New to Doxil… any one have heart issues? - SHARE Metastatic ...

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New to Doxil… any one have heart issues?

Bettybuckets profile image
37 Replies

Hi Ladies- maybe you can help? In just two days, I am due for my 3rd infusion of Doxil… which started out hard but last month was fine. The problem now is that my Apple Watch keeps alarming… well by that I mean it alarms and notifies me each time my heart rate dips below 40 beats per min for 10 solid minutes. It is sometimes just 32 BPM… normal for me is usually 55-60 bpm. This is Mostly at night when I am sleeping but also during my the day . It just happened again-Even just before I wrote this! Since I started on Doxil it has been doing this quite a lot… in the last month 350 times!

My smart medical writer husband has been reading lots of the studies with this class of drug and this seems to happen more often to those of us who had doxirubicin years ago like me. There is a suggested life time dose limitation and I am not near it…and the newer formulation with thr lipid layer called Doxil is purported to be less cardiotoxic than the older Dox but I am worried.

I spoke with my onc and he asked to go get EKG… that showed issues so they sent me to get a 24 hr holter monitor.. this will give a readout of all the Heart rates etc within 24 hrs BUT it won’t be read in time for my next dose of Doxil!

My dilemma is that Doxil appears to be working… or at least makes my tummy and bones etc feel better… I hate to blow past this therapy and onto something less well tolerated.. I feel like by just sounding the alarm and getting this checked out means that they will Discontinue treatment and push me onto 5th line rather than figure out if this is real or imagined by me. And You know how hard getting IVchemo appts are to set up… even so do you think I should ask to postpone doxil until we know if this may be starting to cause CHF( congestive heart failure).

I could just take the Doxil IV and then if I get worse that will prove it is cardiotxic for me… and then stop it and switch for next month… or just ask to postpone until cardiologist can read the 24 hr holter monitor. I hate to do anything that makes me feel like a Diva… and put people out. Problem is I don’t want to be left with damaged heart and shortness of breath as I love my swimming and biking.

My question is what would you do?

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Bettybuckets
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37 Replies
MaryCos profile image
MaryCos

I would ask my oncologist what their recommendation is. But, I think if it were ME? I'd probably put off the chemo infusion until someone could assure me it is safe. My hope is that they can give you something else to counter this (med-wise), instead of you potentially needing to move on to another line--perhaps prematurely. xo

daniellebrooks13 profile image
daniellebrooks13

hi Betty, my thought would be to wait with the next infusion if the oncologist thinks that would be ok!

13plus profile image
13plus

Hi! I always love seeing your pics :) Well that’s quite a low HR! I believe, as frustrating as it is, I’d be asking to hold off the next infusion until you get the feedback from the cardiologist.

The downside of forging ahead with infusion is not knowing, if the Doxil is the issue, how badly it could affect your heart with another dose. Is it worth that risk?

1711JPD profile image
1711JPD

I’d postpone the infusion. Best wishes.

bikebabe profile image
bikebabe

me too - I’d go for postponing or ask for an urgent cardio oncology referral - maybe phone consult. There’ll be a work around for cardiac side effects eg pacemaker/ implantable ICD but it’s balancing the risk of permanent cardio toxicity offset by pacemaker versus different onco treatment and alas I think you need that expert advice. There’s two cardio onco units in uk (Bart’s and Liverpool) - not sure where they are for you but web search might throw them up although your onco should be checking. Some research papers might throw up names/institutions.

Bettybuckets profile image
Bettybuckets in reply tobikebabe

Very good suggestions. Thank you.

jersey-jazz profile image
jersey-jazz in reply toBettybuckets

We all agree that you should postpone and speak to the cardiologist. Good luck, my friend!

Bettybuckets profile image
Bettybuckets in reply tojersey-jazz

Yes it seems obvious now. Still waiting to hear result of heart monitor to see if I can restart next week or so… or start looking for next line of therapy if only 2 months on a drug that made all my cancer symptoms go away.

jersey-jazz profile image
jersey-jazz in reply toBettybuckets

It is my opinion that one thing that this MBC is doing is keeping us on our mental toes. We have to be one step ahead of our doctors so as to point out what is happening in our bodies. This is a very rewarding job as it often makes a huge difference to our health. -----------------Love to one of my heroes on this tremendously valuable forum.!

jersey-jazz profile image
jersey-jazz in reply toBettybuckets

p.s. What are you doing on the computer at 2am? Don't you know that you must get your beauty sleep?

Bettybuckets profile image
Bettybuckets in reply tojersey-jazz

Still waiting on heart monitor test … so chemo get cancelled until more into…. Meanwhile I am having a rough time because I usually sleep with ambien but with my heart rate of 32 BPM at night, I’m too afraid to lower my heart rate further with ambien… so I am not sleeping as well as usual.

jersey-jazz profile image
jersey-jazz in reply toBettybuckets

Understood! Against all advice, I fall asleep with "Forensic Files" on low. It is my choice because it is a report with no histrionics to startle me awake. Somehow, the TV gets turned off during the night by the good fairy.------XXX OOO

Totheriver profile image
Totheriver

I have CHF. They are pretty sure I got it from having chemo when I was first diagnosed from the drug called the “red devil”. After the initial attack I took lasik regularly maybe for a few months and then as needed. I was never short of breath and very seldom take lazik anymore and it doesn’t stop me from doing anything. Theresa.

jersey-jazz profile image
jersey-jazz in reply toTotheriver

Dear Theresa-----------Excuse my ignorance but what is CHF? I suppose that the C stands for cancer but it would not be the first thing today that I am wrong about.

Totheriver profile image
Totheriver in reply tojersey-jazz

CHF stands for congestive heart failure. Don’t feel bad I am wrong about a lot of things too.💕

jersey-jazz profile image
jersey-jazz in reply toTotheriver

Thank you for enlightening me. I too had a healthy heart before being on chemo including the red devil. My heart is no longer healthy. At this point, I am not taking any of the heart drugs recommended to me because dying from a heart disease or attack seems nicer than dying from cancer. I may change my mind. I cannot answer your question because I too am in that situation. I will send a prayer for you. XXX OOO

Totheriver profile image
Totheriver in reply tojersey-jazz

And I will pray for you💕🙏

Healthplus1 profile image
Healthplus1

Consult your doctor but do what is right for you and do not even think about if you are putting someone out. The decisions we all make are literally life and death.

Gibby21 profile image
Gibby21

just to state the obvious……you can’t live without a heart so if it were me, I would hold off until I got some answers. I can’t imagine that one week later for the infusion would make a difference.

Tolife_18 profile image
Tolife_18

Hi, glad that social is working for you. However, it has known adverse event of cardiotoxicity.

Not sure if you had a baseline cardio consult, but I’d advise that you do now. Would definitely leave it to a cardiologist to assess your condition.

Wishing you all the best!

kellylinkane profile image
kellylinkane

Hi I learned you have lobular i also have lobular with 98% Er positive and 90% PR postive seems lobular highly hormonal not sure you need some hormonal therapy, i seems respond with falsadex ok kind of stable though i also took melatonin at night i increased to 40mg a night, i also read article melatonin will protect the heart from toxic from doxil, you can google it, i now on falsadex and truqap for about 3 months the teuqap cause my skin itching i mean i have weird sensation my skin i asked my oncologist know is somewhat akin toxic from medication i upgrade my melatonin from 20mg to 40mg a night i take time release 10mg tablets founds i feels better melatonin also protect skin😀

Bettybuckets profile image
Bettybuckets in reply tokellylinkane

Oh thank you I don’t know about melatonin and will google to learn more!

Bettybuckets profile image
Bettybuckets in reply toBettybuckets

I read some of the stuff on melatonin and sounds good!

kellylinkane profile image
kellylinkane

i also took berberine lipisomal cap daily also will protect the heart it going to heart meridiam used in ancient China for heart and stomach protection though, the usa now only have prescription Dexrazoxane for heart protection but will supressed bone marrow though. I been use melatonin and berberine i am als plant based diet i feels better less side effect from whenever medication they gave me.

HelenWi profile image
HelenWi

Hi Beth,

I thought I replied yesterday but must not have hit "reply" button. Darn. You have likely made your decision by know. I tend to agree with the others that it might be better to wait to get cardio report and I'd also get the opinion of cardiologist + oncologist.

But the main thing I wanted to say is you're not a Diva just because you want to do the best thing for your health. Every person deserves to have as much info as possible and have some control over their treatment. There is a great book that was recommended here recently called Radical Remission (there is a newer version called Radical Hope.) One of the factors that was common to all the people who experienced radical remission was empowering themselves - taking an active vs passive role in their health.

Take care <3

Helen

LDR1 profile image
LDR1 in reply toHelenWi

I totally agree. Advocating for yourself, doing research, asking your doctors challenging questions, and requesting what you think is best for YOU is essential self-care and self-advocacy. Who cares if you’re a Diva, own it - or think of it instead as being a Warrior Goddess!

Busy doctors don’t always connect the dots, read the latest research, or remember the details of your case history. And they don’t have the perspective that you have: as others say you only have one heart and you need to protect it as well as possible. Delaying the next Doxil dose til you get a full readout from the cardiologist seems very prudent.

Bettybuckets profile image
Bettybuckets in reply toLDR1

Thank you!

Bettybuckets profile image
Bettybuckets in reply toHelenWi

thanks Helen- oncologist and I decided to wait for heart test so I got to skip my treatment and go off and play hookie with my pal! That was a huge treat

13plus profile image
13plus

Wondering if you got any advice from your docs yet?

Bettybuckets profile image
Bettybuckets in reply to13plus

Thank for asking! I got the EKG which showed PVCs… some minor heart problem so that led to a 24 hr holter heart monitor.. now waiting for the result of that to be read. My oncologist didn’t want to give the chemo without more info. Hoping to reschedule the chemo for next week if my heart is ok…Meanwhile my HR is now 32-34 BPM if I am sleeping or even just resting during the day. That seems scary low. I gave up my ambien and am not sleeping very well… but I was afraid ambien would lower it further.

Toby sitting on me
Aprilfoolz1 profile image
Aprilfoolz1 in reply toBettybuckets

Sending you healing thoughts and prayers for some good sleep without your bpm going too low. Hope you have good info soon to remedy this.

HelenWi profile image
HelenWi in reply toBettybuckets

Beth, Re sleeping: When I wake early and start thinking too much and can’t get back to sleep , I take 1/2 of a .25 mg Xanax. Maybe it’s placebo, because it’s such a small dose, but I always get back to sleep and that doesn’t make me drowsy at all. If I can’t fall asleep to begin with, I’ll take a whole .25 but that is not usually my problem. To those who say Xanax can be addictive, I don’t take it on consecutive days…well maybe sometimes two days. I’ve been using it this carefully for over a decade and it really makes such a difference to get a good sleep as we all know. So, my 2 cents ❤️

Bettybuckets profile image
Bettybuckets in reply toHelenWi

Well that sounds good! I think I used that with early stage BCa… thanks for reminding me!

13plus profile image
13plus

So us here were right on the money by advising you to hold off! 😊 I didn't realize I was asking before they even had a chance to even read the heart data. Keep us posted. I hope there is a "simple" remedy. That photo of you resting is how I've been a LOT lately. I feel like I'm constantly tired recently 😭 I feel like I do just about 2 -3 hrs work a day, it's ridiculous. I'm seeing my oncologist Thursday so we will be able to share notes lol.

And Toby is absolutely adorable!

Bettybuckets profile image
Bettybuckets

thank you! He swims all around our lake and then is happy to hang out with me.. there is a great drug for cancer fatigue… called Provigil… 12 hr h may help a lot.alf life so you take in morning and feel better but still can sleep at night. Was studies in cancer pts but first used for narcolepsy. Ask your dr about it. It may help!

Cowgirl1951 profile image
Cowgirl1951

I hope this gets sorted out soon and with positive results.

kellylinkane profile image
kellylinkane

your welcome, hope get well soon.

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