Heart damage from EC Steroids / Quitting Chemo

So sorry that you have had all this additional anxiety.  Cancer is enough in itself, isn't it?  I had 3 sessions of EC with relatively little side effects.  Then I had one treatment of Docetaxel.  I had diarrhoea and vomiting from day one.  After 5 days I decided that I needed to speak to someone. (I live alone.) I was asked to go to A&E.  I was not looking forward to the long wait but when I got there I was admitted and spent most of December last year in hospital with ulcers from my mouth to my anus.  I had severe internal bleeding and could not eat or drink during this period.  I was intravenously fed and a constant drip of saline. I have never felt so ill.  The oncologist said it was a severe reaction to docetaxel and stopped the chemotherapy.  I had already decided that I would not have any more.  She said that she had only seen a similar reaction once before.  If you are not happy with the docetaxel I would refuse any more sessions.  It is not worth damaging your heart.  I had several echo cardiograms as they seemed concerned about my heart but never said why I was having so many. It certainly seemed to beat much faster than normal and is only just settling down.  If you are concerned about the chemotherapy don't have it.  It is your decision and your body, so even if the oncologist is not happy, do what you feel is right for you. Good luck and I hope that you will make a full recovery.  Take care.  Sending you a hug.

Thank you so much Thirds! I am sorry you had such a rough time. I had terrible mouth ulcers after my first Dox, so I am really feeling sorry for you having them through your entire body. I was clawing to get out of the hospital after a day.

I know I want to stop the chemo, because i can't see a safe way to go ahead with it. I think I'm just feeling guilty for quitting, and am worried about being bullied into it by the oncologist. I am looking for confidence in my convictions i guess.

Sending you hugs back. I hope everything is going well for you and that you have an awesome December this year.

Fiddlesticks do not be bullied into anything that you don't feel happy about.  Do not be intimidated into feeling guilty about your choice for your body. I was concerned before I saw the oncologist after my spell in hospital.  I had decided not to have anymore chemotherapy. Fortunately I walked in and she immediately started to apologise for what had happened and she said that she would not be willing for me to continue with the chemotherapy.  I was very relieved.  If you have already had mouth ulcers through it, do be careful as it can attack any mucous membrane in the body.  I had bleeding ulceration throughout my body.  It was distressing as every. time I went to the toilet to urinate there was a large amount of blood and mucous.  I had to wear incontinence pants and even then it soaked through and onto the sheets, all very humiliating and unpleasant.  Follow your instinct on this one and don't take any chances.  Thank you for your good wishes. 

So sorry to hear that. It sounds horrible and very serious. 

I also have terrible reactions to steroids. I only recovered from steroid suppression of my pituitary and adrenals in May this year. That was from my asthma inhaler, so let alone the high dose oral Dex the oncologists prescribe us. 

Steroids do mess with my heart, but EC chemo is also well known as cardiotoxic. 

After cycle 2 of EC chemo I had tachycardia and rang 999. Spent a day for that in A&E. 

I have had 2 heart echos. One before chemo and one because I said EC chemo was making my heart feel extremely odd, with weird fast beats and odd clunking thumping feelings. the second echo was done, but all I was told was LVEF 59% and chemo resgistrar said ok to continue chemo. 

I also had ulcers, and also painful intestines (sharp with some blood). 

You are in a much better position than me with your cancer (mine is stage 3, grade 3 with multiple lymph nodes, HER2+++). In your position and the good reaction by the breast lump, I would stop chemo and move on to surgery. 

Hi fiddlesticks  I had EC x 6 minimal SE until 5&6 then fatigue ,headaches etc but no problems with heart . 
After chemo I was on Herceptin every three week x18 .
I was given a echogram prior to starting Herceptin then every 3 month until after I was finished Herceptin .

To my knowledge this is general practice as Herceptin can cause problems with heart . 
So base echo done  then throughout then after . The damage that is caused can be repaired the treatment resumed . I suffered no heart problems . 
Remembering that this is what I was told by my oncologist and thru reading leaflets at my hospital .
Have you already been on Herceptin ??

I would certainly ask the question about Herceptin if you are already having problems 

Found this online more or less what I was told 

Herceptin use can cause heart problems, including heart failure, high blood pressure, and arrhythmia (irregular heart rhythm or heart rate). Receiving Herceptin with medications called anthracyclines can increase this risk. Examples of anthracyclines include doxorubicin and daunorubicin (Cerubidine).27 Aug 2021

I can't comment on the heart problem but I can tell you that I didn't have the last taxotere dose. After 3 x FEC( nowadays most oncologists drop the F) I had 2 x taxotere but the Peripheral Neuropathy I developed damaged my feet and I couldn't walk. The oncologist didn't think I could take another and chemo stopped. He told me that the amount of chemo we get is guesswork. Six seems to be a successful combination but he couldn't say missing one would make a difference. In fact he said he felt if the cancer was going to come back, it probably would anyway. I am glad that during the last 6 years, this idea has been pursued and not everyone has chemo these days. I just wanted to reassure you that I only had five doses of chemo followed by radiotherapy  and my cancer has remained clear since my lumpectomy 7 years ago. I had TNBC which is considered quite dangerous.

I hope tomorrow you will be heard by your oncologist or at least they can reassure you further treatment won't cause more problems.

Take care. Love Karen

That's really interesting. Great news about your cancer remaining clear. 

Quality of life is so important, and neuropathy can affect it badly I think. 

Great your oncologist was open about chemo - they have a guideline number of cycles don't they, but a lot of people stop earlier. I can't see myself coping with 12 Paclitaxels. 

Fiddlesticks is only stage 2 with no lymph involvement, and in their case with those symptoms I would stop chemo. 

Yes, Paclitaxel needs less steroids than EC chemo. They gave me 4mg Dex pre-meds and I didn't need anything after treatment. I had 3 days of steroids and anti-emetics after EC each time.