survivors of Terminal Stage 4 lung cancer

stayingcalm · May 2009

Fran83 said:
My mom is going through a
My mom is going through a similar experience. She seems to have brain metastesis and they started her treatment a week ago.

First , radiation to the head for 2 weeks (Mondays-Fridays for 10 min). Then the doctor told her to wait for 1 month before starting chemo!!! I am worried that 1 month is too much considering that it can spread even more!

I have done lots of research about the different treatments possible and i have asked a friend from Montreal whose dad has squamous cell cancer. There so much possibilities but which one is the best option?

My friend's dad did radio every week day for 30 min + chemo once every 2 weeks.... He is now in remission.... My mom's doctor said that this is too much and told her to do only 10 min of chemo (and since she is currently doing brain radiation, the doctor told her to have a rest period of 1 month before starting chemo as it could be dangerously toxic!!!)

I know that cancer is everywhere but this is the first time i see it up close.... i love my mom so much and i want and need her to survive this. I feel so frustrated and frightened.....

There's supposed to be this new drug CBLB502 from bio lab pharma in Ohio. Apparently, it puts a tag on cancer cells so as radiation can kill them easier... it has been successful with animals and they have been doing human tests.... apparently, it is supposed to come out in the market soon... but that is all the information i have.... does anyone have more info about this???

I hope to hear from you Mionie and i hope that your mom will get better....
Fran

Waiting for chemo after radiation
Fran83 -
I'm fairly close to your Mom's age (53) and diagnosis - NSCLC with mets to the brain. It was only last December when the brain mets were discovered. I had surgery - a breeze - and then 20 or so whole-brain radiation treatments (and 5 more focused sessions), which were less than a breeze and took a couple of months to "recover" from. I say "recover" in a general way - I'm not so fatigued any more but I have some memory problems, never as much as I read about, though.

Anyway, my oncologist also had me wait before starting medication (Tarceva) - it was at least a month. They want to give your body some time to repair itself from damage done by the radiation before slamming it with more toxic drugs

As it turns out I was thankful for the break since I had a pretty bad reaction to the first high-dosage Tarceva (better now, slowly increasing the dose), and I can't imagine suffering through that while trying to come back from the radiation. So there are reasons for waiting.

Best of luck to your Mom!

Deb

Fran83 · May 2009

stayingcalm said:
Waiting for chemo after radiation
Fran83 -
I'm fairly close to your Mom's age (53) and diagnosis - NSCLC with mets to the brain. It was only last December when the brain mets were discovered. I had surgery - a breeze - and then 20 or so whole-brain radiation treatments (and 5 more focused sessions), which were less than a breeze and took a couple of months to "recover" from. I say "recover" in a general way - I'm not so fatigued any more but I have some memory problems, never as much as I read about, though.

Anyway, my oncologist also had me wait before starting medication (Tarceva) - it was at least a month. They want to give your body some time to repair itself from damage done by the radiation before slamming it with more toxic drugs

As it turns out I was thankful for the break since I had a pretty bad reaction to the first high-dosage Tarceva (better now, slowly increasing the dose), and I can't imagine suffering through that while trying to come back from the radiation. So there are reasons for waiting.

Best of luck to your Mom!

Deb

Dear Deb,
Thank you for your
Dear Deb,

Thank you for your reply. My mom is set to finish her radiation set soon. She did not do any surgery but I think the doctor wants to kill of the metastises and plan to have surgery later on. I am not really sure.

When were you diagnosed and how is your treatment working? Do you do chemo (how often?)?

They are planning to put her on 1st line chemo cisplatin or carboplatin plus paclitaxel.
2nd line chemo: targeted agents or taxol or gen cisplatin....

i heard avastin is a good one but i do not know why her doctor never mentioned it.

I know that she will probably need to rest and strengthen up after the sets of radiation (wbr) but i am just a bit worried that her cancer spreads even more during those weeks that she will not be doing any treatment.

Did you have any complications while waiting for your treatment to start? Was there more spread?

Thank you again for responding. It is really good to useful to hear from people living with this illness and hear that although prognosis is not good that it seems that some people are able to fight it off.

I hope that things are looking bright for you.

All the best,
Fran

stayingcalm · May 2009

Fran83 said:
Dear Deb,
Thank you for your
Dear Deb,

Thank you for your reply. My mom is set to finish her radiation set soon. She did not do any surgery but I think the doctor wants to kill of the metastises and plan to have surgery later on. I am not really sure.

When were you diagnosed and how is your treatment working? Do you do chemo (how often?)?

They are planning to put her on 1st line chemo cisplatin or carboplatin plus paclitaxel.
2nd line chemo: targeted agents or taxol or gen cisplatin....

i heard avastin is a good one but i do not know why her doctor never mentioned it.

I know that she will probably need to rest and strengthen up after the sets of radiation (wbr) but i am just a bit worried that her cancer spreads even more during those weeks that she will not be doing any treatment.

Did you have any complications while waiting for your treatment to start? Was there more spread?

Thank you again for responding. It is really good to useful to hear from people living with this illness and hear that although prognosis is not good that it seems that some people are able to fight it off.

I hope that things are looking bright for you.

All the best,
Fran

Waiting for chemo
I was diagnosed late in 2005, had a couple of months of radiation and chemo at the same time - I had Etoposide and Cisplatin, then Taxotere, all or any of which may have helped to shrink the tumor in my lung. Then my oncologist found a clinical trial for me, a targeted drug, which shrank the tumor still more and kept it stable for 3 years. (although I had absolutely NO bad side effects from the drug except for a day of numbness around the mouth, once a week, other people did, it was cardiotoxic) I would probably still be on it if a mini-seizure hadn't revealed brain mets...no matter how wonderful XL999 was it didn't protect my brain.

As far as waiting, there was no more spread, in general cancer doesn't grow that fast

I know it's worrisome, though, you can't help feeling like the sooner she begins treatment the better. Remember, though, the radiation is still doing its magic well after her last session - I guess it's cumulative; my doctor wouldn't even do a scan for a couple of months after I finished because it was too soon to see improvement.

Thanks for the good thoughts, Fran, my best to your Mom.

Deb

Mariasdaughter · May 2009

Fran83 said:
NSCLC adenocarcinoma
My mother was recently diagnosed with NSCLC adenocarcinoma.
She had a malignant mass in her mediastinum and it spread to her lungs, lymph nodes.
First the doctor said that she was stage 2 but recently we found out that she might have metastisis in her brain and her bones (skull and right upper arm)....

She has started brain radiation to take care of the brain metastisis and she will soon do some rounds of chemo.

What is your story exactly? Where did yours metastisised?

I am getting really frustrated and frightened because we got several medical opinions and each doctor has a different interpretation of the best treatment possible.... Do you have any advice with regards to the treatment that you had.... Did you have radio + chemo...? how often?

i would really appreciate your advice since my mother seems to have the same illness as you do... P.S. My mom is only 51 years old.

Thank you in advance.
Fran

I don't know where to begin
Just got the news yesterday mom has stage 4 lung cancer. Her lung is collapsed and they give her 3-4 months. Chemo not an option because she is too weak. I, too, am an only child and my world is falling apart. Her drs and nurses are wonderful and have taken a liking to her/us. But she'll be leaving this week and I'm so scared.

She is strong, hasn't shed a tear, instead saying ok, this is what you gotta do... She says God's ready for her and she trusts He knows best. And selfish me just says "What about me? I'm not ready for her to go!"

My problem is I don't know where to begin looking for help. They talk about sending her home which is in a small town 40 miles away from me. I have a roommate situation so bringing her home with me not possible. I plan to rent a 1 bedroom this week for us, but then what? Do I quit working to take care of her? I'm so lost and yes, I too cry in the shower so my little one who is 14 doesn't hear me.

Reading the entries here so that my mom is not alone is helpful. Blessings and thanks to you all.

Ruth

Fran83 · May 2009

Mariasdaughter said:
I don't know where to begin
Just got the news yesterday mom has stage 4 lung cancer. Her lung is collapsed and they give her 3-4 months. Chemo not an option because she is too weak. I, too, am an only child and my world is falling apart. Her drs and nurses are wonderful and have taken a liking to her/us. But she'll be leaving this week and I'm so scared.

She is strong, hasn't shed a tear, instead saying ok, this is what you gotta do... She says God's ready for her and she trusts He knows best. And selfish me just says "What about me? I'm not ready for her to go!"

My problem is I don't know where to begin looking for help. They talk about sending her home which is in a small town 40 miles away from me. I have a roommate situation so bringing her home with me not possible. I plan to rent a 1 bedroom this week for us, but then what? Do I quit working to take care of her? I'm so lost and yes, I too cry in the shower so my little one who is 14 doesn't hear me.

Reading the entries here so that my mom is not alone is helpful. Blessings and thanks to you all.

Ruth

hang in there
hi ruth,

i understand exactly how your are feeling. My mom was diagnosed quite recently as well and it is indeed very frightening

It's good that you are staying strong for your mom. You have to continue to be strong for her and for your child. I know it's hard but you will find the stregth somehow.

if you can find a way to live with your mom it would probably be best.

Have you seen different doctors and gotten several opinions. Perhaps there is a another solution like immunotherapy (strengthening the immune system)... or a lighter dose of targeted agents.

I know it is difficult. We have to be ready for the worst scenario but we also need to remain hopeful until the end. we have to fight this battle till the end and try all the possible options... there's hope. some of the stories shared here will give you strength... people getting better or even going in remission when it seemed like all hope is gone.

hang in there and keep us updated on your mom's health. My prayers are with you and your mom.

Good luck.
Fran

Fran83 · May 2009

cisplatin or carboplatin + paclitaxel.
cisplatin or carboplatin + paclitaxel.

anyone has had experience with these drugs?

i heard that cisplatin is more effective than carboplatin but more toxic.

finally is avastin given as a first line chemo or more of a second line chemo?

i would appreciate your advice and good luck to you all!

thank you in advance.

Fran

soccerfreaks · May 2009

Fran83 said:
cisplatin or carboplatin + paclitaxel.
cisplatin or carboplatin + paclitaxel.

anyone has had experience with these drugs?

i heard that cisplatin is more effective than carboplatin but more toxic.

finally is avastin given as a first line chemo or more of a second line chemo?

i would appreciate your advice and good luck to you all!

thank you in advance.

Fran

Chemo after surg
Fran:

Please keep in mind that each of us reacts to chemotherapy different, and that our cancers are going to be at least slightly different. It seems as if they are almost like fingerprints: while they are similar, they are never quite the same.

That said, I was treated with cisplatin for an original tongue/neck cancer following surgery (and during radiation treatments as well) back in '05 - '06. I can honestly say that the cisplatin was the worst of this experience. It made me as sick as I had ever been up to that time.

Even so, when I was advised I would be getting carboplatin and taxol on a weekly basis following an '07 lobectomy, many of my friends on this site warned me that they had received same and found it nauseating as well. I did NOT find this to be the case. I managed this cocktail quite well, actually, relatively speaking.

Again, it is an individual thing, I suppose. I will say that I had to skip several treatments second go-round due to low platelets and/or white blood cell counts. On the other hand, I received those treatments on a more frequent basis.

I am now NED, incidentally (NO Evidence of Disease).

As for Avastin, my understanding is that it is a first-line therapy, although it cannot be used in certain instances, particularly when surgery is recent or pending. You will want to verify that with OncoMan, of course.

Best wishes.

Take care,

Joe

Mariasdaughter · May 2009

Thanks so much for your
Thanks so much for your reply. Things have changed so much in the past few days its crazy. Now the cancer specialist at the hospital says the lung specialist is bonkers and was wrong to say 3 - 4 months left. He also disagreed with the "no chemo" recommendation. She starts chemo the end of the week.

So the way things stand now, they're running all sorts of tests to see where the cancer started because apparently, it wasn't the lungs. Mom thinks its her breast because its been hurting these past few days. She had a mammogram today, and scheduled for a barium enema tomorrow to check her colon. CT scan & bone density yesterday didn't show anything. We'll see what tomorrow brings.

Thanks for the advice about moving to her home. You're right, and once school lets out beginning in June, daughter and I will be going.

Otherwise, mom is upbeat about chemo and specialist's personality is positive, unlike her lung dr who always comes in moody and negative.

How are you holding up?

Ruth

Fran83 · May 2009

Mariasdaughter said:
Thanks so much for your
Thanks so much for your reply. Things have changed so much in the past few days its crazy. Now the cancer specialist at the hospital says the lung specialist is bonkers and was wrong to say 3 - 4 months left. He also disagreed with the "no chemo" recommendation. She starts chemo the end of the week.

So the way things stand now, they're running all sorts of tests to see where the cancer started because apparently, it wasn't the lungs. Mom thinks its her breast because its been hurting these past few days. She had a mammogram today, and scheduled for a barium enema tomorrow to check her colon. CT scan & bone density yesterday didn't show anything. We'll see what tomorrow brings.

Thanks for the advice about moving to her home. You're right, and once school lets out beginning in June, daughter and I will be going.

Otherwise, mom is upbeat about chemo and specialist's personality is positive, unlike her lung dr who always comes in moody and negative.

How are you holding up?

Ruth

that's good news
Dear Ruth,

I am glad to know that your mom will finally be getting treatment and you now have hope for her to save this devil!

If you mom is quite weak, maybe you can ask your doctor on the possibility of having a chemo sensitivity test, to find out which drugs would not work or would be least effective...

i do not know much about it... and my mom will have to probably go to another town to have it as they do not have it everywhere.....

My mom is doing fine for the moment. She is still doing her Whole Brain Radiation (WBR) and once she completes that she will have to do a CT scan to check if it is working... then 1 month rest to recuperate and then she will be starting with chemo. My mom has brain and bone metastisis.

Keep me informed about how your mom is progressing with her treatment.

Good luck and let's pray for the best.

Fran

Fran83 · May 2009

soccerfreaks said:
Chemo after surg
Fran:

Please keep in mind that each of us reacts to chemotherapy different, and that our cancers are going to be at least slightly different. It seems as if they are almost like fingerprints: while they are similar, they are never quite the same.

That said, I was treated with cisplatin for an original tongue/neck cancer following surgery (and during radiation treatments as well) back in '05 - '06. I can honestly say that the cisplatin was the worst of this experience. It made me as sick as I had ever been up to that time.

Even so, when I was advised I would be getting carboplatin and taxol on a weekly basis following an '07 lobectomy, many of my friends on this site warned me that they had received same and found it nauseating as well. I did NOT find this to be the case. I managed this cocktail quite well, actually, relatively speaking.

Again, it is an individual thing, I suppose. I will say that I had to skip several treatments second go-round due to low platelets and/or white blood cell counts. On the other hand, I received those treatments on a more frequent basis.

I am now NED, incidentally (NO Evidence of Disease).

As for Avastin, my understanding is that it is a first-line therapy, although it cannot be used in certain instances, particularly when surgery is recent or pending. You will want to verify that with OncoMan, of course.

Best wishes.

Take care,

Joe

avastin
hi joe,

thanks for your reply.

my mom's doctor has prescribed her cisplatin or carboplatin (depending on her choice) with paxitol as a 1st line treatment and she only added avastin or another targeted drug for her 2nd line treatment.

I am a bit worried about this.... perhaps my mom should get a 2nd opinion but she seems to trust her oncologist...

I am glad that people like you (who has survived this) exist to give us all hope.

regards,
Fran

Fran83 · May 2009

soccerfreaks said:
Chemo after surg
Fran:

Please keep in mind that each of us reacts to chemotherapy different, and that our cancers are going to be at least slightly different. It seems as if they are almost like fingerprints: while they are similar, they are never quite the same.

That said, I was treated with cisplatin for an original tongue/neck cancer following surgery (and during radiation treatments as well) back in '05 - '06. I can honestly say that the cisplatin was the worst of this experience. It made me as sick as I had ever been up to that time.

Even so, when I was advised I would be getting carboplatin and taxol on a weekly basis following an '07 lobectomy, many of my friends on this site warned me that they had received same and found it nauseating as well. I did NOT find this to be the case. I managed this cocktail quite well, actually, relatively speaking.

Again, it is an individual thing, I suppose. I will say that I had to skip several treatments second go-round due to low platelets and/or white blood cell counts. On the other hand, I received those treatments on a more frequent basis.

I am now NED, incidentally (NO Evidence of Disease).

As for Avastin, my understanding is that it is a first-line therapy, although it cannot be used in certain instances, particularly when surgery is recent or pending. You will want to verify that with OncoMan, of course.

Best wishes.

Take care,

Joe

avastin
hi joe,

thanks for your reply.

my mom's doctor has prescribed her cisplatin or carboplatin (depending on her choice) with paxitol as a 1st line treatment and she only added avastin or another targeted drug for her 2nd line treatment.

I am a bit worried about this.... perhaps my mom should get a 2nd opinion but she seems to trust her oncologist...

I am glad that people like you (who has survived this) exist to give us all hope.

regards,
Fran

rosewood62 · May 2009

nubis said:
survivor?
My husband is facing small cell lung cancer. He is only 33 years old. He is stage IV. I don't know if this is terminal, some days my husband looks healthy, somedays he is very sick, future is uncertain. Present is to fight. Of course you think in death, for me is very difficult, when my husband is on pain I think the worst, but then next day he feels better and you just know you need to keep fighting.
We do what we need to do. Rigth now, I just call for clinical trials, to see if my husband can be a candidate. We are trying all the options we have. Of course sometimes I feel sad, very very sad. I cry in the shower, so my husband doesn't see me, because I need to let my feeling get out. I need to be healthy for him. But after that, I keeping searching, keep praying, keep doing what we need to do.

Good luck.

My son has lung cancer
He is just 43 and has terminal lung cancer. It has spread over the last year to other parts of the body. It is so hard when they are so young. He too has his good days and then bad. Keep praying,try to stay strong, That isn"t always possable. And yes we do have to cry and let our feelings out. Our body can't hold everything in. My daughter-in-law also has to find time for self to just let things out. It is so hard kowing they are in pain and not being able to help. Never stop fitting and trying new resources. Our prayers are with you.rosewood62

derrald · June 2009

andiques said:
Stage IV NSCLC already in remission!
We're ALL terminal in the end! Don't let the statistics scare you (even though I did!)... I was dx Stage IV NSCLC adenocarcinoma (inoperable) in Jan 2009. Underwent three rounds of chemo ( Carboplatin/Taxol /Avastin ) and then had a CT scan for assessment last week. I'm in remission already and I have to say that the chemo wasn't bad either -- so MUCH better than in the past. SO ... call it a miracle or call in modern-day progress, but whatever it is, I'm happy as a clam! I attribute it to not only my treatment, but also to BIG support in the form of prayers from lots of folks. STAY POSITIVE by all means because. no matter what, we all need to enjoy whatever days we DO have on this earth. We could be hit by a Mack truck tomorrow! BTW, I also highly recommend The Lung Cancer Alliance for great support and discussion. They are under the umbrella of the "Inspire" network. Check them out! Best of luck!

stage IV nsclc
the stats are killing me! 3 weeks ago wife went to doc for rib pain and persistent cough. the cough started in nov. of 08, she strongly suggested a chest x ray. after the x ray they called for a ct (stat) after which they said "we are so sorry, you have cancer" and then basically gave here a good luck, god bless attitude. sent to pulmonoligist who said "I don't give survival odd's" and after his tests told us it was nsclc IV. non operitive. go see this doc. so I started researching and everythin said has said "no cure" survival rate "5 to 10 percent" I am flipping out. can anyone give me facts? I can battle anything if I have them.

thanking you in advance

Derrald

MadelynJoe · June 2009

pattig1968 said:
hi...my husband's nasophargeal cancer has spread to his lungs
hi my name is Patti....my husband was first diagnosed with nasophargeal cancer in 2005 and received treatment for about 7 wk of radiation and then returned again in 2007 once again he received radiation with a shot of chemo 1x a week..Here we are in 2009 and he has once again been diagnosed with this dreadful disease....this time it has spread to his lungs..about 2cm....we will be going away for the Easter Holiday....and then he will start chemo again....no radiation.....I also cry each and every day ....but out of his vision...Dont't know how I will control this one when we are away.....He has been depressed ...but not admitting to it.....Today I told him to get out of bed or we will cancel our reservations.....I love him deeply ...and been married for 40 years...and can not stand to lose him...But told him that he also has to fight and not give up....He's a Marine....And as we know they are the "Best"....so I told him once again to get out of bed and let's fight....We were told that this time no cure....hello there never was...but only that they can "control" it.....I truly believe that this time it will do the job....I have so much faith...that God will carry us through this...thanks for letting me vent...feel free to do the same

Your Husband
Dear Patti:

I can well understand your distress. My husband is a six year prostate cancer survivor and I am a 4 year nonsmall cell lung cancer survivor. When your husband's Doctors say they can "control" it - they mean it. I know quite a few people that are very long term cancer survivors through my cancer support group. One lady has been treated for metastatic ovarian cancer for 12 years now and she and her husband live active and full lives! I know breast cancer survivors of 20 to 30 years! Our group has long term survivors from every type of cancer imaginable. Metastatic disease can be controlled, you better believe it!

I have been on both ends of cancer; I've been a caregiver for a loved one and I've been a patient. If I had to pick, I would say it was harder going through my husband's diagnosis that mine (because I love him so much). You sound as if you two are very much in love. If you allow yourself give in to the "doom and gloom" thing; you're going to be miserable and so will he.

You are a Marine's wife - you can do ANYTHING! You are accustomed to sacrifice (when he has been on deployment) and you are TOUGH! This does not mean you cannot feel the pain or cry the tears. I have a friend that set a timer for 5 minutes every time she wanted to cry and sometimes had to set it the second time but, she did not give into the doom thing; she stayed positive. Today she is a 10 year breast cancer, double mastectomy survivor!

Put your arms around your husband and tell him something like ... "Our love is strong and we can do anything. We've gone through bad times before and we will do it again. Let's get out there and fight!"

Arm yourself with information. Learn everything you can about this type of cancer and the latest treatments. Don't be afraid to question your doctors or suggest things. You have to be your own advocate in the medical community today. A good doctor will not mind your questions/suggestions. Go to the MD Anderson and Sloane Kettering web sites and get some good information from the experts.

By the way, in case you do not know, when you are searching for information, nasophargeal cancer will apply, NOT lung cancer - even though the small tumor is in the lung. You will still need to search info regarding nasophargeal cancer - the original site.

Sorry this "Pep Talk to the Troops" went too long but, you two sound like fighters and I think you can win this "War".

Best regards,

Madelyn

mcbriz · June 2009

soccerfreaks said:
survivors
Stardust, there are indeed survivors of Stage IV lung cancer, some of them on this very site. I am not sure, however, that any of them were told that their particular 'version' was 'terminal'.

The only exception to that that I know of is me, and my story is sort of strange, as I really didn't have stage IV; they just thought I did due to the spread.

Still, I have at least a couple of friends on this site who are stage IV survivors, one with both small and non-small cell, and the other with small cell, if I am not mistaken.

One recently received a proclamation of NED (No Evidence of Disease) and the other is in at least his third year of college (you CAN teach an old dog new tricks, it seems ).

But I would not want to falsely raise your hopes.

If docs are providing treatment (radiation) then they at least have hope of extending life, quality life, for the person we are talking about it here. I would advise that since that time cannot be precisely measured even in the worst case scenario, that it be lived as if every day were the last, spent enjoying life, friends, family, spent loving and laughing.

Life IS precious.

I know this does not help much, but please know that we are getting closer and closer to actually finding ways to reverse cancers; it is just a matter of hanging in there, in my opinion.

Incidentally, and I do not say this flippantly, birth is a terminal disease.

Take care,

Joe

What is stage IV anyway?
Joe, to your last comment... as my friend said "We are ALL Stage IV."

kleimank · June 2009

derrald said:
stage IV nsclc
the stats are killing me! 3 weeks ago wife went to doc for rib pain and persistent cough. the cough started in nov. of 08, she strongly suggested a chest x ray. after the x ray they called for a ct (stat) after which they said "we are so sorry, you have cancer" and then basically gave here a good luck, god bless attitude. sent to pulmonoligist who said "I don't give survival odd's" and after his tests told us it was nsclc IV. non operitive. go see this doc. so I started researching and everythin said has said "no cure" survival rate "5 to 10 percent" I am flipping out. can anyone give me facts? I can battle anything if I have them.

thanking you in advance

Derrald

MY FATHER WAS DIAGNOSED WITH STAGE IV LUNG CANCER
My father was diagnosed with stage IV lung cancer on September 07, we were told that surgery was not an option for him but it was his only possible cure; we saw three different doctors including a Dr at the MD Anderson, and we were told that surgery was not an option, my father is only 50 yrs old and we were giving a very bad prognosis. I have never giving up, I did a research online and found the best Drs and surgens for lung cancer and wrote to all of them, alot of Drs responded. we live in Austin TX we ended up going to Seattle WA where my dad had a rib an lung resection; he also went through chemo and radiation before and after surgery. On February of 08 we were told that he was cancer free but 7 months later we found out that he had Brain metastasis, we were debastated, because of the location of the tumor he can not get a surgery and he was giving of course a horrible prognosis, like I said we have never given up, he got radiation and a "new" chemo for the brain called Temador, it has worked wonderful for him, Drs. are very impress ans shocked of how well he is doing right now, for the last 6 months his Tumor in the brain keeps getting smaller and there is no desease in any other part of his body including the lung. The Dr. told us that he is doing better than 95% of the people with metastatic lung cancer and that the way he has reacted to treatement is all we can hope for. It has been terrible for my family but we have never giving up and we have done the impossible to get through this; dont let any Dr. or anyone to tell you how far you and your wife can get, keep fighting, do research talk to diffent Drs., look into medial trails, We were told by the Dr that my father is basically a miracle I am sure your wife can be too but never give up and keep fighting and you will be in my prayers.

Aughrim · June 2009

Fran83 said:
that's good news
Dear Ruth,

I am glad to know that your mom will finally be getting treatment and you now have hope for her to save this devil!

If you mom is quite weak, maybe you can ask your doctor on the possibility of having a chemo sensitivity test, to find out which drugs would not work or would be least effective...

i do not know much about it... and my mom will have to probably go to another town to have it as they do not have it everywhere.....

My mom is doing fine for the moment. She is still doing her Whole Brain Radiation (WBR) and once she completes that she will have to do a CT scan to check if it is working... then 1 month rest to recuperate and then she will be starting with chemo. My mom has brain and bone metastisis.

Keep me informed about how your mom is progressing with her treatment.

Good luck and let's pray for the best.

Fran

NSCLC Stage IV and Tarceva
Hello everyone,

I am new to CSN. I was diagnosed with a lung tomour in June last year. I underwent surgery to remove the upper lobe of my left lung followed by 12 weeks of chemo and later 6 weeks radiation. Abnormalities were noticed in both lungs even before the radiation treatment was complete.

I was put on 150mg daily dose of Tarceva almost five weeks ago. Does anyone have experience of how long it takes with the drug before its starts to show improvement?

Nic3241 · July 2009

Aughrim said:
NSCLC Stage IV and Tarceva
Hello everyone,

I am new to CSN. I was diagnosed with a lung tomour in June last year. I underwent surgery to remove the upper lobe of my left lung followed by 12 weeks of chemo and later 6 weeks radiation. Abnormalities were noticed in both lungs even before the radiation treatment was complete.

I was put on 150mg daily dose of Tarceva almost five weeks ago. Does anyone have experience of how long it takes with the drug before its starts to show improvement?

Tarceva and my dad
my Dad has just started this drug after receiving chemo (he has stage IV NSCLC) he couldn't finish the chemo so they decided to put him on Tarceva....i'm wondering also if anyone has any comments (good or bad) about being on it.He was Rx in JAn/09

stayingcalm · July 2009

Nic3241 said:
Tarceva and my dad
my Dad has just started this drug after receiving chemo (he has stage IV NSCLC) he couldn't finish the chemo so they decided to put him on Tarceva....i'm wondering also if anyone has any comments (good or bad) about being on it.He was Rx in JAn/09

Tarceva
I'm taking Tarceva - I have NSCLC with brain mets. I began with 150mg daily which was way too much, considering I weigh in under 80lbs these days (which isn't as bad as it sounds as I'm short). I shortly broke out in hives and my face swelled up so badly I could barely see. After some adjustments - reducing to 100mg, taking every two days instead of every day, and dealing with a round of pinkeye brought on by the Tarceva, I think I've hit the right dosage - three days on and one day off! My oncologist gave me the latitude to experiment so that I get maximum medicinal effect with minimal side effects.

I get terribly dry skin with this medicine, too, but I've found Eucerin Plus Intensive Care lotion to be nothing short of miraculous for this.

At my last scan there were no new growths, I'm due for a PET scan at the end of this month...

seanslove · July 2009

nubis said:
survivor?
My husband is facing small cell lung cancer. He is only 33 years old. He is stage IV. I don't know if this is terminal, some days my husband looks healthy, somedays he is very sick, future is uncertain. Present is to fight. Of course you think in death, for me is very difficult, when my husband is on pain I think the worst, but then next day he feels better and you just know you need to keep fighting.
We do what we need to do. Rigth now, I just call for clinical trials, to see if my husband can be a candidate. We are trying all the options we have. Of course sometimes I feel sad, very very sad. I cry in the shower, so my husband doesn't see me, because I need to let my feeling get out. I need to be healthy for him. But after that, I keeping searching, keep praying, keep doing what we need to do.

Good luck.

watching the pain
Nubis,

Our story is about the same. My husband went from perfect health to down with what seemed like the flu. That was the 1st of April. Due to not having insurance or extra pennies for doctors,he tried to fight what he thought was a really bad cold. On May 18th he could fight no more,could not breath,and finally gave in to trying the emergancy room. Of course they took him. Within a few hours he had a tube in his left pluerl sack to drain the fluid which was causing him not to be able to breath. For the next 12 days he stayed there and they did what they said they never do:sent him home with his chest tube. On May 21st they told us he may have cancer,on May 26th they told us it was mesatitic adrenocarsinmoa,stage four.
From there we have walked a path filled with PET Scans,MRI's,Ultra-sounds,enough blood work to drain a cow,EDG and Colonoscopy,which the colonoscopy had to be stoped because of the omental mestasis at the thrid sigmoid of the colon. From there,two weeks ago this Thuresday he had his medi-port,much to our displeasure placed,as we would have rather went for the IV's instead,however,the doctors refused our request.
Now we sit and wait for answers to the day when chemo will start and if it will really do anything at this point. He has lost over 40 pounds since April,is in non-stop pain. The doctors answers:take this take that,however,they do not offer a schedule which works. This brings us to today;his birthday. Today I have done more research and we are going through trail and error phase of managing pain,pain meds,all in a hope for relief and his desire to eat to return. Has anyone else faced anything like us?

survivors of Terminal Stage 4 lung cancer

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