Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,27166,0.htm Mon, 23 Nov 2009 00:00:00 GMT Mon, 23 Nov 2009 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/  On 8/26/2008 sergeantmajorette wrote: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! HI thanks for your message. I have tried to change Onocologist's. Guess what Mum has finished her radiotherapy with no follow up. I now have to try to speak to the medical secretary to see when we can see someone , (or what is going on with her case if anything)hard nor what. Meanwhile my mum is in severe constant pain, (her doctor has been brilliant).I wish our NHS system was a bit better.i am her main carer there is no one elseI am sorry that i sound so negative feeling a bit worn out with home life work and mum. sloughj Thu, 25 Sep 2008 00:00:00 GMT  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, Grace2Does 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  Grace_2 Mon, 01 Sep 2008 00:00:00 GMT 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! sergeantmajorette Tue, 26 Aug 2008 00:00:00 GMT 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 Grace2On 8/26/2008 sloughj wrote:Hi grace2thanks 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  Grace_2 Tue, 26 Aug 2008 00:00:00 GMT Hi grace2thanks 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 sloughj Tue, 26 Aug 2008 00:00:00 GMT  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, Grace2Does 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 Chessie Sun, 24 Aug 2008 00:00:00 GMT  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, Grace2Does 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???  Susieatmg Sun, 24 Aug 2008 00:00:00 GMT 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 Grace_2 Sun, 24 Aug 2008 00:00:00 GMT HI CHESSIEthanks 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 workingwe will have to consider chem shortly-thanks it does help to write it down sloughj Sun, 24 Aug 2008 00:00:00 GMT  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 downthanks jackieHi 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.    sloughj Sun, 24 Aug 2008 00:00:00 GMT 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.  LostWithoutHer Sun, 17 Aug 2008 00:00:00 GMT  On 8/15/2008 Lenny Peacenik wrote:hi,Jackie.. I will have been on Tarceva for  3yrs. come dec.,and other than manageable side-effects, I am living my life.my tumors in both lungs have been stabilized,and life is great.attitude & exercise are vital in fighting this disease!.....LOVE & PEACE! hi thanks for your messageare there any noteable side effects of this drugthanks for the positive input sloughj Sun, 17 Aug 2008 00:00:00 GMT HIThanks for your message of support. it meant a lot to me.Mum and I are awaitng contact from the cancer nurse, who spoke to the onocolgist friday, to see when her radiotherpy starts. We did go to her Doctor who was no help at all . I mention Tarceva for cancer and he looked at me blankly. My mum said That I could discuss anything with him concerning her, he wasn't happy about that.It's hard to remain postive upbeat when you are fighting a battle to get basic treatment, and trying to support your own family who are devastatedat losing their Nanny.thanks anyway sloughj Sun, 17 Aug 2008 00:00:00 GMT hi,Jackie.. I will have been on Tarceva for  3yrs. come dec.,and other than manageable side-effects, I am living my life.my tumors in both lungs have been stabilized,and life is great.attitude & exercise are vital in fighting this disease!.....LOVE & PEACE! Lenny_Peacenik Fri, 15 Aug 2008 00:00:00 GMT  I just found found out that my dad has stage 4 lung cancer. I live 1500 miles away and it is so hard to deal with. Not sure what to do. I have always felt this closeness to my dad. He is getting so sick and hurts really bad they just starting to give him morphine. I think i first found out he had cancer about a month ago. I want to see him but also very scared to see him. I want be able to remember him as i last saw him. He is always trying to get everyone to laugh no matter how he is feeling. I have not seen my dad in about 4+ years. I just don't have the money for that.  Will i ever be able to forgive myself if i can't get there?   I am so scared! i MISS HIM ALL THE TIME AS IT IS.         Jenn~ Jlo0033 Fri, 15 Aug 2008 00:00:00 GMT Hi, Jackie - I'm so sorry to hear about your Mom.  Don't give up, tho - I was dx in 4/05 with Stg 4 nsclc, with mets to the brain, bones and liver.  The docs were sure I would be gone with 14 months at best, but thanks to a wonderful oncologist ( 3rd opinion ), a high-quality diet, exercise and Tarceva I'm still here and leading a normal life.   I think the previous writers are also correct - you Mom and you can decide to fight this horrible disease and that attitude can help immensely. God Bless you and your family.Bentley Bentley Fri, 15 Aug 2008 00:00:00 GMT  On 8/15/2008 bevbertiger wrote:Hi Jackie - Do not give up I met a lday who also had he same diagnosis and is now on tarceva for 4 years and her cancer is in check. You need to find another doctor and fight and insist on being aggressive.  You need to give it your all. Good luck and keepus informed.  Bevb I have been on Tarceva for 2 years with no recorded advance of stage 4 broncheoalveolar lung Ca. Tarceva seems especially effective in this cell type  with side effects I can live with. It is worth a try Johnh Fri, 15 Aug 2008 00:00:00 GMT Hi Jackie - Do not give up I met a lday who also had he same diagnosis and is now on tarceva for 4 years and her cancer is in check. You need to find another doctor and fight and insist on being aggressive.  You need to give it your all. Good luck and keepus informed.  Bevb  bevbertiger Fri, 15 Aug 2008 00:00:00 GMT  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 downthanks jackieHi 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.    bevbertiger Fri, 15 Aug 2008 00:00:00 GMT  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 downthanks jackieHi 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.  Chessie Fri, 15 Aug 2008 00:00:00 GMT 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 downthanks jackie sloughj Thu, 14 Aug 2008 00:00:00 GMT