Just when we thought we had made it to 5 years...

Mazj

Hello everyone,

I feel so privileged to have found this site. It is full of hope, inspiration, advice, information and caring thoughts. Although we live in Australia, I thought I might add my own experience with this dreaded disease – partly because it is cathartic for me and partly because there may be some information that could assist others.

My darling husband was diagnosed with EC in Feb 2005 after experiencing difficulty swallowing – even water! At this stage the doctor who performed the gastroscopy told us he thought it was a small tumour, near the junction of the stomach and in its early stages and he referred us to a surgeon.

When we had recovered from the shock of the whole thing and had gone through numerous other tests including CT and PET scans, we learned that the surgeon was aiming to treat Brian with ‘curative intent’ albeit with pretty aggressive treatment. We next saw the oncologist who suggested 12 weeks of chemo (Epirubicin, Cisplatin and 5FU through a 24/7 pump) prior to the surgery and the same after surgery.

Brian had an Ivor Lewis procedure in July 2005 where the tumour was discovered to be about 2/3 of the size of the surgeon’s fist! He commenced the second round of chemo in September. He lost a lot of weight, had the inevitable nausea, fatigue and eating problems and unfortunately was too weak to have his last cycle of chemo which the oncologist said didn’t matter because not a lot of people make it that far. The accumulation of drugs was really hard on his body and on 1 December the PICC line was removed and Brian really looked forward to starting to feel better.

Unfortunately during January 2006 he was not really feeling that much better and developed incontinence following lots of bouts of struggling to pee during the previous few months. He even needed a blood transfusion during January because his blood count was very low. The oncologist also organised for Brian to see a urologist who quickly determined that he needed exploratory surgery before the issue turned into chronic retention. At least we had a reason for his lack of progress!
Brian ended up having a TURP requiring a few more days in hospital, but when he came home he was still experiencing pain and that, coupled with difficulty voiding, saw him return. He had bloods taken again and then his blood pressure which was 180/100.
Both his surgeon and urologist were called back to the hospital on Saturday evening and were scratching their heads trying to work out what the problem was. A diagnosis of early renal failure was made and Brian went off to ICU for a few more days. Despite bladder function and a variety of other tests with a variety of other specialists, no satisfactory conclusion was ever drawn. The kidney specialist, the urologist and a visiting urologist all talked about a bladder blockage, possible nerve damage, a possible tear in the bladder and/or kidney disease.
An MRI was scheduled for early February, but showed no evidence of spinal cord damage.

One of his happiest days was when he was released for a few hours to go and have a lunch in a café and a sit by the pool at home while wearing a catheter bag strapped to his leg!

On the last day of January he finally came home but still had to self-catheterise for a few months which wasn’t much fun at all.

The long and the short of it was that it was probably a neurological problem stemming from the chemo (Cisplatin) that damaged Brian’s kidneys combined with the radiation from when Brian had testicular cancer at 17. This same radiation (over 40 years ago) was also probably the cause of the EC.

Brian was looking almost skeletal in February 2006, having lost over 20kgs and had a recurrence of gout which had troubled him as well as all the other issues.
There were further follow up visits to the surgeon, oncologist and urologist who ordered still further tests.

During March Brian also experienced occasions where he had large sweats – like rivers running down his legs – whilst feeling cold and clammy– despite his feeling a lot better in general. By April he was on Allopurinol tablets (for ever!) for his gout. His creatinine levels will always be high it seems. By May he was slowly putting some weight back on. He had his follow up gastroscopy in July 2006 and the biopsies were clear. Urodynamics testing failed to show anything significant – so no more self catheterising.

‘Dumping syndrome’ was a part of Brian’s life for a few years but this has eased off to very infrequent attacks. You never know when to expect it. Naps in the afternoon, however, are still frequent. Things went almost back to normal. Lots of overseas trips and wonderful experiences together.

2008 – After the annual gastroscopy the surgeon said Brian’s gullet was ‘pristine’.

2009 – Moderate to severe reflux oesophagitis. Also during the latter part of 2009 and through 2010 Brian’s tumour marker (CA 19.9) started to creep up slowly. And then at the beginning of 2011 it started to double following 3 monthly blood tests.

As far as the oncologist and surgeon were concerned, this was so far from the operation as to cause them to question what was going on. A CT scan in May 2011 revealed peritoneal secondaries. However the oncologist feels that these mini tumours are growing very slowly and not the normal pattern of recurrence despite being a normal pattern of spread. There is some talk that the previous chemo may have slowed the growth down so that they were not detected until now. We hear phrases like ‘very unusual’ and ‘not at all typical’ and ‘still a level of interpretation’.

However after a laparoscopy the surgeon confirmed that it was not operable, not curable and terminal. And yet, Brian is not a typical case so the oncologist is giving us some hope with further chemo. Maybe only a few years rather than a few months but who knows? Prior to this chemo he was playing golf and feeling good. (I would qualify this as 80% of how he was prior to the operation)

So here we go again. We really thought we were one of the lucky ones – making it to 5 years after the surgery. (I say ‘we’ because I feel we are a team and fighting this together)
Brian has just completed 4 cycles of chemo – Epirubicin, Carboplatin (this time) and 5FU again and has a CT scan scheduled for 17 Oct and a visit to the oncologist on 19 October for the results.

Life feels like it is on hold at the moment.

Marilyn

Unknown

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BMGky

Hope the CT scan results
Hope the CT scan results give some positive possibilities. You two have been through it. Prayers for you. BMG

paul61

Hoping for good scan results!!!!
Marilyn,

You and Brian have really been through some challenges together!!

Brian sounds like a real fighter to go through the surgery and all that chemo and then to be ready to do it again.

As a two year post diagnosis survivor I am very aware that the possibility of recurrence is always there and that each good day is a gift.

I can identify with Brian’s “day by the pool”. When I finally finished my post operative chemo my wife and I went out for a hamburger. I never knew a hamburger could taste so good!!

I will be hoping for good scan results and that Brian is back to feeling good again soon.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

chemosmoker

SO sad...So MAD!!!
Marilyn,
I am SO saddened to read your story, and YES it IS the two of you on this journey together.
This just goes to (sadly) reinforce my feelings and fears that they do not have much of a handle on the recurrence of this dreaded disease, no matter what or when or where it is caught. Makes me so angry I cannot see straight! I wish there was something, anything I could say to make this any easier. There is not.

We are ALL here for you, we will all help in any way that we can, and this is an incredibly caring, honest, and knowledgeable group of people; unlike anything I have found anywhere else on the Internet, or in person.

I wish you good news from the upcoming scans and please do follow up and post your findings with us so we can know how best to help, if we can.
Keep up the faith and the good fight.
I will look forward to further posts soon...

May God bless you and keep you until then,
-Eric

jss2011

chemosmoker said:

SO sad...So MAD!!!
Marilyn,
I am SO saddened to read your story, and YES it IS the two of you on this journey together.
This just goes to (sadly) reinforce my feelings and fears that they do not have much of a handle on the recurrence of this dreaded disease, no matter what or when or where it is caught. Makes me so angry I cannot see straight! I wish there was something, anything I could say to make this any easier. There is not.

We are ALL here for you, we will all help in any way that we can, and this is an incredibly caring, honest, and knowledgeable group of people; unlike anything I have found anywhere else on the Internet, or in person.

I wish you good news from the upcoming scans and please do follow up and post your findings with us so we can know how best to help, if we can.
Keep up the faith and the good fight.
I will look forward to further posts soon...

May God bless you and keep you until then,
-Eric

Hi Marilyn
Sending prayers for good scan results.

Julie

Mazj

jss2011 said:

Hi Marilyn
Sending prayers for good scan results.

Julie

Thank you so much
Thank you so much for the heartfelt good wishes. The fact that they come from total strangers who feel like friends makes them all the more special.

I was reading the story I had written to Brian this morning and he asked me to stop because he said it made him feel sad - something which hadn't happened before (EXCEPT when thinking about not being around to be the Poppy he wanted to be for his new granddaughter).

He said that he had never really put everything together (in his mind) like I had. I was the keeper of the history, the detail, the information, the appointments, the journal, the internet searches, the note taking etc and this allowed him to simply get on with things with his usual positive approach. This was what made us such a good team he felt.
Neither of us feels sad - and that's maybe our stage - still a bit of denial about what might happen, but an enormous amount of hope. If bad news comes, we will deal with it then, but no use spoiling the here and now - particularly when he seems so well (relatively speaking) - no pain or obvious discomfort or disability - just the usual chemo hassles.

When I wrote his story, I was trying to condense 6 years into a few paragraphs and without realising it, had spent more time on the kidney issue than I intended. I could have shortened that whole section to ...'Has anyone else ever had kidney problems from Cisplatin?'
At the time it felt like an annoyance and distraction from getting better and as time passed, we had almost forgotten about that stage of his journey.

We saw the blood results at our last 'big' chemo and the tumour marker - CA19.9 - had stopped doubling and only risen 30 points(?) in 3 months. I now know from this site that this is an unreliable if not irrelevant measure of progression, but for Brian it is making him feel really good during this wait for the CT scan and results. Every little bit helps!

Thank you once again for your kind interest and comments. I will keep you updated.

Marilyn

Callaloo

Mazj said:

Thank you so much
Thank you so much for the heartfelt good wishes. The fact that they come from total strangers who feel like friends makes them all the more special.

I was reading the story I had written to Brian this morning and he asked me to stop because he said it made him feel sad - something which hadn't happened before (EXCEPT when thinking about not being around to be the Poppy he wanted to be for his new granddaughter).

He said that he had never really put everything together (in his mind) like I had. I was the keeper of the history, the detail, the information, the appointments, the journal, the internet searches, the note taking etc and this allowed him to simply get on with things with his usual positive approach. This was what made us such a good team he felt.
Neither of us feels sad - and that's maybe our stage - still a bit of denial about what might happen, but an enormous amount of hope. If bad news comes, we will deal with it then, but no use spoiling the here and now - particularly when he seems so well (relatively speaking) - no pain or obvious discomfort or disability - just the usual chemo hassles.

When I wrote his story, I was trying to condense 6 years into a few paragraphs and without realising it, had spent more time on the kidney issue than I intended. I could have shortened that whole section to ...'Has anyone else ever had kidney problems from Cisplatin?'
At the time it felt like an annoyance and distraction from getting better and as time passed, we had almost forgotten about that stage of his journey.

We saw the blood results at our last 'big' chemo and the tumour marker - CA19.9 - had stopped doubling and only risen 30 points(?) in 3 months. I now know from this site that this is an unreliable if not irrelevant measure of progression, but for Brian it is making him feel really good during this wait for the CT scan and results. Every little bit helps!

Thank you once again for your kind interest and comments. I will keep you updated.

Marilyn

What an amazing strory
Somehow I missed this, but I'm glad I finally read it. You have my very best thoughts and prayers as you go through this.

I did not have the ordeal of surgery but I know what it feels like to be told you're not through with this yet.


Lu