# Heart & Cancer Issues



## listerdiesel (Aug 3, 2012)

Time has gone by, I haven't updated this for nearly a year, so for anyone that's interested, here is the latest:

It has been established that the Cancer 'follow-up' drug Herceptin has caused my heart to be damaged, and I am under the Heart Failure Team at the hospital. Pumping efficiency as measured in the echo-cardiogram process and expressed in terms of the Ejection Fraction percentage is down to the high 20's, from 45-50% in a normal healthy person of my age.

The is a known side-effect and I'm a bit annoyed that this wasn't monitored more closely by the Oncology dept., which should have known that it was a risk, the 88-page medical notes clearly state the details and also the persistence in the body after treatment stops. This didn't get across to the Cardiac people.

Yesterday's echo is being analysed and I'll have the results next week. The operator opined that it didn't look worse than previous echos but no big improvement either.

I'm on a super cocktail of drugs, my heart rhythm is irregular after a failed Cardioversion in November. It was not realised that the Herceptin remained in the body for up to 7 months after the last dose, possibly longer, so the damage has continued after I stopped the Herceptin in April, my last dose was the 3rd April. I will have another Cardioversion in March, by which time it is hoped the the Herceptin has washed out of my body.

Life goes on, I'm at work daily but not able to do as much physical work as I used to before this all started, plus I'm 72 next month so not exactly a spring chicken! 

Peter


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## Penquin (Oct 15, 2007)

Thanks for the update - it certainly sunds as if you have a handfull of problems to deal with and I am sure that you have the sympathy of ALL of us as you work your way through it.

I hope that the cardioversion in March will be successful - I have a friend who has had it four times and each time the specialists said "last one" but it was only with the fourth that the long time changes desired actually resulted - she is now able to do a awful lot of things that previously were impossible due to her heart problem and exercise in even the mildest form. So there is hope for your March treatment.

The lingering effects of Herceptin certainly need to be more clearly explained before any such treatment is taken - sadly many Doctors just assume that it is known and don't follow it through and check that their patients HAVE been told it and have understood it - they know it so they simply assume everyone else does too.....

I hope that you will keep us updated with how things go -sadly I doubt that complaining to the relevant people will make things any better but it MAY be worth lodging a formal concern that things were not clearly explained before you stated the treatment and that the effect of the Herceptin has caused damage that was not warned about in advance...... Just so that others are not put in the same position in the future.....


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## dghr272 (Jun 14, 2012)

Sorry to hear about your continued problems Peter, hope it all works out OK and you get back to a satisfactory level of fitness. I suspected there was ongoing issues as I regularly check to see if there's any progress on your bus project.

Best Regards
Terry


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## jiwawa (Jun 22, 2007)

Sorry to hear that Peter.

Yes, it's the lack of monitoring of a situation *they *were aware of even if you weren't that's the annoying thing.

It's good to hear you're making the best of it all.

Here's to improvement on the next cardioversion (I had to look that up!)


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## coppo (May 27, 2009)

Best wishes Peter for a better result in March.


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## JanHank (Mar 29, 2015)

Cardioversion in March, is this your third time Peter?
You know we are thinking of you all the time.
Remember I told you Hans has had this done 3 times, the last time repeatedly and they burnt his back & chest. He is still out of rhythm and won't have it done again. Like you, a cocktail of drugs every day.


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## raynipper (Aug 4, 2008)

Gosh Peter, never realised you were almost my age. Dunno why you always came across younger in posts.
Anyway. Medical science advances in leaps and bounds nowadays. Take heart....... pun intended.

Ray.


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## JanHank (Mar 29, 2015)

raynipper said:


> Gosh Peter, never realised you were almost my age. Dunno why you always came across younger in posts.
> Anyway. Medical science advances in leaps and bounds nowadays. Take heart....... pun intended.
> 
> Ray.


Its because he still works and we are layabouts we think he's a lot younger Ray.


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## jo662 (Jul 27, 2010)

Thanks for the update,and good luck for better results in March.


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## Pudsey_Bear (Sep 25, 2008)

You can't keep a good dog down Peter.

Hope you enjoy this silly video.


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## patp (Apr 30, 2007)

Sorry to hear of your problems. The trouble with drugs is that they almost all come with side effects. Chris got his heart problem from taking drugs for severely arthritic knees.
Hopefully they will sort you out. We all wish we could go back to our, perfect, younger selves. Just not possible. Someone needs to find the key to helping us all accept our failing bodies.


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## listerdiesel (Aug 3, 2012)

JanHank said:


> Cardioversion in March, is this your third time Peter?
> You know we are thinking of you all the time.
> Remember I told you Hans has had this done 3 times, the last time repeatedly and they burnt his back & chest. He is still out of rhythm and won't have it done again. Like you, a cocktail of drugs every day.


This would indeed be the third time, Janet.

I think that the Cardiology guy was surprised to learn about the Herceptin persistence, but at least he knows for future patients.

Peter


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## EJB (Aug 25, 2007)

Good luck to you Peter. 
I'm one of the lucky ones who's brush with cancer was just an irritant for a limited period.
Those that do suffer are always in our thoughts:smile2:


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## listerdiesel (Aug 3, 2012)

EJB said:


> Good luck to you Peter.
> I'm one of the lucky ones who's brush with cancer was just an irritant for a limited period.
> Those that do suffer are always in our thoughts:smile2:


Thanks, Ted:

Timescales are more of a worry as you get older, if you're in your 40's, 10 years treatment is not so much of an issue as it is when you are in your 70's! 

Taking a hormone pill that destroys your sex life is more of an issue at 40 than 70 though.

Peter


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## Pudsey_Bear (Sep 25, 2008)

There is no scarier time than when the Doc says Cancer, even for the less worrying ones, it is bottom clenching.


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## Christine600 (Jan 20, 2011)

Best wishes for the future, Peter!

My mum - a bit older than you - suffered similar effects from a different cure. I'm taking her with me to Spain in a few weeks. We have to pace ourselves and allow plenty of time for resting - I need that too for my problems. But travelling is still fun!


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## listerdiesel (Aug 3, 2012)

All we can do is keep positive and think of those worse off than ourselves, and by God there are a few of them!

Peter


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## Pudsey_Bear (Sep 25, 2008)

Not half Peter, I take strength from you mate, my troubles are nothing compared to yours, and of course there is _always _someone worse off then us.


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## HermanHymer (Dec 5, 2008)

Your experience and situation, Peter, make us all at this stage of life mindful of enjoying our days to the full and spreading good vibes to those around us. We all face the day, when it's out turn for the dreaded 'Russian Roulette bullet of major something failure' to strike. Routine annual health checks are worth every penny even if one has to pay for it outside of the NHS. 

My b-i-l is now suffering the effects of his years of pain-killing injections - it caused his diabetes and retinal damage. When eventually diagnosed, they said "Oh yes, the jabs would have caused it". Too little too late.

Must look up cardioversion, never heard of it. Take care, Peter, and may the force be with you.


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## listerdiesel (Aug 3, 2012)

Cardioversion is a process for 'resetting' your irregular heartbeat into regular or Sinus rhythm.

It's done under anaesthetic, and involves putting pulses of electricity through plates stuck on your chest and back which retrain the heart into regular pulses. They use a defibrillator type machine which synchronises with your regular portions of heartbeat and then sends out these fairly high voltage pulses at the regular rate. Bit of a Frankenstein job! 

In my case the irregular heartbeat isn't helping with the damaged heart, so they are trying to get it all working together properly.

Peter


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## HermanHymer (Dec 5, 2008)

Peter is a pacemaker an option? I have a fairly young-ish friend who's had one fitted.


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## listerdiesel (Aug 3, 2012)

HermanHymer said:


> Peter is a pacemaker an option? I have a fairly young-ish friend who's had one fitted.


They say not, Viv, as Pacemakers are for hearts that are running too fast or too slow, hence the name.

In my case it is irregularity that's the issue, plus the reduced pumping caused by the Herceptin damage.

Peter


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## raynipper (Aug 4, 2008)

Maybe you just need to put your feet up and relax in the sun somewhere Peter. 
I can feel my heart pound a bit when overloaded with problems (usually other peoples).

Ray.


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## listerdiesel (Aug 3, 2012)

Too busy, Ramon, lots of projects to finish but little energy!

Peter


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## icer (Dec 11, 2006)

Peter

have you had one of these done? it's a heart electric mapping,

An electrophysiology study, or EP study for short, is used to find out what is causing a heart rhythm problem like an arrhythmia.

Sets of wires go in through both sides of the groin 1 leg each you are awake a team then proceed to test and map the heart to see if they can determine the cause of the problem.

I had arrhythmia and Ventricular Tachycardia straight into resus they used Lidocaine/lignocaine and flush in increasing doses, basically a bit of a heart stopper, partly did the trick and at 5am in morning in CCU I felt it go back into sinus rhythm.
1 Year later, after lots of tests MRI etc etc I Had an EPS at st Thomas's they found an abberant pathway that was sometimes allowing the control unit to be bypassed, so Mucho speed,not nice!
One of the twelve of so wires inside my heart was directed to the spot and zap zap zap a radio frequency ablation. Burned the pathway out of existance.
The chap who performed the operation was actually one of the two doctors who saved my life a year before. My chest felt like a cement mixer then.

It is really fairly non invasive, lots of Xrays the doctor was wearing a lead suit and helmet with lead glass.
See if it of use to you

Ian


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## coppo (May 27, 2009)

listerdiesel said:


> Too busy, Ramon, lots of projects to finish but little energy!
> 
> Peter


How's the lovely Vario conversion coming on Peter, is it finished yet?


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## listerdiesel (Aug 3, 2012)

coppo said:


> How's the lovely Vario conversion coming on Peter, is it finished yet?


Haven't touched it for nearly three years, either in hospital or waiting for treatment. Three years of my life wasted, but better than being dead 

Peter


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## listerdiesel (Aug 3, 2012)

icer said:


> Peter
> 
> have you had one of these done? it's a heart electric mapping,
> 
> ...


Many thanks, Ian, I will look into that.

Peter


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## Yaxley (Jul 25, 2008)

Hope everything goes well for you in March and into the future
Ian


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## aldra (Jul 2, 2009)

listerdiesel said:


> Haven't touched it for nearly three years, either in hospital or waiting for treatment. Three years of my life wasted, but better than being dead
> 
> Peter


Hey babe

Nothing wasted, life is never wasted

I'm really upset at what you've gone through , years ago you asked about a heart op

Mine went Ok .. ish

Alberts melonoma , they gave him no time, it was deep , but he's still here

Ok lots of surgeries , but as yet he's going nowhere

My heart valve, a calf tissue , has done well

I suit a bit of a cow

But it's getting old

But me and him , well we go back 10 years

And I still thank my beautiful calf, who would have had those fantastic brown, soulful eyes

For my life

For we are one , together we keep my heart working

Fortunately he likes a bit of wine

Sandra


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## emjaiuk (Jun 3, 2005)

Peter. just seen this. Talking about side effects, I too suffer from Heart Failure, as well as COPD, and whilst in hospital for a collapsed lung, they discovered my heart medication was damaging my kidneys through too high potassium levels.. It had to be reduced below optimum to control the damage. It might be prudent to ensure your GP, (who as I understand it is in theoretical overall control of medical coordination, ) ensures your kidney is monitored via blood tests.

In my own case I have mostly nothing but high praise for my NHS treatment, but one major failing that I have come across is that medical disciplines have become to specialised, and communication between specialists could be better.

Unfortunately, again in my case. the reduced pump function and irregular heart beat, although controlled by medication caused loss of my C! at 70. Hope all goes well. with you.


Malcolm


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## listerdiesel (Aug 3, 2012)

At present, I am almost completely under the Heart Failure Team at the hospital, my GP 'looks in' but control of drugs etc is entirely via the HFT, with which I have excellent email and telephone contacts.

Like you, I have had very good service from the NHS but agree that compartmentalisation (is there such a word?) means that cross-department knowledge transfer is not good.

Peter


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## KeithChesterfield (Mar 12, 2010)

*compartmentalisation* - Dictionary *definition* and *meaning* for word

*compartmentalisation*. (noun) a mild state of dissociation. Synonyms : compartmentalization. (noun) the act of distributing things into classes or categories of the same type.

:grin2: :grin2:


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## patp (Apr 30, 2007)

Chris has suffered from this flaw in the system. He had his heart attack in Basingstoke. Care was excellent though discharge was a little quicker than we would have liked. When we got him home he was struggling to breathe. Lots of phone calls to GP just resulted in the repeated answer "sorry his notes are not with us yet"! How, in this day of technology, can this happen. He needed a certain drug and the hospital wanted the GP to prescribe it. The GP did not know what it was so kept prevaricating, all the time Chris was getting worse. I phoned the consultants secretary in Basingstoke to make sure they had been sent. The answer was "yes, but this happens all the time!"
I had to stamp my foot and insist on an emergency appointment so that they had to do something. All he needed was a basic diuretic. 


The other thing that worried me was that, after a check up at the local hospital, he was told he needed a tweak to his drug regime. They sent him home without the drugs (presumably to save their budget) and told him to get them from his GP! Another delay while the GP waited for notes to arrive!


I wonder if hospitals and Gp's have a bit of a war going on? One thinks the other has a "cushy" number perhaps?


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## JanHank (Mar 29, 2015)

When we come home from being an in-patient or visiting a specialist we leave with a letter to give to our GP with the list of drugs we need included.
We have a separate folder each with all the letters to our GP.


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## patp (Apr 30, 2007)

I think that is what used to happen here Jan. Now it does not. I asked why they could not email the GP but no it has to be done on paper. I think someone said that they do not even use the post! It is couriered. Surely they could use the patient as the courier if they are worried about security?


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## emjaiuk (Jun 3, 2005)

I've had what appear to be non dispensing prescriptions from the hospital to give to GP, which sound like similar to those you have Jan. Our GP practice is a minimum of 3 day turnaround for prescriptions though. Another aspect of 'non joined up working' is that my GP cannot access scans/a-rays, even though they are all electronic now. He even had himself registered as a visiting doctor at the local hospital group, but still cannot have access on the NHS GP system away from the hospital!


Malcolm


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## listerdiesel (Aug 3, 2012)

The Entresto drug that I take is supplied by the hospital as it was too expensive for the local Pharmacy to carry, but I believe that is changing as more are being prescribed it now.

The hospital pharmacy has a daily run to the local medical centre at Irthlingborough, and I pick it up from there, saving a trip to Kettering. My repeat prescription is issued on the 20th of each month, 8 different drugs, I'd hate to have to pay for them!

Mostly, as I mentioned earlier, my GP is out of the loop as it's all controlled by the Heart Failure Team at Kettering.

I can email them any time or phone, lovely people. I have a good relationship with my GP and local surgery too, no problems there.

Peter


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## JanHank (Mar 29, 2015)

emjaiuk said:


> I've had what appear to be non dispensing prescriptions from the hospital to give to GP, which sound like similar to those you have Jan. Our GP practice is a minimum of 3 day turnaround for prescriptions though. Another aspect of 'non joined up working' is that my GP cannot access scans/a-rays, even though they are all electronic now. He even had himself registered as a visiting doctor at the local hospital group, but still cannot have access on the NHS GP system away from the hospital!
> Malcolm


We have the report not a prescription, we also have all our x-rays on CD, the most recent my bionic hip x-ray, we only have to ask and they make a CD for us.
I even have all the old x-rays of my arthritic spine and breast cancer.


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## patp (Apr 30, 2007)

When Chris had is heart attack the Paramedics passed me his scan and the doctor gave me a picture of his angiogram. They both told me to "take good care of these". It must be common for people's scans, notes, x rays etc to go missing 


I think these "teams" are the way forward for our care. My son-in-law has Chrohns disease. He has a "team" monitoring his care. They seem very on the ball.


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## raynipper (Aug 4, 2008)

We get all X-rays in France Pat. I guess it's up to the patient to make sure they are safe.

Ray.


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## listerdiesel (Aug 3, 2012)

I asked for the X-Ray analysis of my shoulder recently and was promptly given the print-out.

No point in me having the X-Ray itself as I wouldn't have a clue how to interpret the fine and hidden detail.

The synopsis was: Severe Osteoarthritic Changes to the shoulder joints.

I qualify for a joint replacement, but they won't touch it with my heart in its present state.

= Put up with it.

Peter


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## JanHank (Mar 29, 2015)

listerdiesel said:


> I asked for the X-Ray analysis of my shoulder recently and was promptly given the print-out.
> 
> No point in me having the X-Ray itself as I wouldn't have a clue how to interpret the fine and hidden detail.
> 
> ...


Must you copy everything we have Peter :laugh:
Breast cancer, heart problems and now shoulder, Hans has had a painful shoulder for years, had 2 operations for calcification & arthritis.
I had 1 operation, for calcified tendon, it was very successful, was told it would probably return which it has.
Replacement shoulder I didn´t know they could do, a bit of hammer and chisel is more likely.
You haven't had your gall bladder removed have you?


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## listerdiesel (Aug 3, 2012)

No, I haven't, but Rita had hers removed in 2016, does that count? 

Peter


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## patp (Apr 30, 2007)

Now, now you two. Stop competing! You never know where it is going to end.


I, too, did not know they could replace shoulder joints.


I would try acupuncture if I were you Peter. Chris has had a double knee replacement (he is very proud to tell everyone that he had them both done on the same day!). He is unable to take any drugs other than paracetemol or co codamol, which hardly touches the pain. He has found acupuncture very helpful.


My daughter is a physiotherapist and tells him to ask for a referral to a "pain clinic". The specialists there will have access to all sorts of drugs and treatments for people who are unable to have the main stream drugs. GP should have details.


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## listerdiesel (Aug 3, 2012)

Email today, appointment on the 9th February to discuss Echo results and Entresto doage, and pre-op meeting on the 6th March for the DCCV (DC Cardioversion)

Appointment letters will probably be in the post tomorrow.

Peter


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## aldra (Jul 2, 2009)

I think my heart valve will soon come to its end

My calf and me wil part company 

It’s ten years and a tissue valve 

My joints are rubbish, and if I’m honest I’ve really had no help to deal with them in spite of a rheumatologist 

So I choose go out on a short shopping trip or do some cleaning , and then struggle, although I’m good at walkinglike a zoombe 

You should see the way I flick my legs to ease my hips 

Or maybe you shouldn't>>
Sandra


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## aldra (Jul 2, 2009)

patp said:


> Now, now you two. Stop competing! You never know where it is going to end.
> 
> I, too, did not know they could replace shoulder joints.
> 
> ...


True

It seems I cannot take the anti immfamitary drugs I need

Nor the drugs to stop the immune system kicking in to make matters worse when the calcium crystals settle like knives in my joints 
And I'm in pain and feel flu like symptoms

Sometimes I do , the pain can be really bad, and I think stuff the kidneys just relieve the pain when it's gone on night and day, and I can hardly walk or sleep

I must ask for referral to the pain clinic

You'd think the rheumatologist could

But it seems it's a different department

Sandra


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## patp (Apr 30, 2007)

Go for it Sandra.


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## listerdiesel (Aug 3, 2012)

Interesting little postscript:

I contacted Roche Pharmaceuticals last week to enquire about more data on Herceptin, the drug that we think damaged my heart (It's a known side effect)

The young lady I spoke with was very helpful but couldn't answer my question directly and promised to look for more details.

I had a call from her yesterday, asking if I would be prepared to let Roche contact the hospital and discuss my particular case with them. A consent form is in the post.

Unexpected, but might provide some information that would be useful.

Peter


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## patp (Apr 30, 2007)

Hope something positive comes out of it for you Peter.


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