First treatment questions

[kathytoma]

Snappy, I think we have connected because our husbands are Joes.

We are both 59 soon to be 60 and have been married 13 years, we grew up together and reconnected a few time over our life's but we both had so much baggage that God waited until the time was right to put us together to grow old together. So much for my fairy tale marriage.

Joe was dx in July 2006, stage 3b and lymph nodes. We did 6 chemo and 37 radiation all at the same time, they put us through aggressive treatment to try to make him a surgical candidate, and yes they did. So surgery, lobectomy in Nov. 2006 and we did ok with that and we were ned until August 2007 and he had a pleural effusion and the cancer was bad.

It was not our onc. that said we needed to do surgery asap, it was our radiation Dr. and surgeon, they said we cannot wait. So we did it after 3 other opinions confirmed what they were telling us. Our Onc. Dr. wanted us to wait until Jan. and all 3 surgeons said no, it makes surgery to dangerous to wait because of the damage radiation does to the chest cavity. So until we went to our onc. Dr. in January he did not even know we had had surgery, so he was very surprised. Had we done what our onc. Dr. had said, surgery would not have been done and Joe's chances of survival were better with surgery, so we did the surgery.

After our recurrence we had 2 more powerful combination chemo-cisp/taxol/avastin and Joe was down hill after the first one, when the shingles broke out in his chest cavity, the second chemo put him in the hospital, I almost lost him then.

I tell you all of this for a reason, I am very pro-active and have many opinions on my husbands care. Like your Joe, my Joe had never taken one pill and was healthy except yes, he smoked.

We had a full and active life and we both have never been sick. It was very difficult for Joe to take all the pills for whatever was happening but once he got past it, he was ok with it and knew he would have to do some in order to get better.

During all this time we had to deal with his heart that was effected by the lc and we had to switch heart groups twice to find the ones that would help us. We finally have a group that work with us, not against us. His heart is fine now thanks to their caring medical team.

I have had to fight with our onc. group every step of the way and it was so frustrating, I really do not like to argue with people but when I have had enough, I let lose. We stayed with the group because of their reputation in our city and have many friends who have used them, but for us it has not been always pleasant. So, in January 08 our onc. dr. told us to go home and hospice will be called in. I said what! and he said he may have about 6 months. The only thing he would offer us is more combo chemo, knowing Joe could not tolerate it again.

When I tell a Dr. there is something not right about my husband, I mean it. I live with him and know him better than them. I can look at him and notice things that are not right and all I want is someone to listen. I can tell when he is not getting enough oxygen or if he has a fever and you do nothing, except to say it is part of the demon, that is bs, there may always be other medical issue, not just the cancer.

Yes, we know all the true facts about lc and the stats but Joe is not ready to quit fighting and hospice was a shocker. He is still mobile, just hurting all the time from the shingles and of course the cancer.

So, after we got over the shock, we decided to get a second opinion, knowing we may hear the same. Well, guess what, our new team of onc. are fighters for the patient but also to maintain quality of life while they try to figure out what may work for Joe. He is on Tarceva, thanks to Jamie on this site, who is our friend, who pushed us to ask. We were told he was not a tarceva candidate.

I wrote to much but it helped me release. Just remember to be pro-active and always ask questions.

Our new Drs. see me with my pad and they ask me what do I need to ask and do we understand everything they have said to us and is there anything that we need to repeat. It is so refreshing and I can also call them 24/7 to a direct cell number if I become panicked at anytime about Joe.

We just take each day that has been given to us and we are grateful. Joe is doing just ok and yes, he wishes he felt better but the pain is so tough. We are under a pain mgr. Dr. now through this new group to help us and that has been wonderful. He has had 3 nerve blocks, but they have not helped. We will go next week for ct scan and see where we are, so please pray for us.

Sorry I have been so lengthy but I felt your frustration in some matters and wanted you to know you are not alone.

Always-Kathy

[snappy]

I hope I can clear this up. I was so wound up some nights when I posted. Joe was to get taxol and Carboplatin every Monday for 6 weeks. At the same time he would be getting the radiation 5 days a week for 6 weeks.

This past Monday after they settled him down from the reaction, he was given the Carboplatin. Then told they would change the meds after he saw the doctor on March 14th. That is what did not set well with me. It was too long to wait.

The reason the girl set an appointment for Joe this morning was because as she talked to him on the phone, she wanted to be real sure he was okay since he had the reaction the day before. The symptoms were probably all normal from treatment.

Judy, that is interesting. Joe is getting the radiation okay. Only takes 5 minutes.

Thanks Kathy for posting. It wasn't too long for me. I related to the post and it provided me more input. I hope maybe the pain mgrmt can help your Joe. I know a woman that got help that way. My Mother had shingles at about age 85 and it still causes her pain but it is different when you get it at the later age. She is almost 92. Anyone that ever gets shingles should contact doctor right away if they know it and I think it is 48 hours that they can give you something so it is not as bad. Shingles can be very bad but won't go into it here.

Doctors sure are different. Sometimes, how do you know how good they are. Reading on this board will help me learn what options are or if something seems way off base. I am starting to get a few things. I am 64 years old and I want to quit having to learn all these new things that are not of my choosing. Lol! Thanks to all of you.