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survivors of Terminal Stage 4 lung cancer

Stardust1
Posts: 44
Joined: Jul 2008

Dear Members,
Please let me know if there are ANY survivors out there with Stage 4 Lung Cancer, (Terminal)taking radiation.

God Bless All

Stardust

costello782
Posts: 19
Joined: May 2012

Hello - I am hoping that you may check this message...my husband is also 33 and has been diagnosed with stage IV non small cell lung cancer. I understand that your husband has small cell but I was hoping that you could share any information. My husband has been accepted into a clinical trial with 3 drugs that he will receive every 3 weeks. Praying for you and your husband.

Mionie30
Posts: 1
Joined: Mar 2009

My mom was just given the news of having stage 4 non-small cell lung cancer on March 9th. We found out 2 days later that it has spread to her brain. Radiation was started the very next day. Chemo is an option, but the doctors seem not to want to. Given my moms long history of health, they are worried she will live the remainder of her life ill (they have given her 6 to 9 months at most). She has been a fighter her whole life, she was born in 1957 in Brockton, Ma. She and 1 other baby survived, a staff infection went thru the ward and killed all of the other babies. She has spent her whole life fighting odd infections and illnesses, that have left doctors stumped. She has been physically disabled most of her life and has been limited to everything. But even with her hard life at only 51 today, she still keeps smiling and getting up every morning with hope. I don't know how she does it!!! I can't sleep and I stopped wanting to eat on March 9th. I can't stop thinking of the numbers; 6 to 9 months. Those 2 numbers are forever in my mind. I just don't know how she is doing it. We are fortunate to live in Ma, with the great Boston hospitals. The radiation treatments have been spread out, as my mom is at risk for infections, more so then the average person. We are going to Dana Farber on Tuesday to see if my mom is a canidate for any clinical studies/trials. Keep your fingers crossed and pray if you can. I will pray for all those dealing with and caring for someone with Cancer. Cancer is everywhere. My father has also been fighting lung cancer since last spring, but he has been a good prognosis, lets hope in a few months that when he goes for another scan its still as positive, he has 2 small children from his second mariage and they deserve to live and grew with their dad. It's been a tough year to say the least. I really needed to get this out, thanks for listening. Take care, hope to hear from someone soon.

~Mionie30, MA

nanaof7
Posts: 127
Joined: Feb 2009

I am sorry about your mother. I am a few years older than her and have been diagnosed with stage 2 lung cancer none of my dr. give prognosis they have told me they are not God and just treat my disease their best. I am wondering if anyone else's drs. are like this I myself don't believe in giving me a time I am going to die.If your mother is a fighter than she will know how to deal with this. tell her not to give up.

pattig1968
Posts: 2
Joined: Apr 2009

I too had a Mom with non-small cell lung cancer ..and took care of her. Love her, cater to her her and give her whatever she wants. If it breakfast time, give her her favorite dessert. My Mom's was ice cream or jello. It slid down without any trouble. and she really enjoyed it...Does it really matter what she eats as long as she enjoys it....All I wanted to do was to make my mother confortable and what little she could eat, she enjoyed it...Love her and make sure she knows it.....You are her little angel...so help her fly to God's arms peacefully! take one day at a time...............

lisamariec
Posts: 3
Joined: Apr 2009

Hi there - my heart broke when i read this... i can not sleep either - my mom is going through a similar diagnosis. How is your mom now?? It's hard sometimes to stay positive, eh? I'm trying but having difficulty. Miracles happen EVERY day though - that i know for certain.

Fran83
Posts: 12
Joined: May 2009

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

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

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
Posts: 12
Joined: May 2009

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's picture
stayingcalm
Posts: 656
Joined: Feb 2007

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

nanaof7
Posts: 127
Joined: Feb 2009

how did they discover the mets to the brain I had surgery for adenocarcinoma the end of may
my dr. does chest xrays and cts but nothing else. so how am I going to know if it spreads to somewhere else the likely places I hear are the brain liver and bone. any info you can give me will help

my5sister's picture
my5sister
Posts: 8
Joined: May 2010

You are welcome to read my sisters posts.to http://dianedeacon.memory-of.com/About.aspx She had a day to day log she was writing. She sadly passed away 6/26/10
My thoughts and prayers are withyou and your family.
God Bless

david f
Posts: 12
Joined: Aug 2010

My wife also had a tumor removed from her brain that metz from her lung. She went through 15 rdiation treatment to make sure it was all gone. they waited a month to start chemo because it would have been very physically trying to do it sooner. She had her 3rd treatment yesterday and has one more to go. they will then do a pet scan to see how it is going. So far her blood counts are fine. I've heard of cbl502 clinical studies but I am not sure how close it is to being put out for use. It sounds encouraging but the side effects -- who knows>
dave

Gabias
Posts: 10
Joined: Aug 2009

My prayers are with your mother and your father at this very tough time. Please don't stop trying. Keep hope alive and stay focused. I know it is not easy and to that matter, I must say that until I found this site I feel much better to read other's feedbacks. Trust me, you mother and father will surive. Prayers will help. So, please don't stop praying, and we will all pray for you too. Jerry

suebloom
Posts: 2
Joined: Apr 2009

I am a survivor of stage iv lung cancer......diagnosed 7/08.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Congratulations!

Take care,

Joe

Fran83
Posts: 12
Joined: May 2009

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

halfpint1
Posts: 6
Joined: May 2010

That is what I wanted to hear. I am strong and I will beat this. Survival stories are what I am looking to hear. I think it is the faith you have and the will to live and the attitude. Thank you,

BrendaRae
Posts: 20
Joined: May 2011

Greetings;
My husband has been diagnosed with lung cancer. The news he has received from the doctor's is not encouraging. What is frustrating is that they said he could be stage 4 but they don't know yadda yadda yadda. However, given the circumstances-he has been in the hospital seven days-he is holding up really well. His spirit is amazing and as much as I hate to see him endure all of these tests and procedures I can say this much he is tougher than I could ever be. It seems he is somewhat of an inspiration to the nurses, etc and I have heard them talking to him in the background while we were on the phone together. One said she would not be in for three days and that she expected he would home before she returned. We are not sure if it will happen that quickly, and while I cannot wait for him to come home I just want to be sure he gets all that he needs at this time while he is there.

This has been extremely difficult for me for there are so many things left unmentioned even to him and here I am sitting at home literally wanting to scream and 99% of the time I am pouring my heart and soul out so much to God that I have literally worn myself out.

I myself and refusing to give up or give in-and my husband is not giving up and his spirit is so strong it shows just how much will he has over this. But, hearing all of the negatives-or should I say-non-definitive scenarios is turning me upside down. I know God has a hand in this, and I know that in spite of things miracles can happen and even something as horrid as this can be beat. If anyone can and wants to beat it that is my husband but me, I am in a state of brokeness that just will not quit and if he is coming home soon-he will then take up treatments at the nearby clinic-then I have to work really hard on getting myself together. Being apart for us is horrid, and I will be glad when he is home but I don't want to be such a mess that I make that upsetting for him.

Could you all keep he and I-his name is William, mine is Brenda in your thoughts and prayers? I really need an advocate in my corner because I am literally having to deal with alone.

merrilee100
Posts: 4
Joined: Jun 2011

Hi Brenda~I just finished reading your post and I was amazed at how similar our stories are. My husband went to the ER about 10 days ago with what he thought must be pneumonia or bronchitis. He is 56 and a non-smoker. After several days of testing he has been diagnosed with Stage 4 Lung Cancer. The doctors are not at all encouraging, show little empathy and are frankly, very confusing. I am so frightened that it's almost unbearable. And I literally DO scream at times. My husband seems so very much like yours. His spirits are high, his attitude is amazing. I'm trying so very hard to be strong for him as well as our 2 sons and 2 grandchildren. Yet most of the time I feel as if I'm walking around in a daze. My thoughts are constantly of him and wishing there was something, anything I could do to offer him the strength and encouragment that he so desperatly needs.

I would love so much to have someone to correspond with who understands a little of what I'm going through. I'm also a very good listener :) At any rate, you and William will be in my thoughts and prayers. My name is Merrilee and my husband is Dan. Thanks so much for sharing your situation and helping me to see that what I am experiencing isn't abnormal. I wish you both God's blessings. Thanks~Merrilee

starrfilled
Posts: 5
Joined: Jul 2010

Sue,

I would like to speak to you. My mother was told she has stage 1v she is 74. Went recently for her biopsy. We will know more the 23rd. Please email me at starrfillednights2007@yahoo.com. I would like more details on what you did to beat this and how long a survivor you are.. and if it ever came back anywhere else? I want a guide from someone who survived this before my mother becomes a guinea pig or experiment in the drug arena that may kill her.. like it did my dad..when he chose to stop. Thank You.. Leah

andiques
Posts: 1
Joined: Apr 2009

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!

Fran83
Posts: 12
Joined: May 2009

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

Mariasdaughter
Posts: 2
Joined: May 2009

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
Posts: 12
Joined: May 2009

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

derrald
Posts: 3
Joined: Jun 2009

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

kleimank
Posts: 1
Joined: Jun 2009

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.

kchristn
Posts: 1
Joined: Apr 2010

Kleimank: We just found out today that my mom has lung cancer and we are all in shock and looking for any help we can get. You said you found the best Drs and surgeons for lung cancer and am wondering if you could please share those names with me. We are considering going to Mayo clinic which is not far from us or the University of Wisconsin Cancer Center. Are any of the doctors that yuou found from those centers. Any help you can give me would be so appreciated. Thank you for your time

fish49flea53
Posts: 2
Joined: Sep 2010

My husband had stage 4 lung cancer and the doctors told him it was terminal and he would die from it. We were devastated and my husband just gave up no matter how much i tried to reach out he wanted to die so he died on September 4, 2010 after 4 months of fighting it. If the patient wants to live and does everything possible then they have more of a fighting chance but my husband was tired so he just gave up. It's the will to live that is on a person's side. My husband was just 53 when he died.

btill48162's picture
btill48162
Posts: 5
Joined: Oct 2010

I am sooo glad that you posted this to let everyone know. I brought the Temodar up to my mother so that maybe we could see if my step-dad could try it and of course she only argued with me that it was only used for people with melanoma. Thankful for that argument because she did the research on it. Since I had cancer as a child and have been cancer-free for going on 14 years, I usually just go to my oncologist for a yearly check up. While we were there, my mom asked the doctor about possibly trying the Temodar on my step-dad and to our surprise he told us that it would be ok to drop hospice and my step-dad is going for an MRI tomorrow and back to see the doctor on Friday with the reasonable possibility of starting the Temodar, so we are VERY excited! Thank you again for sharing this information.

roseann4
Posts: 993
Joined: Sep 2009

Hi Derrald,

I don't know where you live, but I would keep looking for docs who can use creative or perhaps get her into a study. I'm in a support group and one of our members was in a similar situation and was put into a study and his cancer is in remission. Even the docs were surprised. He's doing great! There is another Stage IV women in our group who had a biopsy done to find the right chemo to hold her cancer back as much as possible. Time may be what you are buying but where there is life there is hope. They keep coming up with new drugs and treatments so keep in the game. One of our members who had prostrate cancer 4 years ago went to Yale, Sloan, and ended us with a new treatment in Atlanta.

Good bless you both during this difficult time.

Roseann

janegrant
Posts: 1
Joined: Aug 2010

Forget statistics. Two years ago last month they told me my husband had the same diagnosis (stage IV nsclc, a couple months left at best. We got the 5-10% speech as well, so we decided to find out how to become part of that 5-10%.
Find the doctor you need. Someone who can answer questions, someone who will let you hope. It's a good sign if he/she doesn't give out odds. You don't want to be burdened with them. Get a second opinion if you need to. Ask your local American Cancer Society to help match you up with the right doctor.
Get informed. Get organized.
Write things down. Pay attention. Keep track of what doctor you saw, when you had a procedure, the list of drugs she's on. Ask questions. Find out what resources are available to you. Don't be too proud to accept help. Don't be too polite to ask questions anytime you don't understand. You're fighting for her life.
Say thank you to everyone. They'll remember you for it.
Make the best decisions you can based on the information you have. That's all you can do.
We've been at it for over two years now with mixed results. But we haven't given up. It doesn't get easier, but it gets different. The initial terror recedes. You'll discover strengths you never dreamed you had. You can't control this. But moments of happiness and appreciation are still possible and it would be a shame if you missed out on them because of the cancer.
I wish you all the very best success.
God bless you both.

hope4dad
Posts: 4
Joined: Sep 2010

hi janegrant, my dad was just diagnosed with 3b nsclc last month. he starts chemo & radiation this week. I am scared and devastated - trying to stay positive and trying not to obsess on the statistics and numbers. i loved your post. thank you

loxajoy
Posts: 3
Joined: Sep 2010

I was diagnosed with stage IV lung cancer. (At first they thought it was
a lung infection. I was opened up and closed because the tumor was pressing
on my aorta and my spine, and the surgeon basically told my daughters (both in
their 30')that I was ready for Hospice. That was 7 months ago, and after
radiation and chemotherapy, I'm still here and my tumor has shrunk over
80%. There is hope. I know how hard it is to stay positive, but I think
that's a must. Good luck and stay in touch.

Steve12
Posts: 2
Joined: Sep 2009

Got my diagnosis on August 15th. NSCLC adenocarcinoma. All happenned by accident. Turned out it mets to some of my spinal joints and the have started the same chemo regiman as you, and want to do radiationin a two months.
So far no adverse effects to the chemo.
Reading your post has brightend my day.
Thanks

indydorsey13
Posts: 38
Joined: Sep 2009

andiques Thanks for that GREAT encouragement...My husband has just been diagnosed with stage IV NSCLC..We are waiting for our meeting with oncologist to discuss the facts about his cancer and treatment....It's also in some lymph nodes but no major organs (?) Was your's in you lymph nodes to ? His tumor is 56mm x 46mm. I actually hand wrote ALL of your story of encouragement for him to read... The Dr. said his prognosis was poor, and this kind of cancer is difficult to treat !!!! I't most difficult to deal with...

starrfilled
Posts: 5
Joined: Jul 2010

Hi,

Can you please email me at starrfillednights2007@yahoo.com. My mother is 74 .. just completed a needle biopsy. Prior to..was told she is stage 1v but they can't find a primary.. without the biopsy. Nothing showed up on the Pet Scan. She is active still.. altert..cooks.. cleans. She drives. She has one 3 cm nodule on her right and two on her left lung.. same size. Hers are stable.. But.. I heard as you age with hormones that is normal for it to grow slower. I want to know.. if your still to this day in remission. It is now July 2010. Please email me.. I also wanted to know what strength Chemo combination they used on you..if you could find out so.. I can have a guide line. Thanks Leah

Sue_J
Posts: 15
Joined: Apr 2012

Such great news for you! You are an inspiration for those of us fighting the fight. Prayers are all important indeed.

Sue_J

Fran83
Posts: 12
Joined: May 2009

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's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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

Fran83
Posts: 12
Joined: May 2009

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
Posts: 12
Joined: May 2009

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

phampleman
Posts: 16
Joined: Nov 2009

my mom was on this avastin as well she had stage 4 lung cancer i think this was a big help for us she no longer has signs of cancer thank god for our grteat dr. and our god......god bless,patty

hope4dad
Posts: 4
Joined: Sep 2010

joe, your posts are very inspiring. thank you for sharing your life

delser
Posts: 5
Joined: Apr 2011

I have recently been diagnosed with recurrent cervical cancer that has spread to mu luings. I am on cisplatin andpaclitaxel. My hair is now falling out and it didnt with just the cisplantin.

Mariasdaughter
Posts: 2
Joined: May 2009

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
Posts: 12
Joined: May 2009

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

Aughrim
Posts: 1
Joined: Jun 2009

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
Posts: 1
Joined: Jul 2009

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's picture
stayingcalm
Posts: 656
Joined: Feb 2007

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...

maricusa420
Posts: 2
Joined: Sep 2009

my husband has supposedly been in stage 4 since dec.07..he was doing chemo and radiation and i think even though he was getting sooo nauseas and loss of appetite, he should have continued with chemo via i.v six months of tarceva and it just didnt do nothing. but everybody is different. the only side effect he got from the tarceva was a bad rash.my husband is a fighter and we will not give up.god bless you.if in 2-3 months , you see its not working...move on to the next treatment option, dont wait, like some doctors do.!!!

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