Back from 911 and ER!

About a week ago I woke up in the middle of the night and could hardly get my breath. Had been short of breath for the past several weeks, but this was different. Had to call 911.

Long story short, dx with congestive heart failure (scary words). Meds got me back on the right track. Had been short of breath just recently, but also had loading dose of Herceptin (which I had been wanting for a long time) and Navelbine on a Tuesday. Then had regular dose of both 10 days after that (switched to Fridays). Then had the baaaad thing happen.

Although my muga before chemo was in normal range, it was lower than before my first chemo regimen a year ago (just dx with recurrence a few weeks ago).

So I guess the Herceptin may have made the heart thing much worse??!! Had all kinds of fluid in the right lung membranes.

Anyone had anything similar? I know Herceptin can cause heart difficulties.

Thanx.

Sue

Sue,
I had the same problem that you had my alos was the Herceptin. I went on heart meds and my Muga has come back up to normal. But i was scared and so tired that I could hardly make it through a work day. But so much better now!

Go well,
Marsha

That is scary. I was taken off herceptin a couple months ago because my echo showed a decrease in my ejection factor (which measures the flow of blood through the right ventrical)
This was due to the herceptin. I was short of breath and weak. I am having another echo tomorrow and hopefully my EF will be up some- I hate to give up the herceptin or have to go on some kind of heart meds on top of everything else. Good luck and God bless. Patty D

Very scary, to say the least. I got home from hospital Tuesday and am planning to go back to work a week from Monday. Main problem now is mets to the bone, specifically the hip area. They told me to use a cane to relieve "the load". It hurts only when I walk.

How long ago was your incident?

Sue

I wanted Herceptin after my original bc dx and treatments (finished rads in August) because of all the good things I heard about it. One of the radiologists said "be careful what you wish for" after telling me about the potential heart problems! Wow.

My problem is my left ventricle. I have a follow-up echo in 5 weeks. I had CT scans and a echo right after I was admitted (within a day).

Sue

Snap, I did in October, been short of breath for ages, just talking on the phone I was gasping for air, let alone walk to the letter box. I went by ambulance to ER, I felt like a fraud because I could still walk. I had been experience a taste in my mouth similar to when you get dunked by waves in the surf, apparently that was the salty fluid build up in my lungs. I was breathing loud in my sleep and copped heaps for that, and wouldn't you know it I was actually near death. I had to take fluid tablets in the ER and when I was admitted to the ward over night I peeeeed out 5 kilos of fluid, I went to bed weighing 75Ks and woke up weighing 69Ks, also picture this, I had a sleeping tablet as well so I was stumbling to the toilet like a drunk. They were going to remove the fluid and drain it by untra sound, but decided to try the pills first. I was in hospital for 7 days, and at one stage the specialist listened to my heart, and as he went around clockwise, and his partner in crime wrote it down, it was heart failure...whatever, heart failure whatever....for 4 valves and I think we have 6, no one bothered to tell my I was so ill, and I wasn't even in ICU. My sister rang and they told her it was serious and I was very ill, I know I felt ill, I just felt like dieing. This all came about after I was treated the week before for thyroid in same hospital and same docs, they think they did it, but when I did my research on the computer I came up with Cardiac Tamponage, I had all the symptoms, underlying tumour near thyroid, only just been diagnosed and treated with radiation, I had been trying to tell them since last June I had a lump, but it was put down to the Thyroid and now got round to treatiang it, I also had an overlapping connective tissue order (similar to SLE)mouth and face ulcers caused by depleted immmune system. I know my thyroid is OK now because I finger nails are back to normal and the blood test proves it. Now I have to have an MRI on my heart on 17Fen along with Eco and Bloods, now the best part it had absolutely nothing to do with the Herceptin or the Navelbine. I had stopped the Navelbine a couple of weeks before because I was supposed to go to hospit for reconstruction not heart failure and when I was discharged I had my usual triple dose of Herceptin, because of the hospital visits I had missed 5 weeks under the assumption 5-6weeks it stays in the body, I also went into hospital with the knowledge my CA-15.3 marker was 17 so I wasn't worried when the CT scan of my lung said Mets, alarm bells went off as to who was to treat me, and as I found out it was only fluid not mets, like I didn't know any better .Taking Aromasin with the Herceptin and tumour marker, when I got out of hospital was 7!!!!never been that low in my life, or should I say since 1998. Well of course they finally decided to do biopsy with Ultra sound as CT scan still came up as NED and still does even since I started radiaiton treatment and wait for it the tumour marker is now 10 and all bloods normal, except it looks like I might get GOUT woopee, how much more torture are we to endure, I figure the alians are using us so when the docs can cure us we pass the test to meet them. There was heaps more to my drama but it would read like a novel. My GP today said she can hear the first murmour but only just the other, when I went to hospital my heart was working like a washing machine, and the week before when I told the girls giving me my Hercpetin that my pulse was going from 45 to 120 and no even rythem they just said oh well, we will se you in 3 weeks, go figure that. I am convinced if we don't keep a vigil on this and do our own diagnosing, they will miss the boat.

Hugs Lyn

I don't know if anyone is aware of this but radiation can cause congestive heart failure. I have known of 2 people who died this way and not from the cancer. The only way the family knew this is a family member was an R.N. and knew what to ask for questions. Radiation can be very dangerous when given near the heart. Hope I am not scaring anyone just wanted to share this. Hugs to you all, Sandy

Hi there, I did respond earlier today but I don't know what happened to my posting, it may have been edited. Any way short version, in October I couldn't breathe when I laid down, I was gasping for air talking on the phone and just doing anything was an effort. I finally admitted defeat and called an ambulance, but told them to hold off with the sirens. I seemed I had 5 kilo of fluid around my lung, this was expelled with the aid of fluid tablets, I went to bed weighing 75kilo and woke up weighing 69. I was in hospital for 7 days with heart failure. All tests revealed that the Herceptin nor the Navelbine had caused the damage so when I left hospital I had my triple dose of Herceptin, it was approx 5weeks since the last dose and I was on Aromasin at the time and my marker was 7. The damage to the heart caused by the Herceptin is to the Ventricls and mine were fine. My specialist believed the heart failure was caused by the Thyroid medicine. We are all different, I am having a MRI on the heart on the 17 February so I will know more then.

Hugs Lyn

Hi Sue,

I had 5 doses of Herceptin, 4 of which were along with Taxotere. My Ejection Fraction to begin with was 55%. After taking Herceptin for those 5 times, it went down to 32%!!! I was feeling no symptoms of this and was not unusually tired or weak. Took another one several weeks later and it came back at 43%. They thought there was something wrong with the mugas so they ordered an echo and it came back 45-50%. But, by this time I was already disqualified for my clinical trial and was taken off.

I was very dissappointed about it, but knew I had to quit because of the heart problems. Doc said that 5 doses may have been enough to do the trick. I am Stage 2b and was suppose to be on it for one year. Only had 5 months. So....we'll see.

So, yes it can cause heart problems. Here I thought I was the only one with the problem with Herceptin!

Good Luck to you and hope you are feeling well now.

xoxo,
Shannon

You are not alone (or me) from what I have read. My muga pre any chemo ('02)was 68, pre this chemo and Herceptin, it was 54, still normal. The echo, after the heart situation was 40! I have a follow-up in a month. I am so disappointed, too, about not getting Herceptin now. But...