Weekly Doxorubicin
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Dee, I am sorry that you couldn’t have a longer break. Have you felt stronger and better during the time you have been off chemo? I have CT scans scheduled for Nov. 2. I hope we both see good results from our scans. I had my echocardiogram today.
Hi Jobur, Moth, and Sandy. I am touched that you stopped by to say hello. I have been following your posts, but I have become more of a lurker than a contributor of late. I hope you are all doing okay in this crazy, crazy world we are in.Hugs and prayers from, Lynne
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Lynne,
Yes, I am feeling almost "normal" for the past few weeks, but it took about 3 weeks where I felt worse actually. I was beginning to wonder if I was going through withdrawal. My hair is growing back, so that will go again and I was able to quit zopeclone every night. I will be very annoyed if I have to get back on the sleeping pill nightly wagon again. It was tough getting off them & I am proud I was able to do it. I am going to try not to take them again but I know that having to take steroids I will have a couple of sleepless nights every week. Not sure which is better for me, sleeping with meds or no sleep?
Fingers crossed for good results from our scans. take care friend, cheers, dee
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Hi, I'm happy to find this thread. I'm starting the weekly treatment this Tuesday. Hoping this one will work. My mo says that they shouldn't be to many side effects I had it already first round in 2010 with no issues at that time.
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Hi Vilma,
I haven't had many SE's at all, it's the heart protectant dexrazoxane that caused my hair loss for a 4th time! There is a lifetime limit on doxil & I passed it quite a while ago so they give you dexra just before the infusion. I get insomnia on night 1 & 2 from the dexamethazone otherwise it's pretty tolerable.
Is your MO Dr Simmons? Just curious as this treatment isn't prescribed often & she is my MO. Let us know how you do. Good luck on Tuesday.
cheers, dee
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hi Dee,
Thank you! that's encouraging. I have lost my hair already, have to update my info, just been through two chemos that didnt work. My dr is Dr Caroline Lohrish.
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Vilma,
I blew threw 2 chemos as well. I deleted a bunch of lines from my bio because the length of it was becoming ridiculous. I haven't met Dr Lohrish, but i'm sure she's great. Kind thoughts for tomorrow. cheers, dee
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Vilma, I hope your treatment went smoothly today. I haven’t had any SEs with the exception of hair loss. I didn’t have much hair to lose since it was still growing back from Taxol. I do have hair growing in now although it is thin and still quite short. I have had low neutrophil counts for the last two cycles and have changed schedule to one week on/one week off. Like Dee, I have exceeded the lifetime limit of doxil and am given dexra before the infusion. I hope you don’t have any issues with this treatment. Let us know how you are doing.
Hugs and prayers from, lynne
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Hi Dee and 50sgirl, thank you for the good wishes, treatment went well and happy is such a fast infusion. So far no side effects. I hope this treatment works long enough to get to the lifetime limit
. 5am here in Vancouver . I do like Dr Lohrish she has been my mo since first diagnosis, hope Dr Simmons is great as well0 -
Vilma, I hope that you are still tolerating treatment well. check in when you have time.
Dee, Did you have your scans? I hope that you receive good results.The results of the scans I had on Monday were posted to the patient portal yesterday. Unfortunately, there seems to be progression in my liver. I will meet with my MO on Monday and will talk about a plan going forward. I still feel great, and my blood tests have been good, so I was surprised to read the findings of the scans.
I hope you are both doing well. Things are a bit crazy post-election here in the U.S. Things need to be settled soon.
Of top of that, the COVID numbers are getting higher throughout the country. My DH and I are staying home as much as possible.It's a good thing we like each other.
Hugs and prayers from, Lynne
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sorry to hear of possible progression Lynne, i am there as well. my largest tumour went from 2.3 x 2cm to 3.5 x 2 cm during my very short treatment break. I restart doxorubicin again tomorrow and I guess will end up losing my hair for a 4th freakin time. better than the alternative tho!
i hear you about feeling great too, i don't understand how i have perfect liver function numbers, feel great yet my TM's keep rising & the scan tells the tale. i talk to my MO in 12 days, i am going to ask again about radiation for the largest tumour. I have read a lot of good results from having just one done & the rest seem to shrink as well.
Vilma, hope you are tolerating treatment ok, and yes, check in when you have a chance.
take care all, cheers, dee
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normally I just lurk here in case I get doxil sometime in future but
dee, just FYI I'm looking at a trial to get SABR to my lung met (which was noted as fully necrotic & shrinking from March - August & then suddenly woke up and started growing, boooo). As I understand it, it's hard/impossible to get SABR here for mets progression. I will meet the RO on Nov 10 to learn more about it. Don't know if coming to Surrey or Vancouver would be an option for you? Was told that if I was in the SABR arm, it would 4-5 appts, every 2nd day. Anyway, it could be something you could ask your MO https://www.canadiancancertrials.ca/Trial/Default....
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thanks for the info Moth. My MO is in Vancouver, i have traveled to BCCA Vancouver many many times, so that's not a problem for me. And I have friends there who are in my "safe six" so accomodations also are not a problem.
My MO has indicated previously that i could have radiation so i'm not sure if she is just willing to nag til they take her patients or what the deal is, but she has never misled me before. The trial looks interesting, i will definitely ask her on the 17th.
good luck to you and thank you so much for breaking your "lurkerage" to let me know! cheers, dee
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my understanding the radiation they normally offer is called 'palliative radiation' not SABR. That's the "standard of care" arm in the trial. So yes, radiation but not the right kind, kwim? I will definitely be asking if I can get SABR here out of the trial because if I'm randomized to the wrong arm, I'll be exploring other options. I really want the SABR!
good luck!
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Lynne and Dee, thank you for thinking of me. So sorry to hear about both having some progression, hopefully there will be an effective plan next. Last two weeks I have been totally exhausted but I'm not sure what to relate it to. I spent almost 7 days with daily treatments, 5 radiation to my lower back, having a port inserted , radiologist appointments, chemo... so not sure if exhaustion is due to chemo, radiation, BCCA visits , all together... In addition to that I was for the last 3 weeks in a very high dose of dexamethasone due to the nerve that was pressured in my back. Dexamethasone in such a high dose for extended time has lots of side effects. To my relief I finally started to reduce it since Monday and starting to feel a bit better. Next chemo on Rememberance day. Now that most are other things will be over I'll be able to see how the chemo only, affects me. In all no additional issues other than the extreme fatigue, weakness and some small mouth sores.
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Geez Vilma, I'm exhausted just reading about what you've been through in the past few weeks. They give me one single dose of dex before chemo & it throws my whole body out of whack so I can't imagine how you're doing it. Once you've recovered from rads & all the appts, I am hopeful that you will find the dox tolerable. I will tell you from my experience with mouth sores, that icing my mouth before, during & after the push alleviates them completely. I wasn't diligent about the icing for one cycle & had a terrible time getting rid of the sores. Next time I went back on the routine of icing & no problem.
My progression was very much expected, my MO just wanted me to have a treatment break because after 12 years of being on treatment, I needed one. I am going to be exploring the trial that Moth pointed out to me. It sounds very interesting & may be the one that she was talking about earlier this year.
take care, cheers, dee
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Thank you Dee for the suggestion, I love chewing on ice, I'll do it on my next chemo
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I am staying on this treatment in spite of the progression reported in the scan reports. My MO looked at the scans and feels that the progression is minimal. Since my TMs continue to decrease, I stillto feel so much better than I did in February, and my liver numbers are well within the normal range, he will not change treatment and will monitor closely. He asked if I would be comfortable with that, and I gave him an enthusiastic yes. My remaining options are limited, and I don’t want to move to something new until I have to. QOL is important.
I hope you are doing well.
Hugs and prayers from, Lynne
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Hi all!
Lynne, glad to see you're staying the course even with small progression. My MO says that small increases can even be due to a different radiologist seeing & measuring a bit differently on the scan. She says it's 50% science & 50% art to reading them.
Vilma, how's the mouth sores? did the ice help?
I'm back on the band wagon i'm afraid but the nausea seems to be worse this time around, but the insomnia is better? But i did wean myself off zopiclone a few weeks ago & finding my sleep is better. I started on them when i was on hormonal drugs because the insomnia was bad & after 6 years just couldn't stop, but i did it finally & feel so much better for it. My feet burn the first night, I may have to order some of those ice slippers. I will get my TM's done again in 2 weeks, we'll see what they are. Phone convo with MO on Tuesday when I will really push for rads to these liver mets.
take care all!! cheers, dee
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hi Dee, the ice helped a lot! This week was the first time since I started that I'm able to eat fruits and even a little spice. There still a bit sensitivity from some small sores I had from before but nothing new. My mouth feels so much better. I suppose the nurses will have to get used to the noisy ice chewing during my chemos
. Sorry you are having more nausea, hope it goes away soon0 -
hi all!
Update this week. I've had 2, only 2 pushes & already my ANC is tanked. No chemo this week. I am going to ask about neupogen shots, they aren't covered here unless you are in the hospital, so it would be out of pocket for me, but do-able at $155 per shot. I'm not sure if there can be a dose reduction instead, tho that scares me a bit too, or whether 2 weeks on/1 week off is a protocol or not.
Vilma, so glad to hear that the ice thing seems to be working for you, i know if I don't do it, I have crazy long lasting mouth sores.
Lynne, hope you're doing ok.
moth, sorry to read that you're not on the right arm of the trial. I spoke to my MO this week about rads, nope, not eligible at all. I was particularly disappointed about that, so I can imagine your feeling about it as well.
take care all, cheers, dee
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Dee, I am sorry to hear that your ANC dropped. Mine dropped two cycles in a row, so I am now on a schedule of one week on, one week off. I am hoping things continue to go well even on this reduced schedule. After dropping significantly every month since March, my TMs rose 10% this month. It could be nothing, but we will continue to monitor it since it has always been a reliable indicator of upcoming progression in the past. Are you feeling okay? It is unfortunate that radiation is not an option for you.
Vilma, how are you doing? Are you having any SEs other than mouth sores? Is the icing still helping to prevent those sores?
You are both in my thoughts.
Hugs and prayers from, Lynne
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hi, it seems that I'm saying goodbye to this group. Doxil has not been working and my liver numbers and tm's continue rising. I'm starting to get really scared since it's the 5th treatment in a rowe that doesn't work. I speak with my mo tomorrow to see what are her plans. Good luck to everybody!
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hi all!
My TM's jumped 60 points this week, I hope it's not a foreshadowing of things to come, fingers crossed it's tumour die off. Other than being a bit concerned, I feel fine, working like crazy on the house.
Lynne, I hope for both of us that rising TM's are a blip. Are you feeling ok?
Vilma, I'm so sorry to hear that you are not responding to this treatment. Please let us know what treatment your MO thinks you should go to next. I blew through about 4 lines earlier this year or so after having such success with Ibrance & letrozole for 30 cycles. Will you have a biopsy? I asked last week about one but my MO said she didn't think i needed one yet, but if this treatment fails, then I think I may push her on it again.
I am waiting to hear if the hereditary board will retest me as it's been 10 years & they test for alot more now & there was some new info added to my chart because I discovered that my paternal aunt died of BC. My family never talks about any of this stuff. I only found out through her obit that she even had cancer.
To try & keep my numbers from tanking, my chemo RN suggested that I drink a guinness the night before my labs, which I will do (I love guinness) and I ate liver this week to boost my iron & protein count. I never see it in the grocery store & this week I saw it at the meat counter & wondered it it was a sign??
take care all. cheers, dee
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I'll be joining this group next week. The nurse told me that side effects are mouth sores, nausea and diarrhea. Is there anything I should do to minimize the side effects? I will be getting Doxil once in three weeks, so I am hoping that it is tolerable.
I was on Piqray/Letrozole which failed to keep me stable. Yesterday's PET scan showed considerable progression in liver mets and bone mets.
Any advice about how to deal with or minimize side effects of this drug will be greatly appreciated! I had Adriamycin in 2008 as my first line of treatment and it was very hard on me, since it was dose-dense.
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S3K5, it looks like you & I have been on some of the same treatments (except paclitaxel, my MO mentioned it might be next for me). I was on Piqray on a trial & it was a horrible drug for me.
I have found that icing my mouth starting when I first walk into the chemo room until I'm home, 1/2 hour after treatment is done has kept the mouth sores away. I tried not doing it for as long once & suffered all week. I use magic mouthwash, the swish & spit one if I get the slightest little tingle. I am having a harder time with the nausea this time around, I take metoclopramide which is given prior to chemo & i take it for as long as i need it in the days following. Sometimes I take only one for light nausea. I haven't found that i get diarrhea on doxorubicin, the opposite actually. I was worried about that for the first couple of cycles. But I am on a lower dose, getting it weekly instead of every 3 weeks, maybe this is the difference.
Otherwise i haven't found it to be too bad, I have insomnia on night 1 & 2, from the steroids I think, and i don't feel well if I overdo things, i think that's low blood counts to blame.
I hope it helps you, I've been on it since February with a 2 month break. Just went back on & my counts took a huge dive. Let us know how you get on with it.
cheers, dee
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Dee, thank you for your advice. Sorry to hear about your nausea. Hopefully you'll find something that will help you with this side effect.
For nausea during my other chemo regimens, I was given these medications which definitely helped:
- Aprepitant (Emend®) (for first three days after Adriamycin chemo)
- Proclorperazine (Compazine®) (for night time use)
- Ondansetron (Zofran®) (to be taken every 6-8 hrs)
I don't know if any of the above medicines are an option for you. These are all older drugs, so they should be available everywhere.
I'll definitely carry some ice chips in a thermos from home and also ask for anti-nausea medicine prescription from the doctor. I get nausea even with drugs that do not have this as a side effect!
I am planning to ice my hands and feet too, since the nurse mentioned about skin rash/redness. I don't know if this is necessary but I would rather prevent it than deal with it later.
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hi all!
Bit of a rough couple of weeks. Labs weren't good enough for chemo 4 weeks ago, but came back up enough for 75% for the last 3 weeks, tho I had to insist on getting it yesterday.
I've had terrible back pain which i thought was liver related but turns out to be a cracked rib. Unrelated to this, nausea all week along with UT issues, turns out to be a kidney infection, not a UTI. GPO was worried enough to consider not doing chemo but I convinced him to do it. I pinky promised to go to emerg if I had the slightest fever or worsening symptoms. I started abx yesterday and feel so much better already.
Muga scan on Tuesday, chemo on Thursday this week & next.
Hope everyone is doing well. cheers, dee
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Dee, You have really had a rough time lately. I hope that he antibiotics have wiped out that kidney infection. I know kidney infections can be tough. Hopefully, your Muga scan will produce good results and your treatments will be uneventful but effective.
My MO is sending me to Dana Farber in Boston to see if they have any exciting innovative treatments to recommend for me. I think I have become the problem patient since we have seen some progression as well as increasing TMs of late. I am still continuing treatment, and I am happy about that.
I hope you enjoy this holiday season.
Hugs and prayers from, Lynne
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Hi Lynne,
I know what you mean about being the problem patient, my MO jokingly calls me her "problem child" which I embrace.
Todays Muga showed some damage from the doxil so GPO is having a convo with MO about what to do with me. ABX aren't really helping with the kidney infection, the pain part of it anyway. He is going to order a bone scan & CT scan for next week I think. He doesn't really want me to have chemo on Thursday but he will defer to the decision of my MO. I get TM's on Thursday but won't have results until Monday because of the holidays.
I am so happy that they are sending you to Dana Farber, fresh eyes are always good for us. I hope for new treatments for us and something that works for longer than a few weeks or months.
I long for the days of being on Ibrance/Femera, 30 cycles on the trial with few SE's....
Best wishes to you & your family for a lovely Christmas. We are under health orders to have no one over who does not live in your house, so it's DH & me.... poor husband! LOL!
cheers, dee
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update.
a CT scan was ordered yesterday for today. GPO found me in the chemo lounge to give me the news that my CT scan is stable. What a good Christmas gift. Bone scan will be soon, hopefully that will show what's going on with massive rib pain, whether it's a fracture or just the met needing radiation.
So continuing on doxil @ 75% because ANC is only at 1.4 but I'll take it!
happy holidays to all!
cheers, dee
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