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Diagnosed with cardiomyopathy

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Hi Everyone,

Saw GP who has really chased things up and managed to speak to the cardiologist who's been liaising with Onc. He says am having a really unusual reaction to cancer treatment and is unclear what is happening. Has order more tests and will see him beg of Jan. Finally. I did give my GP Mr L for referral as I said I was loosing faith with the local system &  what was happening but after 6 months of this carry on she wants me seen asap. xx  

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi Penny

I think they would have to interview me again as I was asked just to talk about my experience and the reporter just asked the odd question here and there and the editing just put the two things together in the right order! I know the person I met from the media team at the Brompton did want some more coverage on the work they do so hopefully there will be more in the future, even if I'm not involved. Anything I do learn though I will update on here as its always useful to know or have extra information to give to your own GPs or cardiologists.

Nicky x

Penny47
Member

Re: Diagnosed with cardiomyopathy

Nicky do you reckon they will use the rest of the interview on one of the radio 4 medical programmes?

Possibly the one with Mark Porter?

 

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Aww thanks Penny -useful tips!! Must admit have been trying to go at the same pace up the hills but find I have to slow down -will try it the other way next time. Interesting what you said abut the two days off from walking. I do allow myself one day when I don't walk  -rest day!!

 

My son who does lots of running made a good observation -saying that I'm expecting my body to walk at the same pace every day. He says they do interval training alternate days. That is for one minute they run (walk) as fast as they can checking how far they managed. Rest walk back to the beginning and then repeat it several times. On those days he does not demand a long run of himself but a short gentle run (walk for us). Am wondering if this is a way of increasing our walking tolerance or is it a barking mad idea? 

 

Hope everyone had a lovely weekend. xxx 

 

Penny47
Member

Re: Diagnosed with cardiomyopathy

Waveylocks- thank you so much for posting the link to the seville article.  Not sure what it all means but I am sure there will be more studies published before the diagnostic process absorbs the implications.

 

I think the answer for a large percentage of us will be the Oncotype DX test which shows whether chemo will work or not.  When I started out with chemo it had just had a lot of publicity but you had to pay for it privately- I gather some NHS trusts are now running it.  Perhaps in the future they will be able to tell whether it will affect our hearts?

 

Meanwhile I am really looking forward to seeing my oncologist on 17 December.  I have one of my lists of questions.  They don't make much difference to the information I manage to extract from professionals but they make me feel better!

 

My cold is better and I was amused to find yesterday that all the rest indoors for two days had enabled me to walk twice as far with less breathlessness!  At least I think that's what it was.  The Fitness trainer who runs cardio rehab around her gave me two tips over the phone- start slowing down before you hit an upward slope and pace yourself slowly; in cold weather wear a thin scarf over your face to warm your breath.  Not rocket science, but these tips have helped me alot so I thought I would share them. 

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Hi Everyone,

Here is the link to  more information about the research that Nicky was talking about and the radio 4 programme she was on, announcing it.

 

http://www.escardio.org/The-ESC/Press-Office/Press-releases/Last-5-years/can-cancer-itself-damage-th...

 

Xx 

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Butterfly, I do sympathise -I certainly was under the impression that the heart issues would be further down the line though knew Herceptin increased the odds, but was small. Really hope your appointment with GP goes well. Xx

 

Nicky, thanks for the advice -will have a chat to Macmillian next week & see what they say. 

Thats interesting re Dr L & will definately ask my GP about him. I just feel that although I'm improving I want to make sure all the bases have been covered. I feel really unhappy that I've been left like this for so long & now the NHS system is clearly playing games prob cos its struggling. 

 

Hugs to to all you brave ladies xxx 

Butterfly318
Member

Re: Diagnosed with cardiomyopathy

Nicky

 

Thankyou for the reply.  I will see my GP because i do know i had heart scan before Chemo and i was advised about possible eventual heart damage but from the conversations i understood that if this happened (and it was only a very small percentage) it would be many years down the line. If it is the case i can take advise on management of this. 

 

Many Thanks.  x 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi waveylocks

Sorry you are having to fight for things at the moment - I know what it's like and it exhausts you just having to phone people time after time and hang on the line whilst silly music plays in your ear!

Thanks for your comments, I listened to myself once and that's enough I think 😊 but if my message was clear then I hope it helps someone else so that's all that matters.

A couple of things. Having, unfortunately, got secondary BC I know I am covered by the disability discrimination act and certainly if you are having treatment for primary BC your employer has to make allowances under this act. I'm not sure exactly where you are trearmentwise but check this out as it may give you some extra ammunition to fight any changes that are being made at work. MacMillan are very good at giving advice about benefits and legal stuff so it may be worth calling their helpline.

Secondly I'm sure even if you had to pay for an initial consultation with Dr L that ongoing treatment would be on the NHS as the unit I visit is for research and therefore I am part of the study group and my information is used to forward the work in this area.Just a thought for you if you don't get any further with your GP etc.

Good to hear though that your echo shows improvement, as they say, every little helps.

Nicky x

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Hi Everyone 😊😊

 

Nicky,

 Have just listened to you on radio 4 catch up. Fascinating! Well done you as you came across really clearly and didn't sound nervous. You're a natural. Funny he was the doc I was thinking about seeing privately...

 

Youve really cheered me up as its been a tough couple of days. My employer is trying to make changes to our contracts so have felt stressed as they are contacting me about the need to sign it when it comes -it's not for the better of course....lol  You'd think they'd leave me alone when off sick! So was feeling a bit fed up until I heard you on the radio. Thank you. 😃😃

 

Good news the lady who did my echocardiogram today seems to think I've improved -yeah. Think it's all down to you ladies on here giving me the low down. Thank you !!! Been trying to do my hourly walks daily -not always successful so if not try to walk around the block -about 20mins. Don't always manage that but am trying!! 

 

My referral to cardiology has gone no where. Rang choose and book again as haven't had an appointment time still. They said Cardiology are not showing any new times to book so to ring doctors to get them to move things on. Rang docs, receptionist put me through to secretary who said she could see the same as choose and book and so couldn't do anything either. She put me back to receptionist.....who said need to speak to GP who referred me but she's on holiday and not back until the 10th. So she booked a phone appointment as that doc is booked for ages. Am so fed up......6 months on & I haven't even got an appointment yet let alone being seen. Think I'm going to have to drum up money to go private as this is another circle I'm going round and round on!! Lol... 

Moan over!!  Xxx 

 

 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Thanks Penny, as you will have heard I used my stage name, Nicola 😉 The interview itself was longer so I knew they would chop it up a bit but I hope my bit and Dr L's bit came across well. I'm not sure if anything is being published yet but I know his findings were revealed at the conference they mentioned which took place in Seville on Thursday. I wasn't allowed to say anything about it beforehand but it sounds like cancer does more than we know about when it comes to the heart, let alone the actual treatments which are known to affect it. Maybe if you look up the conference there may be more info? I haven't had a chance yet, currently in the chemo ward having my 3 weekly treatment, but if I find anything else out I'll post it on here.

Well done with the excercise but don't beat yourself up if you can't do as much as you want, I'm sure half an hour a day is almost as good rather than forcing yourself to fit in a whole hour. Either way as long as you raise your heart beat a bit it all helps strengthen the heart muscle, just like any muscle. Hope your cold isn't too bad and you get over it soon.

Nicky x

Penny47
Member

Re: Diagnosed with cardiomyopathy

Nicky I saw you on the radio this morning 6:50 am! 

 

Is there a report we can all read?  One that I can get a copy of for my oncologist when I see him in 2 weeks? 

 

I've been doing so well lately- my BP is down and those 20 minute walks seem to be doing me good but are hard to organize (mainly ecause I am used to flog myself to doing an hours worth and it's hard to chop the distance down) Right now I'm fighting a heavy cold.  This Christmas I've decided to go to no parties and to avoid crowds because I don't want another chest infection. Partying at home. 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi and welcome Butterfly318

Sorry to hear you may be having problems as well as the rest of us. The fact you had FEC chemo might be significant as the E element (epirubicin) is the culprit when it comes to heart problems.

The terminiology we use just comes from learning it from experience which I think we all wish we hadn't had to! EF and LVEF are the same thing - Left Ventricle Ejection Fraction which relates to the efficiency of your heart as it is the left ventricle that pumps the blood around your body. This should be around the 55% or above in a healthy heart (btw I've learnt it is never 100% so anything above 60% is always considered good) but with heart failure (HF) this is much less. Mine in fact got as low as 20% by which time you really do feel the effects!

If you are struggling it definitely is worth you speaking to your GP initially and getting a referral to a cardiologist if necessary. Do keep reading this, I'll update it later in the week with some other info I got yesterday and also keep in touch, it really helps with all of this when you know you can speak to others in the same situation, beit cancer or longer side effects.

Nicky x

Butterfly318
Member

Re: Diagnosed with cardiomyopathy

Evening Ladies

 

I have been following this post as i am concerned about irregular heart beat and shortness of breath.  I am struggling as i don't know what some of the terminology means  e.g.   EF   LVEF  and HF   and would be grateful if you could tell me.  I finished Chemo more than 2 years ago but struggle with Peripheral Neuropathy and a number of other long term side effects.  Had high dose FECT 6 sessions.

 

Many Thanks.   

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi

My appointment went OK but my blood pressure has gone up quite a bit, something I only just checked myself yesterday as I know it has gone up when I've previously been on hormone treatment. Somehow what with the house move and so many other things going on I've failed to keep a track of it myself (I have a BP monitor at home that I know is very accurate) also I'm a bit annoyed that my GP didn't take my BP when I last saw her a month or so ago for a general review! Anyhow, this could be causing the extra stress on the heart so I am to up the dose on one of my medications to see if that helps.

On the separate note of my interview I was interviewed for Radio 4's Today programme which is due to go out this Friday. This should link into some new research results being announced the day before (which I'm not allowed to mention at the moment!) and my consultant is involved with this so he i

was also interviewed. I just hope it all comes across OK - well, my bit at least, I'm sure everyone e,we is far too professional and used to this sort of thing! I'm not sure when in the programme it will be but you can usually catch it on iplayer if you don't hear it, I'm sure that is the way I will hear it as I don't normally listen to Radio 4 😊.

Good to hear you had some relief from the palpitations waveylocks, I don't have problems with my thyroid but I know they usually check this to see if this is causing some of the heart palpitations. Fingers crossed for your echo this Friday.

Nicky x

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Hi Everyone.

 

Good luck today Nicky at the Brompton today. Wishing you well with the interview -go girl go!! Good to hear that this issue is being highlighted. Will they let you know when it will be showing? Will be thinking about you today. Hope it doesn't wipe you out too much. 

 

I don't know if any of you have an underactive thyroid. I do. And have recently had a problem with weight going on despite my real hard efforts to prevent this (obviously not a good idea to be gaining weight with heart issues). I decided to up my thyroid meds a little -was worried about doing it as I thought it might make the palpitations worse. But no it's really helped the palpitations at night -last night I slept flat for the first time in months and was ok!!! Am amazed. My high blood pressure has improved too. 🙂 

Am going for an echocardiogram this Friday so fingers crossed. 

 

Thinking about you all. Hugs xx 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi ladies. I am due to go up to The Brompton today for an extra check up and also be interviewed for the Today programme for broadcast later this week. I'll update you all tomorrow and hope everyone is able to find something of interest to them as and when the interview, and accompanying research information, is broadcast.

I hope everyone is coping with the side effects of their treatments and that the actual treatments are helping. Do update any information that's useful on here, especially to let us all know how you are coping, it's a tough life out there at times.

Nicky x

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi and thanks for your comments about my 'news'. As soon as I know more I will definitely be updating this thread to share my knowledge which, as you say Sheel, is so important. At the moment all I know is the leaflet is published by MacMillan who seem to do all the information leaflets for GPs but I don't know what the title of this one is. My consultant has contributed, or probably actually written, for the previous ones and I'm as intrigued as anyone else about what the new research is saying.

Take care everyone and I hope that blood pressure, palpitations and general heart health improves for us all.

Nicky x

Sheel
Member

Re: Diagnosed with cardiomyopathy

Hi Nikki

This is so important.  When I was diagnosed with HF it seemed it was head in the sand time for the medics.  They knew about, but didn't want to face the connection with chemo and I sort of concluded that they had no 'road map' through, and in the absence of any guidance were only able to treat the condition as with any HF and the prognosis was depressingly poor.  I am not surprised at the inconcistency in responses from GPs that have been highlighted on this thread and not surprised at similar incosistencies amongst cardiologists and oncologists.  

A colleague of mine who had been was treated for BC at the same time as me, very sadly died a couple of months after my HF diagnosis - she had a build up fluid on her lungs and they were unable to treat her in time. That's all I know but it was a scary coincidence and really made me think that if we, as survivors are not alert to such serious future problems we are putting ourselves at risk.  Avoiding stress would have been a 'biggie' for me and would have affected decisions I made about things like work/life balance post BC treatment.

The good news is that we do seem to 'get better' despite it not being fully understood why or how.  So the work being done at the Royal Brompton is crucial and likewise, your contribution. I really hope something can be achieved here and I'm looking forward to more info and hearing your interview if it goes ahead and good luck with it if it does x

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Hi Nikki,

 Did you have a lovely time on your trip away? Welcomed relief hopefully from all the stress of moving? 

I hope the appointment up in London with your trusted specialist bears good fruit for you. Very exciting that they are wanting to use you to publicise the results of their efforts -that there is better treatment out there. Am really interested so yes please let us know when it happens. What's the leaflet called they're sending out to GPs? -if I know more will prompt mine at my next appointment... Is the leaflet national or regional?

 

I have been doing better and not had a dose increase this week ( 10days since last increase) Been away for a few days seeing a specialist for a different condition which was really helpful. Was so pleased that my BP & PR was in normal ranges but sadly today it has shot up on both sides. Am hoping it's because I stupidly had a coffee and the caffeine has done it and it will drop by tomorrow. Very stupid of me I must say!! So fingers crossed... No sign of a letter yet for an appointment with Cardiology. But I mhardly going to be classified as high priority am I. 

 

Big, big hugs to you brave ladies,

Ange

xxx

 

 

 

 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi ladies

I have been away for a coupe of weeks taking a well earned holiday but have managed to catch up on this thread - although can't remember half of it due to chemo brain!

Glad to see that some GPs are listening and taking action - it's such a shame that they all don't.  I have had  a couple of low results from my recent echo's so now have an appointment back with the specialist in London who is going to run a few more tests than normal.  At the same time I believe I may be interviewed regarding my experiences by a reporter for the Today programme!  This has been mentioned a couple of times to me but it sounds like there's some more evidence coming out soon about the link with chemo/drug side/after effects and heart problems. I will keep you posted if it is going to happen as it may be of interest and maybe BCC would like to know more? I understand a new leaflet is being issued to GPs next week which is why it is happening now.

I hope that everyone's symptoms are being treated sympathetically and we can all get a good result from medications or exercise or whatever it takes. In fact I have just met with a friend who has a similar (heart) diagnosis to the one I had, although not cancer related, and her visit to the heart specialist also confirmed that one trigger can be stress - something I know I have been suffering with recently due to our house move.

Keep well.

Nicky x

 

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Hi Belinda -am so sorry to hear that you're having a rough time going through chemo again. It must be tough to have to keep repeating chemo -great that they have found one that works that is less ggressive on the heart  -hope all goes well with it and the se's are minimal.

Thankyou for telling us you're fantastic news over you're heart recovery. How wonderful that the heart has repaired itself. To come from such a low base and get 54 is just marvellous. Well done!! You have given me hope and am keeping my walks up! Have managed to increase them so..... 

 

Penny -I know you've been told not to expect any improvement but I really do hope you do get some -those 20min walks must cost dear to do but am so glad you're persevering. Fingers crossed. How wonderful it would be to prove the medical fraternity wrong like Belinda....well you can dream 😊😊

you and your hubby must be dreading this appointment but are showing it in different ways. The long wait of the unknown is excruciating painful and time passes so slowly when in that limbo land. I hope that the results are not as bad as you fear. 

I found the meditation session very relaxing and slept to so well afterwards that night. Or it might have been the Reiki session I had afterwards. Have bought a meditation cd but not used it yet!! Lol...

 

Hugs xxx 

Penny47
Member

Re: Diagnosed with cardiomyopathy

AH Belinda this is the kind of story I love to hear.  I am sorry you are having a tough time now but it sounds as if your progress is remarkable.  My EF is 33 and i would love to see 54 again but it doesn't seem likely at this point.  Trying to find little walks which don't have hills in them for my 20 minutes a day.  Not easy in the Cotswolds. 

 

I would love to hear that there were chemos available if I had a recurrence but at the moment it doesn't look good and I am thinking about mx for the other breast. This would be hard to get but if I fought for it I think I could get it as my first tumour never really showed up on the mammogramm, which is my only way of being monitored now.  I'm seeing my lovely ONC in 3 weeks and I would love to chat to him about this, although I know I will have to reassure him that I don't want revenge for getting me into this situation; I knew what I was getting into at the time etc etc.

 

Waveylocks- I do pray daily and I also meditate so I am getting that uplift there.  Otherwise I do not know how I would cope.  My husband has just had an unexpected summons from the hospital to appear on my birthday which is in two weeks. (It can only be the path results- and if it were good news I am expecting them to have rung by now to tell us so here we are back in the Waiting Room) This was the last straw.  We were having a family party yesterday so I put it away and just coped (this was not easy).  I find I get into an anxious state when I have one more shock and then after doing what I do, things pull together but it does not stop the shock reaction.  It just shortens the time I suffer each time.  My husband bless him is impervious to this all, just gets on with it. He grew up during the Blitz so I think he comes at danger issues from a whole different direction.

 

There's a meditation group at Maggie's which is 12 miles from me and I may well join it but at present I am trying to ration my energy, which is in short supply. Luckily I have a wonderful job and very supportive colleagues.

 

 

belinda
Member

Re: Diagnosed with cardiomyopathy

Hi all, I keep losing this thread. I posted earlier down the thread. I was diagnosed with BC and mets together twelve years ago.

Developed sudden, severe heart failure, cardiomyopathy two years next April. LVEF of 23, swollen legs, in wheelchair. Was given very little hope anything would improve things. Well as my LVEF read 54 a couple of months ago and amazingly showed muscle had all repaired, was of normal appearance I'm losing my heart failure nurse as I'm far too well.

So posting to say things can change and significantly. I'm still on Bisoprolol and Ramipril. Have also had two different courses of chemotherapies, kinder to heart, during this recovery time. Not visiting the forums much as having a tough chemo at the moment but hang in there all. X

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Ooh Penny -it would be helpful if the GP could be just tad more encouraging. I know there is no point in misleading you but you know they just don't know everything. A doctor once told me that medicine is an art form......think you need a better artist!! Haha.

Am sure the walking will help and have been told is a must. And you have improved!! Goodness they must be a dour lot if you're finding the cancer hospital cheering my dear!! What about doing meditation -my local cancer centre offer a weekly session for free for as long as you like. Am going tomorrow 🙂 

 

I got a letter today with details to apply for an appointment to see q specified cardiologist at my local hospital who deals with cardiotoxicity (he's the one who's been liaising with my Oncologist) - seems my GPs actions have worked. Alleyluya!!

However when I rang to make the appointment I couldn't as they hadn't got any left until January and those haven't been released for booking. I will get a letter at some point in December am told. Have offered to take a cancellation. Had hoped earlier as the rate I'm going will have maxed the meds out before Xmas. Scary thought!

Hugs xxxx

Penny47
Member

Re: Diagnosed with cardiomyopathy

Waveylocks- the answer to the pain problem was -  talking about music! The GP was talking about how he was going to a Ceilidh that night where a wonderful local musician was playing and even the thought of it relaxed me and straightened out my pain waves! I fe lt a little strange for 24 hours and was mindful not to lift anything heavy but was fine by Saturday afternoon!

 

I've got all this dose regulation to go- i have a feeling that things will get worse before they get better, even though in my case I'm under the cardiologist.  I did see the GP on Monday.  She was not very encouraging, and basically said keep exercising (ie go for short strolls) but don't expect it to make any difference to my condition.  And keep taking the tablets because they are basically the only treatment.  Come back in 4 weeks for a meds review and mind out as the BP drops as I may have faintness.  She won't refer me for cardio rehab as I haven't had a heart attack and she won't refer me to Royal Brompton either unless I have a recurrence of the cancer.  So I am getting used to the idea that I have to treat the tablets with the same acceptance as I accepted the chemo,  I still wonder if the people who I am meeting through this diagnosis would be more cheerful if the condiiton wasn't caused by medical intervention.  It's almost as if I have self-inflicted wounds.  Maybe they will cheer up for Christmas.  It's been really fun going to my husband's cancer tratment appointments with him; although his long-term prognosis is unknown, every encounter with the Macmillan Nurse, the onc and the surgeon has been full of cheer and light.  

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Oh Penny  you have had a tough time -my eyes were watering when you said they didn't give you any analgesia -what were they thinking!! 😒😒 Good news re the blood pressure though!!😊

 

Thanks Nicky for your kind words and suggestion.

Am am still going up and up on the dose of meds on a weekly basis. Am getting close to the max I can have  for the ACE inhibitor. About half way for the beta blocker. Saw a really nice GP who is concerned. Told me I'm not stable and she is writing to Cardiology to ask them if they should be seeing me. There's hope!! Also gave me a source to contact and see an out of hours GP if I get a bad dose of palpitations. Told me I must ring the surgery and I will be seen as I should be treated as an emergency. Felt heard ar last. Hope she told the receptionists the last part as one of them rolled her eyes at me taking the third consecutive Monday morning emergency appointment......lol...

 

Have got to buy a blood pressure device -any recommendations? 

 

Big hugs to you brave lovely girls xxx 

 

 

Penny47
Member

Re: Diagnosed with cardiomyopathy

I'm on aspirin 75mg a day and I take it dissolved in warm water after breakfast.  It also helps my arthritis.  I tend to get irregular heartbeats in the night but it's my bladder which wakes me up and then when I am back in bed I just lie there stressing about the beats!  SO I sit up, read something soothing and fall asleep.  My OH is getting used to sleeping through this. They are usually gone by morning.  Also I find listening to music irons out my heartbeats but not all the time.

 

Just had endoscopy for diverticulitis which was brought on by the ACE inhibitors- they changed the tablets fortunately but I was in bed for 3 days in agony back 6 weeks ago.  My results are good and I got the Dr who did it to read out my EF which was 33-35 in Sept before any treatment. That's my personal baselilne.  I was also pleased to see that despite my suffering while they did the examination (tears filled my eyes at one point- no analgesis!)  my blood pressure is well down.  It has taken 31/2 weeks to get to this point.  Really chuffed.  I feel I can face the cold weather now so bring it on. 

 

List for the GP is now one side of A4 going over to the other side. 

 

 

 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi waveylocks (and Penny)

One of my triggers seemed to be anxiety as well. However, the more you get palpitations the more you stress over them so it's a vicious circle! One thing I would ask, if you're not on them already, is to have an anti coagulant. The risk from palpitations is a blood clot forming - sorry if I'm scaring you here but that is pretty much the main risk from them, I understand there is no shortening of life span etc with them as has been proved by observation. If you are having to go to your GP today also use the quality of life question. This is obviously affecting you a lot if you can't sleep and I do know what that's like. The palpitations themselves tire you out as your heart is not pumping the oxygen around your body very efficiently so you will get more tired. 

I know what you mean about some of the NHS departments not being quite so efficient and willing to listen as there are in oncology! Exactly my problem with no communication at all between them until I went to the specialist unit at the Brompton.

God luck and hope you get some more proactive help from your GP.

Nicky x

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Hi Penny. Interesting thought. Thanks. I don't think so as am often woken in the night with palpitations. However will keep a check on this. I do get tired easily I've noticed but never know whether it's all the cancer treatment or the heart -probably both am guessing! Lol...

 

I think some of it now is anxiety as in reality am on my own dealing with them especially at the weekends. I need to adjust and I suppose with time I'll get familiar and will be able to judge better. I'm a very proactive person so like the idea of taking charge more of my meds -especially as I'm left to deal with it. I think having a back up plan like the nurse suggested will make me feel more confident. 

 

How are you? 

Penny47
Member

Re: Diagnosed with cardiomyopathy

Waveylocks- does tiredness contribut to your palpitations?  Mine has done definitely.  I nap every day- even for 10 minutes. Have to- brain just shuts down!

 

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Thanks Nicky,

 I have rang The British Heart Foundation a couple of times -they have cardiac nurses on their helpline who are very helpful and informative. Top tip they've given me today is to ask my GP what the next increase will be ahead of time -this is so if I hit a problem with palpitations out of hours, particularly during the weekend then I can implement the next dose up  if needs be ( might have to sign a disclaimer they said!) until I can contact them again -am hoping this will avoid more fruitless journeys to A&E that 111 doc insists on. Think this is a great idea! 

They also asked me if the surgery have an out of hours number to ring for a doctor -they don't -have checked. Options their answer phone says are 111 or 999.... (Of course there is the walk in centre but my GP said they wouldn't be able to help me either) neither can 111 or A&E for that matter....

 

Am guessing you guys in the know know all of this so sorry to state the obvious but it's all news to me. Such a contrast to all the wonderful back up I got when going through chemo! 

 

GP put meds up yesterday and already the palpitations have kicked back in this evening -can't believe it!! OMG -will see what the night brings but think it's highly likely will have to see GP tomorrow if I can get an appointment. Lol...

 

Moan over!!! Xxx 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi waveylocks - no, you are not imagining it. There is another thread called 'long term damage from chemo' I think all of us have posted on both but I know what you mean about not knowing where your previous comments have been put. I think you can bookmark a thread, or threads, that are of interest to you but as I've never used the facility I can't explain any more about what to do!

Its good to know your onc is talking to cardiology, something my hospital seemed unable to to! That way you will know that you are getting the best advice from both areas that concern your health. I agree with your onc that the problems caused by Herceptin should improve as you no longer have the drug but have no idea about  how long this might take or even what else can be done in the meantime, except keep increasing the drugs which is what seems to be happening anyway. There is a maximum dose for the drugs so I suppose if there is no long term improvement once that is reached (as in my case) there may be further investigations needed but, again, I can't advise what that might be. I'm sure getting out and exercising can only be good for us so I'm also getting out as much as possible, despite the grim weather at times!

Good luck with everything and keep in touch on here so we can all help each other and provide useful info for others who may need it.

Nicky x

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Hi Nicky, Penny, Sheel and Belinda,

Have been following this post and I think there is another one (or am I imagining things ) that I posted on. It's really helpful reading your posts.

 

Am sorry to hear Nicky that the Herceptin has affected your EF -hope it comes back up for you soon now you're having a break from H. Do you have a long journey to the Brompton? 

 

i saw my Oncologist and asked about whether I could be referred but he is working with Cardilogist on my case (though I have no direct contact with them). He has promised he will if I haven't improved with the next echocardiogram (December). I did ring the consultant secretary  at the Brompton and she said they get a lot of referral because of Herceptin...  

 

Am still having problems and the GPs keep increasing my Ace inhibitor and beta blockers -seem to be going up in dosage every week as symptoms keep kicking back in. 

 

Am trying to walk every day for up to an hour thanks to this posts about exercising.

 

Last week I felt really tearful and kept crying -not very brave I know.....think it was because I thought I was through treatment for the BC.....so dissapointed that I've not escaped the hospital yet! Feel more calm, less emotional this week 😊 But dread the next surge of palpitations. There's a definately pattern of them reoccurring a few days after the latest med increase. I don't understand why this is happening? It leaves me wondering if I'm getting worse, is the heart getting lazier? Am told it was mild left ventricle damage but if so why the strong symptoms!!

 

My Oncologist told me that the Herceptin won't be out of my body until late Jan and is the cause of my heart damage ( no previous heart problem). He has told me it will heal. Hope he is right! xxx 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi Penny

that sounds encouraging as it seems you are not getting anywhere in particular with your GP and oncologist. I hope you can get a referral, even if nothing dramatic changes with medication etc but would give you, like it gave me, a feeling of confidence that things were being done! I also know what you mean about milder states of conditions being just as bad as more severe ones. Especially as I think you are not taken as seriously by everyone as you don't seem as bad. However it wears you down, and wears you out, just as much. Keep up the exercise, I've been upping mine quite a bit recently as its one area of my health that I have neglected over the summer due to many reasons, the biggest being moving house and all that entails with being permanently sorting things out and having to be in to accept deliveries once we had moved.

Keep us updated.

Nicky x

Penny47
Member

Re: Diagnosed with cardiomyopathy

Wow Nicky that report sounds amazing. 

 

Since my last post I have spoken to helpline support nurses and to local fitness people and I am more confused than ever.  For example the advice is "exercise for 20-30 minutes a day" and then in the next breath "don't get tired out".  Anyone who says this so glibly has never worked with cancer patients on hormone therapy.  Not being tired for me is being able to do deskwork without falling asleep in the middle of it! On the plus side. the meds are working and I have more stamina (I can go for longer without stopping to get my breath when I walk up hill- about 2-3 meters longer but that's an improvement-hoping I don't lose it when the weather gets cold). The letter from the Cardi to the GP was really cryptic and my doctor daughter (who takes an interest) was as miffed by it as I was.  So when I rang the sec of the good doctor at RBH cardio-oncology unit  today it was like a whiff of oxygen.  She too suggested my Onc refer me.  I am going to talk to my GP first- I felt the communication between the Onc and GP during chemo was not all it should have been.  Trying to mend fences.  Keep her on board.

 

Quality of Life-yes, that's a good phrase to use; it's not too early for me to start thinking in these terms even if I have what the doctors think is a mild condition.  I've noticed over the years sometimes mild conditions are harder for people to cope with than more serious ones! 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi Penny

Hopefully your oncologist will take your concerns seriously, he/she can always refer you to somewhere like The Brompton, not just your GP if you find you're not getting anywhere there. I also read the report about regular walking being better than gym sessions! At least it's free whereas you're being asked to pay for sessions that maybe aren't monitored by a medical professional? So maybe not so beneficial in the long term. If you are still struggling you should keep pestering your GP for a cardio referral and use the phrase they love - quality of life! After all that's what's it's all about, if you have a condition that affects your everyday activities your GP should be doing his/her utmost to help the patient! Btw, for everyone, I happen to speak to the lovely Dr at The Brompton on Weds when he phoned me about being involved with publicising the work done at the hospital for cancer patients. Macmillan are publishing a guide that ALL GPs will receive regrading the link with cardio problems after cancer treatments and I know the good Dr has been involved with the writing of this guide. I may get involved with some press coverage as a patient who has benefitted enormously from their service, which is why he had called me to ask permission to use my case study. I will keep you posted on here as its due to be published fairly soon so there should be no excuses from any GP about not understanding the link between the two conditions and therefore taking our concerns very seriously. Sorry, off my soap box now!

Nicky x

Penny47
Member

Re: Diagnosed with cardiomyopathy

Nicky I am sorry to hear you're EF is down (see- I know what it is now !) but not surprised as the weather here at least has been like living in an acquarium. 

 

My conversations on the phone with support nurses on the phone have been like -"if you have mild DCM (which is I think what the dx will be) then your exercising should be mildly challenging" (that is what I have been doing anyhow!).  My BCN was fabulous- I poured my heart out to her and she was very reassuring and offered to tell the ONC at the next MDT, so at least that hole is now plugged.

 

I have spoken to the cardio rehab people but I don't feel very encouraged; it's £3 a session which is less than half the price of a gym session for over 60's but still a lot to whack out long term.  It's frustrating because other areas have free rehab on the NHS. I noticed in the paper yesterday there was a report of a study which compared people who walk freely and prople who go to the gym and the free walkers were slimmer with lower BMI. Encouraging. 

 

Yesterday I did my 20 minutes walking and was much less out of breath; I reckon it's the meds starting to take hold.   I'm resting today as I overdid things a bit yesterday, going shopping instead of having my usual afternoon nap.  I am beginning to feel a little more hopeful about things.

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi Penny

That is annoying that there's no letter from cardiology and I know your GP won't be able to act without having one as they won't know the facts. Also the fact that you don't have access to a heart specialist nurse doesn't helps! Having said that I don't think our practice either has one or maybe, if it does, she is on the same basis as yours. I don't actually know who pays for the referral but as it's all NHS I'd hope there's no cost issue that would stop any referrals. As the unit is a research unit it's quite probable there is no cost as all the data gathered is used for future reference points.

At the moment I'm unfortunately having problems with my EF values, having been on long term Herceptin for a while it's taken a bit of a dip. So I can see me having to go up to London a few more times myself than I have been recently. This is good in terms of the care I get there but now trying to co ordinate my oncology team at my local hospital to speak with the cardio oncology team in London - something that I shouldn't have to be doing if we had a truly linked service!

Good luck everyone with matters of the heart!

Nicky x

Penny47
Member

Re: Diagnosed with cardiomyopathy

Just seen the GP.  No letter from the cardiologist after 2 weeks.  So we wait patiently.  She told me that cardiac nurses are reserved for the patients who are recovering from heart attacks, or where there is anxiety.  Is there such a thing as a heart patient who does not experience anxiety?  I didn't bring up the topic of Brompton as i want to talk to them first.  I don't know who pays for the treatment; if its the GP then I am in for a fight.

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi ladies

it is interesting to share our experiences on here, and maybe it will help us or someone else reading.

I was really impressed that you had helped yourself so much with excercise, Sheel. I must admit I have not been excercising as much over the past few months due to the pressures of a house move so wasn't surprised that my last echo showed a drop in my LV. I'm back on my daily walking which, although not for a long period of time, I do push myself so I get out of breath. All the dog walkers I  pass on my way must think how unfit I am as I'm usually puffing whereas they are all strolling around! I was told by my cardio-onc team to excercise as much as possible including if doing any housework to do it with vigour (my words not theirs!) hmmm, not sure about that one 😉

I agree that the medications can really hit you hard with side effects but I have got used to them even being on the highest dosages of several of them. I would suggest that you (Penny) go back to your GP or the cardio unit and try to get some more definitive answers, especially now that you've had a chance to reflect on what you didn't get told or don't remember. There certainly seems to be, yet another, postcode lottery for the standard and type of care offered. I still travel regularly up to London for my specialist care as I wouldn't have got anything like it nearer to home. Having said that I had all sorts of complications so I'm more than happy to see them. Penny, if you feel frustrated by not getting so much help locally I'm sure you could get a referral if it's convenient to travel to, even for an initial assessment - I get all my medications etc locally, just get the advice from them! And the lead consultant is top of his field certainly in the Uk if not Europe, plus he's lovely! Oh, and they always want new Guinea pigs, as I call myself, as it's a funded research unit where the results are shared with the cardio oncology world wide community.

Nicky x

Sheel
Member

Re: Diagnosed with cardiomyopathy

Hi Penny - your post shows what a postcode lottery our NHS can be.  I found the cardiac care easily as good as the BC care - in some ways better because it was more personalised but in other ways more difficult because there was no 'road map' through the process well not even a process really.  I was offered specialist counselling from the Cardiology Unit and that helped.  I didn't do the cardiac rehab programme until nearly a year after diagnosis and jacked it in after 3 sessions - I was fine doing the exercises but couldn't keep going at their pace for a full hour.  (to be fair I also have an aversion to groups) but I was then passed on to a fitness instructor who gave me some individual support .  So no complaints at all about local resources.  I wasn't given any 'limits' - I was advised to do as much as I could. When I started swimming again, I was terrified it would put strain on the heart but was told that wasn't a concern - if I had the energy and stamina to do it, go ahead.   So I could do that 3 mile walk - it would take me a long time with frequent rests and I could get up those hills.  The problem was that if I did, that was me 'done for the day'.  So activity was a logistical nightmare and it was hard to plan ahead.  The fatigue which set in was unpredictable and I found it wasn't good to battle with it.  So I don't envy you at all because you obviousy have committments which are unavoidable and I'd even suggest that at this stage getting on with them is more than enough activity. ( And much of the fatigue is actually a side effect of the different medications - my energy levels improved dramatically as medication was reduced.)

I didn't make any real changes in my diet - just tried to keep things balanced and healthy. I did give up alcohol though beacause that can contribute to LV damage. Wishing you luck.

Penny47
Member

Re: Diagnosed with cardiomyopathy

Sheel and Belinda- and Nicky - thank you all so much for sharing. (as I said on the other thread)  I guess I knew heart problems were in the frame; my GP had specifically warned me about them and I guess this means that they have had other patients with this problem.  The advice I have had has been typical specialist in a hurry advice and it didn't help that I couldn't write cause I had my arm strapped up at the time!  So I was not the picture of an effective model patient.  And I was on my own too, which surprised me that they would share a diagnosis when I had no one with me- a far cry from the sensitive medical and surgical treatment I had with the Breast Care Centre and the surgical ward.

 

Exercise has got to be the answer.  A year ago I thought nothing of doing 3 mile walks two or three times a week, and I was working 20-30 hours a week.  That includes heavy housework because I run a set of holiday cottages.  Now I am managing to work slowly about 2-3 hours a day.  I am only supposed to walk 20-30 minutes a day which is a laugh because I do that just shopping or taking my husband to hospital appointments (he's got a disability). And as for not putting a strain on my heart- I  live in the country in a little valley so any walk involves going up a slope.  And as for the rule about not lifting more than 10KG- I get the scales out when my grandchildren come calling.   Work in progress! 

 

I haven't had cardiac rehab but I have a friend who has and she had the same fitness instructors as I did in the mainstream at the local sports centre.  She wasn't very impressed and in the end gave it up.  I was wondering what your experience has been of this?

 

Any refelections of dieting?  (that is, chosing your diet) I am still getting over an attack of Diverticulitis brought on by Ramipril (ACE Inhibitor) - Luckily they have changed my prescription to Lisonopril and I have no SE's.  no E's either though but it's early days. I think maybe I should take my blood pressure when watching Strictly Come Dancing which I find totally distracting and absorbing having studied ballroom and ballet when a kid.

 

Meanwhile I am very tempted to ask for a referral to Brompton!

 

belinda
Member

Re: Diagnosed with cardiomyopathy

Hi Penny, Nicky may be referring to me. 😊 I was diagnosed with secondary BC from the beginning, in 2003. I was just in my 40's. In the last twelve years I have had lots of chemo and a year after finishing Doxorubicin, Spring 2014, I suddenly developed severe heart failure. Was rushed to hospital after what I had thought were sudden onset panic attacks. My LVEF was twenty three, lips were blue, extremities blue, heart racing off the scale, enlarged. This was April 2014. Straight away put on betas, ramipril, water tablets, legs had ballooned. Luckily I was also allocated a heart failure nurse. My GP practice fund the service and I know it's not the norm to be offered this service. If you can access the service though it helps giving you fast access to hospital cardiology, knowledge of the latest drugs, there is someone at the end of the phone, I email my heart failure nurse and see her every few weeks, she visits me. To a year later after a summer of sometimes using a wheelchair in 2014 my LVEF is now 54, no swelling ankles, no need for fluid retention tablets, no wheelchair, I do still take betas and ramipril for now but heart is now pretty much back to normal. The doctors were pretty amazed by the latest ECG. I was not expected to recover and not nearly so well. I have been able to have further chemo with no ill effect although it has been chemo which is kinder to the heart. So heart great although BC not so good. So hope this helps, I was devastated to suddenly have to juggle two major conditions, one is more than enough. Take care. X

Sheel
Member

Re: Diagnosed with cardiomyopathy

Hi Penny

I was diagnosed with severe heart failure (e.f was down to 10) 2 years ago at age 60 and 5 years after treatment. I was told the condition was permanent, that I would be unable to work again and would be on medication for the rest of my life.  I was devastated and felt utterly 'lost'. Fortunately I have had the benefit of an excellent cardiologist and in the months following diagnosis, the heart failure community nurses who were really suppportive  ( maybe there is a team in your area).  I kept taking the medication - a cocktail of different drugs with some pretty awful side effects - and just kept going. The main problem was extreme fatigue which meant my quality of life plummeted - any exercise cost me days in bed when I was just too tired to do anything at all.  But I knew exercise was vital and despite it being a real struggle, did as much as I could possibly tolerate - walking, swimming and gardening mostly.  My heart has now 'remodelled' itself - my consultant says they don't really understand how or why this happens but know that it can, particularly in younger people (and believe it or not, 60 is apparently young to have this degree of cardiomyopathy) .  Things are now back to normal and the drug regime is down to losartin and aspirin.  My cardio says its a 'major success' and I feel like I have my life back.

So I can understand your confusion - it semed to me that the medics weren't able to give a prognosis with any confidence and there were so many 'unknowns'.  I think its been the combination of medication and exercise which has worked my miracle.  Keep on going - your body will tell you when to stop and when it does, rest and rest again.  Feels like one step forwards and two steps backwards but I got there.  I really wish you well.

 

 

 

Penny47
Member

Re: Diagnosed with cardiomyopathy

Marli - a cardiac nurse like yours would be ideal.  I am waiting for my GP to come back from holiday after half term and I will ask her about that.

 

After all- there are more heart sufferers than cancer patients having treatment in the NHS! 

marli
Member

Re: Diagnosed with cardiomyopathy

Hi Penny - I am having Herceptin as part of my BC treatment and after 4 sessions and a echo it was found the the Herceptin had made changes to my heart. The treatment was suspended and I was referred to a cardiologist who prescribed ACE Inhibitors and Beta Blockers. The heart has recovered and treatment resumed.

What I wanted to say was that I was assigned a cardio nurse who oversaw my medication,checked blood pressure, checked bloods and generally gave me information and explained everything in cleat terms. She was great , having more time that the cardiologist and answered even the most silly questions for me and put my mind at rest.

It is worth asking your GP if this service is available to you as I found her so reassuring and helpful.

Good luck  Marli x

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi Penny

i just had to reply to your post as I too suffered from cardiomyopathy after having. FEC chemo some years ago. Unfortunately I have secondary BC so this affected me even more as it had an impact on my future treatments. Things became so bad with the lack of communication between my cardio team at my local hospital and my oncology team that I was desperate and my fantastic oncologist really helped me. He contacted some of his medical friends and found out about the cardio-oncology unit at The. Brompton Hospital in London. They are a research unit and treat people who suffer with cardiology problems as a result of chemotherapy and other treatments such as Herceptin. You can get a referral to them I'm sure, if not I know of another lady with secondaries who has had similar problems and her local GP had a heart care nurse who has been fantastic helping her with getting the best medications etc. There are various medications that help the heart and also other more extreme procedures, which is what I needed as I had to have Herceptin as part of my ongoing treatment. Do get in touch if you want more info, either by PM or on here. I am happy to share my knowledge as it helps others who may have the same problem.

Nicky x

Penny47
Member

Diagnosed with cardiomyopathy

Two years after finishing successful chemotherapy and a mx, I have recently been diagnosed with cardiomyopathy which is almost certainly caused by chemo. I knew there was this risk when I signed up for the chemo, but it has taken some getting used to all the same, and it did come on rather suddenly.  I am wondering about other's experiences; I am told that in my age group (over 60) there are potentially 1 in 10 so affected.  My symptoms are not serious or life-threatening but I am already getting confusing mixed messages about what I can and cannot do.  And how I wish there was a breast care nurse or Macmillan nurse equivalent for heart disease in my area!