67.7K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Diagnosed with cardiomyopathy

98 REPLIES 98
Penny47
Member

Re: Diagnosed with cardiomyopathy

Sue glad to meet you - it's not what we signed up for is it?  But we are still here which is the main thing.  I wouldn't hesitate to make the choices I made- though I wish I could have had the Onco DX test to see if chemo would work for me.  I have been following all the new developments in treating malignant melanoma which is what my OH has got and I'm sure immunotherapy will be the thing in ten years time, and people will look at us with admiration for what we put up with!

Bettie
Member

Re: Diagnosed with cardiomyopathy

Hi just thought I'd introduce myself. I'm Sue and am 55. I had BC 4 yrs ago and last Sept I was diagnosed with chemo induced Heart Failure and Cardiomyopathy. I was admitted to hospital for a week and my EF was 10-16%. I was really ill. My latest echo showed EF of 20-25% . I'm on various meds and have started cardiac rehab. I am symptomatic most of the time with low energy levels and unable to do what I used to. Fortunately I have been retired on ill health grounds. I am determined to feel better. It's not an easy road but you just have to take each day as it comes. I am so pleased Nicky put me in touch with this site. At last I have found people who are going through the same thing.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Thanks Penny for the explanation. Sounds good. And am so glad it's worked...yay! 

Hope you all have a happy bank hol. I have my Mum here -had a long drive yesterday collecting her so am just having a slow morning getting started... 🙂 xxx 

Penny47
Member

Re: Diagnosed with cardiomyopathy

Cardio rehab- it's exercise which focuses on regaining cardio fitness. lots of emphasis on quads and arm strength.  Well-graded so you work up to it slowly.  I could not have done it without my personal walking plan- 20 minutes a day of gentle strolling.  My problem now is finding the energy to do things-that's my next project and it's probably more about my Anastrazole for the BC than it is about the heart meds, although I do have a sticky time with leg cramps thanks to the Statins.

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Great to hear from you Nicky and indeed to have a catch up 😊😊 Also glad to hear you are doing so well on your cocktail of drugs. Amazing what the body can do isn't it? And you've just reminded me that I'm on endocrine fine treatment too.....funny how we let things slide from our consciousness -like you too busy trying to enjoy life!!

Excuse tgecflipoin errors -don't know what is up on this site but on my Ioad it will not let me modify the text as it stubbornly won't shift the cursor.....so have given up!!! 😊😊

 

heres to a happy bank hol weekend. Fun being the make of the game 😊🎉🎉😊😊

 

big hugs xxx

 

oops some of this read as gobbledygook but hope you get my meaning.... He he

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi ladies

How lovely to have a catch up on our stories! We must remember to do it every so often. Good news from Penny, that's great you can now walk which must be a big pleasure - I certainly like going out of a morning in the fresh air. Waveylocks, good for you as well. You're right, we do all forget the side effects of the drugs just because they are working so well in allowing us to forget why we are taking them! I have lots of heart meds plus hormone treatment for my SBC along with Herceptin and Perjeta, a newish drug similar to Herceptin, so no wonder I'm exhausted at times!

At the moment my lovely consultant from London is happy with my heart function, it's not as high as I'd like it, it's below 50%, but as it has been stable for well over a year so he is happy to allow me to continue with the H and P part of my treatment. These are particularly hard on the heart, even in a patient who hasn't has any previous cardio problems, so I am closely monitored. He also checks certain bio markers in my blood results which also allow him to have a clear picture and he showed me a graph of some of them last time I saw him which shows just how much the stress on my heart has reduced over the years. The change in dose of one of the heart meds has brought down my high blood pressure and I am no longer getting the extra beats I was getting. Fingers crossed this continues.

As I said, lovely to catch up. Have a great bank holiday weekend and let's get out there walking!

Nicky x

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Hi Penny,

Lovely to hear from you. Am so glad you are feeling positive and now feel supported/heard by the medics. Gosh it must've been frightening being admitted like that but sounds like the ward doc was on the ball. Must be a great feeling to be able to walk up hills again  😊😊 what's cardio rehab? I've never heard of it.....what does it involve? 

 

Reading your our post reminded me of why I get so tired still. It's a funny thing but reading your post reminded me that I have a heart prob -even though I take meds am so much better that it's easy to forget there's a problem & probably the cause of the ongoing fatigue. So your post has prompted me to review my exercise as since back st work full time have let the walking slide somewhat which is silly of me. 

 

Any way way so glad to hear you're getting proper treatment and you are feeling far more optomistic.

big hugs xxx

Penny47
Member

Re: Diagnosed with cardiomyopathy

Hi folks

 

I'm back.!  In the spring. I sent a series of letters to cardiologist and oncologist and this led to extra appointments and a real dialogue which makes me feel as though I am being treated properly.  The cardiologist is 90% sure the condition is chemo related. Then in April, out of the blue I had chest pain, was admitted overnight for tests (how embarrassing!-after two hours I was fine!) and diagnosed by the ward doctor-a chest man-with Fibrosis caused by the Radiotherapy.  Which probably caused the pain.  No evidence of heart attack.   Then the results of my MRI (In March) came through- i have EF of 50 which is what I had after chemo.  Best of all, I can walk up the hill by my house without having to stop every 20 feet.  This enabled me to collect for Christian Aid this year which is something I try to do every year.  I'm being cagey about setting targets as the med are a bit of a white knuckle ride- so many side-effects.  Trying to deal with the general feeling of malaise and exhaustion.  But feeling so buoyed up in myself.  I'm allowed to do cardio rehab now.  I'm the only woman in the class who is overweight.  Work in progress. Feeling really positive.  Reading lots of positive things on here so hoping you are all keeping well?

waveylocks
Member

Re: Diagnosed with cardiomyopathy

 
waveylocks
Member

Re: Diagnosed with cardiomyopathy

Happy Easter Everyone!! 🎉🎉 

(couldn't find any Easter eggs on the multiple icons of choice -clearly don't exist in the virtual world!!!)

 

Chicolate so glad to hear your news that you can continue treatment. Yay!!! Way to go girl!! So sorry to hear your felt rubbish yesterday but so glad to hear you feel much better today. Am sure resting and if you feel up to it gentle walking on the flat will help. Have you people around you? Palpitations are so hard to deal with but even worse I've found when on your own. I always feel better when I know there's someone around in the house. Cold comfort I know. Sending you warm hugs. Let's hoe you don't have to do another scan but if so maybe the lovely nurse will be there again with you and of course Nicky and I will be holding your hands too.

 

Am doing well at the mo thanks Chicloate. My GP has taken matters into her hands and has lowered my heart meds again so it must be getting stronger. Yay!! At least I now know the dizziness was because of my blood pressure going too low and a sign meds need reducing. She wanted me to leave getting referred to a different cardiologist as she's not sure it'll solve the thyroid treatment conflict. She might be right....think it's a bit of a grey area with conflicting research...sigh. But I do know what feel right for my body so am going on that!!!

 

Big hugs to you both and don't forget the clocks go back tomorrow (well so I'm told!!) -enjoy the weekend -seems we will be snuggling up to fires etc indoors as a wet one is predicted. I have my other son coming up to  stay -yay!! Xxx 

 

 

 

 

Chocolates
Member

Re: Diagnosed with cardiomyopathy

Hello ladies, how are you both,  thread has been quiet this week.  Waveylocks hope you're feeling a lot better and the meds are now right - don't want you passing out again!!

 

nicky - how was your break - hope you managed a good time and enjoyed yourself.

 

im doing ok - heart up and down to be honest but fit for next treatment as of Monday just gone.  Yesterday, my heart was going all day - felt awful but this morning have woken up and all is well.  Not sure what tripped it off but I'm hoping now it's the holidays the rest and less stress will settle things down completely.  Nervous for my next treatment though - I have to have an echo after it to see if any effects.  I know things will settle down but it's the not knowing that's worrying isn't it.  I want all the palpitations gone, and back to my 'normal'.  

 

Gosh ive rambled - sorry.  Well it's a lovely day here - wash is on and hoping to hang it out later.  Love outside dried clothes - so much better than hung in the house for winter.  Hope you've all got a good weekend planned.

 

huge hugs xx

Chocolates
Member

Re: Diagnosed with cardiomyopathy

H Nicky, so pleased things remain ok and you are still on your treatment.  Hope you have a lovely few days away and manage to rest.  

 

My appointment was very positive.  My heart MRI gave a percentage of 55% which he is happy with.  He wants to do another heart echo on Monday and if the figures match the MRI then he said he will allow treatment to resume straight away.  I've been given another tablet to take as well Lisinopril which I'll start tonight and hopefully no se's but to report any to him Monday night.  

 

The heart echo needs to match the MRI result and if it doesn't then he said I'll have to have an MRI every three weeks before tratment.  Yikes!!!!!  I'll never be able to do that.  I nearly fell off the chair with panic.  I think he felt so sorry for me he's going to do the echo himself just to triple check.  So fingers crossed.

 

ladies I can't thank you enough for holding my hand this week.  I don't know how this is going to pan out but for today that's a pretty decent result.  Now just got to get back on treatment.

 

have a lovely weekend.

 

hxxxx

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Hi Nicky -hope all went well today and you have a lovely break away. Hugs Xx 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

What a lot of tests we are all having! At least our concerns are being looked at and taken seriously which is half the struggle sometimes. I had my (routine) oncology appointment yesterday ready for treament today and she was happy with the last information from the Brompton so I don't need to have any extra echos done locally, they will just use the readings from the team in London so that's quite good. The least amount of time I spend in hospitals the better as far as I'm concerned.

Good luck with your appointment today chocolates, I hope you get some answers and a plan in place as to how they will tackle the heart issues and get you back on the other treatment ASAP. 

Good luck also waveylocks with your results but that sounds like a week or so away however let's hope you also get some decent answers.

Have a good weekend, I'm off for my infusions later today and then a short break so may not be online for a day or two.

Nicky x

waveylocks
Member

Re: Diagnosed with cardiomyopathy

A www thanks Chocolate -it was ok -second person in-forgotten how noisey they are even with headphones on -the bed vibrated!! Any way all done and they said consultant would get result in within two weeks. Am hoping they will send me an appointment out soon or I might ring them and ask for one. 

The neck bump been there for about 6 weeks -that's a special ultra scan the man in radiology said so that's in three weeks. No idea what he meant.

 

We will all be experts!

 

Good luck tomorrow when you get your results. Will be thinking about you. Xx 

Chocolates
Member

Re: Diagnosed with cardiomyopathy

Hi Waveylocks, how did your MRI go?  When do you get results?  Was thinking of you yesterday sending positive vibes - also of course secretly thinking thank goodness it's not me!!!!!!!!  My gallbladder isn't working - bungee up with stones but no plan to do anything about it currently.  Will be interesting to see what they say.  When do yu go for yur scan on yur neck - is the lump still there?  Just constant isn't it - like you say the hospital is such a familiar place.

 

hi Nicky, hope you're ok also.  How are things.

 

im bunged up with cold - I think it's just the stress of the last two weeks - hopefully it will go soon.

 

much love ladies,

 

hxxx

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Oh wow -well done Chocolate -you did brilliant!!! You got through.....total respect for you for taking on your fears and doing it anyway. What a brave lady you are. For me it's heights and am not as brave as you I don't take them on. 

Am with Nicky about the no pressure to report as there's enough pressure going on in your life without having to feel you have to get online to let us know your results....but I do wish you well and have all my fingers and toes crossed that you get the results you want. 

And I know what you mean about lovely Nicky Chocolate -she did the same thing to me and am so grateful to her. 😊😊

 

Am off for a MRI scan tomorrow as have polyps in my gall bladder -am hoping I Wont have to have it out but given that the surgeon gave me a booklet about the surgery I've a feeling he is going to be pretty keen b it staving off the moment with the scan!! . I've also got a lump pop up on my neck which my GP sending me for a scan about that too......my body just loves to throw up lumps all over the place these days -haha. And I never seem to be away from a hospital for too long..not that I'm not grateful cos I am.

 

Anyway I hope both of you are able to grab a moment when the sun breaks through tomorrow. Don't know about you but am just loving all the spring flowers -love a bunch of tulips to look at -simple pleasures!

 

Big hugs,

Xxxx

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hey h, you did sooooo well. A huge relief for you that the nasty MRI is done but congratulate yourself for facing your fears and knowing you are giving your team as much information as possible to deal with what has been thrown at you. Go take a long lie down, you deserve it. How lovely also that one of the nurses understood your very real fears and stayed with you.

As you know I am more than happy to help with any issues that I have knowledge of as it was only through sharing and gaining knowledge with other ladies that I know half the stuff I do. Update us when you feel you want to as I know it's always a bit of add pressure when you are asked to.

Nicky x

btw I wouldn't say my hand is broken but it is a bit sore - you have one hell of a grip ha ha.

Chocolates
Member

Re: Diagnosed with cardiomyopathy

Ladies, I don't think I broke any of your bones.  Nicky did give a big squeeze back at one point but I've made it.  All done.  Got through the tears and managed to do everything which was asked.  Now just got to wait for results.  Was so glad I had some sedation as it took the edge off my anxiety.  The lady also stayed in with me to hold my hand and stroke my face.  Made a real difference.

 

got to go for bloods tomorrow, the thyroid test so all results ready for Friday afternoon.  Then we'll get a much bigger picture of what is going on.  

 

Thank you you for all of your support.  When first told I was stopping tratment last week I felt very lost.  Nicky rescued me and put me in touch with this thread.  I'm very grateful.  It's the bit about not being on your own.  I can't do this without everyone.  What a marvellous grou of ladies you all are.

 

will check back in on Friday.

 

take care,

hxxx

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Thanks Nicky -am on Letrozle have been since before this all kicked off......interesting I will have a chat with my very caring GP next weeks. How come cardiologist hasn't mentioned this!! I never had high BP before treatment and cardio been blaming it on my thyroid treatment. Grrr. Can't wait to get away from him!! Have to stay on the Letrozole though as my BC was very strongly estrogen positive. 

 

Really glad to her that you're ok. Isn't it great being able to enjoy the spring sun warmth. Hope you are getting settled in your new home?  

 

Good  luck today Chocolate -don't worry about the squeezing of hands -we can take it and will just squeeze back as Nicky says!! 😊😊

 

Big hugs to you both xxx 

 

 

 

 

 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi waveylocks.

Ive always had white coat syndrome ever since I had pre eclampsia with my first daughter, I knew my BP had to drop to get me out of hospital, but of course it never did, or not until she was born by emergency Caesarian! So now, show me anyone medical in anywhere medical and it shoots up at least 10-20 points for no parts of the reading! My GP knows this so is happy to take my own readings as I have had a BP monitor that I bought for home for many years, and I know is calibrated the same as his surgery ones. If you look at the leaflet for your hormone tablets (mine is currently letrozole) the 'affects 1 in 10' part normally lists hypertension ie high BP. For some reason, despite this being a 'common' side effect it is hardly ever mentioned - but I now know it is the only cause for my high BP. Btw the other thing to watch out for, which is even more common, is a rise in cholesterol levels if you are on an AI - again very rarely associated with hormone treatment by anyone in the medical profession who I have met! Hmmmmmm. But, yes, I'm doing fine and thanks for asking, and the hug 😊 I saw my specialist the other week and have eventually received and read his report so I'm happy with what he has written and, as they are such experts there is a lot of info in it about blood bio markers etc which I know our local cardio department has never taken/done. He is happy with those figures and has always said to me that the LVEF reading is not the only number they look at to see how my heart can or is coping.

chocolates, we are here for you, don't squeeze too hard as we may squeeze back! I really hope you can cope today the only thing I can mention that may help is that you probably won't go completely into the scanner as they are only checking the heart therefore (if I remember correctly) your head is hardly in it. Not like having a full body or torso one. However they do make a racket don't they? I said to my husband after mine that it's as if they throw all the sound effects possible from a Sci Fi film into the machine and play them all!

Take care all

Nicky x

Chocolates
Member

Re: Diagnosed with cardiomyopathy

Thank you ladies. I really do appreciate the hand holding.  Please tell me if I squeeze to tight - don't want any broken fingers now do we?  

 

Will ll be on to report a bit later once done, although as sedated it's likely to be in the evening.  Hope yu both have a good day xxx

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Thanks Nicky...didn't know hormone therapy can increase BP -am on that....hmmm interesting. Just wish cardio consultant had listened to me two weeks before though as BP was pretty low then but not when I'm with him....don't know about white coat syndrome more like lack of faith syndrome....haha!! 😊😊

 

But how are you Nicky? Are you ok? Sending you a virtual hug as you are just fab!! Hugs xx

 

Chocolate you will have Nicky on one side holding your hand in the MRI scanner and me on the other side. Am thinking about you and wishing you good luck. Hope you can brave it.....it's so so hard challenging fears so always admire people who try to do so. But don't beat yourself up if you don't manage it as  you've been through a lot already. Nicky is a fount of knowledge and at least you know there is an alternative way to get assessed. Big big hugs and wishing you all the best. 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi

Firstly I'll be holding your hand chocolates when you have your MRI tomorrow. I do hope you are able to hold back your obvious terror of the process and get it done, I'm sure it will help with the overall diagnosis and subsequent treatment of your heart. However, if it's not done there will still be things they can do, namely chucking a lot of medication at you 😉 However this does work, and also protects the heart from the effects of the treatment we are on - which I'm sure you will be back on in no time at all.

waveylocks, I too was over medicated at times! Once I realised that it was only when I'm on hormone treatment that my BP rises I had to remember to tell the doctors to take me off my BP tablets when I had to have different  treament such as chemo. My BP at times was worryingly low like yours but it's good someone has now checked it and adjusted your tablets, just what you wanted and needed - hooray.

Nicky x

Chocolates
Member

Re: Diagnosed with cardiomyopathy

Oh Waveylocks that must have been frightening feeling faint and dizzy.  Glad your GP was on hand to sort you out.  And a reduction in the meds - that is a result.  How are you feeling now?  Hopefully a bit better.

 

took my beta blocker last night - feeling a bit slower today but can't complain.  However, the fear of the MRI is really kicking in.  I don't know if I can do it.  Have organised my sedative so should pick that up tomorrow ready for Tuesday but still ... Just don't know.  I'm so pathetic but I have a real fear of the scanner, I think I'm going to die.  It's awful.  A friend is coming with me and we're getting a cab back - going to cost me about £50 but I know I'll just want to get straight home and not navigate the tube/trains/buses when I'm sedated and traumatised!!  I realise that in order to get the most accurate result of my heart I'll need the scan and of course I am not going to die but when you're in a panic reason doesn't usually come in to the head!

 

anyway - enjoy the weather.  Have a good week everyone xxx

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Hi Everyone,

Really glad your getting some help now Chocolates. Ask them to play music when ure having the MRI -my hospital lets you take your own CD -& pops earphones on. Palpitations are just awful. When I had mine they were all the time -my heart raced along at 130+ Night and day -very scary and tiring. You take care and if it was me I'd keep a note of when and how long. 

 

Ha -had to laugh. I've been feeling rubbish the last few days -started feeling a bit dizzy and really tired. Was totally washed out yesterday -initially put this down to a long drive as part of my work but didn't  ease up. Today felt worse and then practically passed out walking to the kitchen. Checked my blood pressie -it was low. So rang the lovely cardiologists secretary who faithfully said she get hold of him but to ring my GP. Never heard a word from the cardiologist but GP was fab. Took my BP and it was110/60 - even lower when I was standing. GP said you are over medicated!!! Finally someone sees what a nonsense my meds are! And she has lowered my Ramiprimil Hurray!!! She told me fatigue is a sign of low blood pressure. This I didn't know. So am grinning like a Cheshire Cat 😊😊 very pleased to see my meds go down! Of course it must be all down to the Tachycardia that the Consultant describes in his letter ..( tongue in cheek sarcasm)....not!! 

 

HOpe you all have a lovely weekend....xxx 

Chocolates
Member

Re: Diagnosed with cardiomyopathy

H ladies, well the consultant went well I think.  Had an ECG, all normal.  Heart beating a bit quickly but otherwise no immediate problems.  Booked in for a cardiac MRI on Tuesday.  Dreading it - have sorted lorezapam as a sedation so hopefully will be ok.  Bloods to do also with a thyroid test - thanks for the heads up about this - and then back to consultant hopefully next Friday for results.  Also presribed a beta blocker to start taking tomorrow - I think I'll take it in the evening so if my blood pressure drops I'll be in bed.  Don't want to take it in the morning as driving.  He said I could but I'd prefer the evening I think.  

So now it's a waiting game.  He thought, if the MRI didn't show too much damage that I should be back on tratment within the six weeks - possibly earlier but can't say for definite yet, or how quickly of course heart repairs itself.  He said he may add another drug also but again will wait and see.

was so anxious for appt, I'm surprised he couldn't hear my heart beating - felt like it was coming out of my chest!! I'm sure yu all know what I mean.

so now just need to get through Tuesday - won't be easy, and if the sedative doesn't work then I won't have it.

 

have a good weekend everyone,

hxx

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi ladies

waveylocks, I hope you get an appointment soon and you get the answers you want/need.

chocolates, I didn't realise you were also getting palpitations, that's not nice. Over the 7 years or so I have had heart problems the palpitations (or atrial fibrillation when I had that) were the things that affects me the most day to day - more so than the bloomin' secondary BC! I'm sure getting onto some meds will definitely help them so I hope you get some relief soon. Over the years I have found I got/get them when I'm stressed and also when I've had one glass of wine too many, oops. Both of which are listed as stimulants for this problem. Currently, touch wood, I don't get them, or at least they are not noticeable or troubling me. But when they have done they can really affect you, partly because if the heart isn't pumping efficiently the oxygen isn't getting round your body so you can feel very lethargic, tired and just out of sorts as I've described it to others. I used to find if something calmed me such as sucking a sweet to having a milky drink it seemed to have an effect (possibly placebo) so would help me another time. At one point I seemed to me popping a Murray mint in my mouth every few minutes! Hope you too get sorted/seen quickly.

Hi to everyone else as well, hope all is going well.

Nicky x

Chocolates
Member

Re: Diagnosed with cardiomyopathy

Haha Waveylocks - yes it is my LVEF which I'm referring too.  Thank you for the welcome.  I agree, the palpitations are the worse for me.  I'm actually walking fine and no real breathlessness on exertion or climbing stairs.  But the palpitations are coming thick and fast now.  Will be pleased to get some help with these.

 

can I ask when people get theirs?  Mine tend to come in the evening, usually after I've eaten and then often when I'm in bed reading before I go to sleep.  Btw I'm reading the poldark series just in case yu were wondering about what I was reading which might bring on palpitations!!!!!!!

 

ill check in tomorrow with my news and will ask for a thyroid check - thank you for the advice.

 

hxx

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Oooh yes Nicky am sure you are right!!! Lol! Think my brain function has taken a  further dive since starting back to work!! Sorry Chocolates!

Yep still beating my head against the brick walls waiting for GP appointment to get re referred!! Am doing well though but feel it's time they looked at reducing meds. 

 

How are you?  Xx 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi ladies, and welcome to chocolates, glad you found this thread as it may help.

I think chocolates is referring to her LVEF when she mentioned '40's', which is the magic number that us secondary ladies who are on permanent Herceptin (and in our case Perjeta) are concerned about. Or, more importantly, our oncologists and cardiologists! I'm sure she won't mind me mentioning this, just so there's no confusion, but you are right waveylocks that thyroid function should also be checked out, I know mine was when all my problems first appeared.

Hope you are all doing well and not beating your head against a brick wall if your worries aren't being listened to.

Nicky x

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Sorry to hear what is happening to you Chocolates. I hope your appointment on Friday is helpful. I remember feeling quite scared when I had palpitations which were relentless. Your heart beat is certainly low at 40 , is that causing other symptoms too such as dizziness? Have they checked your thyroid out of interest as that can cause a very low heart beat and fatigue? One of my forum buddies developed an underactive thyroid as a result of cancer treatment.....so it just a thought! Xx 

Chocolates
Member

Re: Diagnosed with cardiomyopathy

Hi ladies, I'm going to join you on this thread if I may.  Thank you Nicky for pointing me in the right direction.  I've been on herceptin and perjeta since Dec 13 - heart has always been in the mid 60's but on Monday was low 40's.  Treatment stopped and seeing cardiologist on Friday - after reading through the posts and time frames my appt is quick because I'm a private patient.

 

really I can't say anymore at the moment, but when I've seen the consultant I'll check in with you.  

 

Hope you're all doing as well as you can,

 

Hxx

 

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Thanks Nicky -you are so right!! 😊😊

I know I'm lucky as I have done well. But am extremely unhappy with this cardiologist who spouted ignorant nonsense about my thyroid and has refused to listen to me or my endocrinologist who has written to him. I was told the heart meds were temporary at the beginning but even though am on the max dose this cardiologist has no intention at all to EVER look at trying to reduce -blood pressure is almost on the low side, pulse low......in my simplistic reasoning I would have thought this was an indication that they could start to tweak the dose....He told me the meds were for life.....so different to what he said last time and seems to have made this decision based on no further tests or assessments -am shocked. Last echocardiogram showed LVD had repaired which is great so long term meds....why?

.

I have contacted my endocrinologist who am hoping to talk to in the hope that he can help further though not sure what he can do. There is a danger that if the GPs listen to the cardiologist they will reduce my thyroid meds further and I will be under treated -the consequence of under treatment is heart failure amongst other stuff! So I clearly don't want this.

 

i contacted Macmilllians and spoke to a nurse who was genuinely concerned suggested I seek a second opinion. So will ask my GP for a referral to the Brompton. I did ask her before I had this appointment but she wanted me to wait as she was desperate for me to be seen and thought the BRompton would be longer. I doubt they would see me more than a couple of times  down there as there is no need but hopefully they could offer advice on minimising the meds. I was told by my Oncologist that left ventricle damage was a clear consequence of Herceptin. I had no heart problems at all before cancer treatment/cancer. Nor any history in my family! Logically it doesn't make sense to blame it on a condition that I've been stable and healthy for years!! Sigh...

 

I have to to smile though as the stress of dealing with this cardiologist is enough to put anyone's blood pressure up!! Haha

 

How are you? Are you all moved in and settled to your new house? Xxx

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi waveylocks

No wonder you're frustrated and I don't blame you! This unfortunately is exactly what happens at times when you have two conditions that there's no expert for to deal with them both.

Its a bit surprising that the cardiologist felt there was no link at all with either breast cancer itself or the breast cancer treatments that may have contributed to your heart problems. In fact when I mentioned earlier in the thread about my radio interview the whole reason behind the timing of it was to highlight the conference that had taken place that unveiled research that showed cancer itself causes heart problems! Hmmmm.

As a suggestion try and download one of the MacMillan leaflets which is supposedly given out to GPs and highlights what to look out for. Then take one to your GP and have a chat with him/her to say that you are unhappy with the appointment you had and possibly get a referral to The Brompton? Even if you just had one appointment there they may be able to tell you whether your heart problems are related or not and whether you are on the right combination of drugs.

Hope this helps but it is so annoying, time consuming, frustrating when we have to fight our corner!

Nicky x

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Am so sorry everyone I need a rant......as been to see cardiologist today.  Disastrous so feel free not to read on further!! 

 

He told me Herceptin does not cause heart damage! & that chemo can but not in my case! He believes that my heart problems which included left ventricle damage are purely down to over treatment for an underactive thyroid!! He could offer me no scientific evidence to support his claims, had not looked at the 48hour trace done 6 weeks ago or looked at the blood test for my thyroid -which my GP surgery said were in range and fine!! Am fuming. I won't go with all he said but I stood my ground and told him that he was incorrect that my thyroid treatment had kept my thyroid hormones in range to whic he said -am a cardiloogist I don't know about thyroid -precisely I siad. Why is he not listening to my endocrinologist who treats my thyroid??? Arggggh.

Then he told me I need to stay on the heart meds for life (not what he said last time) and my heart is good so doesn't need to see me for two years.....so am completely confused!!

 

Anyway am now seriously thinking about asking to be referred down to the Bromptom Hospital as he clearly does not believe in cardiotoxicity due to chemo/Herceptin. And I had absolutely no heart problems before those treatments. I really want to see someone who knows about it and will work with me to minimise my meds no leave me on the maximum doses for life when ECHO looked fine apart from slight thickening of heart wall...nothing else. 

 

Am seething with anger......

Rant over!!

xx 

 

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Lovely to hear from you Nicky. Am glad the higher dose of meds has helped 🙂  They can make such a difference. So keeping my fingers crossed for you that the Echo shows improvement. Bumping this post has reminded me that I've been letting my walking slip -need to get it back on track....lol Glad you got links at your local hospital too -that's reassuring as at least you know they're not far away if needs be. Am hoping that this year turns into a much better one for you. 

 

was very tired after yesterday's work day...so will see how it goes. Fingers crossed. I'm the only bread earner so needs must and all that.

 

And yes I for got to say Happy New Year to Everyone -here's to being able to enjoy it in whatever form works for us that is not too exhausting. Cheers!! 🍾🍸🍸at least virtual alchohol is completely safe!! Haha!! 😊😊 xx 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi

Great to see this being bumped up, I had been thinking of doing the same myself.

Also it's good to hear that things are going well for you waveylocks, in all areas of your life 😊, well, the ones we know about at least.

i am due another echo next week, having had one in early January as I'm still being closely monitored. One of my heart meds has been increased quite a lot and this does seem to make a difference to the actual way I feel, just hope that it translates to a better EF reading! I am also now back on the radar of my local hospital which is nice as I have a point of contact should anything be of concern and means I don't have to travel up to London to see my specialist if it's just for a routine check or discussion.

Hooe everyone is doing OK, and a belated Happy New Year to you all.

Nicky x

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Hi Everyone,

 

Just bumping this post as its gone quiet. Wondering how you all are?

 

My scan showed a non cancerous polyp in gall bladder so have to see a surgeon but am much relieved! My heart seems to have settled down on the meds so am hoping Consultant will start to wean me off. I do have more energy so think I've been lucky.

 

Started my return to work....seems strange after all this time!

 

Thinking about you all xxx 

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Glad to hear your feeling better now your meds have been increased Nicky 😊Yay!! 

 

Am glad the cardiologist is taking you seriously Penny. You have so much on your plate at the moment. I wish your hubby good luck with the chemo and hope all goes well.

 

Am gonna have to eat my words. I did lower my thyroid meds a little as I was a touch over treated. Am amazed to find my BP has dropped loads!! Infact I felt dizzy this afternoon as it was a tad too low!! One extreme to another. So the cardiologist was right!! Bless him! Only problem is am now gaining weight despite being really careful what I eat. Sigh....aiming to loose a stone and half. 

 

Happy Christmas everyone. Tra la la... I hope you manage to have some fun🎄🎄xx

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi ladies

Hooe everything is going in the right direction with all of us. I certainly feel better now that some of my meds have been increased to help with the high BP but we'll see once I have my next echo in early Jan.

waveylocks, good for you for standing up and challenging decisions especially about your thyroid condition which you obviously know about in great detail! Hope that the beta blockers don't interfere with the meds for that as they are a very good medication for heart failure as I've been told. Let's hope it all keeps improving.

Penny, yes, you're probably right, and will just have to get on with it but at least you're being taken seriously and now have contact with cardiology for follow ups. Sorry to hear your OH may be needing chemo, I hope it's kind to him but kicks the cancer in the butt!

have a happy Christmas everyone if I'm not on here before then.

Nicky x

Penny47
Member

Re: Diagnosed with cardiomyopathy

I've just been to see the oncologist-saw the Senior Reg.  She had had a look at my records and said I was never on high enough levels of Epirubicin to cause toxicity.  So they think it is a mystery that I have heart failure.  I suppose I might be one of these people whose cancer directly causes the heart problem.  I did have a chest infection at Christmas but never had a temp and didn't need antibiotics, so I doubt that caused this.  So I have to go on with the treatment and put the cancer treatment out of my mind- not an easy thing to do, especially when my OH may be having chemo before long. 

 

Yes we do all need some Christmas cheer- it's been too dark outside!

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Thanks Penny. Yes have developed a real strop approach. Saw the said cardiologist who surprisingly was really pleasent. I liked him!! However we ended up in a fairly long discussion as  he focused on my thyroid blood tests results (I have an underactive thyroid) and frankly only a fool takes me on on that subject after ten years of dealing with it!! Am sending him some reading!! 

Anyway the good news is that the echo showed great improvement. He wants me on the Ramipril and cardivilol for two years and is uncertain if I'll get off them. Hmm. The beta blocker is messing with my thyroid hormones and I know if I carry on the current dose it will end up making me ill. Frankly it could now be the cause of my 'persistent' high blood pressure. My GP agrees with me. So am watching the two specialists (thyroid and heart) battling it out!! But feeling happier that I'm making progress.

Saw my Onc and had to disclose been having some pain in my side so got to have a scan. I think it's gall stones -fingers crossed- but came home in tears as I don't know it was crushing to see my Onc whirl into action once more.  However if I'm clear don't have to go back for a whole year. 😊

 

So a big thanks to you fantastic ladies -it was thanks to you that I could stand up and fight my corner. 

 

Hoping you're all getting ready for the Christmas festivities and have fun and a good laugh. A bit of a cheer will do us all good!! Hugs xxx 

 

Penny47
Member

Re: Diagnosed with cardiomyopathy

Waveylocks - well done!  And thanks for the link to the leaflet.  Patients need to tell doctors what to do in the new NHS it seems.

 

What is all of this whining among professsionals that this is a rare complication of cancer?  I was told when I signed the consent form for chemo that the incidence of heart problems in chemo patients is 1 in 10.  You think they would see a lot more cases. Do tehy miss them because they are not very skilled to look out for them, or because they don't want to?  Or because they hate causing harm to patients?.  But also I think a lot of chemo patients have got so many concerns this is not very high on their list, they don't realise what is happening (I certainly didn't).  So that juist emphasizes the importance of including us in the list of people who need to have routine ECG's and echos..

 

A ray of sunshine: I'm only 68 but I can remember a time when breast cancer was missed by professionals and where it was thought of as rare.  We all know what raising awareness in doctor and patient can do- Breast cancer is now the most common but is also the best-known cancer.  As I have explained on another thread here, my husband has secondary melanoma (not a rare condition- it's number 5 on the cancer league table- which was missed by the GP-it is an easy thing to overlook, apparently) and the provision for him is really scrappy- we're having to go 30 miles away to get him under a surgeon as the local one has gone two years and not been replaced-this is to do an ANC; the wait for that op here for BC patients would be at most 6 weeks and he's been waiting almost 2 months.  Also the palliative chemo he needs isn't available as it is all pharma funded.  So we really are blessed with the provision we have for BC!  It's just that he's got the wrong condition.

 

Now when it comes to cardio, I think you we have crashed into a real muddle- I am not at all pleased with what we have here- the delays, poor communication etc.  I am probably getting the treatment I need but people like us who are battling exhaustion and fighting for breath should not have to fight like this. Well that's enough of a rant.  Back to my basket to write a few more Christmas cards.  We've got the whole family coming; I'm not sure I want to add hospital visiting up and down the motorway to the list of Xmas outings!

 

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Thanks Sheel -but it's down to yourself, Nicky and others that I have learnt so much. Really hope the leaflet gets out there and others don't suffer but I've a feeling some follow up will be required!

 

Having got my appointment for Cardioogy they then rang me to tell me I'd been booked to see the Consultant on Monday coming (even better thought I) but now are cancelling because I'd been assessed as needing to see the lead nurse practioner and don't need to see a consultant!!!! I've never said NO so fast in all my life, they then said that the consultant am booked in is not the right one as I need a general one!! OMG!! But he is the one dealing with my case from afar via Onc said I. Upshot is now have two appointments to see the said man -sick of the argy bargy and am now ready for war! BP must be sky high now!! Have no faith in them now really -just get me through Xmas/New Year and then am off to Mr L if I have anything to do with it. It's a complete utter shambles just as you predicted Nicky! 

 

Hugs to to all you wonderful brave ladies on this thread. Xx 

Sheel
Member

Re: Diagnosed with cardiomyopathy

Hi

Fully agree with Nicky - well done Waveylocks - well well done both of you.  I'm so  pleased to see this leaflet published and may it save some people the awful stress most of us on this thread have been through trying to understand what is happening and accessing the right treatments at a much earlier stage.  Wishing everyone well x

 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi waveylocks

Yes, I'm assuming it is as it was printed/published in October of this year and I see my consultants name included - I know he was a contributor, if not the main source of information regarding this problem. I was told it was going to all GPs ie the primary medical preactitioner that the leaflet is aimed at. Well done for tracking it down and it's worth everyone on this thread being aware of it to mention to GPs if anyone is struggling to get referrals etc.

Nicky x

 

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Hi Everyone,

I found this on the Macmillian website, dated Oct 2015. Is this the leaflet you were talking about Nicky?

 

http://www.macmillan.org.uk/Documents/AboutUs/Health_professionals/Consequencesoftreatment/Heartheal...

 

 

waveylocks
Member

Re: Diagnosed with cardiomyopathy

Thanks Nicky -yes I thought the same as you with Xmas coming up. Am maxed out now on Ramiprimil & my endo doesn't want the beta blocker raising -infact wants me off them ideally -so nowhere to go if I need a further increase. So fingers crossed am ok until I see the Cardiologist. Cardiologist is confused because he would expect to see more LV damage -mine improving but BP & heart rate still too high & much higher comparatively to LV impairment. So apparently this is conundrum...

 

Do do you know when the leaflet's coming out to highlight the heart issue to doctors? My GP said it was very rare too -she had no previous experience of it & she's a very experienced GP. Lol... Xx 

nicky08
Community Champion

Re: Diagnosed with cardiomyopathy

Hi Waveylocks

At least something seems to be happening now.  I think what the Brompton and the research team there want to get out as a message is in fact this is not an unusual reaction, it happens quite often but most cardiologists don't associate heart problems with cancer treatment.

When I had my referral initially it came through in about 4 days ie I went to the clinic within 4 days of my oncologist referring me! They may be busier now but I certainly got to see Dr L much sooner than I would have done had I waited for my local hospital. However with all the shut downs ie consultants being off at Christmas (!) then you may be best to stick to the appontment you get as long as it's early January - I'm sure you won't want to be left in limbo even more.

Nicky x