dawnT

Thank you all so much for the wonderful support you have given me since I joined this group. You are all so special and wonderful. My beloved brother passed away early this morning with his wife and daughter by his side. I did not make it back to be with him as I said earlier today was my daughter's college graduation. My heart aches with the loss of my brother but I know he was with us during the graduation ceremony watching his niece walk across the stage. He loved her so....The coming weeks will again be difficult as I have now lost 2 brothers and both parents in the last 2 1/2 years. But again I want to thank you for your support and I will continue to turn here for warm wishes and good thoughts. Thank you Dawn

Though I haven't posted often I feel like I have run the whole race here. I have gone from the newcomer forum to the nsclc forum and now to the grief forum. I am not sure if I should even be here yet but I definetely know I am grieving. As I sit and write my beloved older brother is in a hospital 80 miles away slipping away. I posted earlier in the week about his recent journey and obviously it has continued. I was called up there on Tuesday because his wife and children wanted me present when they had to make the decision to remove the respirator he had needed since entering the hospital 6 days before. We made the right decision and the ventilator was removed. Amazingly things turned around for him and for the next day he was able to breath on his own and actually communicate and spend time with us. Last night things again started looking like the end. I had returned home to my family on Friday and my SIL new that today was my son's birthday and that tomorrow is my daughter's college graduation so waited until this afternoon to call me. I know that right now I have to be here for my kids and that that is what my brother would want but I am feeling very alone and guilty for no being there. I was able to spend time with him before I came home and to say good bye , but this makes me crazy. Sorry this is so long but this has been a great place to vent. Will keep you all posted. Dawn

You have come to the right spot for information and support. My brother too was dx with nsclc recently. It is difficult to see someone you love going through such a hard time. There are many survivors here who will tell you there stories and give advice. Hang in there and my prayers are with you. Dawn

Denise keep on questioning. If you don't you will never get answers that you need. Good luck to you and your mother. Dawn

Thanks so much to all for all your prayers and support. I do realize that his heart was damaged before he was diagnosed, but honestly believe that the chemo has done some damage because even compare to last time he had congestive heart failure his heart is much weaker. They doctors forget that I am a nurse practitioner and can read the numbers on the ventilators and understand what they mean. Then they try to sell you another story. oh well it is very frustrating. As of today they are thinking of TRYING to wean him starting tomorrow. So hard to see him this way and to watch his wife sit there hour after hour. I am not a very good sitter or very patient i am afraid. Thanks again for your thoughts and prayers. Dawn

Things have been moving kind of fast with my brother. I posted a couple of weeks ago for the first time and told how my brother was diagnosed with nscls stage IV inoperable and had gone to Mayo's for a second opinion on treatment. After going to Mayo.s he ended up in the hospital with congestive heart failure so his chemo was delayed. He started his chemo 4 weeks ago and had 3 rounds which he did fairly well with until this past monday. Monday he again developed severe shortness of breath and ended up back in the hospital with congestive heart failure. He had 2 major heart attacks 10years ago followed by quadruple bypass but was still left with very poor pumping action of his heart. The doctors are thinking that the stress of the chemo may be too much for his damaged heart. He is still intubated and on a ventilator at this point. and we really don't know what is going to happen. I guess I am just looking for a little support and if anyone else has heard of or been in a similar situation. I know that everyone reacts differently to chemo but any thoughts would help. thanks dawn

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

Hi CHF is definetely a serious thing and it can be caused by numerous things, not just heart disease though this is the most obvious cause. THink of this as a warning sign to you that you must pay attention to and once again have a thorough workup to find the cause. It may be due to an underlying heart condition that you didn't know you had, could be a side effect of medication that you are on or could be related to hypertension or kidney disease also. This is something that you need the answer to in order to find the right treatment. It is certainly by ne means the "final ticket" I have care for many many people with CHF who have led long and wonderful lifes. Think of this as yet another "bump" in the road Dawn

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

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

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