Starting ECX Chemo.

Dear All

I posted here prior to my oesophagectomy op and received so much helpful advice which I took on board prior to and after my surgery. I felt listening to other peoples experiences have helped me through some of the darkest and most difficult times whilst I was in hospital and in recovery. Hearing your stories I knew that there was hope and light at the end of the tunnel, hence why I'm back to ask more about peoples experiences of having the ECX chemotherapy.

My op was on the 21st Feb all text book and recovery although rough ride at the start I was out within 9 days. I did get a slight infection on my lung and subsequently given a course of antibiotics. I as given my pathology results last week which showed that the cancer had spread to my oesophagus wall therefore confirming to us that the operation was the right way to go. They had also remove 23 lymph nodes in which 22 clear but 1 showing the presence of cancer. As consequence to this the surgeon has recommended that I do chemo as a 'mopping up' exercise, which I'm gutted about but completely understand the whys!

Yesterday I went to see the oncologist who has told me that I will be having the ECX chemotherapy- 6 sessions. I'm aware that most people prior to op have 3 sessions prior and 3 after- but I'm concerned if my body will be able to withstand the 6 sessions in succession. I'm absolutely dreading it as I didn't cope well with the drugs in hospital and required a lot of anti-sickness, and now this which I hear can be brutal! The Dr informed me that they have a window to undertake the chemo in being the max 12 weeks from surgery - on that basis they have recommended that I commence the week after next so I will be nearing 6 weeks post op.

I would appreciate your honesty, experiences and advice if you have any to help me, my husband and my young boys through this period.

Kindest regards,

Jo

13 Replies

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  • Jo

    I guess you know what I will say here.

    You have done so well to get to this point, you now must see the last bit through. Try to think of it as the winning post that you just have to get to, before you can return to a relatively drug free lifestyle.

    I did not tolerate the ECX, before or after my surgery. To be precise I did not tolerate the Cisplatin part of the ECX. But my Oncologist was sympathetic and did vary the drugs to try and help me through. I was not in pain and did not really suffer too much nausea. I just was very weak. I hung on for as long as I could manage and then by mutual agreement we stopped it. I think I managed about six weeks, after surgery, out of a planned nine weeks.

    Now I have since learned that I may have been part of my own issue!! I am told that it is likely that by not drinking enough water each day, I was severely dehydrated, which made me very weak. That is a cyclic condition. You don't drink enough, you get weak, then you don't want to drink.

    Try and tough it out and drink as much water as you can possibly manage, then have some more.

    Good luck. Nearly there now.

  • Thank you so much for your reply and opening up about your own personal experience of ECX. I remember during my first initial meeting with the Dr that she mentioned that the Cisplatin is actually the most gruelling of all of the 3 drugs. I will definitely take your advise about drinking water - although I am the worst water drinker there is, my husband is always moaning at me that I don't drink near enough water. I think I better change that fast!

    I was so sure I was over the worst of it all with the op and now facing this I'm extremely anxious and nervous. I'm still adapting to eating and only on mushy soft stuff at present. I do have my jtube fitted although not feeding through it at present. The dietician wanted to keep it in as she was unsure how I would respond to the chemo - however following my oncology appointment the Dr their noted that she would prefer for it to be remove as they don't like the idea of having any tubes in during chemo - something I will now need to take up with the dietician.

    Kindest regards,

    Jo

  • Jo

    I sought a second opinion on the post op chemo. But all the advice I received was that I should do it. I now understand that it is not uncommon for people not to tolerate the full course. I take the view that whatever went in? must have done some good and is therefor better than not having anything.

    There is a point when things do change for the better and life does start to get back to some kind of non-medical normality, where everyday is not controlled by cancer, doctors, appointments etc. So you will get there and this will be a distant memory. The weather is also starting improve now and that makes a big positive difference.

    I wish you all the best and look forward to hearing from you at the other end of this.

    Bruce

  • Hi i had just two of the drugs after not the red one. It is harder after surgery as your body is weaker. You will get through it. I kept my jej til after didn't need it but they wanted to keep eye on my weight.

    Debbie

  • My pathology results were similar to yours. The tumour had penetrated the wall of the oesophagus and there were traces of cancer in one lymph node. I was scheduled to have three further cycles of chemotherapy (though not ECX). However, I had a very bad adverse reaction to the first cycle and the chemo was stopped. I subsequently learned that there is no clinical evidence that adjuvant (post-op) chemotherapy improves survival chances. It is simply an "act of faith" on the part of oncologists that further chemo will, as you say, "mop up" any remaining cancer cells.

    I am also surprised that you are having ECX. I thought the standard chemo regimen was now EOX (Oxaliplatin in place of Cisplatin), as Oxaliplatin as much less toxic. It may be worth having a further conversation with your oncologist to understand fully the treatment plan they are proposing.

  • Thank you so much for your replies - I am due back in to sign the consent forms the 3rd April and then have the induction with the nurses the following day. Spikey I will definitely question that at these meetings. Its all very hard to take in from your initial meeting and you just kind of except what is told to you and the paperwork you then take away without questioning.

    Can I ask what adverse reaction you had to the first cycle? I to have heard about there being no clinical evidence that post-op chemo increases survival chances, we did ask that question on how its determined whether its been successful or not, they were honest to tell us that unlike prostate cancer etc there is no clear markers in the bloods, there are indicators but they aren't accurate and therefore the routine CT scans are required. I have yet to hear whether anyone has completed the full cycle of chemo as it seems to me that its so gruelling that most don't.

  • Hi - well done on coming so far !

    It's odd how regimes vary - I too thought ECX was now standard as opposed to EOX .But perhaps it was a typo on your paperwork - some of my letters referred to the chemo as EOX .

    I would have thought that they could give you a couple more weeks to recover from the surgery ,perhaps ask about that ?

    If I remember you didn't have pre op chemo did you ? Is that why they are now suggesting the 6 cycles ?

    The chemo will be adjusted - dose lowered or cycles not completed if you can't tolerate it . And they really do have very good anti emetics these days .

    I wasn't that bad on my post op chemo ,I had the dose lowered by 10 % but completed the 3 cycles .Don't forget that it's more usual to post to report bad effects than tolerable ones !

    Also I think the side effects of chemo are cumulative so don't forget that altho you are post op you are starting from a different point than most .

    Thinking of you .So glad to hear from you out the other side !

  • Hi Violetqueen - your advise pre-op was so helpful thank you - I even got myself a vest bra which was great and I could only wear once I had the chest drains were removed.

    That's right I had no chemo prior and to be honest heart of hearts I really did think nothing would show up in the lymph nodes- I was proven wrong with that one solitary lymph node! Gutted I was! Hence why they are now saying as I had none before they will give me the 6 cycles post-op. I am more worried about this than my op as I knew with weeks passing I would get stronger and better.

    I'm off to see the nurse next Tuesday so will discuss with them my worries and concern as well. I know the Dr sees tonnes of patients like me so she's very matter of fact. I've had a terrible cough in the past few weeks - brought on more when I eat something. I tend to cough so much it makes me sick sometimes (that in itself is a new experience) - again not sure if its the fluid on my lung that's doing it. I will remind them of that next Monday as well.

  • Scrum - I'm just replying in haste before I go out .

    That cough really doesn't sound right .The thought of coughing that much so soon after surgery sounds awful ,I don't think I could have borne that !

    I wouldn't wait a week to talk to someone/remind them .Is your GP good ? Could you ask there ?

    Surely you shouldn't have fluid on your lungs ???

    As for chemo ...I honestly didn't find it that terrible . Emend (aprepitant) is very good tho they generally don't prescribe it for the first round - in cvase you are the one in a thousand who really doesn't get sick I guess .But if you stress stress stress that you do REALLY suffer with sickness ,have little ones etc then maybe you would get it straight away ?

    Bear in mind that with the chemo you can have the dose reduced or call a halt all together .Unlike the op !

  • I don't think there is any debate. If you have young children you should clutch at any straw to give them the best chance of them going on having a Mum.

    I had 3 rounds of straight Cisplatin post-op (aged 47) and hardly had any adverse effects at all, despite my white cell count going to zero. My Father, a leading pathologist, advised against it saying "why punish yourself when it probably doesn't work". I ignored him as my son was small at the time.

    Some 18 years later when I needed a second thoracotomy to remove a lung and several ribs I declined the chemo as by then my son was grown up. I was primarily concerned with the long-term effects of chemo impacting on one in old age.

  • Hi Gutlesswonder- yes you are right! I have two small sons and they are my world and as you said you fight all the way to make sure that you can be here for them. I was completely naive to even think it the first place that it would ever get to this point. I think reality has since hit home and I am suffering some post-op blues.

    I am hoping that at this age thing will be on my side in dealing with this treatment. I do worry so much about the sickness as I didn't tolerate the drugs they gave me after my op in the hospital.

    As Bruce said above to have some in your body is probably better than none at all and I will start it and see how I get on. I've already spoken with my husband to back me if I want to stop should it become to intolerable. How is your health & life now since having the thoracotomy/ lung and ribs removed?

  • Hi Jo

    I agree with Bruce I didn't tolerate chemo as well during the mop up but my Oncologist was very understanding and reduced the cisplatin by 10% which helped a bit but I tolerated it and am so thankful now that I stuck at it

    Hang on in there you will soon cross that finishing line with a smile

    good luck

    Margie

  • Margie thank you - I know I shouldn't wish time away but I definitely wish that 2017 was over and done with - I know I'm not the first nor will I be the last but I found post op more mentally traumatic than expected and trying to adapt to a 'new norm'! I miss my old life. Every night now leading up to the chemo I'm dreaming about it, its like my illness this year is all consuming. Listening to everyone else helps me realise that this is just temporary - the here and now and then I can look forward to being Jo again.

    Good luck this afternoon will be thinking of you.

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