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Diagnosed with lc aged 35 - updated

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Hi all

I wanted to share my story if thats OK.

I do not have cancer but my very close friend does.

It started last year with sever headaches and nothing else. After several months and numerous trips to the GP a scan was ordered. It showed a tumor. The following day an MRI was ordered which showed the devastating news that there were 2 inoperable tumors in her left lung.

At thsi point, although shocked and gutted,we didn't realised that there would be no cure. Nobody said otheise.

Brain surgery and radiation quickly followed, then 4 cycles of chemo. At the end of this (April 2011) a new scan showed a tumor in liver and a spot on the spine.

Now we're given the news. Terminal :cry:

Put on Tarceva and carry on

August this yeat re-scan - not much change just slightly larger in one area

This week re-scan. Results on Friday

This is the short version. Obviously in between all this has been tremendous heartache and upset for my friend and her family. She has 3 children under 10.

I am the brave one. I go round and make the tea, tidy up or just sit and chat.

Then I go home and cry and cry and cry. Its just too awful. I worry all the time when 'it' will happen. Although at the moment she is very well and you just wouldn't know!

thank you for reading :)

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Welcome. This site is opened to anyone who has been touched by LC and having a friend with advanced stage certainly qualifies you. Just want to point out one thing.

Although at the moment she is very well and you just wouldn't know!
That is key. I have advanced stage LC and have been told many times (even by oncologists and other doctors) to go with how I feel. The results of all the scans in the world rest on how the survivor feels and mostly I feel pretty darn good. Dry your tears and read the positive stuff here to your friend and encourage her to do things that are fun. It's all we can do, spend time with loved ones and do things that give us joy. Your continued support of your friend is admirable. Keep posting and we will keep supporting you.

Judy in KW

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Welcome from me too,I really am sorry to read about your friends circumstances,I do hope Friday's scan results bring some good news.Your friend is lucky in having you in their corner,it is a hard journey,lung cancer was never for wimps.I have a friend Robert Lowe who was dxd with small cell lung cancer in 1993,he was given by his oncologist just two months to live,following his treatment,he went on to make a full recovery,to the amazement of his medical team.In 2007 Robert was then dxd with non-small cell lung cancer,had some treatment and again has made a full recovery.Robert is 72 now,full of life and fun,in fact I will be meeting him to-morrow at the Stobhill Hospital Lung Cancer Support Group meeting.I have recently returned from the USA following a seven week trip,to-morrow I am going to (at the members request)bore the pants off everyone,by telling them all about my trip and show off the pics I have taken.Wonder if they will be able to sit still for approx 10 hours ?LOL.

I do wish you and your friend all the very best on this journey,I do think keeping a positive attitude can make a difference,enjoy each day that you can share to-gether.

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Hello again!

Judy in KW made some great points.

Any of us, no matter what, can only live our lives one day at a time. None of us know when that time will be over. As Judy said, spend time with loved ones, and do things that give us joy. I think all of us should do that no matter what a doctor says. Life is precious.

God bless you for being there for her. That is so important.

Do feel free to come and write here when it all gets to be too much, or even when it does not!

Judy in MI

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We're all terminal - but some of us have a disease that isn't curable, even though it can be treated. I know of a few women who have been on Tarceva for over 4 years, and are now looking at the next option (clinical trials or other chemo). That's not the lifetime you want, especially as a young Mother, but it is something.

I mentioned recently that I want lung cancer to be a disease, that if it can't be cured, is thought of as one where we don't measure time in months or years, but one where we talk about seeing kids graduate, get married, and have children. I'm so happy for friends here on this site and in my physical world as they meet those goals and more. Or get Phd's, or get married, or take that cruise.

You are a good friend - not many stick by. We're here for you - and depending on where you live, there may be in person support groups available for you as well. It can really help to know that you are not alone and to have a place to let those emotions out safely.

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I just wanted to say welcome - and how lucky your friend is to have you! I can't add much to the wise information and advice you've already received here - but I can tell you that I have been diagnosed with lung cancer twice in the past 13+ years and I am still here and enjoying life. I always ask my doctor how I'm doing, and he always responds with "you tell me - how do you feel?". So far, I feel good and hope to continue feeling that way for some time to come.

I really like what Stephanie said -

We're all terminal - but some of us have a disease that isn't curable, even though it can be treated.

This is so true, although I think that people who do not have a serious illness tend to lose sight of that.

Please let us know how you are doing.


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I come from the other side of Cancer myself . My late wife never was told what her stage was or how advanced it was. She did not have time to worry about it. She was out to empty her bucket list a as fast as she could do that! She had to try and conquer the world. I was the one who kept track of her condition so I know exactly how you are feeling.

These are the things I did to cope with it when she was really sick . I talked to God. Went outside at night with a glass of favorite beverage at the time and talked to him, Screamed at him said some not nice things and apologized for them. But I said everything on my mind.

I threw Eggs at Trees! Yep You read that right. Take an Egg and write Cancer on it. Reach way back and throw it as hard as you can at the nearest tree! Cancer goes away! write tumor on the next one and repeat the steps..

And Cry, It gts the sadness out of your system if that is what you feel like doing. You can do whatever helps you cope right now! Don't let anyone tell you how to feel or react! Its Your friend!

It Helps...........

Hugs and Prayers to you and everyone around you involved in this fight!

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I am so sorry about your friend. I hope she is one of the people that Tarceva works for. It is a drug that can keep people living with lung cancer a long time. We have many many examples of people here that are living with lung cancer due to Tarceva stopping the progression of the disease. If not Tarceva, there are other drugs on track that may be her ticket to watching her kids graduate.

She and her husband are very lucky to have your support - not many people get that even from family members. Every little thing you do means a great deal to them believe me. I can still remember every dish someone dropped over for dinner, and every kindness shown to us.

Keep us posted on how she does-- and how you are doing too.

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Thank you all for your lovely replies and advice.

I'm afraid it wasn't good news this week. Her primary tumors haven't changed but the tumor in her liver has grown. Drs say this means Tarceva is not affective. SO it has stopped and next week chemo begins again for 4 cycles. Not the same chemo as last time but a much more aggresive chemo that will make her very ill.

It seems we all got a little hope from the change of treatment and there was talk that the tumors may stop growing and possibly even shrink with this chemo. My question to all of you - is why the hell don't they do this in the first place? Does this mean there is hope of curing now or is it that its just going to try and buy more time? I didn't want to burst anybodys bubble by asking this awful question!

And this week has seen another change - loss of motiviation and some 'sick' days. Thats not something shes had all year. ALways felt well until this week, although has needed afternoon naps for a little while they seem to be getting longer. Also a loss of appetite - but this could possibly be from the Tarceva drs said?

Its all so scary.

thanks again, its 'nice' (for want of a better word!) to have a place to come and ask these questions xxxx

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Once the lung cancer has moved from a local tumor in the lung to brain, bones, liver, or other organs, it is not considered curable. But it is treatable.

Since your friend is a young woman (though not necessarily of Asian descent) she presented clinically as a likely candidate for Tarceva. It's a fairly easy targeted therapy and can give excellent quality of life while controlling lung cancer for years. I don't know if they tested your friend for an EGFR mutation? If they did and she was positive for it, Tarceva was a really good choice. Otherwise, they were hoping it was the right choice. The "art" of medicine.

I was on Tarceva for 15 months and then got a new tumor in my liver. I was switched to carboplatin/alimta (also know as Pemetrexed)/avastin (aka Bevacizumab) at the beginning of the year - for 6 rounds, then maintenance avastin for 3, and now maintenance alimta for 3. In some ways, it has been easier (no infections!) but in some ways, more difficult. Infusions every three weeks, for one. It has taken a bit of a toll on my blood work, and I go through cycles of heavy fatigue. But I am older than your friend, and have been more heavily treated. This stuff is cumulative. I lost about 10-15 pounds on Tarceva - just could not eat enough (despite the ice cream) and had a bit of loss of appetite. I've put 5 pounds back on this year, I think. I'm less active.

I don't know what your friend's first chemo was - do you know? The other typical options are cisplatin (really rough on many people), and taxol or taxotere. The last two are the ones most likely to cause hair loss, BTW.

On Tarceva alone, I ended up quitting work after about 5 months. I kept cutting back due to fatigue and lack of motivation, as well as inability to handle stress. When I was unhappy with my work performance and dragging myself to work 3 or 4 days a week, I decided, enough! The next day, I signed up for Social Security Disability. They make you wait 5 months before they start sending checks, but I've been collecting for 15 months now. I hope to collect for years.

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So has no-one ever been completey cured after lung cancer has spread? :shock:

I guess its to prolong eveything then :(

I don't know what her first chemo was but the new was is Docetaxel. They sais should would lose her hair again - but it never really grew back anyway!

Thank you for replying and good luck to you xxxxx

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Well, believe in miracles - I'm sure there have been individuals who have survived Stage IV lung cancer. When I am feeling particularly powerful, I remind myself that my body created these cancer cells, so my body can destroy them as well. For others, prayer is the answer.

Not to be too irreverent, but she could be hit be hit by a bus tomorrow, and then the cancer won't kill her. I'm still looking both ways when I cross the street. (Humor can really help, even when it may seem inappropriate.)

Docetaxel = taxtotere. I have not (yet) experienced that one. Judy in KW is doing pretty well on it, so maybe she'll pipe up when she gets on line. She's traveling at the moment and has limited web access.

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Hi, yes I've been traveling but am back now. Just did chemo yesterday and my follow-up shot is today. Guess I needed to respond to your post. Help keep my own spirits up by telling someone else there is hope. Some years ago I started a thread for advanced chemo survivors. It got quite a response. True some of them are now gone but only after years longer than expected by their dx.

Maybe Donna will come in and respond. She's a long time survivor who still posts on occasion. For me, I've now passed 4 1/2 and have my eye on 5 yrs.

Don't give up hope for your friend.

Judy in KW

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  • 2 weeks later...

One of the reasons they change "up" chemo treatments is that they don't want to exhaust all options right up front. The least invasive is the first choice usually.

Try not to look at this as simply prolonging her life. We all have cancer cells. Some become active, some do not. We are all terminally ill and are going to die someday. But how we live today is what counts.

She may be depressed about the progression to her liver and that is why she is sleeping longer and not hungry. But she should not lose hope. There is ALWAYS hope. Cancer is a word, it is not a sentence. We can live with cancer. MANY of us are doing that here and doing it quite well.

I live my life one day at a time. I learned to do that after I got sick. Before I took years for granted. And the quality of my life was not good. Once I learned that each day is precious and to cherish it for what it is, quality of life went up a lot. As Steph pointed out, we could get schmucked by a Semi-truck today and it's over. We need to keep living well in perspective.

Hugs to you. You sound sad. I didn't notice where you live, but I'd search for a in-person support group for you and her. Sometimes talking to others face to face can be of huge help. I go to Gilda's Club here, and have grown to love those in my support group.

MI Judy

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  • 3 months later...

Hi Slim,

I have been reading the updates and just wanted you to know that you two are in my thoughts and prayers..... I am a 7 year survivor and was diagnosed as incurable... That doesn't mean you cant survive, it just means you strive for an extended remission. Keep fighting and I pray that soon ya'll will find that magic bullet that puts your friend in remission....

Hugs to you!!!


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  • 2 weeks later...

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