stage 4 nsc lung cancer

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RE: stage 4 nsc lung cancer

by LostWithoutHer on Sun Aug 17, 2008 12:00 AM

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It sounds like one of the first things you and your Mom need to do is get another doctor (hopefully that's an option wherever you are)  This can make all the difference in how the journey plays out.  With the right combination of care, compassion, treatment, support and respect you can get what you need to fight this disease.  Her doctor should never disregard your questions, "look at you blankly" or be offended if you ask about options... there are no stupid questions, don't let anyone intimidate you into not asking them! 

Our family encountered several Dr's that were strictly "clinical" in their approach; this did not work well for our family or my Mom.  Everyone is different, so find what works best for your mum.  Once we did finally get a doctor that was honest about our progress and offered hope at the same time, my Moms quality of life dramatically changed for the better. 

Great things are finally coming about in the treatment and detection of Lung Cancer ~ I hope your mum will benefit from these latest advancements.  If you haven't already, go to the Lung Cancer Alliance Website.  They offer a ton of helpful resources to lung cancer patients and their families. http://www.alcase.org/facing/about.html

Good luck and God Bless.  I hope that the days and path ahead are kinder to you and your family. 

RE: stage 4 nsc lung cancer

by sloughj on Sun Aug 24, 2008 12:00 AM

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On 8/15/2008 Chessie wrote:

 

On 8/14/2008 sloughj wrote:

HI I am sitting here at 3 00 a m in the morning wondering how to continue with my life. My mum has beed diagnosed with stage 4 nsc lung cancer. She is not aware or doesn't want to know that she only has months to live.I have to tell my children what the outcome is,and try to remain normal between mum and children., even though I can;t imaine my life without my beatuiful mum.Some of the health  care professioals have been wonderful,some leave a lot to be desired , when informing her of her condition.

cancer has spread from lung to chest (nodule) i think. Sorry to go on, but it helps to write it down

thanks jackie


Hi Jackie,

First, I'm sorry to hear about your mom.  But just because she has stage 4 doesn't necessarily mean it's a death sentence.  With the treatments now days, she can live a long time.  I was diagnosed 2 years ago with stage 4 and cancer in both lungs and I'm still here, working full time and doing everything I always did. 

Get a second opinion and FIGHT.  That's half the battle.  There are many long term fighters on this board.  The key is not to give up and keep your faith.  Make sure she eats a healthy diet. 

When you go to the doctors, ask questions.  Do your research.  There are many people here that will help you through this.  So hang in there and try to keep life as normal as possible.  It will be a lot easier on this journey.

Take care and God Bless.  Keep us posted on what they recommend for her treatments. 


 

RE: stage 4 nsc lung cancer

by sloughj on Sun Aug 24, 2008 12:00 AM

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HI CHESSIE

thanks for the kind words. I have tried to change onocologist without success. Mum will go for radiotherapy this tuesday and friday  and every tuesday and friday for 3 weeks.the onocologist wrote a prescription for mum didn' even speak to us to tell us what it was for  (I found out that it is steriods) It has been an uphill struggle to get any help for mum. The Macmillian nurse saw mum once and is now due to leave, no replacement for her or help for me. Mum received a letter in post from onocologist telling her she had an incurable disease, bearing in mind she wasn't in the room when the doctor told me, we were treated so badly she had to walk out of room .I feel my mum is really scared and not saying anything. I don't really know which way to turn except to keep strong for mum and family. and keep working

we will have to consider chem shortly-

thanks it does help to write it down

RE: stage 4 nsc lung cancer

by Grace_2 on Sun Aug 24, 2008 12:00 AM

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Dear Jackie,  Please don't give up.  Find a doctor who will use Tarceva to treat your mother's cancer.  I was diagnosed With Stage III wet nsmc in April , 2007 and after 6 chemo treatments and daily dosages of Tarceva, 150mg,  the mass was resolved in Aug. 2007.  I have a very good life, some manageable side effects from the drug but extremely blessed to be here.  I am still taking the tarceva, 75 mg-but hoping to increase it to 100.  God bless you and your mother.  Stay positive and active.  Love, Grace2

RE: stage 4 nsc lung cancer

by Susieatmg on Sun Aug 24, 2008 12:00 AM

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On 8/24/2008 Grace 2 wrote:

Dear Jackie,  Please don't give up.  Find a doctor who will use Tarceva to treat your mother's cancer.  I was diagnosed With Stage III wet nsmc in April , 2007 and after 6 chemo treatments and daily dosages of Tarceva, 150mg,  the mass was resolved in Aug. 2007.  I have a very good life, some manageable side effects from the drug but extremely blessed to be here.  I am still taking the tarceva, 75 mg-but hoping to increase it to 100.  God bless you and your mother.  Stay positive and active.  Love, Grace2
Does anyone have any tips for getting Tarceva in an affordable way? My mom has stage 4 non small cell lung cancer and was offered chemo which she refused and Tarceva which she would like to take but the pricetag is 3000 a month and insurance only covers half, hopspital will pay some but they (my parents) can't afford 8 or 9 hundred a month indefinately, they are retired. Has anyone ever stopped taking a drug like Iressa or Tarceva and had the cancer stay gone???

 

RE: stage 4 nsc lung cancer

by Chessie on Sun Aug 24, 2008 12:00 AM

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On 8/24/2008 Susieatmg wrote:

 

On 8/24/2008 Grace 2 wrote:

Dear Jackie,  Please don't give up.  Find a doctor who will use Tarceva to treat your mother's cancer.  I was diagnosed With Stage III wet nsmc in April , 2007 and after 6 chemo treatments and daily dosages of Tarceva, 150mg,  the mass was resolved in Aug. 2007.  I have a very good life, some manageable side effects from the drug but extremely blessed to be here.  I am still taking the tarceva, 75 mg-but hoping to increase it to 100.  God bless you and your mother.  Stay positive and active.  Love, Grace2
Does anyone have any tips for getting Tarceva in an affordable way? My mom has stage 4 non small cell lung cancer and was offered chemo which she refused and Tarceva which she would like to take but the pricetag is 3000 a month and insurance only covers half, hopspital will pay some but they (my parents) can't afford 8 or 9 hundred a month indefinately, they are retired. Has anyone ever stopped taking a drug like Iressa or Tarceva and had the cancer stay gone???

 

Hi Grace,

Tarceva is very expensive.  But there are ways to get assistance.  Start by contacting Genentech who manufactures it.  (1-877-827-2382)

Sometimes they will provide the drug free of charge if you qualify and since they are retired they might.  Doesn't hurt to try.  Also, if you do a search on Tarceva on this site, there is a reply under tarceva that lists a lot of places that offer assistance if Genentech can't help.  Also, contact the social worker at the hospital and ask your oncologist if he knows of any way to get assistance in your area.  You have nothing to lose and everything to gain. 

Tarceva is a wonder drug.  There are a few side effects but they are more manageable than the side effects from regular chemo.  And there are remedies for the side effects. 

Don't give  up.  Contact anyone you can think of, even the Pastor of your church.  They deal with things like this all the time. 

Keep your faith, and may God guide you on this journey. 

God Bless

RE: stage 4 nsc lung cancer

by sloughj on Tue Aug 26, 2008 12:00 AM

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Hi grace2

thanks for yor message of support. When mum finishes her radiotherapy we will have to decide to do chemotherapy. Can she take Tarceva after chemo/ This site has been  a godsend for me . I am able to write down and ask difficult questions. Thank you one and all

RE: stage 4 nsc lung cancer

by Grace_2 on Tue Aug 26, 2008 12:00 AM

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Hi,  The oncologist I went to used chemo and tarceva at the same time.  I had 2 chemo sessions,3 weeks apart, and started on 150mg of tarceva the day after the 2nd. chemo.  I was first tested to see if I had a genetic marker for the tarceva.  This protocol was very effective and the mass was resolved in Aug.  of the same year I was diagnosed in April.  God truly gave me a miracle.  You just need to find the right doctor and I feel confident God will lead you to him/her.  Remain positive and keep your mom active.  I will continue to pray for you both.  Love Grace2

On 8/26/2008 sloughj wrote:

Hi grace2

thanks for yor message of support. When mum finishes her radiotherapy we will have to decide to do chemotherapy. Can she take Tarceva after chemo/ This site has been  a godsend for me . I am able to write down and ask difficult questions. Thank you one and all


 

RE: stage 4 nsc lung cancer

by sergeantmajorette on Tue Aug 26, 2008 12:00 AM

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Mostly they give Tarceva after you finish chemo (and radiation, if you need that too); like a maintenance drug.

Most important, though, is a positive attitude. You really, really, really have to fire that doctor!! That is going to be a pivotal factor in your mom's survival!

As I read, it seems to me that there is one statistical marker for long term survivors - they fired their first doctor! It can be unpleasant to fight with a doctor, but it has to be done. If a doctor won't talk to relatives and caregivers, gives you attitude about a second opinion, and won't answer questions (my brother's first doctor refused to spell the names of drugs or medical terms; he told me not to look things up on the internet!), that doctor is not a competent clinical oncologist.

The current wisdom is that you must treat for the psychological aspects of the disease: the doctor is the coordinator of the "treatment team" which includes relatives, friends, and any support the patient can marshall! When I had my breast cancer scare, the nurses told me to round up a posse, and never go to an appointment alone!

RE: stage 4 nsc lung cancer

by Grace_2 on Mon Sep 01, 2008 12:00 AM

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On 8/24/2008 Susieatmg wrote:

 

On 8/24/2008 Grace 2 wrote:

Dear Jackie,  Please don't give up.  Find a doctor who will use Tarceva to treat your mother's cancer.  I was diagnosed With Stage III wet nsmc in April , 2007 and after 6 chemo treatments and daily dosages of Tarceva, 150mg,  the mass was resolved in Aug. 2007.  I have a very good life, some manageable side effects from the drug but extremely blessed to be here.  I am still taking the tarceva, 75 mg-but hoping to increase it to 100.  God bless you and your mother.  Stay positive and active.  Love, Grace2
Does anyone have any tips for getting Tarceva in an affordable way? My mom has stage 4 non small cell lung cancer and was offered chemo which she refused and Tarceva which she would like to take but the pricetag is 3000 a month and insurance only covers half, hopspital will pay some but they (my parents) can't afford 8 or 9 hundred a month indefinately, they are retired. Has anyone ever stopped taking a drug like Iressa or Tarceva and had the cancer stay gone???

Dear Jackie,  I don't know the answer to your questions.  I have read testimonials from survivors who are still taking Tarceva 5 years after the cancer was resolved.  I do feel sure that you can find some help with the expense of the Tarceva.  My insurance company has been wonderful, but my oncologist had to fight to get them to approve it.  Please don't give up.  There is help. May God bless you as you help your mother.   Love, Grace2


 

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