Surviving Oesophageal Cancer

Hi Susan

Having just read your profile I see that CyberKnife is being considered as part of your husband’s treatment.  Had I read your profile, as I should have done in the first place, I would have been able to tell you that this is a kind of localised radiotherapy that has been very successful in many cases when surgery is not an option.  It is offered to selected patients that are considered suitable for this procedure and it delivers a localised and targeted dose of radiation to the tumours without harming nearby organs.  This treatment is considered to be a valuable tool in controlling some cancers.  I imagine that your consultant has explained that to you, but it does looks more hopeful now.  I know you are worried in case the chemo doesn’t help, but this is something that we just have to wait and see and hopefully it will do its job.  However, I would still give the OPA a call as they can offer you much more advice than I can.

All the best

Crystal

hi crystal hope you are well. iam on my second week of ecx feeling alot better then last week. i do get very tierd quickly iam in bed at 7.30 asleep by 8.45. still find it hard to read a book or watch tv, due to consentration level low. anyone else feel like this on this treatment. going in for 5th streach on thursday hopefully last 1. crystal does eating get easyer as time goes on, i do have some tummy left does it really streach so you can hold more. hi to all reading this have a good day and look forward to any replys. sharon. xxx

Hi Grace

Thank you for replying to my enquiry and I am sure it is an avenue we will pursue in the future if need be.

At the moment, my husband is responding well to PCV chemo although he has been put through the mill these past 9 months.  He also copes extremely well considering the mobility problems that the tumour has caused him.  This helps to give me strength to soldier on.

He is very strong willed and that is what see's him through all of this.

It doesn't seem to matter what the diagnosis is as we are all experiencing the same nightmare day in day out.

Please keep in touch as we will be interested in knowing how well you and your husband are coping with this treatment and coping in general.

Take care

Best wishes

Ann x

Hi Sharon

I’m feeling good, thanks for asking.  My new normal is getting better all the time, so hopefully one day, I'm sure you will feel this good as well.

The ECX chemo, or most of the chemo for that matter, does make many people feel very tired, as fatigue is one of the major side effects.  For me, I found that walking helped to dispel the tiredness.  As for the short attention span and not concentrating, well that’s typical of ‘chemo brain’, or to give it its medical terminology, chemotherapy-induced cognitive dysfunction.  Usually this is a temporary condition which improves over time, but some people still have it years later.  It’s recommended that you do brain puzzles such as crosswords or sudoku, which personally I found ridiculous because I couldn’t concentrate long enough to bother Lol.

As for eating.  Well, you are very early into recovery and quite a long way from reaching your optimal performance, or your new normal.  Right now you should be still eating little and often, and probably finding some things more difficult than others.  In time, and for me it was around two years, I stopped eating so often and returned to three meals a day, albeit smaller ones as regular size were still too much.  Nowadays, almost three years on it’s much the same.  Occassionally, I find that I can’t manage very much at all and sometimes still get dumping syndrome.  Mostly though, I can eat larger meals, but slowly.  Even now though if I overeat, I feel extremely uncomfortable and ill, so I do tend to go for smaller amounts.  The main thing is not to let it worry you.  One day you will find that you just haven’t thought about it and that’s becaue you will have arrived at your new normal.

Keep in touch and let us know how you get on.

Love Crystal xx

Hi to everyone, I hope your day is going well. xx

Hi Ann

Welcome to the community although I’m so sorry that your husband has this awful illness, but it seems his strong attitude is seeing him through the chemo.

Anyway, might I make a small suggestion, which might be more helpful to you?  As this particular thread has only ever been about Oesophageal Cancer, oesophagectomy and recovery, I’m afraid you probably won’t get too many responses for your husband’s type of cancer on this thread, so you may want to take a look in the Brain Cancer Group, where there are people who will be able to relate to your experiences there, or as a carer you might want to try the Carers Group. 

None of us will mind if you want to post here, it’s just that none of us have any experience of brain cancer and so won’t be of much help or use to you in terms of offering advice and sharing experiences.

I do wish you lots of luck in the future and very best wishes to you and your husband.

Crystal xx 

Hi Ann

I was very glad to share what little information I could.   I imagine that you found yourself on this thread because there is not much out there on PDT?  I will be keeping people reasonably up-to-date on one or other of the OC threads about how things are progressing - so do drop in. 

Crystal's advice about joining the Brain Cancer group is excellent and I should have thought to mention it.  If it is as supportive as this group, you find a wealth of experience and knowledge there.  

I am so glad your husband is responding to the treatment - that will be a huge relief to you. 

Wishing you both the very best of luck, 

Hi everyone

Someone posted on the 'liver secondary thread' about Radio Frequency Ablation to treat the liver- her husband has OC with liver secondaries.  She has had no replies - except from me.  Does anyone out there know about this treatment?  It is something we have been investigating but would very much like to know if anyone with OC has been offered this treatment - and, if so, where!   

I would be most grateful for any information or simply your thoughts!

Best wishes,

Hi Crystal

Thank you for the advice but I am already a member of my own group and have been for several months now.

As you say, it is difficult to understand someone else’s condition as you only seem to understand the ins and outs of your own.

The reason for speaking to Grace was to obtain information about PDT.

I will ask Grace to post a new forum on the site dedicated to PDT

Many thanks and take care

Ann

Hi Grace

Thankyou for replying as there is not much information about this treatment.

There was a thread on Brain Cancer about PDT a few months ago but the lady who originally listed did not reply.

Lots of people drop in and out on the site for many different reasons.

Take care and hope to hear from you soon

Ann x

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Hi Ann

I think it is an excellent idea to have a separate forum/thread about PDT and some other 'new' treatments about which we can exchange information.  I have sent you a PM asking you how to go about it. 

Hope everyone out there has a wonderful weekend.  

Love to all.