My Name Is Tony

[anthony amos]

Just got the biopsy they say its Metastatic Adenocarcenoma

will have pet monday but asked the dr what his guess what

stage and he said 3 because its on my spine liver and Lymph nodes in my chest

The biopsy was taken off my spine

[eric byrne]

Good Morning Tony,

Its a beautiful Autumn morning here in Scotland,its nearly 9.00am,I was up late last night attending a really enjoyable 21st birthday party.Why should I introduce myself to you like this,having read your posting?Just over two years ago my doctor gave me the news of my lung cancer dx,he mentioned some time later after my treatments were complete,when I asked if I could go back to work,his reply? better not,since you have only two years of life left,why dont you take some quality time out with your wife.

Tony,you must be feeling your world has fell down round about you,it is a hard blow to take on the chin,but hold on a wee minute,my doctor has failed miserably in predicting my demise,in fact I have never felt better in all my life,incidentally my oncologist was more than a little annoyed with my GP,and told me to ignore him,since his prediction for me is 15-20 years if not a cure.As you may guess I prefer my oncologists opinion.

Take some time to read the buddies survivor stories here and you will find I am one of the least remarkable of survivors.

This LC dx for me has been a cloud on my life, but it really is one that has a great big bright silver lining,it has taken me to places and meeting people I would have never met and experiences I would have never believed,too many to mention here,but I will mention one,I was invited by the Roy Castle LC Foundation Org to attend a LC Advocates Conference in Manchester as a guest speaker to present to a large audience of delegates,to describe my cancer journey and how to become a more pro-active advocate in getting more public attention and support for LC.

My real point is Tony,dont think this dx is closing a door on your life,think of it as more a door opening into a new life,meeting some real lovely people here,and new oppertunities to enjoy better life experiences you cannot even begin to believe-yet.My very best wishes to you as you begin your journey,take one day at a time dont think too much about to-morrow,as for treatments?well I didnt recieve radiotherapy as we call it in the UK,I did recieve the cocktail they dont serve in bars,messrs cisplatin and vinorobean? followed up with a op to remove the upper right lobe.You know what?I sailed through the lot honestly with the slightest of discomfort,ok I did have a wee episode of constipation,and had I found here earlier the buddies here would have told my to drink loads of fluids,so I would Have probably missed that also.

Oh another thing just before I go off to Asda (I am doing my hero bit again modestly of course dont want to show off so dont mention this to the buddies here,they think my head is big enough),I am helping shoppers to pack their groceries for money for LC with other Roy Castle supporters.Where was I? oh yes the buddies here are a right nosey lot,what they really enjoy is a no holds barred in wanting to get to know you more and how your treatments are progressing,dont mention to them I told you.See you later Buddy all the best.

[eric byrne]

OOps,

Sorry Tony I often click the submit button before previewing my post first for grammatical errors or spelling mistakes,just noticed i before the e except after c,write 500 lines Eric.

[Donna G]

Welcome Tony. How do they know for sure it is in your spine and liver before you have the Pet Scan ? Did they Biopsy your Liver? Hope they Pet Scan goes well . Let us know how you are doing and what the Pet Scan shows, and what the plan is. This we all know is tough news to hear.

Donna G

[ts]

Tony,

Welcome aboard. Good for you finding this site so quickly. I think you can find lots of help here and on www.cancergrace.org - a site moderated by oncologists but written in lay language, more or less.

Clearly, you will be receiving treatment once the doctors determine the best plan. Are you in pain from the spine mets or any of this? Most of us had more trouble with chemo than Eric, but we got through it. It really helps to get that plan in place, to know that you are getting treatment. In the meantime, if you are not sleeping or feeling overly anxious, it is very appropriate to ask your doc for anti-anxiety meds. You want to be as healthy as you can be going into treatment and throughout it. Maintain a good weight, some exercise if you can handle it, and a good attitude. Gather a support system that feels right for you and be gentle with yourself.

And because you are looking at the internet and will figure this out anyway, metastatic lung cancer is Stage IV. The stats are awful, so don't bother to read them. Assume you will be in that long tail to the right on the chart until proven otherwise. Someone has to be there, why not you?

[Bud Baker]

Welcome, Tony. Glad you found us.

This first part while you're waiting on everything is the scariest. Once there's a plan, you'll feel better. Here's hoping you do great on treatment. Keep us updated.

[anthony amos]

Had PET scan, waiting for results.

2 days later had Bone Scan AND Brain MRI

Doctor called back day of Brain MRI and stated there is a

small nodule on the left lobe. We are waiting for

authorization to see a Neurologist. (Don't you just love

the US health care system.)

Still have Radiology Oncologist appointment for next tuesday.

I am feeling a bit blindsided by this new development. Some of the shock has passed, now anger and ready to do battle.

[Sandi721]

Hi Tony, like you I am newly dx, I went from finding a knot in my neck on Sept 23 to being dx with lung cancer on Oct 14. Like you say it knocks you totally off your feet at first and then once you get over it you bounce back and say wait a minute you are not taking me down and that is where I am at now. The worst part for me was the waiting for all the tests to see if it had spread, I have had the cts the brain cts and the pet scan. It is in my left lobe, 2 lymph nodes paratracheal and 2 small spots in liver. So I now have a treatment plan in place and am starting Monday, I am going to fight all the way.

I saw that someone on here recommended cancergrace.org, to you, they also did for me and it is a wonderful site, everyone is so helpful.

Good luck and glad to hear you are getting a fighting spirit now.

[eric byrne]

Hi Tony,

Great to hear from you again,hope things go swimmingly for you.You know I just love America,and its people,its films,writers, musical theatre gosh I could wax lyrical for ages,the one thing I cannot get my head round,is health care is part of the profit and loss business world,surely everything is fair game in seeking profit,but not access to healthcare.I have read stories of Americans but for the want of money,have to do without access to the healthcare they need (40 million Americans I have read)The amazing thing for me to discover is that 58% of your population think its just fine and dosnt need changing.OK Eric people are gererally smart,so they must have rationalised over their lifetime,on balance they are correct?How can this conclusion be derived?.I wondered,my lifetime experience as a Scot and a Brit my salary has a column Gross Pay it is then subject to deductions,income tax,superannuation(my pension)and national insurance(my health care and everyone elses) I am left with my net pay,I can tell you I am only interested in the bit net pay,honestly I couldnt tell you what my respective deductions are,i only notice what I am left with.OK,the American slant,by comparison as imagined by Eric,you sit at a big desk once a year in your nightgown with a lit candle to illuminate the scene,you have little piles of coins on your desk,which is your gross annual income,you push one pile of coins to one side and say thats for the IRS,thats for my medical insurance,and this is for my pension,the rest is for me,hooray,but wait a minute,if we change the healthcare provision to include the less well off,dosnt this mean I may have to pay a little more?thats socialism or even communism isnt it?oh we dont want that now do we?.Well jesus might ask later,did you love others as yourself?40 million Americans might give you a reply.

[eric byrne]

Sandi Hello,

Where on earth have I been?seems I have missed all your previous posts,unless my altheimers has been playing up again,excuse me while I climb off my soap-box-thats another million American friends I have disenfranchised myself from?.Its just I get so grrrr,having read of Judy's experience trying to get access to Tarceva,or Becky's problems being made unemployed through no fault of her own,despite being one of the smartest people on the planet.Ahem,sorry about that Sandi,you must be wondering what kind of strange creature I am,anyway welcome to LCSC,I am really glad to meet a new friend,really enjoyed reading your post above,seems to me you are going to do really brilliantly in dealing with LC,you have the right attitude,dont let it scare or intimidate you,I wish you well with your treatments,and have plenty of years here,giving us your patter.

(Glasgow venacular for chat)God bless.

[eric byrne]

Oh Sandi,

We've got something in common,I forgot to mention,I was dxd with Lung Cancer on the 14th of October also,but in 2008,on my favourite pop singers birthday,Cliff Richard,you probably have never heard of him,he had plenty of No1 hits here and around the world with his group called the Shadows,he celebrated his Seventh birthday this October,and guess what he has close links as a sponsor to Roy Castle LC Foundation.org and as I am an offical advocate also it seems I have a good chance of running into him(theres still a ten year old boy inside me,wanting to meet his hero)

[Trawna]

Hello Tony and welcome to the site you wish you didn't have to be at. But there are lots of folks here, both survivors and caregivers, who may be able to help you as you navigate this new ocean of change.

Eric, as a Canadian I totally understand and agree with your view on healthcare costs amd payment. My husband had kidney cancer in 1992, a heart attack and stroke in 2001, a triple bypass in 2001, and lung cancer for which he was treated for between 2007 and 2009, and if we had not had medicare we would have had to sell the house to pay for the treatments. Instead, it cost me for the PET scan ($3000) which was not covered, plus approximately $600 all up. In addition, in 2008 I had a hip replacement plus a week in rehab, again which cost us about $450 all included. We didn't get this for nothing, we had paid into medicare (both of us) for almost 40 years, but the bottom line was that when we needed it the costs were covered. It makes such a difference when you are very ill to know that you are not bankrupting your family in order to pay for appropriate treatment. In sddition, 80% of all prescribed drugs were paid for by my private insurance (and had we been over 65 we would have had all medications covered). And all this without any controversy or even forms to fill out.

It is such a huge difference that my daughter (who is Canadian but at present a permanent US resident) and my son-in-law (American) have decided to move up to Canada permanently because, among other things, they simply cannot afford US health care premiums. My son-in-law broke his thumb 3 years ago, and just that alone cost them $10,000.

[jaminkw]

Welcome Tony. I'm sorry I missed your earlier post but am glad to hear you are back in fighting mode. That's a good one to be in. I stay there as much as I can since my 3b dx 3 years ago. Let us know when you get the PET results. Waiting is a real bummer!

Judy in KW

[eric byrne]

Hello again Tony,

Hope you are doing OK,it it alright if I borrow your string for a moment while I talk to Trawna?-you dont mind?

thanks I will keep it brief.

Hi Trawna,

Thanks for your reply,nice to know I still have friends,despite my habit of putting my foot in my great big mouth.First of all,Iam sorry about the loss of your husband.I am really shocked by your revalation that despite having Medicare and having paid into it for nearly forty years,you still had to pay for a PETscan and contribute further towards the costs of a hip bone replacement,your son-in-law paid $10,000 for treatment for a brocken finger? has your world gone mad?.

I buy a new car,it comes with a warrenty say valid for five years,dont you get cross when after eg the clutch fails after one year and they tell oh a replacement is not allowed, its outside the warrenty because blah,blah,blabbity,blah,normal wear and tear etc.Dosnt everyone see that they are in a insurance scheme that parallels automobiles with human beings.

OK Mr Smith,says the doctor,lets see now,tests come back show your heart has a dicky Mitral Valve,unfortunately I checked your warrenty sorry Medicare policy,and your heart has 70,000 miles sorry you are 70 years old,and there is a bit of natural wear and tear,not really been keeping to a great diet have we,over the years,sorry but you arent covered.Oh by the way,about your flat feet.

Its just too rediculous for words,anyway I hope on the plus side,your daughters move back to Canada brings her nearer to you.(By the way I have been wondering for ages where does Trawna come from?).Its been fun replying,look after yourself,byee.

[Jyoung20]

Hey Anthony... Are you from Mississippi? Just checking..

[fillise]

Hi Tony!

So sorry to hear about your dx, but glad you found us. We will do our best to help you with treatments and to answer your questions. In the beginning it can be tough to deal with the shock and all of the information you have to process.

Susan

[anthony amos]

Had pet stage 4 lung cancer. It has metathesized to my brain, adrenal glands, blood,liver, Lymph nodes and spine. marked for radiation start Monday 5x a week for 5 weeks then chemo. here we go bring it on is there anyone who has beat this ? I am dam well going to try.

[eric byrne]

Hi Tony,

If we are still here to reply to you,then we are beating it,you have the right attitude,go get the treatments,fight it all the way.You have my support every single day,I am rooting for you to beat this,as all the buddies here are.This can be beaten,take one day at a time,Monday begins the fight back.My very best wishes and prayers are for you.

[ts]

Hi Tony,

Well that's a nasty spoonful. Make sure you have some good support through your treatment. Ask when you need assistance. Be gentle and kind with yourself.

Do you know if the doctors had your biopsy tested for the EGFR and ALK mutations? These specific tests can come in handy if a first line of chemo doesn't take care of the beast.

Are you getting radiation first due to pain or risk of fractures associated with the bone mets?

When you find out what chemo you will receive, let us know - someone will be familiar with the typical side effects and can add their expertise. Or hopefully, you'll breeze through the whole treatment like Eric, as just a bit of a bother and go forward with new and interesting adventures.

Let us know how you are doing. Best.

[fillise]

Tony--not the best news, but we have many long-term stage IV survivors. Radiation then chemo is a good plan. Radiation help get those nasty mets and then the chemo comes in for the rest. Attitude is half the battle and I'd say you've won that half already!

Susan

[Sandi721]

Tony I am just as determined as you are to beat this and the meds and my faith I will. I see lots of people here still around to talk to us and that gives me faith everyday.

[eric byrne]

Hi Tony,

Its nearly 7.00pm in Bonnie Scotland just now,I havent the foggiest what the time is with you,but I am thinking about you today as you have your first session of radiotherapy,you may have already finished it now? I hope you have the very least of down sides,I have heard the therapy can leave you feeling a bit tired,so rest up in front of the TV,or a good book if you are able to conscentrate on one,I also hope you have loads of friends and family around pampering to your every need,eg peeling grapes for you,reading to you the TV schedule,maybe even someone who can provide you with a great big hug.If you are up to it,drop us a wee line or two,to let us know how you are doing.

[eric byrne]

Hi Sandi,

Good to see about the forums,of course your are going to beat this,come on and join in the fun posting into the Morning Air,a new contributer is always welcome,you to Tony.