dawnT Posted March 27, 2005 Share Posted March 27, 2005 Hi, my brother was diagnosed with nsclc in January and we have had a very bumpy road since then. After having the usualy workup his oncologist basically told him there was really nothing they could do but did suggest they go to Mayo clinic for a second opinion. He went and underwent all the same test again as the quality was poor of the prior tests. They did feel that it was worth trying chem0. (The only place they found mets was in one anterior rib and he did have primary lesions in both lungs). He was home only about 5 days and had not even been back to see the oncologist about starting chemo when he went into congestive heart failure and ended up on the ventilator for 6 days. (the doctors thought he had pneumonia and were treating him aggressively for that instead of for congestive heart failure. I am a nurse practitioner and feel like everyone including my brother turns to me in times of medical crisis. Unfotunately it took some ranting and raving before the docs treated him for the right condition and finally got him off the ventilator. He is now home again and has been back to see the oncologist who told hime that were going to start with Navelbine on tuesday. This is after the oncologists at Mayos recommended a usual 4 drug regimen. I feel really at a loss here...Even though I am a family practice NP, chemo and lung cancer is way out of my league. All I usually have to do is make referrals for these patients. Now I have one who I adore and I need to learn as much as I possible can. Any help you can give me would be great. Thank you so much Dawn Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted March 27, 2005 Share Posted March 27, 2005 Hi Dawn. First of all welcome to this group. It is good one. It is a whole 'nother world when a loved one becomes ill, isn't it? Listen, I don't get it. The onc. sends your brother to one of top cancer treatment centers in the country for a second opinion; they give their advice, and your onc. does what he wants to do anyway??? Time for a 3rd opinion or a dismissal of this onc....(?). This is the person who is supposed to save your brother's life? This is my 31/2 cents. Cindi o'h ps we are aware of the workings of Dr. Joan Schiller at the UofW Madison, who is supposed to be a top lung doc. Anyway. There is another not too far away. Quote Link to comment Share on other sites More sharing options...
ginnyde Posted March 27, 2005 Share Posted March 27, 2005 Welcome Dawn, Sorry you have to be here but since you are on this journey, LCSC is an amazing place for info and support. I agree with Cindi, I would check other oncs in your area. While this is not an easy disease, there are many drs. who will take an agressive approach if that is the wish of the patient. And, while not guaranteed, we have quite a few long time survivors here. Let us know more about your brother, type of lc, stage etc. Keep us posted. Quote Link to comment Share on other sites More sharing options...
bbays Posted March 27, 2005 Share Posted March 27, 2005 I too agree with Cindi. Find a new Onc. Barb Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted March 27, 2005 Share Posted March 27, 2005 Hi Dawn and welcome,You will find a lot of knowing and caring people here.I too think mabe you should seek another onc's opinion. This is a very difficult disease to fight as everyone seems to have different results from alot of the same things.However advances are being made every day and a lot of folks here are surviving and doing ok. Wishing you and your brother the best of luck with this rollycoaster ride and let us know how we can support you. Quote Link to comment Share on other sites More sharing options...
Patkid Posted March 27, 2005 Share Posted March 27, 2005 We are praying that you and family find the right course of treatment for your brother. We are still learning, too. All the best, Pat and Brian Quote Link to comment Share on other sites More sharing options...
dawnT Posted March 27, 2005 Author Share Posted March 27, 2005 THanks to all for your kind words. I agree that a new oncologist is needed here, however my concern at this point is the fact that he is nowat least two months past diagnosis and NO treatment has begun. He is stage IV mucinoid adenocarcinoma. The unfortunate thing is that my brother and his family are 60 miles away from me and I am not real familiar with the docs in that area anymore. I feel comfortable with the healthcare system where I practice but unfortunately the good ole boy attitude still prevails in the Chicago suburbs and when a "Female who happens to be an NP" questions them they become very defensive. So I have learned to filter the questions through my sister in law who they do not feel threatened. by. I am very frustrated because of the fact that my brother and his family are still of the belief that "doctor knows best" I am working on it but it is a struggle. I need some ammunition about chemo in order to convince them. Guess I need to do more reading and research. Dawn Quote Link to comment Share on other sites More sharing options...
Debi Posted March 27, 2005 Share Posted March 27, 2005 Dawn, I agree with all the above also. One thing I have found after being sick for the first time really in my life, is that the "Doctors know best" approach is a dangerous one. While I certainly do not want to disrespect the medical profession and many of their doctors, there are doctors out there that are ignorant of this disease and what we need as patients. IF something doesn't "feel" right, it usually isn't, no matter what area of your life it is in. If you surf around this site, you will find many topics that will help you with your research for your brother. In addition, I would suggest that you click on "Ask the Experts" up above, tell them what is going on with your brother, and ask THEM for their opinion on the road of treatment your brother's Oncologist has suggested. Good luck and welcome to the board, although of course, we wish you didn't have to be here... Quote Link to comment Share on other sites More sharing options...
Don M Posted March 27, 2005 Share Posted March 27, 2005 Hi Dawn: I think the Docs at Mayo could write the Rx and the local clinic could administer it. I am not an expert either, but I would imagine that a more aggressive approach would be administration of some type of chemo cocktail. Quote Link to comment Share on other sites More sharing options...
Justakid Posted March 27, 2005 Share Posted March 27, 2005 Hi Dawn- I still remember my Nurses face when she made that call for me to the surgeon once I was dx at my PCP office. Poor lady! Keep searching till you get the answer you need! Oh and welcome, sorry you have to be here! Quote Link to comment Share on other sites More sharing options...
ellakc2 Posted March 28, 2005 Share Posted March 28, 2005 Hi Daw, Sorry you have to be here. It's very hard when family is defensive. I've been there. It's very frustrating for you, who knows they need better care. The Dr. is always correct sydrome (my sisters and I call it that) because it's my mom's trend of thought. Don't get me wrong. I'm not bashing Dr.'s. There are so many good and wonderful Dr.'s, but there's the handful that need to be stood up to and questions without being made to feel stupid. Keep going through your sister-in-law if it's working. It's also sounds like the miles are a problem. You can only do what they accept, until they're ready. Try not to beat yourself up. You do they best you know how. Good luck and take care! Mare Quote Link to comment Share on other sites More sharing options...
Maryanne Posted March 28, 2005 Share Posted March 28, 2005 Hi Dawn, I am so sorry to hear about the situation with your brother. He certainly has been thourgh so much already. There are many wondeful people on here who can help you with your questions. Please know that Iam thinking of you and hoping everything will come out to his advantage. He must find a doctor who can give him the treatment he needs. That is the most important thing. Maybe you can get his wife to post here. That way we can give her support and maybe help her with decisions. It is really crucial, which Iam sure you know to start treatment. The right treatment!! This is his life we are talking about. Please keep us posted. We are always her for you. Maryanne Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted March 28, 2005 Share Posted March 28, 2005 Please get another opinion. Don't give up. You need to have more than one person deciding what you should do. Joanie Quote Link to comment Share on other sites More sharing options...
Wendy Posted March 28, 2005 Share Posted March 28, 2005 First of all Welcome! Your brother is lucky to have a caring sister to lead him through his journey. You are surely in a tough position with your medical background. It always seems that if you are in "the field" you must know the answer to all problems and treatments. It seems like attorneys get treated this way too, no matter their specialty. My advise here is BREATH DEEP. You will be able to help out even when you feel like you are frustrated too. Yikes, your brother has sure been on a rough road since he found out! It sure adds fuel to the fire!! Please know that the statistics you read are outdated, there is hope and many survivors out there living satisfying lives - No matter the stage they are diagnosed at. Best wishes for the future, You have a lot of friends here pulling for successful treatment results. Wendy Quote Link to comment Share on other sites More sharing options...
dawnT Posted March 28, 2005 Author Share Posted March 28, 2005 Thank you all for the encouragment. I feel better just having found this group. Others to talk to who seem to understand. I found myself getting very down the last few weeks, trying to be all to everyone. Have to do what I tell my patients, I need to care for myself or I won't be able to be there for him when he needs me. I am focusing on that and on all of your positive thoughts. We will see what this week brings with his actual first supposed treatment by the oncologist. Will keep you posted. thank you again Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted March 28, 2005 Share Posted March 28, 2005 Dawn, May I ask what 4 chemo drugs Mayo suggested for him? Again, best of luck in the long distance advocacy role. cindi o'h Quote Link to comment Share on other sites More sharing options...
Donna G Posted March 28, 2005 Share Posted March 28, 2005 Hi Dawn and welcome. For the 3rd opinion, why not click above on Ask the Experts, give them the diagnosis, stage, what each of the doctors recommended and see what they think. Keep us posted. Donna G Quote Link to comment Share on other sites More sharing options...
Don Wood Posted April 4, 2005 Share Posted April 4, 2005 Dawn, welcome to the site. Sorry your brother had to go through so much already. There is plenty of info and support here, so let us know what specifically you need as you go through this with your brother. Don Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted April 4, 2005 Share Posted April 4, 2005 Welcome, sorry to hear that. Prayers for the best. Quote Link to comment Share on other sites More sharing options...
dawnT Posted April 4, 2005 Author Share Posted April 4, 2005 Thanks so much for your prayers. Your story sounds somewhat like my brothers. He is also a stage IV, with mets to only one rib, his MRI of brain and Cts were otherwise clear. He just started his first round of chemo (navelbine) on tuesday and is somewhat fatigued but otherwise doing okay. I see that you too had this at one time. Any hints on what to expect for him with this chemo agent would be great. You sound like you are doing well, hope things remain that way for you. Dawn Quote Link to comment Share on other sites More sharing options...
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