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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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
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?
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.
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.
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.!
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.
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
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.
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.
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.
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😀
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.
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.
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.
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
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.
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 ❤️
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.
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!
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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. 
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