36 and stage 4 esophageal cancer

Ucsf_smile · March 2012

DanielleD said:
Another Aussie
Hi Dan,

I'm another Aussie with Oesophageal cancer. I'm a 43 year old woman. They say mine was caused by the HPV virus. I was diagnosed at Easter last year and was told I had 3 months to live. To this day I'm not sure what 'stage' I was/am, I never asked - I was just determined to beat it. I had a huge tumour in my upper oesophagus (7cm long)and it has spread to local lymph nodes. I couldn't eat anything, I would even choke on a raspberry seed in a smoothie. Since I was diagnosed the Thursday before Good Friday all the 'right' doctors were on holiday for 2 weeks so I was told I was going to die and after they debated about whether to keep me in hospital over the Easter break they sent me home (I live 5 mins from the hospital) with instructions to come back if I kept choking on liquids (which I did every other day or so). So over Easter I tried to come to terms with dying (what a freak out!) and get my affairs in order.

I went back to hospital after Easter and saw my beloved Oncologist who asked me if I knew what was happening and I told him I knew I only had 3 months to live. He looked puzzled and said "No you have a 50/50 chance at cure" - oh happy days! He said there was no time to have a PEG installed and I had to start radiation and chemo immediately. He said I'd need a naso-gastric tube for 'eating' at some point. I started 6 weeks of radiation and two rounds of chemo a week later. I started to eat very soft foods within two weeks and was a bit of star for it - I had a sensational response to treatment. I completed my treatment and waited the 12 weeks for the PET scan. They told me the results were all clear, essentially I'd beaten it. Then I got a call a week later from my Oncologist who said the pathologists had raised some concerns about some lymph nodes that he felt were nothing to worry about, since they didn't "light up" on the PET scan, but he wanted me to have a biopsy. Three biopsies later it was confirmed there was still cancer in my lymph nodes. When he broke the news there was such sadness in his eyes. He said that a laryngectomy may not be possible and we may be at the end of the road. So I went to big meeting at the hospital with Professor Bryan Burmeister (who is an expert in oesophageal cancer and my senior Oncologist)and he decided it was worth a shot to take out the lymph nodes and I was scheduled for a neck dissection and a hemi-thyroidectomy soon after. The surgery (had on Dec 9th 2011) was a raging success and today I'm feeling great and there no signs of cancer . So far so good. I feel sensational and am back living life to the fullest, taking each day as it comes.

Still look for signs of it EVERY SINGLE DAY (I swear I could smell it, even though my Drs think I'm quite mad!) and stats run around in my head about my chances of long-term survival. I've not really ventured into the "cancer world"(as I call it) because I didn't want to dwell on cancer. This is my first ever post on a cancer forum. I'm struggling like you too but I seem to get better at keeping insane thoughts at bay day by day. In May I'll be marrying my wonderful partner of 13 years in a beautiful wedding. I never wanted to marry but when they told me I was going to die the very first thought I had was "Damn, I should have married Paul" so now we're doing it. I'm stronger every day and have no real side effects from treatment apart from some scar tissue that stops me eating red meat. I'll still choke on that but seem to be able to eat anything else. I struggle with round tablets too but that's it, I'm perfectly fine otherwise.

I don't know about the whole "stage" thing all I know is I had a nasty tumour that had spread to my lymph nodes and was up against my thyroid and I was originally told I'd die and there was no chance at even remission. I don't think I wanted to know either - I just figured I had to fight and I did. I'm alive almost 12 months later and feeling great. All I wanted to know when I was going through treatment was that it *could* be survived because I knew I could do it if it were possible. So far so good. If you need to chat let me know, happy to chat any time. :-)

Hope this post makes sense, haven't re-read it or spell-checked (if anyone here cares about spelling they've really do have bigger fish to fry! lol) so it's straight off the cuff. My apologies if I've rambled. :-)

Danielle

Dan & Danielle- the dynamic
Dan & Danielle- the dynamic duo! both your stories are such an inspiration and what keeps this forum positive and uplifting. Thank you for sharing.

Tahl · September 2013

ABC321 said:
Hey Dan
As a fellow Aussie i couldn't resist saying a big Hello!The guys are right when they say EC has no boundaries...my partner is 43 and is Stage iv...we are in sunny Melbourne and are about 6 months into the journey. James is doing well, eating well, putting on weight, although the latest round of chemo means that his hair is comming out. Luckily he has the right head shape for it....i would look like an egg if it was me. Which hospital are you at? We're are Peter Mac.
cheers
steve

Hi ABC321

Hi,

Maybe you can help... my dad has just been diagnsed with EC, we are all in total shock and I'm a mess to be honest! (im his daughter) im trying to find the best Dr's and any support as we are so terrifed right now. We are also in Melbourne, would be great to hear from you.

Thanks

Tahlia

Tahl · September 2013

In Shock

Hi, My dad has recently been daignoased with EC, actually it happened on Monday this week. We are all completely in shock and dont know anything about this cancer or the journey ahead for my father. At this stage we do now know much, and have been told we have to wait for a PET scan to see if he is a candidate for surgery... the waiting is killing us, I cant even imagine how he is feeling. But my dad is so strong and putting on a brave face for his family. Im hoping for some support, help...best medical professionals. We are in Melbourne, Australia.

Thank You

Tahl

Leej · January 2014

My Stage 4 story w/ Gastro/esophageal metastatic adenocarcinoma

Hi. Just adding to the body of knowledge. I was diagnosed with stage 4 in April 2013. I was 51 now 52. No risk factors, no acid reflux, never been I'll really. I just had hiccups for a couple of weeks and went to see the doctor. The Main tumor in my esophagus/stomach has spread to the liver, lungs, and multiple lymph nodes. It is inoperable and terminal according to my medical team at MD Anderson.

I echo everyone else's comments about living life while you can. Don't focus on the statistics just on what you can control.. You never know what might happen. I know my chances of 5 year survival are greater than the chances I had of getting the **** in the first place so there is a start:-)

I have just completed my 13th round of chemo.

Started with Docetaxil and Oxylaplatin and 5FU. I had 8 treatments that should have been 2 weeks apart. The first 5 were but then I started having problems with low platelet counts. The last three ended up being about 3 weeks apart. Scans showed positive news with the tumors shrinking in all organs.

I went back for my next treatment three times but my platelets did not cooperate and they had to put me on a two month break. After the break scans showed I had developed new tumors and the existing ones were growing again.

they tested me for the HER2 markers during my break and I was positive so to try and keep my platelets high enough for treatment for my next round they substituted Herceptin for my DocentXill. My first two treatments went fine but in the third my platelets hit 100k again (the cutoff). They gave me the treatment but were concerned.

To try and keep the platelets up they suggested a Splenic Embolization. This kills off about 60 % of your spleen which apparently holds on to platelets. Had the operation just before Christmas 2013 in between regular chemo treatments. Anyway it seems to have done the trick initially and I completed my first 4 treatments with Heceptin in the mix. Just had my scan and initial results are good with all tumors now shrinking again and even some reduction in the infected nymph nodes.

I have just had my first treatment on my next round.

through the whole process I have been totally fit and active. I realize I am likely lucky there. I am still doing all the physical things I did before diagnosis.. J play Tennis to a reasonaby high level for instance. I have had no nausea and side effects have been very minimal. With my first round of treatment I had a bad taste in my mouth. That has gone now the Docetaxl has been removed. I have a very minor peripheral neuropathy in my finger tips. As I write this it is easing as well. Not sure how long I will feel lime this so I am trying to make the most of it.

note: if you have a Splenic Embolization it will be painful for a week or so.

I did want to provide some more commentary on the use of Herceptin for this group. I realize it is only applicable to the 20 or 30% of People who have significant HER2 markers on their cancer. It is also not a miracle drug, just another option. So far the effects for me have been positive and it is easier to take than the chemo drugs.

Keep positive and keep posting.

Lee

dfd24 · January 2014

Leej said:
My Stage 4 story w/ Gastro/esophageal metastatic adenocarcinoma
Hi. Just adding to the body of knowledge. I was diagnosed with stage 4 in April 2013. I was 51 now 52. No risk factors, no acid reflux, never been I'll really. I just had hiccups for a couple of weeks and went to see the doctor. The Main tumor in my esophagus/stomach has spread to the liver, lungs, and multiple lymph nodes. It is inoperable and terminal according to my medical team at MD Anderson.

I echo everyone else's comments about living life while you can. Don't focus on the statistics just on what you can control.. You never know what might happen. I know my chances of 5 year survival are greater than the chances I had of getting the **** in the first place so there is a start:-)

I have just completed my 13th round of chemo.

Started with Docetaxil and Oxylaplatin and 5FU. I had 8 treatments that should have been 2 weeks apart. The first 5 were but then I started having problems with low platelet counts. The last three ended up being about 3 weeks apart. Scans showed positive news with the tumors shrinking in all organs.

I went back for my next treatment three times but my platelets did not cooperate and they had to put me on a two month break. After the break scans showed I had developed new tumors and the existing ones were growing again.

they tested me for the HER2 markers during my break and I was positive so to try and keep my platelets high enough for treatment for my next round they substituted Herceptin for my DocentXill. My first two treatments went fine but in the third my platelets hit 100k again (the cutoff). They gave me the treatment but were concerned.

To try and keep the platelets up they suggested a Splenic Embolization. This kills off about 60 % of your spleen which apparently holds on to platelets. Had the operation just before Christmas 2013 in between regular chemo treatments. Anyway it seems to have done the trick initially and I completed my first 4 treatments with Heceptin in the mix. Just had my scan and initial results are good with all tumors now shrinking again and even some reduction in the infected nymph nodes.

I have just had my first treatment on my next round.

through the whole process I have been totally fit and active. I realize I am likely lucky there. I am still doing all the physical things I did before diagnosis.. J play Tennis to a reasonaby high level for instance. I have had no nausea and side effects have been very minimal. With my first round of treatment I had a bad taste in my mouth. That has gone now the Docetaxl has been removed. I have a very minor peripheral neuropathy in my finger tips. As I write this it is easing as well. Not sure how long I will feel lime this so I am trying to make the most of it.

note: if you have a Splenic Embolization it will be painful for a week or so.

I did want to provide some more commentary on the use of Herceptin for this group. I realize it is only applicable to the 20 or 30% of People who have significant HER2 markers on their cancer. It is also not a miracle drug, just another option. So far the effects for me have been positive and it is easier to take than the chemo drugs.

Keep positive and keep posting.

Lee

her2 positive and herceptin

Leej,

keep us posted on how you are doing.

Although Herceptin is not a miracle drug, it is effective in a lot of cases. my husband's oncologist told us it was good news when the test results done last year showed he was her2 positive and could get herceptin.

I also just posted an update on his condition in another conversation. he is now on folfox and herceptin.

he also does a lot of exercise , bicycling in his case, and he feels it is a big help in helping him with the treatments and feeling good.

wish you all the best,

danièle

goty2001 · January 2014

dfd24 said:
her2 positive and herceptin
Leej,

keep us posted on how you are doing.

Although Herceptin is not a miracle drug, it is effective in a lot of cases. my husband's oncologist told us it was good news when the test results done last year showed he was her2 positive and could get herceptin.

I also just posted an update on his condition in another conversation. he is now on folfox and herceptin.

he also does a lot of exercise , bicycling in his case, and he feels it is a big help in helping him with the treatments and feeling good.

wish you all the best,

danièle

my update (to my favourite thread)

Diagnosed Stage 4 inoperable in June 12. Outlook was described to my wife and I as probably 6 months without chemo .. maybe 12 months with. I got some affairs in order. After 6 months of chemo, 4 of which included Herceptin, I reduced to just Herceptin 14 months ago. Added to this I gave up meat, juiced wheatgrass, and take vit C in large doses, all of which I believe have helped. Anyway everything reduced and eventually disappeared. Scanned on Monday, and met my oncologist yesterday he suggested 6 monthly scans would suffice now. Apparently there isn't much data on me (I should say us) so I don't know how exceptional this is, but I am in better shape than anytime in the last10 years. Lesson 1 = don't obsess with stats. Lesson 2 = consider what you can do for yourself. Lesson 3: there's hope.

dfd24 · January 2014

goty2001 said:
my update (to my favourite thread)
Diagnosed Stage 4 inoperable in June 12. Outlook was described to my wife and I as probably 6 months without chemo .. maybe 12 months with. I got some affairs in order. After 6 months of chemo, 4 of which included Herceptin, I reduced to just Herceptin 14 months ago. Added to this I gave up meat, juiced wheatgrass, and take vit C in large doses, all of which I believe have helped. Anyway everything reduced and eventually disappeared. Scanned on Monday, and met my oncologist yesterday he suggested 6 monthly scans would suffice now. Apparently there isn't much data on me (I should say us) so I don't know how exceptional this is, but I am in better shape than anytime in the last10 years. Lesson 1 = don't obsess with stats. Lesson 2 = consider what you can do for yourself. Lesson 3: there's hope.

your update : great news : her 2 positive EC

Hello, that is wonderful news, great for us all to read about. Another lesson, it's real important for people to make sure they are tested for HER 2 and if they don't hear it mentioned by their doctors shey should ask about it. From various comments on various sites not all doctors have it done routinely yet. It makes a huge difference.

Take care .

All the best,

danièle

dfd24 · January 2014

what i say to everybody ask if you were tested for HER2

Hello,

My husband was never given a stage in France, and they went on the premise they would try a cure , but his tumor was very large he was T3N0M0. he was diagnosed in March 2010, had chemo radiation and then the surgery in July 27. he almost died from septic shock after the operation. he was 54 when diagnosed but very fit and did not smoke or drink.

he had a recurrence march 2012 , more heavy chemo april to november 2012 ( 5FU Cisplatin ) then xeloda. march 2013 he showed progression again on the ct scan.

BUT..................

they had not thought of testing him for HER2 in 2012. He was tested 2013, is HER2 positive and is getting a treatment which includes HERCEPTIN.

Right now he is feeling great

if you are HER2 positive it is very important you get Herceptin so it is very important you make sure you

were tested.

all the best,

danièle

mardigras · January 2014

Welcome Dan

I'm sorry that you find yourself here, but welcome to our huge community.

There is a wealth of experience and help here for you Dan, so drop in whenever you want to ask a question, have a rant or just want the company of someone who understands.

We are all in the same boat and together we manage to keep it afloat.

I have a few words of advice for you, if I may.

1/ Get a second opiniion, it's a must. Trawl the internet to find the best qualified Upper GI doctor in Australia and get yourself there.

2/ Keep well with lots of exercise, and huge amounts of juiced fruits (especially the dark red kind like the dark red cactus fruit, beetroot, cranberries etc.) Dark green veggies to.

Grilled salmon and sardines with as many fresh veggies that you can cram in. Quark is great too, blitzed with fresh mango and a couple of teaspoons of linseed oil. Called Lenoil here.

I followed this regime with my husband and managed to reduce his tumour from 8.7cms to 5.2cms without any treatment. Even if it hadn't reduced the tumour, he looked and felt great

on it, so it was win, win. It also helped to keep his mind focussed whilst waiting for treatment.

3/ Get tested for the HER2 gene if you haven't already.

4/ Positive thinking will be your best tool, and remember that we are here to help each other. I wish you all the luck in the world Dan.

Prayers, love and a hug,

Marci

mardigras · January 2014

Tahl said:
Hi ABC321
Hi,

Maybe you can help... my dad has just been diagnsed with EC, we are all in total shock and I'm a mess to be honest! (im his daughter) im trying to find the best Dr's and any support as we are so terrifed right now. We are also in Melbourne, would be great to hear from you.

Thanks

Tahlia

Try a new post Thal

Hey Thal,

I'm so sorry about your Dad.

It really would be helpful if you go first to the discussion board and make a brand new post.

Because your post is hidden in with someone elses, you probably won't get noticed.

You need to say where you are, what the diagnosis is so far and as much information as you have to hand.

You really don't need to say anything personal if yoy don't want yo share it at this stage.

Put something like 'please, I need help' as a subject and you will be amazed at how many people

respond.

My husband is a two year survivor and there is some hope out there, along with a wealth of experience

and a great deal of help.

Hope to hear from you soon. Chin up and take care.

Love and hugs,

Marci

1979bmg · May 2018

Anyone still here?

Just wondering if any of you are still active on this thread. I was diagnosed in August of 2017, Stage 4 adenocarcinoma, (T3, N2, M?). No definite organ Mets but my initial PET and CT scan showed infected lymph nodes all over my abdomen, some noted as "intensely hypermetabolic".

I am HER2 negative.

You can read some of my other recent posts on here, but after 16 rounds of chemo and a clinical trial every two weeks since early September, I had a complete metabolic response as of April 19th.

I am just searching for other long and short term stage 4 survivors to see how they are coming along.

paul61 · May 2018

I am sorry to say most of these folks are no longer posting here

I am afraid this thread is rather old and many of the folks who have posted on this thread are no longer posting. Two of the folks who were posting here are still doing well as far as I know but are no longer activily posting. Unfortunately, three of the folks who were posting here are no longer with us.

Best Regards,

Paul

siutis12 · July 2018

I'm going to beat this

I'm going to beat this without the brutal life changing surgery to remove my esophagus and reconstruct my digestive system. I'm a 56 year old competitive powerlifter and bodybuilder. Four doctors from various disciplines misdiagnosed me. Finally got appropriate diagnosis and underwent surgery two days later to install a feeding tube, mediport, endoscopy and exploratory surgery on the abdomen. 5 chemotherapy session with 23 radiation therapy sessions. Lost 51 pounds of my precious muscle mass that took 43 years to build. 139 from 190. On May 19 I woke up and felt better. I begin eating again with zero restrictions . Metabolically speaking, the tumor energy level went from 10.9 to 4.1. Consequently, I had the feeding tube removed and said no to the surgery. My medical oncologist told me on Tuesday that I had 6 months to live by refusing surgery. The only guarantee that you get with surgery is a set of debilitating side effects with no promise of a extended life.

On Thursday and endoscopy was performed, The tumor is gone. The esophagus is thicker where the tumor once was. My radiation oncologist said we should take a wait and watch approach. He opined that I could possibly get 3 more years.

This disease ruined my life. I had the energy levels of a teenager and the body of a 30 year old. I now have the energy levels of a 90 year old man and the body to match. Professionally, I was employed as a Healthcare Fraud Investigator. I'm on short term disability and it's not possible for me to return to my previous position due to energy levels and mental acuity.

LorettaMarshall · July 2018

36 and stage 4 esophageal cancer

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