Heart problems caused by BC treatment - info please

Hi Ladies

I finished my treatment (lumpectomy, chemo, rads, herceptin) in summer 08. I now take Letrozole. In April 09 I started with Paraxymol Atrial Fibrilation and was prescribed Bisoprolol and aspirin. The Beta-Blocker does not seem to be controlling the AF episodes and today my cardiologist has prescribed Flecainide. I am very scared to take this after reading the side effects. We are due to go on holiday to USA next week (I haven’t even got any insurance yet because I was waiting for the outcome of this appointment) and I am worried about starting a new drug just before we go away. I don’t want to end up in a casualty department in USA with a reaction! My cardiologist wants me to phone him on Friday to report any reaction to it. Surely, though, any side effects would take longer to manifest themselves. Is there anyone who is taking or has taken this drug and can give me their experience of it? My husband doesn’t want me to take it and this has made me more panicky. I had an Echo today and was told my heart was ok to take the drug and it was safe to go on holiday. Can someone give me some advice please before tomorrow morning?

Thanks
Jibby x

Hi Jibby,
I’m sorry to hear you are having problems just as you are due to go on holiday. I developed heart problems after my treatment (mx, chemo, rads, now letrozole), but mine was heart failure so I am on Bisoprolol and Ramipril (+ water tablets, vitamins, statins etc etc.), so I have no knowledge of Flecainide.
Have you thought about contacting the British Heart Foundation? - bhf.org.uk. They have lots of info on their website and they have a helpline with cardiac nurses and heart health advisors on hand to help answer any questions or concerns you have about heart health and heart conditions. The phone no. is 0300 330 3311. Lines are open 9am-6pm Monday-Friday (calls charged at local rate).
Hopefully they will be able to give you some info so that you can have a great holiday - without having to visit any hospitals!
Piglet :0)

Hi Jibby
I too developed PAF after chemo and had was initially prescribed betablockers - which didn’t work. I am now on Flecainide and have been for 12-18 months - no problems whatsoever! No obvious side effects and they definitely keep those pesky heart rhythms in check! My dose had to be upped after an initial period but, again, no problems. I’ve also just remembered that I was on Femara at the time and this is the ONLY A I to have AF listed as a side effect. My onc didn’t believe me so she had to ask the head pharmacist at the hospital and it is true - I did a lot of investigation about this after all! I moved to Arimidex afterwards and this may also be helping to control them but I’m not sure. Also it may be worth checking out your Potassium levels at some point as low levels are a contributing factor to AF. We went to USA last year and had no problems with insurance - even though I also have bone mets. Good luck, hope Flec works and enjoy that holiday.
Nicky x

May I ask what chemo you had? I developed ankle swelling and a slight cough after having FEC-T which i finished in march this year. The Docs dont think its heart failure as the doses of the drugs are too low for that. However, I have requested a scan and I’m having it tomorrow. I’m a nurse and I work with heart faiure nurses; they advised me to ask for scan.

Julia xx

Hi Julia
I had 6 x FEC but don’t have any heart failure/problems caused by the chemo as I’ve been checked out since. The AF bit (as I’m sure you will know) is due to misfiring of the electrical impulses that control the heartbeat (or so I was told!), overall my heart is healthy. Hope nothing shows up on the scan to cause you any further problems and they can sort you out.
Nicky x

Hi Julia,
I had 6 EC, during which I developed a cough which wouldn’t go away. I did have 1 lot of antibiotics, but the cough still lingered and all docs said it would get better after chemo finished. After chemo I was wheezing at night time as well - my onc said it was thyroid lumps and 2 GPs said it was probably asthma! I tried to regain some fitness, but got more and more breathless as time went on. GP did some more blood tests - 9 months after finishing my chemo + RADS and then phoned me to tell me to go to A+E and don’t drive, as I may be having a heart attack. I ended up staying in hospital twice (approx. 5 days each time) and was treated for pneumonia (so I finally lost the cough) and they did more tests which showed I had actually had a heart attack sometime on chemo and now had developed heart failure. After looking on the web, it does seem that drug companies recommend tests on the heart before, during and after chemos like epirubicin, but I did not have any tests done - possibly nothing could have been changed, but I can’t help wondering if tests would have shown that the epi was affecting my heart and some of the damage to my heart could have been prevented. So if you are offered any tests, I would have them done - hopefully you will be absolutely fine, but if there is even a slight problem at least they can get it sorted or keep an eye on it.
Hope all goes well.
Piglet :0)

Thank you ladies for your replies. After much thought and even more googling I phoned my cardiologist’s secretary this morning and voiced my concerns and am now waiting for her or the cardiologist to phone back. I know that I am probably panicking needlessly but even the cardiologist said that the side effects could be unpleasant and I really don’t want to spoil this long-awaited holiday for everyone by worrying about things. I think that once you are on the tablet merry-go-round of taking meds to counter the effects of other meds to counter the effects of somthing else you lose faith.

Piglet - I’m going to phone the Atrial Fibrilation Association and perhaps join their forum because this heart condition is starting to get to me both mentally and physically and I need to ‘talk’ to others in a similar situation. I’m starting to regret having booked the holiday. I HATE taking tablets and am sure I cause my doctors much aggrevation by my reluctance to just ‘pop a pill’ without question. Also it is interesting what you say about Epi because I had that too. Take care. X

Nicky - Your experience of Flecainide is reassuring. I have to take 50mg twice a day. What was your starting dose? Did you have to take your first dose in hospital to monitor any reactions? I am sorry to hear that you have bone mets. Did these develope before or after your diagnosis of PAF? Also, which insurance company did you have for your holiday to USA? I’ve had a quote from Insure Pink for £308! X

Julia - I had EC and Taxotere. I had very few problems on chemo. When I got to Herceptin number 13 (!) I had a few days of heart flutters and was quite scared. I had a MUGA scan which was 59% and deemed ok. I had no more heart problems until April 09 when it just went into AF and I went to A&E for treatment. Also I had an Echo scan yesterday which was ok. Sometimes I think that the combination of Epi, Taxotere then rads, Herceptin and now Letrozole have contributed to the condition but no medic will admit it. What treatment are you having now? Hope everything goes well with your scan.X

Libby,

I had Paroxysmal Atrial Fibrillation for many years. It was not diagnosed for 20 years but I finally got to A&E whilst I was having an attack. I was prescribed Flecainide but because I said that I was concerned about the side effects it was suggested that I take 150ml when an attack started. This worked for me although it did take about 2 hours before the attack stopped. I have to say that when I went to New Zealand I did take the flec every day as I was afraid of having an attack on the plane. The side effects for me were not too bad. I did end up with tinnitus though. 2 years ago I decided to get referred to an expert on catheter ablation in the hope of stopping the AF. I could have had it done on the NHS but did not want to wait so paid for private treatment. It worked very quickly even though I was told it might takes 6 months to settle. How lucky was that because 2 months later I was diagnosed with BC and would have had problems with the anaesthetic if the AF had started during the op.

Have you tried columbusdirect or insurethis for travel insurance?

E

Hi

I’m now just on Tamoxifen and clonidine for night sweats.

Hi Jibby
To be honest I can’t remember! I definitely wasn’t in hospital at the time so I think I just got on with it and was to report back if they didn’t improve. I started on 50mg twice a day but have since gone up to 100mg twice a day - this was quite soon after starting Flec so I didn’t get worse over a period of time, I just needed the dosage sorted. I have also read about having a big dose when an AF episode starts but this isn’t something my cardiologist mentioned - just something I read. However he did say that ablation or cauterising can be done if tablets don’t work - as with emmbee. As I don’t have any side effects that I am aware of I am sticking to the tablets for now. I already had my secondary dx at this stage - the chemo was for that - so it’s not linked! And the company I used was Miaonline - very reasonable, even with secondaries but I’ve heard they have become more expensive (for secondaries) this year. There is a thread on the secondaries forum about travel insurance as we find it alot more difficult and more expensive to get than ladies with primaries so any that are mentioned on there as being good should also offer a reasonable deal for anyone getting over primaries.
Nicky x

I have spoken to my cardiologist and he now agrees that it is probably better to delay starting Flec until I get back from holiday. I feel so relieved! He told me to take 300mg aspirin before the flight and was ok about everything.

Emmbee & Nicky - you are very knowledgeable about PAF. It’s good to know of other peoples experiences - I don’t feel quite so alone knowing how other people cope with it. I’m just hoping that I don’t get an AF episode whilst flying because I find that stress is one of the things that brings it on. Hopefully lots of reading material and my Nintendo DS will keep me calm!

Take care everyone
Love
JibbyX

Hi Jibby,

Hope you have a lovely holiday with no attacks of the AF. Have you considered taking tablets with you to take if you do unfortunately have an attack? 150mg. Do you have the time to check this with your consultant? I think you would be more relaxed if you knew there was something you could do, just in case.

Did you get good insurance?

If you want to PM me I will try to help you from my experience of AF.

E

Hi all

I had my MUGA scan today but they wouldn’t tell me anything. I dont see my Consultant til Sept, but I hope that if there’s anything amiss, I’ll hear from them sooner.

Julia xx

Hi Julia
They would never disclose the results of MUGA scans on the day to me either. I used to think that “no news is good news”. However, I’m quite impatient at times and I would phone up my chemo department or my consultant’s secretary after a few days and ask. Some people will tell you and others are more of a ‘jobs worth’. I had elaborate guessing games - “Well…I know you can’t tell me exactly what the result is but is it higher than 50%?” or whatever. I’m sure if there is a problem you will be contacted sooner rather than later.

Jibby X

Hi Jibby
I hope you have either gone off on your hols already or are about to go and have got all your medication sorted out. I was on Flec last year going to USA and was fine. The DS works a treat for destressing you :wink: I used to take mine in to the hospital when I had chemo and it passed many a long hour. As emmbee has also said you can PM me about my experiences of AF but I also don’t mind having them on the open forum as it may be useful for anyone else having similar problems. I did a lot (well, I say a lot but it probably wasn’t that much!) research on the web and came up with the info I have and did surprise my onc and the pharmacist with my info about Femara. Have a great trip and I hope you don’t have any AF episodes whilst abroad.
Nicky x