Hi guys. Sending love to you all. We have just lost my mum to this cancer after only 6 months post surgery. My advice push for the chemo after and push for all the scans you can get after too. If this had been possible for mum then she might still be here. Xx

Hi

I too would advise, push push push.  My brother had been visiting his GP since March with fears of this dreadful cancer and was pooh poohed and told it was acid reflux.  Eventually at the end of August he had an endoscopy and a biopsy.  By this time he had lost 1 and half stones in 6 weeks.  He was rushed into hospital on 20th September, and passed away on 25th October without having had any treatment.  I could go into far more detail but would not wish to distress anyone on this forum.  It was obviously too late for him and I find it extremely upsetting that in spite of him doing the right thing and going to his doctor, (and advising the doctor that his paternal grandfather had died of the same disease) he was sent away and not seen to in sufficient time to give him a few months quality of life.  

Make a nuisance of yourself, push and push for scans and tests and treasure every moment you have xx

Writing all these tips down, thank you ! Exercise, balanced diet + some fattening up indulgence, diary to track days / side effects - all really useful and appreciated.

Hi Hilts and everyone, just a little update here. My husband is just finishing his 8th EOX round, and is doing really well, eating well, lots of energy etc. The oncologist wants to order another PET scan and if the mets are not worse, to try some radiotherapy. He will also continue on the trastuzumab, every three weeks. The bad news, I was diagnosed with Barrett's syndrome, after having an endoscopy for reflux (stuck burp sensation) I was horrified, it was the same doctor who diagnosed my husband. He said we need to enjoy what time we have together and finished by saying I should avoid alcohol chocolate and caffeine! I have been in shock ever since to be honest. 
 

It is so good to hear your husband is doing so well post op, and others here too. Sending best wishes to you all x

Hi Daisy,  sorry to hear your news, it isn't fair to have bad news twice like you have.  I guess one positive (if possible) is that you already have experience with your husband. A lesson for us all in this ongoing nightmare, is to enjoy every day as much as possible. Has the oncologist given you a plan of action for your barrett's syndrome?

Lee

Yyyaaayyy, Daisy 71 xx

You're back x. I spotted you on another thread where you mentioned your Barrett's. I swear I am NOT a pervo/ stalker.......I truly was wondering where you were. Funny, none of us have ever met, but miss people when they are quiet. I suppose that is because we are all finding each other 'useful'.

Sooo glad to hear your man's is 'under control'. There in lies the point I guess, is to continue to control symptoms when they play up. Anyway, he's got too many fences to paint & sort out to be ill (:

Barrett's- is an interesting one. Only 5% ever go anywhere with it ,that means 95% DONT, and if anything does start to look off - bang- and the cells are gone. They scope you a lot and keep you on the omeprazole. So in a way it's good that it has been found, if that makes sense. Of course you'd rather NOT have it, but you have been 'caught'. I bet you were utterly speechless about the whole thing, both of you with misbehaving oesohaguses. Stats etc are all well n good, but when lightning does strike x2 , pretty surreal set of affairs.......... I bet the emotional stuff is pretty bad right now, and for what it's worth I think I would be exactly the same with 'deep and meaningful' words like WTF & HTF ( what & how) (:

My mate at work has had Barrett's for over 10 yrs and it is behaving itself- that's the thing though, she is monitored ever year and on ppi's. 
I do genuinely wonder WTF is going on out there- as, as you can see this board is expanding by the day!

As for the chocolate & caffeine, well that will always be a personal call, but I would have to ask, genuinely "if nobody knows what causes oesophagus rot, then how can he say that stopping caffeine and alcohol will help ??" Of course we know acid is a major cause, but why do some progress and others don't etc etc. They have been telling people for years to stop smoking, yet cancer is on the increase- even I can't'go figure' (:

You know how 'inspired' I am by the " Keith Richards Health Promotion plan"
 

Anyhows of out the garden to top up the tan on this glorious summer evening..........in my dreams (:

take care

Hilts 

Hi Daisy

Sorry to hear about the diagnosis,  and just to back up what Hilts says - it's rare for barratts to lead to cancer,  and is carefully monitored and managed with omeprazole.  Brother in law has had it for years,  and certainly hasn't stopped the caffeine,  alcohol or chocolate. 

Hi Daisy

Sorry to hear of your diagnoses, as previously mentioned you will be monitored and be put on omeprazole and keep enjoying the chocolate, alcohol and caffeine.

Hi Everyone

On my diagnosis last year the oncology team told me to put on weight 5ft 11 and 15 ½ stone , I didn't have a problem with that lol, eat as much as you want and drink carte Blanche, I wasn't advised to get fit or any mention of fitness, unfortunately my surgeon had a different mindset totally when I first met him I was advised to loose weight for the operation(2 Stone if possible), get as fit as possible for recovery purposes from the operation, I had a turbo trainer in the house and used it every day peddling along to you tube videos trying to keep up lol and walking the dogs legs off.

Just when I thought I was coming out of the low point of the first round of CHEMO Friday gone the bloody white blood cell injections show there lovely face and I am in agony, I did have an episode pre op to the injections but managed the pain with ibuprofen, this time Ibuprofen and Oramorph not touching the pain, wife rang hospital and advised to dial 999, Ambulance came administered a lot more Oramorph and I was put on gas and air ! ,let out of hospital 530 in the morning.

I`m keeping the faith on this roller coaster ride, Bumping along whooooo.

Gosh, glad you are ok! Sounds very scary. 
 

thanks to all for kind (and humorous comments) made me smile. I think I will look like Keith Richards soon, with all the stress :laugh: 

Hi Daisy,

it must have been a shock for you. I can't say I know a lot about Barrets but from the comments on here it sounds positive and that you will be monitored.It's so hard especially with your husbands diagnosis. I am pleased to hear his condition is being managed and he's feeling better.  Re Keith Richards - I've been and bought some more anti aging cream lol.

Ray B so sorry to hear of your recent trip to hospital- sounds very painful. It sure is a roller coaster. Take heart that you'll get there. As Hilts said many of the 'victims' have set backs along the way. Not what you want physically or mentally! I've been back in 'brain whirring' mode. 
 

Your experience re pre op does show how advice can be conflicting. It was a friend of a friend who has had op that advised weight gain and getting fit. Also this site was very useful when I was just reading the posts from you guys. 

My guy is still in Step down. 

Keeping the faith

Milly

Ray,

This isn't so much a roller coaster - this is being on a twister, on a roller coaster, with dodgems being thrown at you from all sides!

I always read the side-efffects of the stuff we're taking just to make sure I know what may be heading our way, and - touch wood - apart from a couple of aching bones on my first one during the first cycle, I've been ok.  But having gone through the infected feeding tube scenario after the op where the pain was horendous - I feel for you.

Glad to hear you are back home though - that always helps.

bfg

This describes it perfectly lol

https://youtu.be/lLMudSNOCRg

Hospitals are great places, when you need them but so glad to be back home.

bfg

This describes it perfectly lol

https://youtu.be/lLMudSNOCRg

Hospitals are great places, when you need them but so glad to be back home.

HI Rayb

You are having a bit of a time off it pal , hang in there , if an old turkey like me can get through this anyone can , the same goes to anyone reading this thread  , maybe i was just lucky to have a top flight team looking after me  coupled with my laid back attitude to the whole journey , this is not a sprint race more of a marathon , even now i think it will take me another year to fully recover even though i have started work 6 hours three days a week i still need plenty rest and down time , so my message to you Ray and everyone reading is be patient , relax , rest and take it easy , your body will let you know when it's ready to move ahead , impatience only leads to setbacks , in the meantime i as always am available to offer non clinical support to everyone , as always take it easy !

Regards

Douglas 

Thanks dooggreg, nice message. 

Lee

Hi Lee

Thanks for that , and you take care of yourself 

regards

Douglas

Who can help me come up with a word to describe the constant checking of a forum to see if anyone has posted an update?

It's always a challenge  - I don't like to ask how things are, as it seems intrusive - and like others, I don't tend to post negative stuff unless I can make it funny.  

But anyway - enough rambling.

I'm now 1 week post 2nd cycle of round 2 of FLOT - counting down the days (22 or 3 weeks tomorrow) when my final pump can be disconnected and the picc line removed - and as my surgeon said, let the recovery commence (I'm still aiming for the 4 pints as my 1st tick-box hilts!)

FLOT 2nd time around is slightly harder than 1st time, but still manageable - and again I would advise to share with your respective teams anything that's different, or unusual - there are a panacea of drugs out there that can help.

But enough of the bfg - just to let others know that I'm thinking of you all too!

Thanks for the update BFG - good to hear you're making progress. My Dad is on the second week of the second round also - he has already noticed an improvement in his swallowing and yesterday managed to eat some chicken on bbq! Our situation is different from yours as my Dad was told surgery isn't an option as its stage 4 and had spread to the lymph nodes on diagnosis. My Dad is doing really well and is still feeling strong under the circumstances. We are feeling that why the chemotherapy is obviously working with regards to swallowing (as it did on the first round), you feel that poisoning your body isn't as 'good' as you first think when swallowing improves - i guess it's a double edge sword!  

Hi,

Douglas I'm usually a very laid back person myself but for some strange reason, mind mindset isn't InTouch with reality, I haven't just been in for a nip and tuck lol definitely a marathon thanks for the words

BFG I'm chasing you lol, I have my second round of FLOT post op tomorrow, my experience of this is round 1 felt a bit more sickly than before never experienced the fingers tingling sensation but my left foot has been tingling for a few days now and I had the documented hospital visit urgh, regarding this thread updating/ refreshing, if you view this on a phone browser just maybe leave a tab open in your browser and hit the refresh or in Windows just leave a tab open and Ctrl + R , this is my way as sometimes I don't get an email advising there has been a new post.

Lee It definitely is a double edged sword and toxic stuff, but if it's improving things hey let's have some more, BBQ chicken very nice

Hope everyone else is bobbing along nicely at the moment.

Ray

Trying to keep it real

Hi all,

RayB I hope things improve and you manage your second course  of FLOT. You have not had  a straightforward journey, although I appreciate it's not a straightforward situation full stop.

Thamks Bfg for thinking of us all, as I do too. Everyone's situation is unique. I've not posted as like you say we tend to like to focus on the positive. My husband is still in step down. He has fluid in his chest cavity a result of trauma due to the bleed on his lung and 2 major ops within a week. The fluid is not draining easily. He has had a small drain which took some off but not enough. Therefore he has had to have a bigger drain put in ..again. This is a real concern to me because of what happened. I've been ringing during the night sometimes and the staff are brilliant. 
 

Lee I'm pleased the chemo is working. Your support will mean so much to your dad. I know how much our two sons have helped us.

Keeping the faith 

Milly

Hi y'all.

Glad to see everyone chugging along.

We are now having a problem...... husband doing so well, I suppose I thought we were done with complications aha- not ):

Although I have to say- not a really bad one as things go.

He is booked for an endoscopy. He's had a dreadful cough - been going on since post op, but they are thinking 'tight ' scar tissue causing reflux, = cough. Treatment pretty straightforward according to them - we know nothing is 'straightforward' in this game (:

If it is found to be tight then they will dilate it with a balloon- quite common apparently. Scar tissue from the join. We are both pretty wobbly. The mere mention of 'endoscopy' fills us with dread after the last time eke!

Surgeons pretty sure nothing dodgy going on, but thought that once before!

so , trying to keep the faith

Hilts

Ps- I follow this thread and get notifications every time there is a post, makes me look like I am on here all the time- just once a day (:

Hi Hilts,

I'm afraid we don't feel like we are chugging along, more up and down but hoping for more up! Over 3 weeks since first op which went so wel ..... 

I think I've read about this procedure somewhere - is it to stretch it?  It's natural to feel concerned. Hopefully it will be sorted quickly and help with the cough. 

Keeping the faith

Milly

Ray,

you are nipping at my heels. I feel more "sickly" too this time around - especially when it came to eating, but that wore off after a week after the cycle- my fingers tingle too, and sometimes my right foot decides to go off somewhere on it's own adventure (at size 14, I'm sure it's out there scaring old ladies).

Milly - they are ultra cautious about the chest draining.  My other half (which is another novel in itself) wouldn't be let out of hospital too, until the drain stopped draining - very frustrating.

Lee - great news about the bbq chicken.  My surgeon is very much of the opinion that improvement in eating can tell you more on how things are working than any scan - it was following my 2nd cycle 1st time around that eating improved.

Hilts - I read about this on another forum.  It's not uncommon and straightforward - but I know what you mean.  The last time we all had an endoscopy, it didn't turn out that well - but better to know and when his cough stops, he can drink more beer!

Keeping the faith, really!