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Macca_Loz
Posts: 21
Joined: Oct 2012

my 62y.o husband diagnosed 7 weeks ago with inoperable EC with several metases in liver. have been told not curable but controllable. has had two lots of 5 day chemo as an in-patient and 10 days of radiotherapy both as an in and out patient. We are still dealing with the shock diagnosis as hw was a very healthy retired man. We are very frightened on what lies ahead. can anyone advise. We are from Australia and I came across this website whilst searching the internet. Lorraine

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Amjosmom
Posts: 231
Joined: Jun 2012

I'm sorry to hear of your husbands diagnosis. You have found a site full of helpful information and many supportive people. So, your husband is Stage IV? My Dad is also Stage IV with mets to his liver, bone and blood. There are many things you can do to help him. I will send you a private message. Check your CSN Mail on the left side of the page. It is a very scary thing you and your husband are going through. Don't worry, we will help you through it!

~Jayme

Sunshine_50
Posts: 10
Joined: Sep 2012

Hi Lorraine
So sorry to hear of your husbands diagnosis. we only found out my dad had ec about 5 months ago. he has been lucky to have been operable and its still a huge shock, so my heart goes out to you. There are quite a few stage 4 warriors and caregivers out there who support all of us with their experience and positive attitudes. ii am only new to this, but i wanted to say hi and welcome you to the group. There are some amazing people here.
Where in Australia are you? We are WA.
Claire

Macca_Loz
Posts: 21
Joined: Oct 2012

Thank you Claire, We live in Melbourne/Victoria. I have read several stories to date and thought jointing the site might be of some assistance to me in coping what lies ahead.

Hope your dad is going okay.

Lorraine

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ABC321
Posts: 52
Joined: Oct 2011

Fellow Aussies....just dropping a line to say hi....we're in Vic, attending Peter Mac.
Rgds
Steve

Macca_Loz
Posts: 21
Joined: Oct 2012

Hi Steve, we are in Victoria also. My husband has had 10 days of radio and going into third cycle of chemo in a couple of weeks at the Freemasons Hospital.

All the best with your treatment.

Lorraine

Sunshine_50
Posts: 10
Joined: Sep 2012

Hi we are in Perth so dad is at Sir Charles Gairdner. He has friends and colleagues working at Peter mac and I heard its the best in Australia. Bit of a long flight for us though. Nice to see some locals on here. There is also a private Facebook group if either of u r interested, I can join u up. I found it useful having a few places of support.

DanTheMan
Posts: 24
Joined: Feb 2012

hi lorraine,
Im dan and im 37 and 2 years post treatment for stage 4 EC with distant lymph node involvement,incurable,no surgery,just chemo and radiation.When i was diagnosed it was the single most overwhelming thing i have ever had to face. i guess everyone who faces any type of life changing event when it is to do with your health has to come to some sort of arrangement in their mind of how best to deal with it.Staying positive,take no notice of statistics,not worry about what might happen or just because it happened to that person doesnt mean its going to happen to your husband.These are all things i can honestly say really overwhelmed myself.I was under the assumption that i wouldnt be here 2 years after my initial dignosis but nobody did take into account for the fact that i am me and thats what matters ;)
I recently have had recurrence in my oeasophagous and also a tumour removed in my small bowel .Just finished my first round of chemo and its a whole different kettle of fish then 2 years ago but hey i do have what i have and if it improves my quality of life and gives me more time then fire away,hit me with your best shot..with everyday i learn more to treat what i have as something that is a managable thing with treatments etc that way i can still live my life without always worrying about what the future holds...

Macca_Loz
Posts: 21
Joined: Oct 2012

Hi Dan, thank you for your words of encouragement. yes it is certainly overwhelming when search internet sites for info and look at the survival stats etc.. on EC, it can be quite confronting so now i try not to do Google searches on this and that. You certainly are young in having this disease but cancer has no preference does it? i owuld like my husband to be in contact with you. I have not shown him this site yet, i was just looking for myself but intend to get him to read EC survivor stories to give him confidence. He is a very positive person but i think the rug has been pulled from him since being diagnosed. He is due to go into hospital for his third cycle of chemo at the end of this month so for the next few months i am hoping he gains some strength to cope with the remaining 4 cycles ahead. I have sent you a private email via CSN email.
All the best with you current treatment, by the sound of you, you will give it your best shot.

Josie60's picture
Josie60
Posts: 81
Joined: Jul 2012

You will find some good information here. I can't help much as 8 am still trying to get my head around my own diagnosis. I was stage 3 in March. I had 6 weekly rounds of chemo 28 radiation treatments and successful THE surgery in June but in sept PET scan shows new lymph nodes involved so I start chemo again in a few days. I'm working hard on being positive that we can knock this down.

Macca_Loz
Posts: 21
Joined: Oct 2012

Thank you Josie, sorry to hear you are starting chemo again, my thoughts and prayers are with you. keep up the positivity, remember there is always HOPE.

Macca_Loz
Posts: 21
Joined: Oct 2012

Hi Dan, just wondering how you are going following your first round of chemo following your recurrence? My husband was going to contact you but he had a set back last week by having a TIA (mini-stroke) and was hospitalized for 5 days, all okay though and he is just recovering and getting himself ready for his third cycle of chemo middle of next week.
just letting you know you are in our thoughts. keep up your positivity.
Lorraine

jsipin
Posts: 7
Joined: Jul 2012

Hi Lorraine,

My Father, 57, who was diagnosed with stageIII EC this past january of 2012, is still fighting it today. These past 10 months have been the hardest for me and my family, especially for my mother who has sacraficed everything to make my father as comfortable as possible, in which I know you will do the same for your husband. Although we're both going through the same thing I can't imagine what feelings your going through at the moment but just stay strong and do WHATEVER it takes to beat this horrible sickness. Always go with your instinct with decisions on what is being used to treat your husband. They say it may not be curable but always remember that if your husband wants to fight it, I promise he'll be around for a long time. And thats exactly what my father is doing at this moment. I'll hold you both in my prayers. GOD BLESS!

PKolpien
Posts: 1
Joined: Oct 2012

My 50 yr old husband was diagnosed two days ago with Stage IV EC...we are still reeling from the diagnosis. I hope you and I can find the answers and support we need from others who have headed down this road before us. Sending prayers to all of you! Trish

EFR444
Posts: 2
Joined: Oct 2012

My father was just diagnosed with EC at the Gastroesophageal Junction. The stage is T3 N3 M0. He just Began his first round of radiation on Mon. He has 4 more weeks left of chemotherapy in conduction with 23 treatments of radiation. If all goes well 6 weeks after he can have the resection. My father is 76 and had only complained about discomfort maybe 6 weeks prior to the diagnosis. He would voice his opinions to his internist and they would just change his mess for reflux. Although my father does have BE. And unfortunately, no one had followed up on the diagnosis or even requested a endoscopy in 7 years. :( regardless of the negligence, we have a plan in action for him and we have been taking it one day at time. This is also not the first time EC has affected my family. My father in law passed away at the age of 62 last year from the same exact cancer right down to the same stage.

Macca_Loz
Posts: 21
Joined: Oct 2012

Thank you Trish. The shock of diagnosis takes a while to settle in, i think we have only just accepted it in the last few weeks since being diagnosed on 22/8/12. Reading this website has been a great help, people have given ideas of what questions to ask drs etc... I live in Australia so it is interesting to find the difference in medical information given out to patients. My husband was a very fit and health 62y.o. semi retired, went to gym 5 to 6 times a week a very healthy eater. he did smoke up until he was 57y.o. it was quite a shock to be told he had the terrible EC especially stage 4 with it having spread several lesions to the liver. It was out of the blue, the only symptom he had in the last few weeks before diagnosis was losing weight. he has undergone 10 days of radiotherapy and will commence his 3rd cycle (of 6 cycles) of chemo next week. i cannot believe that he is still eating well, it is marvellous that he is still able to eat. Has no pain down the gullet - only made side effect of chemo is the extreme tiredness. I am frightened as to when the cruel symptoms on this terrible diagnosis will begin to appear.

It is very sad to think your husband is only 50y.o. so unfair. like you say hopefully you and I can find answers and support from others.
People on this website are in my prayers constantly. Lorraine

lyndez
Posts: 22
Joined: Apr 2011

My husband (48 years old at the time)was also diagnosed with stage 4 EC (liver mets)in January 2011. He had 10 radiation treatments and 6 chemo treatments. As of this day he is feeling great. He has regained all his weight back and just opened his own business. He never stopped working even with treatments. He did alternative such as vitamin C IV and many supplements. He is now doing vitamin C by mouth 10,000mg daily and continues to take many supplements. He is also taking Low Dose Naltrexone 4.5mg at bedtime which I strongly believe that's what's working, because my sister is also taking LDN and she was on life support in December last year for stage 4 breast cancer with mets to the brain, bones and lung, she also went back to work full time recently, although she is still on chemo. So my advice to you is to try to get a doctor to prescribe LDN for him as long he is not taking opioids. As a stage 4 you have nothing to lose and never give up.

Take care. Lynne

Macca_Loz
Posts: 21
Joined: Oct 2012

Lynne, i was having trouble sleeping and thought i would log on and am so glad i did, your comments were so uplifting as I was feeling pretty down tonight. the treatment your husband had re chemo and radiation is exactly what my husband is currently having. you give me faith and hope. I will definitely speak to the oncologist about your advice and see what he says. my husband is due to go into hospital next week to commence his 3rd cycle with a rescan so we have all fingers crossed and praying hard that the chemo is having some reaction on the liver mets.
will keep you posted and many thanks. I may need to ask you at a later stage what supplements. I hope your husband continues to thrive.
Very encouraging indeed. Also what type of chemo did your husband have? my husband is having Cisplatin and also Fluorouracil (5FU) fanny pack.
regards
Lorraine

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