All About Doxil
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Dodgersgirl- roof! I am so sorry you are having this reaction. I thought that they used lower doses in metastatic disease treatment. I really hope that you have a much better reaction to the second dose. will they be lowering your dose?
First doses of drugs are always harder for me and then settle down, but, this sounds extreme!
thinking of you
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nkb— Doctor appointment is in a few days.
Do you have a theory as to whether it’s the chemo or the steroid that is kicking my arse?
Still very miserable
Thanks for responding!
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I don't think it is the steroids- my experience with them is can't sleep, rosy cheeks- some people get hyper or manic or depressed though. One cycle of AC I did originally was very bad- the next one was not. I hope that you can get plenty of fluids in, maybe add ginger ale, soups etc
I did get into rough shape my first enhertu with diarrhea after using miralax for constipation. this last cycle I did Colace, high fiber foods and smooth move tea which is Senna and stayed away from the diarrhea.
I wonder about your electrolytes? the weak legs is worrisome- I am interested to hear what your MO says about how you are doing-
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nkb— I am concerned about electrolytes, too, since AFib developed this summer while on Xeloda. With A Fib my heart rate might drop down to 25-31
Blood sugar has never reacted as much to steroids either. Plan on dosage changes to my meds due to BS numbers.
I hope you have kicked the big D, too. Such a horrible side effect
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Dodgersgirl- well I hope they can figure it out and that you are already doing better.
That is a scary low heart rate! mine has gone as low as 41 in the night- I stopped wearing the Apple Watch at night so I ddn't have to know- I think it was an effect of the Xeloda - I think I will wear it again and see what it shows. Are you on blood thinners for your A Fib?
I didn't have any D- last cycle - used colace and smooth move tea only and did fine. second infusion yesterday and TMs went down 15%! Feel fine with the Zofran. Hope yours do also
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I am on Eliquis and metoprolol for a Fib.
I learned on Friday that the really low heart rate can be an a-Fib gift
But it can also be a result from blood clots from CoVid vaccines
Having an echocardiogram in 2 weeks followed by first cardiologist appointment in De
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Metoprolol is a beta blocker so it slows down your heart rate as well.
Im getting echos or MUGA scans every 3 months for the enhertu. hard on ejection fraction for some folks. apparently a shortage of the nuclear tracer for the MUGA- so we will see.
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nkb- doc adjusted dosage of my Metoprolol
Several years ago I was on Lisinopril to lower blood pressure but heart rate remained high so I asked if I should try Metoprolol instead to get that help lowering heart rate. Dr agreed.
But since taking Xeloda this summer and the new appearance of A-Fib, I have episodes where heart rate drops to 25-33 for hours.
So dosage cut. Monitoring BP several times a day along with heart rate.
And I read about Doxil. Said it was some kind of antibiotic... hmmmm Doxycycline is also an antibiotic. Are they “kissing cousins” ??? I am allergic to tetracyclines Am I allergic to Doxil? It’s being looked into
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Dodgersgirl- I did hear of a bunch of folks having to decrease their BP meds when on Xeloda. it really lowered my heart rate especially at rest. I am going to start wearing my Apple Watch at night again and see if there is a difference. I already have super low BP- I did faint once when I jumped out of bed with a leg cramp.
I just read that Doxil is a "natural" antibiotic- how weird - do you have oncology pharmDs where you are? I am interested in what you find out re this. There are a lot of cross reactive allergies- hopefully they will figure it out- what is the plan for you?
I hope you are having a few good weeks before the next infusion if you stick with Doxil.
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nkb— yes, my cancer center and hospital have oncologist related pharmacists. I do plan on digging into this question
My MO team rolled their eyes when I asked about heart toxicity and Xeloda.
This morning my heart rate was 28. Several blocks of time yesterday my heart rate would drop to upper 20s and fluctuate between 28-33.
Lots to figure out, for sure
I am feeling way more like a living person this week over the week of chemo. Hope to enjoy the weekend
Thanks for the info you shared. That was informative
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Love living personhood!
have a lovely feeling great week
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cycle 2 tomorrow
MO has adjusted pre-meds to see if side effects can be lessened. Sure hope so.
Oh, and hoping Doxil is doing more than creating side effects!
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Will be thinking of you tomorrow and hope the pre- meds make the difference.
I am having infusion #4 tomorrow and finding out my TMs - hopefully I am responding to this treatment.
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Nkb—thanks!
Hoping for smooth sailing for your #4 infusion. Good luck on TM results.
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HOW did your infusion go?
Mine was smooth sailing and got out of there in 2.5 hours! (2 hours for cold capping). TMs down by 11%. and feel fine so far.
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nkb— great news! So pleased to read your Infusion and TM results.
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update: Cycle 2 this week. MO added another anti-nausea med to my pre-meds. What an improvement. Cycle 1 was the worst of any IV chemo I have had in the last 5 years. Cycle 2 with different pre-meds changed my side effects. Meds keeping nausea away. Steroids kept me up the night of Infusion, as expected. No real issues. So much better this week than a month ago.
Hoping Doxil will kick some cancer cells.
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Wonderful!!
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nkb— actually think I will be able to join the family for Thanksgiving!
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Wonderful news! Very healing and distracting for me- ginger stashed around just in case.
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nkb- good idea. I’ll bring my ea bands and ginger tea.
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had Cycle 3 Doxil this week. Again with the changed pre-meds, the IV chemo is so much more tolerable than the 1st round was.
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Dodgersgirl- so good to hear. I am glad you tweaked it enough to manage. the first month os any drug seems to be the worst for me.
How are your TMs? any inkling that it is working?
How was your trip?
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nkb, my MO won’t capture TMs. So frustrating as my original MO did them regularly.
I have scans right after the holidays to see if Doxil is working but if I were to guess today, I would not be optimistic. Having more and more pain in my hip and thigh. Maybe more palliative rads in my future? I try to not look for trouble but pain is definitely increasing. Started taking Tylenol every 6 hours this morning.
Fingers crossed I am wrong and that the pain is muscular not mets.
How are you doing?
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Dodgersgirl- I am sorry about the increased pain- hopefully it is working for you -with one nidus of unruly cells that you can zap.
My Tms have been going down very slowly which is unusual with a new treatment for me- my scan showed a general trend of improvement, mostly stable. My MO is very happy and called it wonderful/stable - my pain is much better- I couldn't tell if my pain was cancer or muscle or injuries- this is all really slow which may be typical of enhertu in the bone only- I don't feel like it will work for a long time, but who knows. My hair is thinning a lot even with the cold caps, but, is also growing back in- so??
Have a lovely holiday-
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progression while on Doxil so changing treatments. Don’t have species yet.
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Sorry it didn't work Dodgersgirl- it is so disappointing, I hope the next drug is a good one.
How is your pain ?
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nkb— Thanks for the well wishes.
Reference pain, still painful in left hip, groin, thigh, knee areas. Will read the results of my last scans (from December) to see if anything was noted. I have mentioned the pain to MO recently. Wondering if it from XGEVA shots and not bone mets?
How are you doing
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Hi Dodgersgirl,
I had all sorts of pain and seemed to injure myself or noticed injuries that I had no idea how. after my first enhertu all the pain and weird injuries went away. I had a modest improved response on PET although TMs have been all over the place, the fact that the pain went away made me think it is working who knows.
I just got out of the hospital- I was having low grade fevers and at RN's advice and rules of chemo and fever went into ER--> had septicemia!! turns out chemo makes the gut leaky or more permeable and can infect blood- quite common. I am not sure If I will put this on the enhertu site or not. anyway CT, heart Echo (since bacteria can attach to your heart valves) and insertion of a center line (not as invasive as PICC) I am doing home IV antibiotics for 10 days. I don't know if I will continue enhertu while on antibiotics or it will be postponed- waiting to hear from MO. Lost 5 # due to poor appetite- but, I think I can turn that around with frequent snacks.
What is your next step?
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nkb— sending you well wishes as you journey thru enhertu.
Thanks for sharing your experiences. Will definitely keep in mind if any of my treatments cause issues. Very useful info!
I had blood work today to see if my numbers are ok to move to Docetaxel which is scheduled for next week. Kinda concerned as I can’t find a lot on here about the treatment. But still, hoping this treatment slows down this dis
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