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Long Term Side Effects of Chemo

33 REPLIES 33
waveylocks
Member

Re: Long Term Side Effects of Chemo

Hi Heather,

my dry skin is due to treatment -am on Letrozole -estrogent blockers can cause dry skin.

 

if you are going to get yourself tested for wheat intolerance you should not stop eating it. You need to be eating it twice per day otherwise the tests will not show up your intolerance. Am guessing you mean getting the tests done at the GPs. So keep eating it for at least 6 weeks before being tested -very important. Am afraid it's quite common for people to have a negative result the first few times. Check out the site called B12Deficiency. And also look up Gluten intolerance. 

 

Might be wise to get your B12 & vitamin D checked too. 🙂 

 

This is not the same I know so please forgive me, but my little dog was diagnosed allergic to all grains three months ago  -since alternating her diet her coat is shiny and her skin is no longer dry!! Shiny and glossy. So our pets get it too!! Hope I've not insulted you! I keep my grains to a minimum as though am not gluten intolerant they definitely cause me bloating etc.... Xxx

Heather_202
Member

Re: Long Term Side Effects of Chemo

Hello Wavylocks

 

Thank you for replying to  my post - sorry for delay in answering you - I don't log on very often.

 

The update today is that after a week of anti-biotics my hands have cleared up nearly back to normal. I swam for the first time in a week yesterday and all I got was some minor tinging sensations and no full blown itching.

 

I've already started down the wheat-free route for pasta, cake and biscuits and totally avoided bread & I do think that is helping. Haven't had my blood tested for wheat intolerance yet but it will be interesting to see what the result is.

 

Thanks for your recommendations-emollient is now my new best friend, lol ;oD

 

Is your dry skin something you've always had or worsened after treatment?

 

Keep well and let me know if you have anymore thoughts on dietary changes.

 

xxx

waveylocks
Member

Re: Long Term Side Effects of Chemo

Hi Heather,

Am sorry to hear about your skin problems. Must be painful and distressing. It sounds like an allergy. Has your doctor checked this? 

 

Ive not experienced any skin problems except dryness. I know Eczema causes dry skin as my son has it and a key part of managing it is too keep the skin moist so he has to use emollients or his skin cracked and is sore. He is very sensitive to certain soaps. 

I have drier skin since being on Letrozole -due to lack of estrangement am told. 

Am also far more sensitive since the treatment and have had some reaction to fillers in tablets. But nothing ion the scale you are experiencing

 

Am sorry I'm not much help....lol

Has your GP referred you to a dermatologist? 

 

Hugs xxx

Heather_202
Member

Re: Long Term Side Effects of Chemo

Hello

 

I'm sorry to read through the issues you've all been having since chemo for bc - I'm hoping somebody can help with my problem?

 

I am interested to know if anyone has had any skin problems similar to my own. I was dx Oct 2010 tnbc - had double mx, FEC-T & 15 or 20 rads (can't quite remember without looking through old hospital letters - which have been long stored away - out of sight-out of mind!) and finished all treatment in May 2011.

 

I have been incredibly fortunate to have had 5 (relatively) healthy years but am now wondering if some symptoms I've had this year could be related to past chemo? I've developed intense itching on both hands, wrists and inside of elbows. Initially GP put me on a mild steriod cream and I've tried to keep my toiletries organic/fragrance free. I resorted to wearing cotton gloves at work and also found an alternative cream (Mahonia Aquifolium) which seem to be helping. However, a recent flare-up (swollen, red hands, broken weeping skin,) has meant anti-biotics and I'm now wondering if there is a link to wheat-intolerance in my gut or that my system has developed this intolerance as a long term side effect to chemo? I'm due to have a test for celiac disease - which  from what I've read is an auto-immune disease from early years - so again am wondering, could chemo 5 years have brought this on at my age of 47? 

 

I would be very grateful to hear if anyone has had experiences like this?

 

Many Thanks

Heather xx

Penny47
Member

Re: Hi,I just need to vent. I am really struggling at the mom...

Bettie I am so sorry to hear you are going through this.  You need help with the pain to sort out the blood pressure as pain can push it up.  I hope your GP is on the case.  I have just been diagnosed with Heart Failure , 2 years after chemo.  I have been learning that cardiologists don't always communicate well with oncologists so I have been in touch with the breast care nurses who have been brilliant, and who I poured my heart out to cos we don't have cardiac nurses in my area. My BCN tooko my case to the Multi-Disciplinary team and now I have my annual appt with the ONC in 3 weeks so he will be all prepared I hope!  Integrated cardio-oncology is available at some hospitals like Royal Brompton.  We have a parallel thread about this called "diagnosed with cardiomyopathy" that I started before i found this one.  Hope you find it helps. 

Bettie
Member

Hi,I just need to vent. I am really struggling at the mom...

Hi,I just need to vent. I am really struggling at the moment. Alongside endless trips to hospital for my Heart Condition I am in a lot of pain with my ongoing trouble with my inoperable perennial hernia. I am on so much medication and feel like I am sinking. I'm normally a strong person but am feeling desperately weighed down. I cant talk to my husband or family as they already are dealing with my shock diagnosis of heart failure.

waveylocks
Member

Re: Long Term Side Effects of Chemo

Thanks Nicky,

I think you are amazing! I heard back &  now have an appointment early next week with my oncologist -the practise nurse said she & the other docs were saying I need a cardiologist. So will discuss with the Onc. I wonder if he has heard of them and their work with oncology patients. You would hope so....  Xx 

nicky08
Community Champion

Re: Long Term Side Effects of Chemo

No problem Smiley Happy Anything I can help with please ask. The first day I was there it was a full on morning of tests: echo, ECG, heart MRI, blood tests but by the end of the day I had a treatment plan in place and confidence that they could help. For me I had so much wrong I did need a couple of procedures done (cardioversion and eventually cardio ablation) but this isnt the case with everyone believe me. Subsequent appointments (3 monthly) have been for an echo/ECG and then see the consultant so not quite so long and all my medications (that they wrote to my GP to presribe) are prescibed locally and collected with my normal bag of stuff!  The BRU is the Biomedical Research Unit and all the work they do is also helping future patients - I call myself their best guinea pig!  

Good luck if you find some good cardio help and advice locally but if not I'm sure they (The Brompton) would be able to help

Nicky x

waveylocks
Member

Re: Long Term Side Effects of Chemo

Hi Nicky,

Thankyou so much 🙂 Really appreciate your posts. I have looked on the site and in the end found the page about what they do & noticed the early intervention. I would really like to go to see them -I live a long way north from them though my sister lives near London so could break the journey up. I expect they wouldn't need to see me much but could give good advice over what they could be doing to manage it and stop it getting worse/recover. 

So have chased the hospital yet again -my oncologist is on hol but the practioner nurse also expressed concern for me but second day of waiting for one of the doctors to phone me...lol. 

Thankyou Nicky xx 

nicky08
Community Champion

Re: Long Term Side Effects of Chemo

Hi again, I have looked at the Brompton website and it's not obvious about the work they do in the BRU but if you go into ithat part of their site is does say they research chemotherapy-induced cardiomyopathy as well as other treatment-induced heart problems. I was very similar to you in that I would get the beneficial effects of the drugs for a day or so but then need a dosage increase, but I found that more local consultants, ie not world class in the same sense as they are at The Brompton, were reluctant to change too quickly. As is the norm. However at the BRU they know so much and have such informed choices I went away from my first appointment there with the first ray of hope that I'd had in years, and, what's more important complete faith in the consultant I saw. I could talk to him about my chemotherapy options as well and know that the two different areas of medicine would be in harmony rather than completely out of phase which is what happened at my local hospital. Each department there is an expert in its own field but had no idea about the other condition i suffered from. Btw I was also told the sooner you get treated for these treatment induced heart problems the easier it is to help get it back to normal or close to.

Nicky x

waveylocks
Member

Re: Long Term Side Effects of Chemo

Thanks Nikki,

i had thought about writing to my GP making the request for referral to cardiology & copying Onc in so it is on my records. Ignorance is my big trouble and so am trying to read to find out. Will look at the Brompton site -thank you. I think you are right that it is not being taken seriously. So far each titration of meds has given me a day or two of relief before it all kicks back in again. Can't help feeling something more is wrong. I have a constant ringing in my ears -new symptom in the last 24 hrs on top of the headache (never get headaches normally).

I did ring the British Heart Foundation and spoke to a cardiac nurse there -she was quite horrified that I hadn't been referred & the helpline nurse on this site also felt the same. xx 

waveylocks
Member

Re: Long Term Side Effects of Chemo

Thank you Belinda & Sheel.  I really appreciate your words of wisdom and reassurance. I have had palpitations/rising blood pressure looking back from the start of chemo -it's just they got a lot worse from three months ago & have relented but seem to be gradually getting worse. The new dose of heart meds is helping though I woke in the early hours again with palpitations and a headache once more -sitting up helps the palpitations but not easy to sleep like that.....lol.

No Onc didn't see the need to refer last week and I suppose if cardiology can't do anything more for me maybe there is no point. Shame this is not explained to me though!! Guess I must be more trusting and wait to see what I'm like once they've titrated me to the maximum dose of meds they're recommending. Thanks.

 

Thanks for the warning re the future though am told that my heart damage is temporary caused by Herceptin. Hope they're right. Xx 

nicky08
Community Champion

Re: Long Term Side Effects of Chemo

Morning ladies. I've just replied on the other heart/cardio thread ski won't repeat myself but just add a bit more info for waveylocks. I find it completely unacceptable that you have been told not to involve A and E when heart issues are so scary and to be frank can be dangerous. My heart was also racing like mad and I had atrial fibrillation, neither in itself a major issue but put together they can be. I would suggest anyone who is interested looks on the internet at The. Brompton Hospital BRU and it shows the work they do. It is NHS so not private and therefore open to anyone who is referred there. The unit has been specifically set up because of the heart issues caused by oncology treatment be it Herceptin or chemotherapy as it is more recognised now that more people, men and women will suffer with this as we now live longer after our cancer diagnosis. I could not recommend them higher and a lot of it is just the reassurance that you are seeing someone who understands BOTH of your health issues which is what I needed two years ago. Some people who I see there are just going for regular check ups after medications have been prescribed and all of the cases they see are of course adding to the data that all cardiologists will hopefully use in the future. As for waveylocks there are medications for a racing heart which can be added to your mix of drugs, at the beginning of my treatment I was on blood thinners (for AF), beta blockers, a diuretic, Ramipril, plus another drug that slows the heart beat down when it is racing. The consultant I see there described the heart racing as being like constantly running a marathon so it has no time to recover and this will weaken it so that does need to be sorted IMO. Sorry to be so dogged about this but it really is an issue for those of us that suffer with both conditions and there is very little combined knowledge, I had to learn the hard way by having a TIA (mini stroke, luckily no long term side effects) before I had my heart condition treated seriously.

Please feel free to ask any questions about any of this, I know way to much about both conditions because I've been forced to!

Nicky x

belinda
Member

Re: Long Term Side Effects of Chemo

Completely agree with Sheel's EF explanations Penny. Must have been scary for you Wavey but seems your docs are watchful and not overly concerned, still not a nice experience for you though. A cardiac referral sounds as though it would help put your mind at rest, if GP not helpful oncologist?
Take care all.

Sheel
Member

Re: Long Term Side Effects of Chemo

Hi Waveylocks - a frightening time for you.  When I was having radiotherapy (and this was 6 years before HF diagnosis) I ended up in A&E with similar symptoms to yours and kept in overnight for observation.  No follow up from cardiology and it seemed to me that neither my oncologist nor radiologist wanted to know.  So I sort of shrugged it off but often wonder now if it was the beginning of my later heart issues and if I'd pushed more at the time who knows? I know this isn't very helpful for you but at least your GP is aware and taking notice and at least you're far more aware of possible future problems than I was at the time so will be far more vigilant.  Hope the medication works!! I wish you luck - getting beyond treatment is almost as big an ordeal as going through it and it seemed to take such a long time to get 'back to normal' physically and emotionally.  Please take care x

 

 

Sheel
Member

Re: Long Term Side Effects of Chemo

Penny - me again - EF is ejection fraction - its the rate at which your heart (in this case the left ventricle) is pumping blood through the body.  I understand 'normal' is around the 55 -60 mark.  As I understand it, the greatest risk is fluid building up on the lungs which can be fatal because the 'pump' is failing.  Essentially its muscle damage which is why strengthening the heart muscles is the best thing we can do alongside keeping to the medication regime which is controlling water retention, thinning the blood, stabilising blood pressure and protecting other vital organs.  Apparently you can live with the condition for years with the right combination of meds but what seems to be happening to some of us who have posted here is complete recovery ie the heart remodelling so that it is pumping normally again and unaided. Thats my very simplistic explanation and I stand to be corrected.  

waveylocks
Member

Re: Long Term Side Effects of Chemo

Am so sorry Penny I can't help you but these other knowledgable ladies will I know...

 

I found myself re-reading this thread today after being taken in ambulance yet again to A&E due to very high blood pressure and very high heart rate. Wasn't keen to go as couldnt see what they would do but the ambulance crew were very insistent. (111 had sent them) The A&Edoctor there was concerned & kept me there for the night. I know my heart problems are not on the scale that you brave ladies are dealing with but I am finding having no support when my heart is really racing plain scary. I don't know what to do. Still not referred to cardiology despite A&E recommending this twice now to GP surgery.

 

 

The following morning saw GP who doubled my heart med and put me on a beta blocker. Even though I showed high blood pressure  at 170/110 and my resting heart rate was still 125 (at least they had lowered a bit) he told me he wasn't worried. My request for referral to cardiology is denied.

He also told me not to involve A&E again even though both the ambulance crew and the A&E doctor said I had done the right thing and just ring them again when it happens. And was also the advice of my Oncologist.

To be fair the new level of heart meds are helping so far....So am I over reacting wanting to be referred? 

sorry to ask -I so feel bad about butting in. 

Penny47
Member

Re: Long Term Side Effects of Chemo

Thank you guys so much for sharing- your stories have given me hope despite all the ups and downs you have all had.  I am seeing the GP after half term to try to get some sense of the situation. I am a bit envious of people who go to the Brompton!  Somewhere in this world thre is a cardiac nurse or other therapist who I can lean on a bit.  My questions cover most of one side of A4, written small.  I shall start by asking what is an EF?

 

I wish I had learned more about the heart at school-that was a snowy winter when we lost about 3 weeks of school so I mastered the anatomy of the heart but I never understood the physiology.

belinda
Member

Re: Long Term Side Effects of Chemo

Thank you for the kind replies ladies, I've found it's isolating having these problems but not ticking the expected boxes of us. There does seem to be a growing number of us. And I think there is now the beginnings of more joined up thinking between oncology and cardiology, thanks greatly to Nicky's team at the Brompton. Still a long way to go though. X

Sheel
Member

Re: Belinder and Sheel,thank you so much for your lovely post...

Hi Bettie, hard to hear that this comes on top of other health issues - no wonder it all just seems too much to bear.  I used think my heart was broken in the emotional sense too - it certainly felt that way and it was hard to keep in control.  Utter despair, massive mood swings and rivers of tears.

I dont know what impact the hernia has on your ability to stay active ? Reading my post  back it sounds like I was up and out to the gym from day 1.  Nothing could be further from the truth - I just did what I could which some days was absolutely nothing.  But I got to thinking of my heart as an old clock that needed a good shake to get it working again and concentrated on the fact that it was a muscle and needed caring for as such. Fortunately for me other things like cholestral levels and arteries were ok so hoping thats the same for you. Do take care of yourself.

Hi Belinda - your experience sounds horrendous and devastating.  I'm so sorry.  But its interesting that your heart has also appeared to recover - whilst the medics recognise the risks treatment has, it took a while for my cardiologist to pin the cause on this and she's been open that they don't have alot of understanding of what exactly is going on. Also I've been told that my type and extent of HF is more usually found in elderly people who are likely to have multiple health issues and thereby unlikely to recover. Lets hope more research is being done into this.  But you have more to worry about than that at the moment - I'm wishing you well.  

waveylocks
Member

Re: Belinder and Sheel,thank you so much for your lovely post...

Sorry about the weird double posting -it wouldn't send saying correct highlighted areas but none were!! Lol....gremlins!! Xxx 

waveylocks
Member

Re: Belinder and Sheel,thank you so much for your lovely post...


@Bettie wrote:
Belinder and Sheel,thank you so much for your lovely posts. At last I have found someone who truly understands how I am feeling and the shock of having to deal with such a major diagnosis. I have been plagued with serious medical issues since the age of 23. I am now 54. Alongside BC and heart failure I have a perennial hernia which is inoperable (due to surgery on benign tumour in pelvis) and have been in constant pain for months. So to get this latest diagnosis on top of all that has almost been too much to bear. I am a strong person but this diagnosis of heart failure has devastated me. I feel so awful for my loved ones and particularly my aging parents who lost my brother to a heart attack at 54. Somehow I need to find strength to cope. To have someone who actually knows what I'm going through is really helpful and I also have two fantastic cardiac nurses. I wish both of you well and am sorry you both had to deal with this crap


Hi Bettie,

So sorry to hear about your diagnosis. What a shock on top of everything else and after all you have been through. The others on here seem lovely and so knowledgable/helpful.

Belinda picked another thread up I'd just started and suggested I joined this thread so hope you don't mind me popping on- though having read your post I realise am not of much help to you -so so sorry! 

 

I've just been told I have heart damage (LVD) due to the Herceptin (was half way through -stopped  three months ago & will not be restarted) as part of my treatment for primary BC. The last year been a roller coaster (as it is for all I know) being diagnose with e+, HER2+ with 7 cm tumour plus in lymph nodes, L/mas, Usual regime of FEC-T & rads & was looking forward to being through the 'biggies' of treatment......this is not the way of BC -it seems to like delivering the unexpected!! Lol..

No cardiology involvement -so feel rather scared on my own with it -clearly mine is only mild -but find the night palpitations and fatigue  wearing/limiting -stopping my planned return to work. Been on  Ramipril for just over a week. Sorry reading this back its nought really.....  

 

Hope things improve for you as the others describe. Big big Hugs xx 

 

waveylocks
Member

Re: Belinder and Sheel,thank you so much for your lovely post...

Hi Bettie,

So sorry to hear about your diagnosis. What a shock on top of everything else and after all you have been through. The others on here seem lovely and so knowledgable/helpful.

Belinda picked another thread up I'd just started and suggested I joined this thread so hope you don't mind me popping on- though having read your post I realise am not of much help to you -so so sorry! 

 

I've just been told I have heart damage (LVD) due to the Herceptin (was half way through -stopped  three months ago & will not be restarted) as part of my treatment for primary BC. The last year been a roller coaster (as it is for all I know) being diagnose with e+, HER2+ with 7 cm tumour plus in lymph nodes, L/mas, Usual regime of FEC-T & rads & was looking forward to being through the 'biggies' of treatment......this is not the way of BC -it seems to like delivering the unexpected!! Lol..

No cardiology involvement -so feel rather scared on my own with it -clearly mine is only mild -but find the night palpitations and fatigue  wearing/limiting -stopping my planned return to work. Been on  Ramipril for just over a week. Sorry reading this back its nought really.....  

 

Hope things improve for you as the others describe. Big big Hugs xx 

 

Bettie
Member

Belinder and Sheel,thank you so much for your lovely post...

Belinder and Sheel,thank you so much for your lovely posts. At last I have found someone who truly understands how I am feeling and the shock of having to deal with such a major diagnosis. I have been plagued with serious medical issues since the age of 23. I am now 54. Alongside BC and heart failure I have a perennial hernia which is inoperable (due to surgery on benign tumour in pelvis) and have been in constant pain for months. So to get this latest diagnosis on top of all that has almost been too much to bear. I am a strong person but this diagnosis of heart failure has devastated me. I feel so awful for my loved ones and particularly my aging parents who lost my brother to a heart attack at 54. Somehow I need to find strength to cope. To have someone who actually knows what I'm going through is really helpful and I also have two fantastic cardiac nurses. I wish both of you well and am sorry you both had to deal with this crap

belinda
Member

Re: Long Term Side Effects of Chemo

Hi another cardiomyopathy patient, just happened to see your post in latest posts. 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. 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. I was not expected to recover, my doctors were amazed at my latest ECG. 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: Long Term Side Effects of Chemo

Hi Bettie - Sorry I'm new to this site so not good at navigating it but I posted in reply to Penny47 who has also posted on your thread (dont know how to get back to it)  I was also told the condition was permanent and life threatening. ( I was diagnosed in 2013 - there was severe damage to the LV and my EF had been down to 5 when I was admitted to hospital and 10 - 15 when discharged)  Despite the community heart failure nurses giving excellent support and an equally excellent cardiologist noone seemed able to give any real prognosis - just that they needed to see how I responded to the medication.  I had to give up work and any hope of any real quality of life.  I just cried for months.  It felt like a death sentence but noone could tell me when or how. 

My cardiologist told me from the outset that there were instances when the heart managed to' remodel' itself and start functioning normally again but they did not understand how, when or why - just that it could spontaneously recover. She told me to walk for at least 10 minutes every day.  It was a sports instructor who was helping me (I had found the cardiac rehab programme just too much at the time) who told me that this had happened to a guy she had worked with but he was 'super fit'.  I certainly wasn't but it was at that point I thought f... it, I'm not spending the rest of my life like this and if exercise is the answer I'm going to keep on going even when it seems totally hopeless.  So I did.  A year later, my EF was back to 55 and it has continued to improve since.  I no longer need beta blockers (the side effects of which were causing extreme fatigue) and I only take Losatin and aspirin now (there were 9 or 10 different medications at first) The Cardiologist says the heart has indeed remodelled itself and there is no known reason why it should fail again.  She has called it a 'major success'.  So I think its the combination of medication and exercise which has led to recovery.  I kept on walking even though some days my exercise tolerance was so low and pathetic, I wondered how the hell I was going to get home.  Any activity meant a cost in needing to sleep and I accepted this so life just became the one or two activities I could manage that day and bed.  It was hard explaining this to family and friends but it was the way it had to be. Intensive physiotherapy on the heart is what it seems like now.

So it wasn't a life sentence.  I feel better now than I have in all the time since I was first diagnosed with BC in 2006 at age 53 ( chemo - radiotherapy - surgery - recurrence - more surgery - more chemo - a familiar story I'm sure)  Its a tough road but whatever you do, dont give up - just keep on going.  I'll be thinking of you. Much love and if it helps, stay in touch.

Bettie
Member

Re: Long Term Side Effects of Chemo

Hi where did you post your comment please?

Bettie
Member

Hi what was your diagnosis and prognosis? It's not that g...

Hi what was your diagnosis and prognosis? It's not that great for me but I'm still hoping the right meds will enable me to do things without getting out of breath

Bettie
Member

Hi thanks for your response. Unfortunately I have been to...

Hi thanks for your response. Unfortunately I have been told my condition won't get better and that it's life threatening. So it's sympton management really. I am so lucky insomuch I have two wonderful heart specialist nurses who are literally on the end of the phone and who have been a real life line for me. After going through BC as you well know this is massive shock and I'm still struggling to come to terms with it.

Sheel
Member

Re: Long Term Side Effects of Chemo

Hi Bettie - sorry to read your post and I really feel for you - its so tough.  I have just posted on another thread about this - please read it because like you, I was utterly devastated when I was diagnosed with HF but have come through it. Please get back to me if I can be of any help. 

Penny47
Member

Re: Long Term Side Effects of Chemo

Yes I have cardiomyopathy and i have posted elsewhere about this just yesterday.  I had FEC and Tax and then Mx 2 years ago almost to the date I had my cardio dx.  My symptoms aren't too strong- I get breathless walking up hills, or doing heavy housework or gardening.  Unfortunately I live in the country and to go anywhere I have to climb hills!  I am now on 5 tablets plus my anastrazole.  I am 67 and still working and this has forced my to give up one of my (3) part-time jobs and cut down on my hours in another.  I do get ridiculously tired but I have taught myself how to nap and I can nap for England now.  But I am looking for a regime where I know I am keeping fit and yet giving my heart a chance.  In fact I am much better than I was after a chest infection at Christmas when I had chest pain after walking only about 50 yards! 

 

One thing I've noticed is how chaotic the treatment is compared to BC treatment in my area and I really wish I had a cardiac nurse to help me out with that blend of counselling skill and practicality I experienced with my BC nurse when I was having cancer treatment.  In her absence I have to see the GP and I really feel sorry for them at the surgery...they didn't really like the idea of my having chemo in the first place and they felt a bit squeezed out of my cancer treatment and now they have to help me pick up the mess I am left with.  It's a hard row to hoe but I am feeling my way through it.  Any tips will be gratefully received!

 

 

nicky08
Community Champion

Re: Long Term Side Effects of Chemo

Hi

Sorry I haven't replied earlier but I don't usually check this part of the Forum, being unfortunately a secondary BC lady 😔 and also not having internet for ages since moving house. However I answered a similar post in this section today regarding cardiomyopathy which is probably what you have been diagnosed with. Basically I had heart failure after finishing FEC chemo 8 years ago but it didn't affect me too much until a couple of years ago when my heart function had dropped too low for Herceptin treatment. Being a 'mets' lady means I need ongoing treatment so this was an awful blow. I eventually was referred to The Brompton hospital in London where they have a specialist cardio-oncology unit and the Drs there completely understand and treat these conditions. I am sure you can get a referral there or alternatively your GP surgery may have a nurse who specialises in heart care, in my other post I mention another lady, with mets, who has has successful treatment this way. Medications are available to help but as my case was so extreme I did also go on to have a couple of procedures done which have reversed the damage. At the time this all happened, ie referral, I was. 51. Please feel free to get in touch on here or via PM and I am happy to help.

Nicky x

Anna_BCC
Member

Re: Long Term Side Effects of Chemo

Hi Bettie

 

Sorry that no one has been along to answer your post yet, hopefully this will bump it up so that someone sees it.  In the meantime we have a fantastic support line, 0808 800 6000, Monday-Friday 9-5 & Saturday 10-2.

 

Best wishes
Anna
Digital Community Officer

Bettie
Member

Long Term Side Effects of Chemo

I had chemo for Breast Cancer three years ago. I have now been diagnosed with Heart Failure. I have been told this is as a result of the chemo. I am devastated. I am only 54. Has anyone else had this happen.