CancerCompass message board discussion started by Ttbmaat on 1/14/2007 http://www.cancercompass.com/message-board/message/all,8821,0.htm Sat, 06 Sep 2008 00:00:00 GMT Sat, 06 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My dad is just 53 years old and was diagnosed July '06 with stage IV adenocarcinoma of the lung.  His primary tumor is in the apex of his right lung.  There's several nodules in the right lower and 2 tumors in the left.  The cancer was also detected in his lymph nodes.  I am starting to have a difficult time dealing with it now.  It is so weird because he had no symptoms and the cancer was found due to an injury after a fall.  I have responded to others on these message boards, just saying stay positive and keep the faith!  That's what I was doing; it was much easier to do when I honestly thought my dad was on the road to recovery.  Now, it's not looking that way.  I can't believe how fast cancer changes everything!  I broke down and lost it when the oncologist  said he could only prolong my dad's cancer with chemo.  I felt really bad because he is the one who is fighting the disease and I am being selfish thinking about the "what if's".  We have talked about that and he actually said that he's glad that happened, he never doubted it, but knows how much I really love him and care about him.I am just 32 years old. I live in Michigan.  I am a stay at home mom and a nursing student.  I have 5 of his 7 grandbabies.  He is extremely close to my kids because the other 2 live in North Carolina.  He still doesn't want me to tell the kids yet.  I really want to respect his wishes (and have thus far) but my kids had a really hard time when my husbands mother passed away in Nov '05.  My kids are 1, 5 yr old twins, 7, & 9.  It was my 7 and 9 year old that took the news of their grandma the hardest (5 & 7 at the time).  My kids are soooo close with my dad, their papa.  They think things aren't the same because he hasn't fully recovered from his accident.  They don't understand why we can't just pop in anymore.  I never know how he'll be feeling when we're out and about, not to mention the germs.According to repeated tests, everything was going well as of Nov.  Now, my dad is very exhausted, beginning to get the pain back in his shoulder, and is vomitting quite often.  Just 2 nights ago, He couldn't even lay down because it hurt to breathe.  I have so many unanswered questions within myself.  All in all, I only want honesty.  What should I do about talking to the kids?  How do I regain that confidence that I had in the beginning?  I also have 2 brothers, one in Ohio and one is a Marine in Iraq.  Do I need to get the boys back here?  I've always been honest with them, but I felt like this was only going to be an obstacle we'd overcome. I want to know of others experiences so I can do the right things...or at least try to...I never ever want to give up the faith and I also believe God only knows what he has planned for my dad.  Please, any advice will be appreciated.Thanks for reading and God Bless,Tracey  Ttbmaat Sun, 14 Jan 2007 00:00:00 GMT First of all please know how sorry I am to hear of your Dad's illness.  My husband is stage 3B and in a clinical trial as he has not responded to treatment.  He is worn out and in a lot of pain.  It is very hard for little kids to grasp the concept of terminal illness.  Our oldest grandchild is 10 and has been told Papa has cancer but I don't think he really understands what is going on.  We have 2 granddaughters ages 5 & 8 and all they know is that Papa is sick and some days doesn't feel too good.  I believe your brothers need to be brought into the 'loop' if only for support for you and your Dad.  As far as your brother in Iraq, I cannot comment as I am not familiar with military protocol.  Your shouldn't be expecting too much of yourself right now.  Take each day as it comes and lean on God. Give it all to God and let Him help you. Take care and God Bless your Dad, you and your family. Mauriceart Sun, 14 Jan 2007 00:00:00 GMT Ttbmaat, My Father was diagnosed back in June 2006, he had 4 children, 9 great, and 6 great great. My brothers and sisters opted to tell all of Dads illness, the prepared the ones that could understand to what they would see when they saw him. My Father had Hospice come in in December 2006, the children all came in a spent time with him, also Dad had requested visits from the kids, he slept most of the time due to the meds, but I am sure he knew who was there. He passed on 01/12/2007 at home, all the children from 7 years and up were there after he passed to see him once more and to say goodbye, I personally had mixed feelings on this, but the Hospice social worker told us that death is a part of life, and no one should be sheltered from that fact. Once Dad was put in the hospital bed that was supplied by Hospice, he passed 4 days later, the Hospice nurse came in and checked him, his blood pressure was 80 over nothing, his pulse rate was 132, he passed 5 hours later. See your Dad as much as possible, tell him how much you love him, all the children in my family all wrote him letters, in which he read. I loved my Father and it was the hardest thing I have ever done in my life, I was holding his right hand when he passed, I am still pretty messed up, and probably will for a long time to come, but there are comforts, noing he is no longer in pain, and when I have a sad thought, I marry it to a good memory. I hope I have helped you in some way. I also am in Michigan. My thoughts are with you and yours.  Tom48 Fri, 19 Jan 2007 00:00:00 GMT Thank you so much for your advice.  We did decide we are going to tell the kids.  Part of our decision was made because of his last appointment.  They are stopping chemo and repeating the scans on 1-29.  All the dr said is hopefully the disease is stablized.  I walked out of that appointment just in total disbelief.  We are going to wait until we get the scans back so we can fully prepare my kids for this devistating news.  I really don't want to upset you, but could you please tell me a little bit about your dad's condition in June when he was first diagnosed and walk me through his condition.  I too love my dad soo much.  I've had such a hard time.  I do try to make the best of everything and see him as often as possible. Thank you so much for answering,Traceymy email is --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----will you please email me or respond.  As heart wrenching as it is, I feel it is better to be prepared. Ttbmaat Fri, 19 Jan 2007 00:00:00 GMT  On 1/19/2007 Ttbmaat wrote:Thank you so much for your advice.  We did decide we are going to tell the kids.  Part of our decision was made because of his last appointment.  They are stopping chemo and repeating the scans on 1-29.  All the dr said is hopefully the disease is stablized.  I walked out of that appointment just in total disbelief.  We are going to wait until we get the scans back so we can fully prepare my kids for this devistating news.  I really don't want to upset you, but could you please tell me a little bit about your dad's condition in June when he was first diagnosed and walk me through his condition.  I too love my dad soo much.  I've had such a hard time.  I do try to make the best of everything and see him as often as possible. Thank you so much for answering,Traceymy email is --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----will you please email me or respond.  As heart wrenching as it is, I feel it is better to be prepared. Hi Tracey, I used your email address and sent a personal message to you. Please let me know if you recieved it. Tom48 Sat, 20 Jan 2007 00:00:00 GMT My thoughts and prayers go out to you.  I was in your shoes just a few months ago.  My father who is 74 was diagnosed in August with NSCLC and although the tumor has barely shrunk, his pneumonia and general health seems to be improving.  The doctors last month said they suggested hospice due to the minimal change with the chemo.  It snowed this week and my dad was shoveling snow at 74!!  You need to have faith and pray as much as you can.  He has to stay positive and I suggest that he look at complimentary therapies.  For example, my dad uses an infrared hot house 4 hours a day and minerals supplements and a PH balanced diet.  I now understand that if your body (which is 80% water) is not balanced, it will be like the swimming pool with a ton of algae.  Cancer thrives in that environment.  After each Chemo, he sees a homeopathic doctor that does a few therapies and he has no nausea, fatique or loss of appetite.  He only takes water soluable supplements and a ton of them.  I suggest you look into "Eniva"  www.eniva.com.  I also suggest a book called "Beating Cancer with Nutrition" by Patrick Quillan and "I Beat Cancer" from Awareness Publishing.  You will read stories of hope and read the story of 50 people who beat cancer.  Please know that there is hope.  It will take a lot of time and commitment with all the family members and totally worth it.  Honestly, Lung Cancer is seldom curable (according to the doctors) but don't let that get him down.  Doing these additional therapies will help keep his immunity healthy and when you feel better, you have hope.  I know there were times when my father just wanted to give up because he was tired of suffering...that has changed 100% since we have made this commitment to the alternative therapies. I will keep your father in my prayers. Cbindoodaa Thu, 01 Feb 2007 00:00:00 GMT Tracey,  I am very sorry to hear about your Dad.  It's very hard to have a parent so young, so ill.  My best advice is to take it one day at a time and pray a lot.  Make sure that your Dad is also getting the proper nutrition.  Many times, oncologists forget that part as well.  My mom was diagnosed with NSCLC two weeks ago today.  She is 60 and is a nonsmoker and always has been.  We are scared to death and just want to "wake up" from this nightmare.  I am around your age and don't have any children yet.  My sisters and I are working day and night to find the best place to take our Mom. The unknown is so scary...and that's so hard too.. Where is your dad getting treatment and how is his spirit? God bless,Toni Tonimf3 Thu, 15 Feb 2007 00:00:00 GMT Toni,Thank you so much for your advice and concern.  I am also, so sorry to hear about your mom.  Yes, it is very scary and very rough.  I've seen God work miracles and hope he does for us as well.  As far as his treatments, we live in Michigan, and he goes to Dr. Danish at the Hurley/Genesys Cancer Institute.  Believe it or not, his spirits are just awesome.  He knows that if there is only a fraction of a chance to beat this, he will.  As of Feb 7, his scans are looking as if the 6 months of chemo is working.  He has been getting sick recently, though.Good luck with your mom, I truly understand your feelings, and just remember to take care of you too.Good luck,Tracey Ttbmaat Thu, 15 Feb 2007 00:00:00 GMT Hi:I am a man age 51 was diagnosed with NSCLC stage 4 (2 years ago). Since then I have run the gamut of the platinum chemo treatments have had two surgeries to remove lymph nodes and tumors. One a lobectomy of the left lung (actually more of a wedge resection) and removal of a tumor on my pancreas the size of two golf balls.  When the chemo stopped working I was lucky enough to be recommended to Rational Theraputics' in Long Beach California.  They are quite unique because they take a tissue biopsy and subject it to a range of chemo chemicals to see which ones may have the greatest chance of killing the cancer cells.  To make a long story short. now on Tarceva I am in remission as the full abdominal and chest cat scan of three weeks ago showed no evidence of cancer.  So to go from doctors telling me go home and enjoy your last few remaining months (then running a 105 temp and feeling awful) to today playing golf, riding my motorcycle and doing all I can to help other cancer patients who are looking for hope.  I encourage you to contact them.  www.rationaltherapeutics.com . I wish you great hope.  Believe in miracles and the power of prayer and also contact RT. Tell em Rick Carroll sent you. Sailman Sun, 18 Mar 2007 00:00:00 GMT Thank you so much for your story of courage and hope.  I love to hear of real miracles such as your own.  I will definately look into this for my father.  Once again, thanks for sharing. Tracey Ttbmaat Mon, 19 Mar 2007 00:00:00 GMT  On 3/18/2007 Sailman wrote:Hi:I am a man age 51 was diagnosed with NSCLC stage 4 (2 years ago). Since then I have run the gamut of the platinum chemo treatments have had two surgeries to remove lymph nodes and tumors. One a lobectomy of the left lung (actually more of a wedge resection) and removal of a tumor on my pancreas the size of two golf balls.  When the chemo stopped working I was lucky enough to be recommended to Rational Theraputics' in Long Beach California.  They are quite unique because they take a tissue biopsy and subject it to a range of chemo chemicals to see which ones may have the greatest chance of killing the cancer cells.  To make a long story short. now on Tarceva I am in remission as the full abdominal and chest cat scan of three weeks ago showed no evidence of cancer.  So to go from doctors telling me go home and enjoy your last few remaining months (then running a 105 temp and feeling awful) to today playing golf, riding my motorcycle and doing all I can to help other cancer patients who are looking for hope.  I encourage you to contact them.  www.rationaltherapeutics.com . I wish you great hope.  Believe in miracles and the power of prayer and also contact RT. Tell em Rick Carroll sent you. Hi Rick, My sister -in-law has nsclc and she is in the hospital now because she is so sick from the tarceva she did chemo and it shrunk signaficantly and they put her on tarceva a month ago 150 mg but she doesnt want to eat or drink how long did it take for you to get use to the tarceva? She was diagonsed 10-06. Her blood count is great and she also is in a clincil  trail for avastin and tarceva together. What exactly did the place in San Deigo do we also are in Calif.My brother is beside him self and doesnt know what to do anymore but we are hanging in there.God bless you so happy to hear that someone is doing well.Starlene Starlene2 Wed, 13 Jun 2007 00:00:00 GMT  On 3/18/2007 Sailman wrote:Hi:I am a man age 51 was diagnosed with NSCLC stage 4 (2 years ago). Since then I have run the gamut of the platinum chemo treatments have had two surgeries to remove lymph nodes and tumors. One a lobectomy of the left lung (actually more of a wedge resection) and removal of a tumor on my pancreas the size of two golf balls.  When the chemo stopped working I was lucky enough to be recommended to Rational Theraputics' in Long Beach California.  They are quite unique because they take a tissue biopsy and subject it to a range of chemo chemicals to see which ones may have the greatest chance of killing the cancer cells.  To make a long story short. now on Tarceva I am in remission as the full abdominal and chest cat scan of three weeks ago showed no evidence of cancer.  So to go from doctors telling me go home and enjoy your last few remaining months (then running a 105 temp and feeling awful) to today playing golf, riding my motorcycle and doing all I can to help other cancer patients who are looking for hope.  I encourage you to contact them.  www.rationaltherapeutics.com . I wish you great hope.  Believe in miracles and the power of prayer and also contact RT. Tell em Rick Carroll sent you. Hi Rick, My sister -in-law has nsclc and she is in the hospital now because she is so sick from the tarceva she did chemo and it shrunk signaficantly and they put her on tarceva a month ago 150 mg but she doesnt want to eat or drink how long did it take for you to get use to the tarceva? She was diagonsed 10-06. Her blood count is great and she also is in a clincil  trail for avastin and tarceva together. What exactly did the place in San Deigo do we also are in Calif.My brother is beside him self and doesnt know what to do anymore but we are hanging in there.God bless you so happy to hear that someone is doing well.Starlene Starlene2 Wed, 13 Jun 2007 00:00:00 GMT  On 3/18/2007 Sailman wrote:Hi:I am a man age 51 was diagnosed with NSCLC stage 4 (2 years ago). Since then I have run the gamut of the platinum chemo treatments have had two surgeries to remove lymph nodes and tumors. One a lobectomy of the left lung (actually more of a wedge resection) and removal of a tumor on my pancreas the size of two golf balls.  When the chemo stopped working I was lucky enough to be recommended to Rational Theraputics' in Long Beach California.  They are quite unique because they take a tissue biopsy and subject it to a range of chemo chemicals to see which ones may have the greatest chance of killing the cancer cells.  To make a long story short. now on Tarceva I am in remission as the full abdominal and chest cat scan of three weeks ago showed no evidence of cancer.  So to go from doctors telling me go home and enjoy your last few remaining months (then running a 105 temp and feeling awful) to today playing golf, riding my motorcycle and doing all I can to help other cancer patients who are looking for hope.  I encourage you to contact them.  www.rationaltherapeutics.com . I wish you great hope.  Believe in miracles and the power of prayer and also contact RT. Tell em Rick Carroll sent you. Dear Sailman,My dad was just diagnosed with NSCLC stage 4 and I would so appreciate speaking with you about what works and what doesn't.  He is super healthy otherwise.  67, active, not over weight, non-smoker, positive outlook. Please let me know if you are willing to talk. Kindest Regards,Jennifer Jennifer15 Sat, 09 Feb 2008 00:00:00 GMT