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36 and stage 4 esophageal cancer

DanTheMan
Posts: 24
Joined: Feb 2012

Gday,

Well to introduce myself,my name is dan,im 36 and from australia.Around august 2010 i was diagnosed with stage 4 esophageal cancer with it also detected in a distant lymph node in my neck.I Had 28 days of radiation to my esophagous and lymph node and two rounds of chemotherapy ,immediatley after my swollowing improved dramatically in the following week.I am extremley lucky and fortunate as i have had a positive result from very little side affect.At one point i had a feeding tube in my stomach another through my nose,a portacath in my chest and i couldnt swallow even the smallest amounts of food.The doctor has from the beginning ruled out any type of surgery and said it would be a waste of time as it has already spread and in incurable.I have had 3 monthly ct scans for the first year and now i just get them every 6 months and my blood tests every 3 months.So far so good,the tumour shrunk considerably and nothing has shown up anywhere else.Its really hard to find anyone my age in a simliar situation and i live in constant fear of recurrence.The doctor says he is unknown territory and is suprised at the outcome so far.Some friends and family have said"wow great to see you cured,lucky for you that you have beaten cancer"...In all honesty i dont know how to react with it all...can advanced esophageal cancer be cured with just radiation and chemotherapy?my doctor has never mentioned a CURE,just prolonging my life...sorry that im australian and this is an american website its just there is very little resources in australia on this type of cancer....
dan

Wpturner05
Posts: 120
Joined: Aug 2011

Dan,

Thank You for coming here and posting. Your story brought a smile to my face - for you. My husband was diagnosed at 36 in November of 2010. Originally stage 3 - we did all there was to do to prep for surgery in April of 2011, but it was found to have spread to his liver in March. Unfortunately, he lost his battle to this beast within in December. There are a few stage 4 people on this site that are living in a very similar situation as you - I can think of 2 maybe 3 - I hope they see this a correspond with you.

I occasionally check this site looking for hope and uplifting stories like your own. Yes, it is still selfish - my reasons for coming here, but I think I need it. He left behind an incredibly huge network of friends and family and myself and our 8 and 12 year old. So, again, selfish as it is, Thank You. I cannot offer you a whole lot, but I certainly hope that others in your situation come along and post.

Live you life Dan, enjoy it. Live every day with faith, hope and love. You will NEVER regret it.

Sincerely,
Whitney

BobHaze's picture
BobHaze
Posts: 157
Joined: Sep 2011

Just a brief mention that this beast knows no geopolitical boundaries, and there are Brits, Aussies and I think at least one Kiwi who post regularly on this site. So don't be shy, ask questions when you have them, and I think you'll benefit from the wealth of information here.

Good luck, and God bless.

Bob
T1aN0M0
dx 8/3/11
MIE 9/23/11

sangora
Posts: 218
Joined: Mar 2011

Doesn't matter where you live, EC is there. I to am a Stage IV and am a few weeks from celebrating 2 years of life with this disease. Your doctor is correct, there is no cure for stage IV's. Many loose the battle within the first year so I feel truely blessed to have had the time I have had. I have done the radiation thing, and the chemo cocktail and now am on yet another drug to keep things stable. There is a new posting here from an individual into the 4th year as a stage IV. This gives me hope that if I continue to press on, it is possible that I can enjoy another year or two. I have good days and not so good days, but on the whole life isn't bad. Keep posting Dan, we all give each other hope. Sam Stage IV.

mam132
Posts: 20
Joined: Nov 2011

I am also extremely lucky in that I have had little side effects to the cancer. I am stage 4 which is by the way a lable that I hate with a passion. What does it mean? How long will you live? How will I feel? What will I die from? Don't bother asking for an answer because NOBODY CAN ANSWER OTHER THAN GOD.

I will tell you to say the hell with the cancer. You are in a very unique catagory in that you are very young and there is not much information on the books for people your age. Remember, when the knuckleheads are putting these statistics together you age being lumped with people from everywhere at every age. Enjoy your life and if you feel good enjoy that. You may live for years, who knows.

My Doctors say's things like you have exceeded my expectations or most recently she said this is almost to good to be true. I love her to death but Doctor's need to know that a stage 4 patient is listening to EVERY WORD THAT IS SAID. Then we evaluate it to try to make sence out of it.

Anyway, Keep your chin up and beat this thing.

Michael McDonald

Wpturner05
Posts: 120
Joined: Aug 2011

Michael,

My husband and I had made the decision to live life as though he had a medical condition that needed to be managed. Not cancer that was going to kill him. Now, ultimately it did, but we did not live that way. A difficult task indeed, but one I am grateful that we tried to do.

Agreed, chin up and live.

dwhite0002
Posts: 130
Joined: Jan 2010

Dan,

I am 37 years old, and am a 5 year EC survivor. I too had an advanced stage. I was fortunate it had not spread to the lymph system. Have you had a second (or third) opinion? We should talk.

David,
Hillsboro, OH

DanTheMan
Posts: 24
Joined: Feb 2012

Great to see a long term survivor!..:)I havent had a second opinion since it all began as i guess i have had the best possible outcome i could have hoped for so far.I only had two 5 day rounds of chemo at the beginning and end of 28 days of radiation and since then i have had positive results with no sign of it so far.At first the doctor talked about a cure,operation etc but then i had a biopsy on a swollen lymph node near my collar bone and it came back positive for cancer and he told me my chances for long term survival were pretty low and the treatment would be pallative and not to cure it.After doing my own research i assume that its because radiation and chemo will kill most of the cells but a few can remain and cause recurrence.(this is just my simple understanding of it).I do know that the longer i go without any signs of it then the more chance i have for long term survival.
dan

dwhite0002
Posts: 130
Joined: Jan 2010

Dan, I really think you need another opinion...As young as you are, I think it would be wise to see as many experts as possible. Please let me know if I can help you along your journey.

Best Wishes and Godspeed,

David

DanTheMan
Posts: 24
Joined: Feb 2012

First of all thankyou for the quick reply everyone.I am not sure how to reply to everybody at once so i just reply to my own post and maybe that shows up on the page?
I am really glad i can put a smile on your face whitney :)im so sorry to hear about your husband and i have no right to say i know what you are going through...I guess some things are out of our control even though it can be cruel..:/
At first i thought "why me?"then i thought"why not me?"im just like everyone else in this world,ive seen kids in the oncology and i think "oh well at least ive had 36 years so far"so i never really have felt sorry for myself,sometimes angry,sometimes its easier just to say and think nothing.
Its great to see people like yourselves micheal and sam that have a positive outlook on it and i do 99% of the time try to keep my chin up.I guess the hardest part is the unknown,the fear of recurrence,trying to lead a normal life.I havent worked since before my diagnosis and its really hard for me to adjust back to how my life used to be.
I spent most of last year travelling around asia getting some life experience in different cultures and just after christmas have come home to a whole new beginning.
Now the hard part....where is that beginning?my mind has been so focused on the fact that i have cancer and now its like i dont know where to start...kind of silly really,you would think after 1 year i would snap out of it.
I think at first i read way too much information on google and prognosis,statistics,percentages,treatments,alternative treatments etc what to expect and the doctor telling me the worst outcome..."what did he die from?"they would say"was it cancer?""no no" the doctor says"His head just exploded"!lol..
dan

ABC321's picture
ABC321
Posts: 52
Joined: Oct 2011

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

Tahl
Posts: 3
Joined: Sep 2013

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

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

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

 

dsmasters
Posts: 22
Joined: Nov 2009

Hey Dan, my name is Dan too and I was 35 when I was diagnosed with stage 3 two and a half years ago. I went through chemo/radiation and then had a reoccurrence 4 months later. Since then I have had 2 esophagectomies, more chemo, and over 30 (yes 3-0) other procedures to combat EC. I have officially been cancer free for about a year.

Through all of this we decided to live our lives as if each day was our last together but plan like we are going to live to be 100 (my grandfather will be 101 in 2 months). Through this I discovered that I also had celiac disease so I have had to go gluten (wheat) free. There is no cure for celiac and it puts me at a great risk for recurrence of EC. This is just something that I am going to need to deal with for the rest of my life however long that may be.

What having EC has done for me is that I now see how valuable my relationship with my wife and kids is. It is not that it was not valuable before but there were a lot of things competing against them. Now nothing does. Live your life. Don't let anything hold you back. Be in control of your destiny as much as you have control. Make good memories with your family that will last not only your lifetime but theirs as well.

I hope this and what everyone else has been saying is helpful.

lyndez
Posts: 22
Joined: Apr 2011

Hi Dan

My husband (48 years old)was also a stage 4 EC with liver mets diagnosed in January 2011. He was in the operating room for an esophagectomy but then they saw it had spread to the liver, so surgery was stopped. The resident doctor told him to go home and take care of his affairs. He had 10 radiation treatments and 6 chemo treatment with the last one being in September 2011. Pet scan in October showed complete remission. He has been doing alternative also such as vitamin c iv and many other supplements to keep the immune system up. He feels great and has regained all of his weight back. I would suggest to you to look into low dose naltrexone to prevent recurrence. My husband has been on it for 9 months now and the last CT scan last week showed the 3 liver lesions barely visible (pet scan confirmed no activity) you can get the information at ldninfo.org. You have nothing to lose and there are very little side effects with this drug the only drug you should not take are opioids. Good Luck and be positive.

mario33ec
Posts: 22
Joined: Aug 2011

I am 34 and was diagnosed in July 2011. I had 10 days of radiation followed by chemotherapy. The side effects of the chemo put me in the hospital twice and I almost died in December. And just this last week I had to go back for a blood transfusion as my hemoglobin was very low.

I have had dark moments but continue to think positive and fight this condition. Once I took care of my affairs I told myself that while death is a possibility (or reality) that I would live each day and HOPE.

People on this board are straight shooters and will hammer home the point that you have no hope. I say that that you have to hold on to the possibility that anything is possible and you can beat the odds. New treatments are always emerging,DR's are not gods, and everyone's experiences range.

I would not personally focus on death, rather about what others have said about living and managing your symptoms. Best of luck....

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Mario,

We all know the realities of EC, and some here may be more vocal than others. But for me - straight shooting means always having hope, always looking for the sunshine in the day.

I don't believe that anyone here would suggest anything other than living EC life with knowledge, focus on the day, on the moment, and having the best damn day possible.

Terry
wife to Nick, age 48
dx T3N1M0 05/19/11
28 rads / 2 weeks inpatient Cisplatin & 5FU
THE 09/08/11
Clean Path 09/13/11

JReed's picture
JReed
Posts: 463
Joined: Nov 2011

Hello Dan!

As you've already seen - unfortunately, this cancer is a possibility for everyone. It has no particular rhyme or reason that I can see, for who gets it. There is surely a 'common denominator' somewhere, but has yet to be discovered. Men and women of ages and walks of life have been diagnosed with EC.

I too worry about the recurrence and my husband hasn't even had the surgery yet. I feel a lot like you do - yet I know it is out of our control, but I can't help it. I think that once a person is diagnosed with any type of cancer they probably have on the back of their minds - that someday, somewhere, cancer may pop up again. It would only be natural to think that, wouldn't it?

I don't have any answers or suggestions, I just wanted you to know that someone else thinks and feels just like you do.

I've never been to your beautiful country, but Australia is definately a place I would love to visit and explore and maybe someday we'll get to do that.

Best wishes to you and please, come back and post anytime you feel the urge - we love to stick together here and cheer each other forward!

Hugs from the U.S.
Judy & Don

DanTheMan
Posts: 24
Joined: Feb 2012

Thankyou so much everyone for words of encouragement and positive energy.
I have been reading a lot of the posts on here and really dont feel so alone anymore and i realize that not everyone is the same..
Sure im stage 4,sure the doctor said i cant be cured but who knows MIRACLES DO HAPPEN!
Maybe im in that small percentage who for some unknown reason survives this long term :)
Im 36 and never married and dont have any children and not really close to any of my family and friends anymore so my cancer journey is a lonely one and have found this site and everyones insight really helpful.
I have to admit for a long time i had been walking around,head spinning,mind going a million miles an hour,will i live?will i die?will it come back?will i go through pain?Whats that lump?Is my swallowing ok?Will my scan show cancer?Should i eat this?should i be doing this or that?AAARRRRRRRRRRRRRRRRRRRGGGGGGHHHHHHHHH!lol
Enough is enough,Im over it controlling my life to the point where im not actually having a LIFE..whatever happens,happens.....even though i will have these thoughts from time to time i think thats ok as long as i dont let it consume me...
Even if i get to the point where it does consume me physically i will somehow find the strength to smile,i have to,what other choice do i have?:)
Dan
stage 4 SURVIVOR :)

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

Welcome Dan, Yes, miracles DO happen, every day, and hopefully many of the survivors here are amongst them!! (yourself included) Enjoy every day to the fullest, because cancer or no..... you just never know what your life has in store. (you know, the old 'you may get hit by a bus on the way home tomorrow' scenario) laugh and smile and dance like no one's watching!

I've pasted the following quote "People on this board are straight shooters and will hammer home the point that you have no hope" from above, and wish to strongly refute that comment. This is the most caring bunch of people from all walks of life and their intelligence, support and friendship has gotten me through my darkest days. In my last year of posting, no one has ever 'hammered' home the point that we had no hope. We were given honest, straight forward advice, lots of loving words and prayers for success. Upon the death of my husband, I received so much kindness and sorrow from virtual strangers. I continue to post here, because my respect and admiration for my fellow caregivers and survivors. No, we don't lie and give false information, but we are concerned and celebrate every success and cry for every failure. Sure, there may be some who are a bit more blunt than we may like, but, hey it's a free world and we have the choice to pass on by the posts we feel may be a bit too negative.

Anyways, sorry for the rant, I truly just wanted to welcome you here, and please remember, you are not alone, we are all here for you, even if you just want to vent, cry, share a problem or seek advice for treatment ideas.

be well,
Chantal
wife of Lee (ivb, deceased Nov 8, 2011)

mario33ec
Posts: 22
Joined: Aug 2011

Okay-

With regard to my comment about "straight shooters." In no way did I mean to infer that people on this site are not kind, help-full, and above all us compassionate.

My point is that tinged with all this support is the supposition that "your going to die" and there's no hope in believing otherwise-so just accept death and live each day as best you can.

Just because one members loved one passed does not mean that another one necessarily will. And just because someone beats the odds and survives EC means another member won't die much sooner.

My point is that no one knows for sure-people are entitled to their opinions but I suspect that many stage 4s don't need to be constantly reminded that their terminal.

That's the point I was trying to make-and the possibility that with new treatments in the future that this cancer can be treated better.

DanielleD
Posts: 1
Joined: Mar 2012

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

DanTheMan
Posts: 24
Joined: Feb 2012

hey danielle,

Thanks so much for taking the time to reply and tell your story.Its awesome to see that you responded so well to the treatment with minimal side effects,actually really close to my own experience.At first i was told all the doom and gloom and told i didn't have much chance and get ready for a downhill battle etc.
Well here i am 18 months later and still no sign of it returning :) wow well geez i gave away a lot of my things and sold a lot of stuff last year because i seriously thought i would not need it...haha...funny now i do.

The hardest thing for myself was the point where i would say "well ok im a survivor"after 18 months and still going i truly consider myself a survivor because im still alive.I havent really ventured into the cancer world very much and never been to any meetings or talked to anyone about it except for on here a couple of weeks ago,i did mention in one of my posts here about my 'cancer journey' but i dont consider it a journey really,just life,an obstacle,a challenge.

Not everyone is so lucky to get more time or to beat cancer or to get that second chance and im truly grateful for that but i guess its like all things in life,not everyone is so lucky when driving down the road and have a car accident,just one of those things.I suppose you just have to get on with life the best way you can and enjoy every moment and experience.

Really great you have decided to get married,why not i say,go for it.Life is short when you think about it,even if you live to 100 im sure there is plenty of things we could all do if we had the chance.I traveled around indonesia and malaysia last year and climbed active volcanoes and put myself right out of my comfort zone and now im just looking constantly for new experiences and challenges.

In a huge way getting diagnosed with cancer changed me,maybe in some weird way it changed me for the better,funny that.

Dan

Ucsf_smile's picture
Ucsf_smile
Posts: 81
Joined: Sep 2011

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
Posts: 3
Joined: Sep 2013

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

dfd24
Posts: 79
Joined: Mar 2011

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

 

Leej
Posts: 1
Joined: Jan 2014

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
Posts: 79
Joined: Mar 2011

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
Posts: 71
Joined: Jul 2012

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
Posts: 79
Joined: Mar 2011

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

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

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

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