I have posted a few times, but get confused about who has NSCLC experience. I saw that you do. I hope you do not mind me singling you out. My dad is a NSCLC patient Stage III (Dr's can't decide A or B). He is currently in his second round of treatment. He is getting Chemo and Radiation concurrently. He had Chemo previously and had little reaction. He then had some heart problems and needed a bypass, but the Dr.s decided on a Stent instead. But now no onc. surgeon will touch him for 4 months. He is not completly considered operable. First yes, then no... now working toward it. In this round of chemo/radiation he is having terrible reactions.
What do you know about how NSCLC responds to treatment? What do you know about life expectency? I live 400 miles from my dad and try to get home as often as I can... but I have 2 little ones. My dad's attitude is pretty difficult. He is probably understandebly frustrated... but he is really angry alot.

Thanks Rockie and anyone else able to provide info.

Hep

Hi Hep. My husband was diag with NSCLC last May.He had a tumor in his right lobe the size of a tennis ball. The first surgeon we went to wasn't sure if he could operate and wouldn't say what stage he was though he thought he was a 3a or 3b. We then went to an onc who referred us to a surgeon at Moffitt who only operates on people with LC. He saw my husband and said he was sure that he could operate which he did and when he started the operation all was going well untill he saw that Gary's bronci tube had to be resectioned (we were told later by our lung doc that most doctors will not do this that is why the first doc wasn't so sure about doing the surgery) But it was done and no lymph nodes were involved. Gary was restaged after the surgery to 1b and he also did the carboplatian and taxol just incase.He finished that in Jan and his first scans have been done and he has no signs of cancer. He will have to have scans every three months for one ar two years and then every six months.I was also told it is very hard to stage cancer until surgery has been done or if a PET scan has picked up any other cancer in the lymph nodes or other parts of the body prior to surgery. Has your dad had a PET scan?
Lorrie

Dear Hep...I wish I could be of more help. Our xp was that initially, Bud was diagnosed with 3A. All looked favorably for surgery...(ie: removal of left lung)...then the PET scan at St Louis University. It lit up the pleura and the mediastinal and onother lymph node. That shot him straight into 3B -- and oh my Lord....inoperable. This is when our saga started. He began chemo only (since radiotherapy was out of the question to do the pleural involvement and too massive of an area to cover by radiation). This led him to his currently 5th line of defense...the original Gemzar/Carboplatin defense but this time adding Avastin...which blocks the blood vesels to the tumor..basically starving it. AMEN. I think there is some progress here. We went on Tue for his Onc appt and then treatment. Doc said good job. He no longer coughs up blood...which he had been doing for months now...and his left lung no longer hurts...which again had been happening for months. In April the same onc said 3-5 months if this does not work. When I spoke with him on Tue ...he said if treatment is responsive...maybe...hopefully...6-8 months. I am praying for my miracle. I have never asked God for anything, but now I am asking form him to be cured, and live. NSCLC does not respond well to chemo...and there are differences b/w the patients who were smokers and non-smokers. Some drugs only work well with the non-smokers. But, we tried all we could despite it all.

Thank you for singling me out. I hope to be able to speak out about this terrible illeness and discourage current/future smokers. Hep, keep us posted on what is going on. As always, I try to come through here as often as I can to help in any way I can. I am honest about what I see and know.. I hope that is not hurtful as that is not my intention.

Take care....prayers and healing and peace from Indiana


Jan

Thank you Lorriem and Rockie for responding. I consider myself pretty computer literate, but following who has what had me confused and I needed to finally just single out the ones with the same dx.

The reactions are just terrible. Makes you wonder if the treatment is worth it all. I only hope there is a sign that something changed with treatment once it is all over.

I do believe he did have pet scans and so far it is only in the lungs. I remember the word effusion though so I think that is why they can't make up their mind about a and b.

I don't know if you both are MOMS but regardless have a great weekend and wonderful Mother's day!!! Thank you again!

thank you Hep... I am a Mom and twice over. The holiday is tainted by what else is going on. My hubby is my kids' stepfather...and sometimes that relationship is diluted due to the lack of blood-bond. I am blessed for having all that I have. God is my strength and my rock. Right now, that is the best I can hope for.

You take care and God bless....

Jan

Dear Jan, thank you again for your wonderful message of encouragement to me and my mother. I read your posting to my mother, and it made her very happy. I am new to the message board and unfamiliar with your husband's situation. I read through some of your postings, and just want you to know that I will be praying for Bud. You are a very amazing woman, and have such strength.. I can sense God's calming presence in your messages, and am sure that God is 'holding you in the palm of His hand.' Take good care. Kris

Dear Kris....
We are all in the palm of HIS hand. Thank you for your supportive words. Right now I feel like throwing in the towel. What just a few days, maybe a week or two ago seemed hopeful, now I wonder. Although Bud's coughing is still not producing blood, the pain in his left lung has increased 200%. Oh my, in my heart of hearts, I know time is running short. Not a lack of faith, but a very practical side of me that comes through in times like this. I have a mental note that says.....do this, do that, make sure this is filled out, that that is done, that this phone call is made, that that person has been alerted.

So, you know what I am doing tonight despite the late hour? Packing to take my Bud camping this weekend.

I have to add another note. For the last several weeks/months I have been having tremendous problems with my colon. I was dx in 1989 with a spastic colon. We that have this condition, learn how to deal with it. Well, for the last few weeks, I have been xp'g several issues relating to this. Doctors have changed my medicines twice with no relief. I need to schedule a colonoscopy in the next week or two. I sooooooooooo worry that this is a cancerous condition. Would that not be a hoot?? Here, after all of this, I come down with the big C too. Part of me says, if so, I will not undergo treatment. I have seen what my beautiful husband has gone through. My youngest child is 19 almost 20..grown and starting a life of his own. Sadly, I just wonder if it would not be better I went to heaven along with Bud so that we can stroll Heaven's streets together. I'll keep you all posted in this latest.

Bud cut grass today and helped me load firewood to take to the camp. He is doubled up in pain but I know the meds I gave him will help.

I know so many here are dealing with the same death/life issues. Sometimes though, despite our best human efforts, things seem so hopeless, so utterly fated. I pray for each of you/us. This dreadful disease needs to be eradicated. In the meantime, let's see what we can do to raise money for the ACS and enhance awareness of LC.

You are all so important to me and keep you all close to my heart.....

TTFN,
Jan

Oh Jan,
So sorry to hear of Buds increase in pain...how heartbreaking and the same thing is happening to Stan. In Stan's case though it is lower back and liver. It has a way of kicking in when the sun goes down so makes for a LONG night! I understand the practical side of you as I am the same way so can completely relate! Amazing how much these men can push themselves...your Bud sounds so much like Stan! Stan went into the office everyday except Monday (doing chemo) At first I thought it might be too much for him, but he needs to get out and it distracts him and he enjoys being at his business which he worked so hard to get up and running. I do the books there, but it does not keep me busy fulltime, but he wants me to come with him everyday and I don't mind! Anything to make his day and make him smile. Stan tells jokes and we laugh around even though we know the gloomy diagnosis. Is your Bud the same, laughs and makes you smile?
I just hope stress is bothering you and not cancer...I will add an extra prayer for you...that is the LAST thing you need! Does Bud know there is a problem or are you keeping it a secret? Please keep us posted and know you are in my thoughts and prayers.
I was up most of the night between Stan's pain and my sister-in-law called...her dad died of sclerdoma(sp)...what a terrible disease right up there with cancer! He fought so hard and they live in Germany so my sister-in-law is trying to arrange to fly over. I think the phone call reminded me what is ahead of me...don't get me wrong...I am not being negative, but there is no cure for what Stan has, they cannot help the brain mets that are all over...he is just buying some time and we all know that and we live one day at a time...enjoying our time we have right now is the best we can do...what you and Bud are doing too and so many others out there too.
I am sorry Jan, but I am rather emotional today(should not be...went to the gym in the am) and maybe should have waited to reply to your post, but even though we have never met I feel very close to so many of you on the posting board...thanks my dear friends...
Wishing all a very peaceful and calm weekend,
Kim

Jan and Kim, I am so very sorry to hear that Bud and Stan are still having so much pain, my heart goes out to both of them. I am glad that they are not letting the pain stop them from living though at times it must be quite difficult to do so. They both sound like such strong brave men.

Sometimes it seems to me like you both feel guilt because you see what is happening and know in your hearts that time is running out.Hey because you see and accept these things does not mean you have given up hope it is just hope is shifting.We all first hoped for a cure even when the doctors tell us it is not possible then as the time passes and we see our loved ones fighting so hard for each day we begin to understand that a cure may not be possible and our hope starts to shift too, I hope we have more time together, I hope our loved one does not suffer and I hope for a quiet peaceful death for my loved one. Hope does not leave us and I pray you both do not feel any guilt for allowing your hopes to change.

I think Stan and Bud may tell jokes and make you smile despite the gloomy diagnosis as right now they are still alive and want to live as normal a life as they can in what time they have left to do so. People that just give up and wait to die are wasting the days they have left not living them. I have met so many people just weeks or even days away from death that have been such inspirations to me and have had some coworkers ask, how can they still be so nice and happy and tell jokes etc... I think the answer is because THEY ARE STILL ALIVE! They are still the person they have been since birth.

Jan wrote "Sometimes though, despite our best human efforts, things seem so hopeless, so utterly fated." So true because we are only human and as much as we do not like it death is a part of human life and we can not change that no matter how hard we try. We should not beat ourselves up for this or suffer guilt from it as fate is not in our hands. Instead we can have faith that there is life after we leave our human bodies and world behind.

Jan I am sorry to hear about your health issues and hope they all turn out to be stress realted as God knows you have been under alot of stress for a long period now and stress does effect us in bad ways. You are in my prayers with everyone else. I hope you and Bud have a nice camping trip as you both deserve some good times.

Kim I hope that you and Stan have an enjoyable weekend too and I do not think you are being negative at all . I will tell you despite all the good luck my mom has had with her treatments I know they will buy her nothing but time and thankfully for us a good quality time. It would take a miracle to be cured at this late stage especially with liver mets. If my mom wants to believe she can still be cured that is fine as it allows her to go on with life in a normal fashion. I am thankful for what time we have bought, for the fact that her pain up to now has been very limited,for the fact that she is able to live a pretty normal life. I do not view my thoughts about her not being cured as negative as I am not sure I view end of life as negative. Yes it is negative for those of us left behind as we will hurt and feel a big void as our lives take a huge turn in another direction but it is a part of life as is birth so how can that be negative?

I don't want my mom to die and it will be a huge loss for me and I will miss her more then I can ever say but I know in my heart it is all just a part of life. When I have seen the looks on some peoples faces moments before they die I can not belive it is a negative thing to them. I think what lies beyond this life is something great and it is that faith that will see me through all of the sadness, heartache, loss and of death of a loved one. It won't be easy but it is what is. I hope I have not rambled too long and hope you can find the inspiration I am trying to send to you both so that you can enjoy your loved ones lives instead of letting the future creep in and cause you to feel guilt as you have Nothing to feel guilty about. You have done all you can and don't let anyone or anything make you feel any different. You both are amazing women. I hope for a good weekend for all. JanMarie

Dear friends, I hope you don't mind, but I am forwarding a daily devotional from Dr. Adrian Rogers that I thought would be of some comfort to you. Dr. Rogers passed away from cancer last fall and is with the Lord, and this was very sad for me, but it is such an inspiration that his words of faith live on. Also here is a link to his archives of sermons:

http://www.oneplace.com/ministries/Love_Worth_Finding/archives.asp?bcd=2/27/2006

This is what I was listening to when he helped me cope with my mom's bad news about her inoperable cancer, and to put things in God's hands -- "How to Know the Will of God." It was the same week that I found this message board, and I feel that was the start of God's answers to my prayer for help and strength. Take care, Kris

BIBLE MEDITATION: “For the mountains shall depart, and the hills be removed; but My kindness shall not depart from thee, neither shall the covenant of My peace be removed, saith the LORD that hath mercy on thee.” Isaiah 54:10

DEVOTIONAL THOUGHT: Sometimes the grandest revelations come through confrontation. Why did God bring the Israelites to the Red Sea? That they might have a confrontation with Him and discover His greatness and deliverance. Many times the things we think are tragedies and problems are God’s way of drawing us to Himself. God shuts this door. God shuts that door. It seems that there is no way out. But, we must cling to the fact that God makes Himself known to us in the storm and He plants His footsteps in the sea.