a rough time of it lately.

    the cataract surgery will be a good thing to get out of the way. it's a SE of a SE of a drug they had me on, i had to have laser retinal repairs a year ago & that causes a cataract.

    good night, sleep well, cheers, gg

  • Kayla250
    Kayla250 Member Posts: 125

    good evening,

    Tomorrow will be Day 15 of Cycle 3, and I'm hoping that Doxil is going to kick in. But sometimes I lose hope. My mets are liver and I have had progression since diagnosis but this past month we seem to be chasing the pain with medication which isn't a good sign. My liver is so visibly enlarged, protruding out just below the ribs, because of the tumours it's hard to hold on to hope. Nonethe less tomorrow might be the week it kicks in. Sorry for being glum sometimes I just need to get it out.

    I hope you're both doing well tonight. Looks like it's only the 3 of us are on weekly. Which is quite amazing.

    Good night to you,Maureen

  • GG27
    GG27 Member Posts: 1,308

    I'm sorry you're feeling a bit down Maureen. please don't lose hope, you're only on cycle 3, which my MO tells me is about where the drugs start to make a difference. do you get TM's every 3 or 4 weeks? or maybe they're not accurate for you? anyway, I am here for you.

    I have my cataract surgery in the morning, which I am happy it's finally happening though it will be a very long day as I have to stay in town for the followup late in the afternoon then back on the ferry the next morning for chemo.. it's quite a week. But then a week off, yay!!

    pajim, hope you're doing ok.

    good night, cheers GG

  • Kayla250
    Kayla250 Member Posts: 125

    good afternoon

    GG27 - it's amazes me that even though we are not geographically far apart I think our MOs treat us and our cancer completely different. Since the beginning of treatment I have only been on 3 cycles of each chemo then CT,progression, change protocol and repeat. TMs have never been used as a factor during treatment.

    Thank you so much for listening to my “poor me" yesterday. I hope your surgery went well today and your recovery is quick and easy. You're probably not going to read this for a couple of days, but look forward to your update when you can.

    Pajim - hope all is well and side effectsare minimal.

    Maureen

  • GG27
    GG27 Member Posts: 1,308

    Hello all,

    I'm going to update this thread from time to time as I think this protocol may be very do-able for some who like me have a very hard time on some lines.

    I'm having minimal SE's, some nausea for a couple of days, easily treated with anti-emetics, taste is off for 4 days, then back again, but able to eat. I have chemo every Friday and Monday seems to be my low blood count day as I feel a bit lethargic and SOB if i run up & down the stairs.

    Today i have my first CT scan being on this protocol, fingers crossed that it is working on my liver tumours.

    GG27


  • GG27
    GG27 Member Posts: 1,308

    Got my results today from the second CT scan & the liver tumours are stable. I am at the lifetime limit on this drug so they gave me a MUGA scan and heart is good so they will start me on dexrazoxane before my Doxorubicin injection to protect my heart. Hair was just starting to come in & I understand that it could fall out again. Dang.

    It's a pretty easy drug to tolerate, so I'm surprised it doesn't seem to be used more.

  • 50sgirl
    50sgirl Member Posts: 2,071

    Hi. It is good too see your post.

    Iam currently on cycle 4 of Ariamycin (doxorubicin). Each cycle is 3 weeks on and 1 week off. The only SE I have experienced is hair thinning. My hair was still short and thin from Taxol, so I quickly developed bald spots. I am given dexamethasone, Aloxi, and olanzapine as premeds. I also take dexamethasone and olanzapine with breakfast for the two days after chemo. My MO is planning to begin dexrazoxane with cycle 6 since I will reach the lifetime max for Ariamycin. I am happy that the drug is available since it will allow me to continue this treatment as long as it is working.

    I am feeling much better since I started this treatment. My tumor marker has dropped from over 3800 to 614. My liver blood test results have returned to normal. I had a CT scan on Tuesday, and I expect to see good results.Enjoy your day.

    Hugs and prayers from, Lynne


  • GG27
    GG27 Member Posts: 1,308

    Hi Lynne!

    Fantastic to "see" you here.

    It is my understanding that weekly doxorubicin (non-pegylated liposomal doxorubicin) is a different beast to the 4 week cycle but i'm not completely sure what the difference is. And I don't know why my MO wanted me on this one except that i have such a hard time on new drugs that maybe she thought it would be easier on my body that the whole push?

    I am reading that the dexrazoxane can also cause extra nausea & vomiting so I will be watching for that as well. Good luck on your scan results. I am so happy that you are doing so much better than just a short time ago. It reminds me that when things seem at their worst, do not give up. I've been there a couple of times & now on this treatment I am back to my old self.

    cheers, dee

  • 50sgirl
    50sgirl Member Posts: 2,071

    Hi Dee, I am taking the strong stuff, not the same as the other Doxil that most people seem to be taking. According to my MO Adriamycin can be given monthly, every two weeks, or weekly with a one week break. He suggested the three weeks on/one week off for me because he thought it would cause fewer SEs. So far, so good. As you know, I was in bad shape, and my MO said that this is the strongest chemo left for me.

    How are you tolerating dexrazoxane? Is it given as an injection? Infusion? Have you lost your hair? I developed bald spots from Adriamycin, so I am already wearing scarves or a wig. I had very little hair to begin with because it was growing very slowly after I lost it all from Taxol.

    I hope you are doing well. I think of you often. I miss the old gang from the Bone Mets thread.

  • GG27
    GG27 Member Posts: 1,308

    Hi Lynne,

    I'm not really noticing anything different with dexrazoxane other than it adds an extra ½ hour onto my infusion. It's a 15 minute drip with a 15 minute break and then my doxorubicin is a push over 2 mins, then they give me a saline drip. Other than the SE of the dexamethasone, i don't really have too many SE's. Hot feet on infusion night and some nausea that is easily taken care of. Fingers crossed that it works for a long time.

    I was just getting my hair back and it's starting to shed a little bit. I had a dream last night that I had to wear my wigs again. arrggh!

    I'm so glad to see you here again, it was very worrisome that you were in such bad shape there for a while. If we can just keep ahead of things while the smart people get new things out on the market for us. take care, cheers, dee

  • sandibeach57
    sandibeach57 Member Posts: 1,387

    50sgirl

    Thinking of you.

  • 50sgirl
    50sgirl Member Posts: 2,071

    Thank you, SandiBeach.

    I have one more week of cycle 5, then I have a appointment for another Echocardiogram. As long as that goes well, I will start having dexrazoxane with cycle 6. I am still amazed that I feel so good. Things really turned around for me. My CA27.29 continues to drop. This month it was down to 347 from the high of over 3800 back in March. For the first time in two years, I am officially not anemic. My hemoglobin has climbed from 7.2 to 11.5, an indication that the cancer in my bone marrow has improved. I have more energy than I have had for a long time. I have gained back much of the 35 pounds I lost earlier this year. I just hope this treatment continues to work for a long time.

    Dee, I hope you continue to do well. It seems that there are very few people on these boards who are having this treatment.Enjoy your summer.

    Hugs and prayers from, Lynne

  • GG27
    GG27 Member Posts: 1,308

    Hey Lynne, so good to see you here!

    Good news about no anemia & that you are feeling so good.

    I am doing well on this treatment other than being a bit tired, but that could be because I'm moving while having weekly chemo. My ANC dropped so I was on 75% but my labs yesterday indicate that I'll be back to 100% today. My TM's having been slowly heading down, I get a scan again in August, so fingers crossed. I know my MO had said if this didn't work we would try some kind of radiation but I forgot to write down what it was.

    Take care Lynne, fingers crossed for continued improvement.

    cheers, dee

  • 50sgirl
    50sgirl Member Posts: 2,071

    My WBC and ANC were too low yesterday (ANC was 0.600), so I did not have treatment. I wasn’t happy because no treatment means nothing attacking the cancer cells. Next week is my scheduled week off. I will have scans on Monday. Hopefully, the results will show that this treatment is working.

    I hope you are doing well.

    Hugs and prayers from, Lynne


  • divinemrsm
    divinemrsm Member Posts: 5,996

    Popping in here to say hi to 50sgirl!

    image,

  • GG27
    GG27 Member Posts: 1,308

    Nice to see Lynne & Divine!

    I've completed 9 cycles, 27 straight weeks of chemo. MO told me that most only are able to do 6 cycles, 18 weeks. My CT on Thursday was stable so my MO has enthusiastically ok'd a break for me. She will be checking my TM's every month & doing a CT every 12 weeks. We are doing this so that I don't have progression on this line & have it to go back to in the future. Fingers crossed that I get a few months break. I've been on treatment for 11 ½ years with only breaks for wash out periods for trials.

  • 50sgirl
    50sgirl Member Posts: 2,071

    Dee, A break? That sounds fantastic. I can’t wait to hear how you feel without all the chemicals surging through your body. Do you know how long the break will be or is it dependent on what develops? I hope you remain stable for a very long time. Please keep us updated.

    Hugs and prayers from, Lynne


  • 50sgirl
    50sgirl Member Posts: 2,071

    I think that I am the only one left on this treatment, but I will post an update, just in case it is helpful to someone who reads this in the future. I was supposed to begin cycle 8 last week, but my neutrophils (ANC) were down to 600, so I had to skip treatment. I had the same issue during the last week of cycle 6. My MO decided that it was time for a frequency change, so beginning this week, I will follow a schedule of one week on/one week off. I am happy that I can continue on Adriamycin since it has been effective without any negative impact on my QOL. My CA 27.29 continues to drop. It was 3800+ when I began this treatment in early May. It has dropped every month, and this month it is down to 196. My energy level and appetite continue to be good. I hope Adriamycin continues to work against this disease.

    Hugs and prayers from, Lynne


  • 50sgirl
    50sgirl Member Posts: 2,071

    Here I am again, posting to myself, I think. I am now on schedule of every other week. I am due for repeat of Echocardiogram to confirm that the medication to prevent heart problems is doing it’s job since I have exceeded recommended lifetime max for Adriamycin. MO has also planned for CT scans within the next month. I still feel great.

    Lynne

  • jobur
    jobur Member Posts: 493

    Hi Lynne! You may be the only one left on this tx (for now), but I'll bet I'm not the only one who clicks on this thread when they see your name pop up! Thank you for the updates, you are not only writing to yourself, it makes me happy to know you are still doing well. I keep wondering how the quilts for the grands are coming along. Christmas is just around the corner now. Hope the Echo shows your good heart is still strong and the CT shows stable or better. Absolutely love hearing that you are still feeling great! Love and hugs to you.

  • moth
    moth Member Posts: 3,293

    Hi Lynne, happy to hear from you & get your update. Glad you're feeling well! I hope the administration change allows your neutrophils to recover better. Need those suckers coming into cold and flu season!

  • GG27
    GG27 Member Posts: 1,308

    Hey Lynne!

    I'm still here, just taking a break from it right now. Happy to see your name pop up. DH & I decided to go for a small trip since I'm feeling better. It was nice to get away but was surprised to see that the place we stay at was full & had to change our dates to get in.

    My CT is scheduled for Nov 4th. TM's tomorrow. Last time they went up 20 pts which scared me a bit but MO & GPO didn't seem too worried.

    Take care Lynne, keep posting. cheers, dee

  • sandibeach57
    sandibeach57 Member Posts: 1,387

    50sgirl..I click on this thread, too when I see your name! So..you are not posting to yourself..just updating friends.

  • GG27
    GG27 Member Posts: 1,308

    Hi all!

    So my break was indeed probably short lived. My TM's have risen again, 60 points over the last 6 weeks. GPO doesn't want to put me back on doxil until he looks at another CT, so that is booked for Nov 4th, he will call me on the 5th with results & if it's not stable then it's chemo again on the 6th.

    I knew the break wouldn't be forever but i was hoping to get a few months out of it. It will be the fourth time i've lost my hair. not a big deal in the whole scheme of things but so annoying as it was just finally coming back in.

    hope you're still feeling great Lynne.

    cheers, dee