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Stage IV roll call


AnneM

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Hi everyone,

I've been feeling a little down lately and would love to hear all your voices out there. You all give me strength. How long have you all been survivors so far? It's been 11 months since diagnosis for me (although I should have been diagnosed much earlier) and I'm going strong.

Anne

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I'm sorry your feeling so down Anne.

Tom is at 3 months, 2 weeks and 2 days since diagnosis. Also should have been diagnosed earlier. October when he started getting sick would have been nice. But overall the doc's are amazed at his progress. He still continues to go to work everyday and to look at him (other than not having any hair) you would not know he was sick. He does not look or act sick. A positive attitude goes a long way!!!!

I hope you are not down for long.

(((hugs)))

Denise

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Anne,

6 years this month for me. I won't say I'm going strong because I'm not. My lung cancer is stable and that is the least of my troubles, it's several other health issues that is slowing me down but I still get up every day, make the best of it and get on with it. I have BAC, it's slow in developing and who knows how long I had it until it was detected-- if if if...That's water under the bridge and if is a small word with a big meaning. Try not to dwell on the fact you where not diagnosed earlier, unfortunately lung cancer (late stages) can go for years without being detected due to no early testing like other cancers. Hopefully that will change in the near future. If things are going great and you are going great just keep doing what you have been doing all along and enjoy life to the fullest. No one knows what the future lies for any of us so all that really matters is today. We all get down from time to time, just pick yourself up, dust yourself off and get back on the saddle. Hope this helps, prayers for the best.

Rich

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Hi Anne-

Sorry you are down. I have my days like that, just have to tough those bad ones out and get going again.

In a week, I will be at 20 months since diganosis. I KNOW I should have been dx'd much earlier - too bad I didn't go to the doctor!!!

Other than some fatigue, SOB and swollen feet from the Alimta I am on, I am going pretty strong. I garden, getting ready to do some painting around the house, and I run a taxi service for my son!! I refuse to sit still or lay around. Gotta keep showing the beastie who the boss around here is!!!! :lol:

Hope you can get out of the dumps and start feeling great!!!

Hugs - Patti B.

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Hi Anne,

I'm sorry to hear that you are down, I've been there myself recently. Take some time to let yourself be down, you have a reason, and a right, to do that. Allow yourself to experience the range of emotions that you are feeling. Eventually you will work your way through them and get back to a better place.

I think if you ask anyone diagnosed at stage IV that they will tell you that they should have been diagnosed earlier. I know I started seeing my doctor one year prior to my diagnosis for symptoms that were ultimately determined to be caused by my cancer. A sharp pain in my back, unbelievable fatigue, and finally, the cough. I used to think about all that a lot more earlier on, but I found that it takes too much strength to keep up that kind of anger. I finally let it go ... mostly.

This month marks 2 years and 2 months living with stage IV. I have 3 kids, ages 13, 10 and 6, and with only a few exceptions, I have been able to keep up with the sports, music lessons, and scouting, as well as the drama that comes with having a teenage girl in the house!! I feel so fortunate that for the most part my health is good. I exercise regularly, walking a few miles a day whenever I can, and I have a great cirlce of friends and family who keep me focused on living, not dying.

I hope that you will soon be feeling better.

Tracy

I

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Hi Anne. I think I fall into this category now given very recent history and so have had a bit of a down past week as well. Yes the hindsight thing, think of it often...but not much we can do about that but it sure is hard to let go of.

I am a 8 plus month survivor at the moment. And boy some days it is hard to think of yourself in that way....survivor mode. So I totally understand. You are also young like myself and we both have young children. Helping your kids get through this is so tough.

And I see you have gone through considerable pain as I am just experiencing now, really for the first time in any of this. I had major SOB until fluid drained upon diagnosis, and had to recover from some surgery...but that was just wussy pain compared to where I am at now. So, I have much compassion for what you have been through.

I guess everyday we just need to get up, smile, give lots of love, and just carry on. But that is easier said than done. Oh yeah, and laugh alot, that really helps me...anything stupid and funny is more than welcome in my day.

I hope you have a great day today...

Sandra

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Hi Anne,

I am a Stage IV Adenocarcinoma survivor since Dec.2005. That's 2 yrs., 5 months. I had mets to my liver and spine at diagnosis. So far I am doing really good at keeping the cancer at bay. I have had some growth in the liver mets, but it has been minimal. The lung nodules are stable. No growth on the spine either. I am the widowed mother of three sons, one of whom passed away from Osteosarcoma (bone cancer) at the age of 28 yrs. just 4 months before my diagnosis. My other two boys are teenagers and I have legal custody of my 6 & 4 yr. old grandsons. Although I did retire from my job ( I am only 50), the boys keep me plenty busy with school, sports, doctors and such. My job was in the Emergency Room of a children's hospital as a respiratory therapist. I could not continue with that job while on chemo. I would have put myself in jeopardy every time I entered the ER. The kids are sick, you don't know what they have, they cough and spit, and touch everything. They are just walking germ bags! Anyway although I miss the job, I think it's better for me AND I get to spend all my time with my kids!

There are some days when I feel down in the dumps too, but most days are good. Sometimes you just have to take it a day at a time - or sometimes and hour or even a minute at a time - just like in AA or other 12 step programs. My philophosophy is " If I wake up and I can get out of bed - it's a good day!" Really, I just try to focus on the positive things in my life instead of the negative. Everybody has negative things in their life and there is always someone worse off than you. I really hope you feel better. Stay strong!

God Bless,

Sharon

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Thanks everyone for all your support. I've just been in a slump where I can't turn my brain off thoughts of wanting so desparately to be here for my kids. For now, I'm just enjoying all the little moments of joy and soaking them all in like a sponge. I'll snap out of it. I've got 16 years until my daughter graduates high school, I have a lot of fighting to do.

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Dear Annie. I am a 5 years sur. 4 IB & almost 1 1/2 Stage IV. I am feeling good, can do almost everything. My big problem Is I get depress all the time. We need to follow what Rich said.

Come on cheer up. There are so many new things now that we can live a long, long time.

Best of luck & a big hug

bucky

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I am a 4 yrs 2 month survivor. When I was initially diagnosed I was stage IIIa, and in January 2006 I was restaged to iv because of mets to my bone.

The roller coasters that dealing with cancer can bring are pretty touch some days, but I try to focus on things that bring me joy and happiness. I try not to punish myself when I am feeling down - I embrace it and then let it go.

I wish you all the best in your journey.

Wendy

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I am at 4 years 8 months and am going strong. Originally diagnosed 3A. I was considered stage 4 when spread to other lung in Oct 2005 (so 2 years 7 months at stage 4 --- and coming up on 2 years since I had a large brain met surgically removed)....

Rich is 6 years at stage 4. There are plenty of stories of Hope. Greg Anderson beat lung cancer and has survived 27 years after originally being diagnosed stage 4. (read the cancer conqueror)

Joe B

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Stage IV here!

I was diagnosed 17 months ago with Mets to the spine and brain and am now NED. I have some crazy Tarceva side effects going on - but other than those I have been feeling pretty good!

With my kids I have been giving myself little goals, see my son graduate high school, see him start college, see my oldest daughter graduate college, the next one is to see my middle daughter graduate college - little steps are easier to hope for and pray for,

Let the sadness come - but don't let it overtake the happiness. When I get down - I force myself to stop and look around at all my blessings. And then I say a prayer to God thanking Him for those blessings and asking Him for just a little more time.

Peace to you

janet

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Hi Anne - sorry you are feeling down. I am a 2 1/2 year survivor, diagnosed Stage IV NSCLC (50 year old, good health, non-smoker). The cancer is still there, but much smaller than at diagnosis and it hasn't left the lung. So I'm hoping to be around a while longer. My doctor has a great attitude - treats it like a chronic condition; no likely cure, but always hope for a long life with treatment when needed. I'm going to see my son graduate from H.S. this month; at dx that didn't seem likely. So find hope in everyone's survival stories!

By the way, cute kids!

Marcia

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Hi Anne -

I am also a Stage IV survivor. I was dx in October 2006 - NSCLC with mets to brain and bone.

I know just how you feel - I have a 3 1/2 year son and I have been in a similar sort of slump. I just want to be here for him and to see him grow. I can't stand the thought of him having to deal with losing his Mom.

My last scans in April showed that things are stable, but now I seemed to have caught a cold that reminds me of the "symptoms" I was having before anyone ever thought about the possibility I might have cancer....so of course that justs puts me into panic mode and throws me into all those thoughts of sticking around for Jack.

You are right - we have a long time until these guys are graduating and stuff - so let's keep fighting!!!!!!!!!!!!!!!!!

Col

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Hi Anne!

Just wanted to write to you, although I noticed the thread is old. I'm 8 months survivor on stage IV now (adenocarcinoma, with liver mets). I was reading this thread and dadstimeon really summed it up, if I may quote:

"pick yourself up, dust yourself off and get back on the saddle"

All the best from Finland!!!!

Jussi

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hi! I was just wondering if there are any successes for people for are smokers. my father recently was diagnosed with stage 4 poorly diffrentiated adenocarcinoma with brain mets. he has smoked over 50 years. Quit right before diagnosis. Just need to hear some stories of hope from smokers. Thanks.

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I smoked for 40 years or so. Quit 2 weeks before surgery. I wasn't a stage IV, but had been a heavy smoker. That was in June, 2003. A year and a half later, a tumor was found in the other lung. I had surgery and chemo again. So, yes heavy smokers do have a future.

Muriel

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Hello Anne,

There is always, it seems, a time for feeling "down" with this disease. We know the walk.

I have been there as a caregiver and Bill has been there, as well, as a survivor.

His comes out differently than my feelings. He exhibits frustration - especially when fatigued with chemo regimen. But, soon, bounces back with some new activity, or project.

The good side, Anne, is that Bill (dx w/stage IIIB 3 1/2 years ago and became stage IV within the first year following his original dx) is still here enjoying life, and able to have many good chemo outcomes. We look ahead to even better treatments.

God Willing, we are also looking forward to our celebrating our 53rd wedding anniversary this coming September, and Bill celebrating his 78th birthday in

October. It's a happy goal.

We love to "see ourselves" into the future. It's a bolster to our thoughts.

Having "down" days is very normal, but goals are great to have.

Keeping you in my thoughts, dear Anne, for good outcomes, and beautiful goals.

Barbara

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My mom is a 11 1/2 month stage IV lung cancer survivor. Her one year anniversary is coming up on June 6th. She has a scan coming up next week, and she lives fearful that the cancer will come back. She is still dealing with the side effects from chemo and WBR. She is grateful to still be alive, though, and tries to stay positive, even when sometimes it is difficult.

Hang in there and know that you are not alone!

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thank you. it's good to hear that there are smokers who also are beating the statistics. i still worry though, since my father lost a significant amount of weight prior to his diagnosis and it is not operable. (the tumor is 7 cm and is encasing his left pulm artery and invading his left pulm vein. he has a bunch of positiive lymph nodes (subcarinal, paratracheal and supraclavicular). he is doing ok right now. recently finished 10 WBR and just finished 10 chest radiation to try to open his left lung (which it did). he is awaiting to start chemo and has gained 10 lbs. he is eating great. he has not really gained any muscle tone back though.

i worry that he is going to suddenly spiral down rapidly. i am finding it hard to live each day instead of thinking about the inevitable and when it might occur. I worry because i am able to be off for work for now and stay with him, but i won't be able to later on. I don't live near by. he lives alone since my mother died a year ago. it is all very stressful.

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  • 2 weeks later...

I am really inspired by the great stories on this page. I am wondering if anyone else has some suggestions for stomach pains following chemo. I completed 15 rounds of whole brain and 12 to my soine and hips. I think that the combop with chemo really hurt my gut. At times I have rel cramping and pain with my stomch-makes it hard to eat and rest.

This week is my son's graduation from high school and I pray for the energy to be fully present.

This restin is a new way of life for me. I am looking forwrdato connecting wiht you all on this forum.

Thank you for being out there.

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anne,

I'm sorry I'm answering this string so late. Between work and the kids I have so little time. In 6 more days I will be a two year survivor. I started off stage IIIA but soon advanced to stage IV. I believe I was stage IV all along and that they missed the adrenal gland tumor initially. I don't dwell on whether it could have been caught earlier. It is what it is. My baby girl is only two and like you I have got 16 more years until graduation and really want to be there. You need to believe that miracles can happen, and we could survive long term. People have proven that it is possible and that survivor could be you.

A big hug to you

Lilly

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I guess I'm the junior member of this group in that I was diagnosed not quite 6 months ago. No noticeable change since dx except some aches from the bone mets in the pelvis area and they respond very nicely to ibuprofen. Re smoking, I've smoked for 53 years (yeah, started at 11) and will continue to do so as long as it's enjoyable. (I still have no cough or breathing problems and still have lung function over 90%.) My only 'treatment' is two daily shots of Lovenox for clots -- I had pulmonary embolisms and was SOB and passed out twice and that's in fact how I came to be diagnosed. The Lovenox and the vena cava filter they put in have solved that problem. So far, so good, subject to change without notice. :)

Ellen in PA

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