Angie Daughter of Bill Posted February 6, 2004 Share Posted February 6, 2004 Today was my Dad's first oncology appointment. The news was not good. He has stage IV squamous cell with mets to the spine. (two spots showed up on the PET scan) The dr. said we could do chemo(taxol/carbo) but it would be done to prolong life only. No radiation will be done. He is having a CT next week.(checking for brain mets) The dr. just didn't offer much hope. I am now back to crying and having terrible anxiety. This is the hardest thing that I have ever had to go through. I love my Dad with all my heart. My Dad is feeling fine now except for some swelling in his knees and a slight cough. How can they tell me that in 6-9 months he will be gone????? This is just almost more than I handle. Anytime I have a problem, I go to my Dad. He talks me through it, kisses my cheek and pats my back. Problem solved. I am not ready to give up my Dad. I want my Dad to be one of the "other statistics".......the ones who are outliving the statistics. Those of you that have done a lot of research, help me out. these are the suggestions of the dr. What to you think no radiation chemo carbo/taxol Zometa try to strengthen bone hopefully avoiding fractures Quote Link to comment Share on other sites More sharing options...
karenl Posted February 6, 2004 Share Posted February 6, 2004 Angie So sorry to hear what you are going through, but never give up hope!! There are so many people living well with this disease, and as you say, why can't you be one of the "other" statistics??? There are lots of things your dad can do to help his body fight this disease. If you go back through previous posts, you will find information on nutrition and supplements which is invaluable - there is a school of thought (Max Gerson) that even advanced cancers can be cured through the right nutrition. (By the way, my mum is having quite aggressive chemo, and experiencing very little in the way of side effects) If you need inspiration, put the name Ian Gawler into your search engine. This man was given 2 weeks (!!!) to live by doctors as he had very advanced bone cancer. That was 25 years ago, and he has dedicated his life to helping others overcome this illness through mainly diet and meditation. I know what you are going through with your dad, as my mum is also symptome free, which makes it hard to believe she has cancer at all, but we are doing everything we can, as a family, to make sure that she is one of the survival statistics - this disease can be beaten!! Wishing you all the best Karen Quote Link to comment Share on other sites More sharing options...
paddy Posted February 6, 2004 Share Posted February 6, 2004 Dear Angie, I am so sorry to hear such bad news. My heart goes out to you. Don't give up on though, we take little notice of statistics on this board. When my husband was diagnosed, I asked his pulmonary specialist, "So what do we do now", (meaning, what steps do we take to fight this thing,) and his answer was, "Take him home and make him comfortable!" Hearing this, I thought my husband would be gone in the next week or two! After going through the chemo however, he is feeling a lot better and getting a lot of enjoyment out of life . We are choosing to make the most of living for NOW and not thinking, (if we can help it,) of what the future may bring. My girls, who can't be here with their Dad, phone him often and always remind him that they love him and what he means to them. I am sure you are doing the same for your Dad. I will be praying for you and your Dad and family, Paddy Quote Link to comment Share on other sites More sharing options...
Andrea Posted February 6, 2004 Share Posted February 6, 2004 Angie, My advice is go for a second opinion! Cancer is a beast and sometimes there is nothing we can do but pray. However, never give up hope and I strongly suggest going to see another dr for input. It cannot hurt. Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted February 6, 2004 Share Posted February 6, 2004 If your dad is willing, I'd sure try for a second opinion! I wonder why radiation isn't an option for those mets to the spine... There is always an exception to the rule, and you never know until you try. Your dad can always stop treatment if he feels it isn't worth it. Quote Link to comment Share on other sites More sharing options...
pritchie Posted February 6, 2004 Share Posted February 6, 2004 Angie, I'm sorry the appt didn't go well. I agree get a second opinion. Keep reading this site and you will see that stats can be wrong. My thoughts and prayers are with you. Pamela Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted February 6, 2004 Share Posted February 6, 2004 Angie, What's been said before ... but I'll say it louder .... if your Dad is willing .... GET A SECOND OPINION. Take a look at the dx's in the various sigs on this board. There are a LOT of folks here who started out with Stage IV cancer and are still around and kicking a LOT longer than the doctors gave them. And yes, things could go the other way. That's something we all deal with with this disease. But there's something I know from my own experience. Still today, so many years after he passed away, I still have my Dad's wisdom, his strength, and his love with me every day. I'll end up in some screwy situation of my own making and hear his voice showing me the way out. Hang in there Angie, this thing ain't over yet. Dean Quote Link to comment Share on other sites More sharing options...
Andrea B. Posted February 6, 2004 Share Posted February 6, 2004 Dear Angie, So sorry you have to experience the awfulness of this disease. I struggle with it everyday, but remember oh so clearly when we first got the news about my mom and feeling so lost - she too is my best friend. First things first, go for a second opinion! This is vital. Sure the second doctor may tell you the same thing, but your mind will be better rested. Second, never ever give up hope. My mom was in the hospital at the end of December, doctor walked in and told her she would be dying within the week...but she proved them wrong and is home and rebuilding some strength. Don't let any doctor decide your dad's fate...this is up to your dad and his wishes. Third, check into why they won't do radiation on the spine mets. My mom's oncologist told her the same thing...that she would only get chemo for the lung and lymph node tumors. But she met with her radiation oncologist and he disagreed, he said nothing but good could come from getting radiation. Fourth, anytime you are feeling anxiety or stressed out come here for support. It has saved me immensely. Blessings to you. Quote Link to comment Share on other sites More sharing options...
Fay A. Posted February 6, 2004 Share Posted February 6, 2004 Angie, I'm sorry for all you and your family is going through right now. I say find another Oncologist (preferably one at a major comprehensive cancer center where someone is actually specializing in Lung Cancer). But I'm pretty aggressive...I'm also still alive and happy to be here. Wishing you all the very best... Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted February 6, 2004 Share Posted February 6, 2004 Angie, I agree with Fay, look for a radiation oncologist who is aggressive enough to want to fight with you, and thinks he can help with irradiation of the spinal mets. There are aggressive doctors who don't know the word quit, just as there are survivors who don't know the word either. If that's what your Dad wants to do, then go for it. Shake the bushes. If you look hard enough, you will find one. But, like Fay, I am also very aggressive about treatment. IT aint over til it's over..... AND IT AINT OVER. Prayers for you and your dad, MaryAnn Quote Link to comment Share on other sites More sharing options...
Don Wood Posted February 6, 2004 Share Posted February 6, 2004 Angie, my wife, Lucie, has NSCLC, with bone mets. She had chemo treatment (carboplatin and taxotere), which helped a lot. She also had radiation on 4 mets, the main one on the upper spine. Their criteria for radiation were: (1) Is it causing a lot of pain? and (2) Is the met threatening the bone integrity. I would think your dad's spine met could be treated with radiation, and I agree with others that a rad onc should be consulted. Lucie has been on Zometa since June and we believe it has helped a lot to keep new bone mets from forming. Good luck. Hang in there, and keep us posted with your thoughts, feelings and questions. Don Quote Link to comment Share on other sites More sharing options...
sharyn Posted February 6, 2004 Share Posted February 6, 2004 I agree you must go for a second opinon, or at least questions why they cannot do radiation. My Dad was diagnosed 3 years ago with Stage IV and mets to the hip... he had chemo and then radiation to the hip - so far so good.... Please try to think positive thoughts... Love, Sharon PS Daddy is also on Aredia for his bones - he has been on that for just about a year Quote Link to comment Share on other sites More sharing options...
Guest cheri Posted February 7, 2004 Share Posted February 7, 2004 Angie, As I read your post, I began to cry because it sounds exactly like the cancer that my Dad was diagnosed with in December. He has Stage 4 LC with mets to the spine. He has 3 tumors on his spine that was causing a tremendous amount of pain! His MD was actually sending him to physical therapy for a "bad back" and the whole time he had LC! Anyway, I would definitely get a second opinion. Talk to his oncologist about radiation...my dad had 13 radiation treatments and it took his back pain away COMPLETELY. We are now going to talk about surgically removing the tumors on the spine b/c they are now a lot smaller due to radiation. We also got my dad into a clincial trial at UAB (Birmingham) and feel that they are a lot more aggressive than our medical team at home. He is receiving Carbo/Taxol and will eventually receive a new test drug, ABX-EGF. We felt that having an opportunity to try a new drug that has showed positive results in others was better than going the normal route. I will be HAPPY to share anything I can with you. It's so hard to go on this journey alone. Email me anytime. Best of luck and many prayers to you and your father. Cheri Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted February 7, 2004 Author Share Posted February 7, 2004 I appreciate all of your support and advice. I will be talking to my Dad about getting a second opinion. I'm not sure why radiation is not an option..........I was just so crushed the day of his appointment that I couldn't think of anything. I am little clearer in the head, so there will definately be questions. My Dad will be getting a CT scan on Wednesday to check for brain mets. He will then see his oncologist on Thursday morning. We will see what he says on Thursday. Thanks again........you are all an inspiration!! God bless! Quote Link to comment Share on other sites More sharing options...
Angie Daughter of Bill Posted February 7, 2004 Author Share Posted February 7, 2004 I appreciate all of your support and advice. I will be talking to my Dad about getting a second opinion. I'm not sure why radiation is not an option..........I was just so crushed the day of his appointment that I couldn't think of anything. I am little clearer in the head, so there will definately be questions. My Dad will be getting a CT scan on Wednesday to check for brain mets. He will then see his oncologist on Thursday morning. We will see what he says on Thursday. Thanks again........you are all an inspiration!! God bless! Quote Link to comment Share on other sites More sharing options...
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